tag:blogger.com,1999:blog-72918542367702502262024-03-13T14:47:16.958-07:00The New Ampligen DiariesLatest Ampligen Treatment journal for M.E.Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.comBlogger34125tag:blogger.com,1999:blog-7291854236770250226.post-417018666620516482013-03-15T11:18:00.001-07:002013-03-15T11:18:53.058-07:00Everything I Needed to Know About Managing My Health I Learned at Disneyland
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<span style="font-family: Verdana, sans-serif;">The patient didn’t know it, but she was just <b>60 seconds away from relief.</b> Standing
at the doorway to Dr. Goldstein’s office with some PLO-gel glistening from her
forearm, she looked disappointed. Marie had been without significant sleep for
days, her fibromyalgia and M.E. pain flaring to the degree that the
“wired-tired” feeling dominated her fitful nights. Like most of us, she was
desperate, and had heard that Dr. Goldstein was <b>fast in both diagnosis and treatment.</b> <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">“Dr. Goldstein” she said with furrowed brows, completely
unaware that she was interrupting my appointment, <b>“I
don’t think this one is working either.”</b> Her forearms had lots of little
circles of goo on them, indicating a number of product tests were going on that
day. <o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">“<a href="http://www.plo-gel.com/Main/plo-gel.php" target="_blank">PLO gel</a> is a wonderful drug delivery system.” Dr. Goldstein
explained seeing my puzzled look. “It is much like the oft-maligned DMSO, which
every equestrian and horse trainer uses daily, safely. So Marie, how long has it been since
we applied that last one?”<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">Marie didn’t seem to hear.
She was focused on the words “<b>horse</b>”
and “<b>equestrian.</b>” <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><b>“You use horse
medicine on me?”</b> she asked incredulously. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Verdana, sans-serif;">“How many minutes has it been Marie?” Dr. Goldstein
persisted. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Verdana, sans-serif;">Still a little bit bugged by Marie crashing my appointment,
as well as the fact that she was using up <i>my</i>
time with the Doctor by standing there mute, I decided to help her.</span><span style="font-family: Verdana, sans-serif;">It came out more acerbic than I wished: </span><span style="font-family: Verdana, sans-serif;"> </span></div>
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">“If words fail you why don’t you just tap out
the answer with </span><b style="font-family: Verdana, sans-serif;">your front hoof?”</b></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">The stare I got back from Marie spoke volumes. Dr. G just
smiled at her, and looking at his watch said, “Let’s give it another minute or
two, Marie. Based on your other tests this NMDA antagonist should be unplugging
your pain signal right about now.” <o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;"><br />
“But I still am at 7 on the pain scale doctor, and…oh, wait, what it is going
on?…Dr. Goldshteehhhn…” <o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">With that, her voice trailed off, and without further ado
she gracefully slid down the wall that was supporting her, sat down on the
floor, and <b>started snoring.</b> <o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Verdana, sans-serif;">Dr. Goldstein immediately called for staff help, got her up
into a comfortable lounge chair, and said, “What are you feeling now, Marie?” <o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Verdana, sans-serif;">“Wonder…wonderful,” she slurred. “I feel no pain. May I go
back to sleep please?” <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">With a nurse giving Marie a blanket, Dr. Goldstein said,
“Yes, now that we found what works for you, you can sleep here the rest of the
afternoon.” Then he turned to me and
said with a sardonic grin, “Your turn!” <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">That which I experienced at Dr. Jay Goldstein’s office 10
years ago, is very similar to the aggressive approach to health management that
Rich Van Konynenburg suggested to me just 2 years ago. For both, in a word, <b>it all comes down to speed.</b> <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><a href="http://forums.phoenixrising.me/index.php?threads/a-tribute-to-rich-van-konynenburg.19577/" target="_blank">Rich Van K</a> put it to me this way almost 18 months
before he died: “Kelvin, at our age, to see if one medicine or therapy works. I
tweaked the methylation protocol on a daily, sometimes hourly basis until I
found the right formula for my body.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">For most of the first 2 decades that I battled this disease <b>I played by the rules.</b> I took my place
in line to see the doctor, and waited the months required to see him or her. I
followed package inserts and MSD sheets exactly. I waited weeks for the blood
work to comeback, and then waited months to see if one new drug, or one new
medicine, might work. Usually they didn’t, and usually I felt ripped off as a
result. <i><b>“Another half-year of my life just to find out that Valtrex doesn’t
help me.” </b></i><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">So beginning two years ago, I started what I call Kelvin
Lord’s Magic Kingdom “maximized experience” approach to managing my
health. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">You see, I learned something at Disneyland. As kids growing up in L.A in the 60’s, my sister and I
always wanted to be first in line at the <a href="http://www.theimaginaryworld.com/dtour03.html" target="_blank">Magic Kingdom entrance in Anaheim</a>. Thankfully, the Disneyland staff always
reinforced our early arrival idea, by shouting in the megaphone to those of us
who lined up before the gates opened: “ Congratulations kids! The early bird
catches the worm and by being first in line today you are going to <b>maximize your experience</b> at the Magic
Kingdom. “ <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Our strategy for this “maximized experience” was simple -
get on as many rides as possible, <b>in the
fastest time possible</b>, so that when the park closed 12 hours later, we had
done it all. That often meant racing to
the most popular rides, like the Matterhorn or Pirates of the Caribbean, the
moment they opened the gate, and cramming kiddy rides in between. Many times during my childhood my sister and I
achieved this feat, and actually experienced <i>everything</i> Disneyland had to offer at the time, exhausting all our
tickets, <b>all in one day. </b><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">When I left Charlotte in January of 2011, having finished a
full 52-weeks of Ampligen, I was leaving victoriously, with improvement in <a href="http://ampligen-treatment.blogspot.com/2011/01/learning-to-fly-again.html" target="_blank">a number of areas of my health.</a> Yet although I was indeed 60% better than
when I had arrived at the clinic, and though the Ampligen did the job as
advertised, the 40% that Ampligen
couldn’t fix was still problematic. But
I wasn’t in the mood or mindset to approach working on this 40% in the same
antiquated, draconian way I had in years past – that is, slowly and patiently,
waiting for doctors and labs and pharmacies to take weeks to do <i>anything. <o:p></o:p></i></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">So with Doctors blessings, starting 2 years ago, I made it
my mission to <i>try, test, and sample</i>
as many of the leading therapies and meds as possible<b> in a one-day window.</b> This was based on Dr. Goldstein’s and others
observations that “done correctly, except for ADs and other slow to peak drugs,
there should be no reason you can’t know if a medicine is working for you within
hours if not minutes.” <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Like Paul Newman’s character in <a href="http://www.imdb.com/title/tt0084855/" target="_blank">The Verdict</a>, I look at my
health each morning now and declare, “There are no other days. Today is the
day.” And then I proceed to change a
dose, augment a supplement, or try a new one. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">I know what you’re thinking. Making myself a petri dish for
real time lab experiments can be dangerous. Please note, I agree, and am not
advocating the wholesale abandonment of our doctors, or ignoring published
research. But let’s remember that <a href="http://en.wikipedia.org/wiki/Barry_Marshall" target="_blank">Dr. Barry Marshall </a></span><span style="font-family: Verdana, sans-serif;">discovered the amazing cure for ulcers only by ingesting a
beaker full of bacteria, and seeing how his body reacted.</span><span style="font-family: Verdana, sans-serif;"> </span><span style="font-family: Verdana, sans-serif;">Again, it comes down to how much time you
have- for me as a Baby Boomer with limited years left, </span><b style="font-family: Verdana, sans-serif;">I need to test these things fast.</b><span style="font-family: Verdana, sans-serif;"> Fortunately, by reason of
battling this disease for over 2 decades, I have accumulated some of the best
M.D.s in my rolodex, located all over the world, who work with me as I
experiment.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Time and space prohibits my detailing the hundreds of meds I
have tested on my body in this manner, so instead I will give you a snapshot of
a living, dynamic example of <b>Kelvin
Lord’s typical Disneyland Experience day</b>. This just happened a few days
ago: <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">It was the end of a long week, and 15 minutes before my last
appointment was going to arrive, I felt the <b>brain-fog</b> trying to return. That my
body was tired was a given. But I also felt my mental acuity diminishing. I was
having a hard time coming up with words that had more than one syllable. In the
old days, following the “rules” I had one recourse- go to bed and make it dark
in the room, and hope that in about 24 hours, I might feel a little better. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">However on my new “maximized experience” program, because I
needed to feel better NOW, in 10 minutes or less, here’s what I did: <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif; text-indent: -0.25in;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif; text-indent: -0.25in;">-Got a blue syringe and shot myself 2 ML of </span><b style="font-family: Verdana, sans-serif; text-indent: -0.25in;">B-12;</b></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif; text-indent: -0.25in;">-Changed the needle and gave
myself a shot of </span><b style="font-family: Verdana, sans-serif; text-indent: -0.25in;">Nexavir;</b></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif; text-indent: -0.25in;">-Injected .5ml </span><b style="font-family: Verdana, sans-serif; text-indent: -0.25in;">Glutathione</b><span style="font-family: Verdana, sans-serif; text-indent: -0.25in;"> IM;</span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif; text-indent: -0.25in;"><b>-Ingested two tablespoons full of </b>coconut oil;</span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif; text-indent: -0.25in;">-Chugged 8 oz. of fresh carrot, celery and </span><b style="font-family: Verdana, sans-serif; text-indent: -0.25in;">garlic juice</b><span style="font-family: Verdana, sans-serif; text-indent: -0.25in;">;</span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif; text-indent: -0.25in;">-Gave myself a coffee, nitazoxinide, garlic oil </span><b style="font-family: Verdana, sans-serif; text-indent: -0.25in;">enema;</b></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif; text-indent: -0.25in;">-Rubbed in
some topical </span><b style="font-family: Verdana, sans-serif; text-indent: -0.25in;">pregnenolone/DHEA;</b></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif; text-indent: -0.25in;">-Took a half-dose of </span><b style="font-family: Verdana, sans-serif; text-indent: -0.25in;">low dose naltrexone</b><span style="font-family: Verdana, sans-serif; text-indent: -0.25in;">.</span><span style="font-family: Verdana, sans-serif;"> </span></div>
<!--[if !supportLists]--><br />
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">The result? In less
than 10 minutes my body had more energy, my mind was refocused, and my emotions
were more peaceful. I had my meeting
with no problems, and even though it ran long, I could hang in there.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><b>Are you waiting weeks
or months</b> to get “permission” to try something that other patients or
doctors are using? Perhaps you should think about <b>speeding that process up</b>. Today when I read about a new treatment
that has promise, or see a blog post by a patient trying a new supplement, I no
longer file that away for 3 months from now. I send an email to one of my
doctors, ask him or her if I can try this, and take it from there. Often the
medicine is not available in the USA, so I figure out ways to get it through
different distributors. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">I have had meds delivered to me from Canada, Europe, South
America, Australia and New Zealand. For
those of us who are using Immunovir- you know that comes from Canada and
Ireland. Yes, there is a law in the USA that supposedly prohibits it, but
recent DEA rulings have indicated that they will not prosecute anyone for
personal use or importation of non-narcotic medicine from foreign sources if no
more than 3 months supply. Probably
because so many Seniors have been getting their meds from Canada, currently the
<a href="http://en.wikipedia.org/wiki/Online_pharmacy" target="_blank">DEA is not enforcing this prohibition. </a> <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">We also get meds from other sources. With my doctor’s
blessing I have treated the parasites I picked up in South America with a
medicine designed for horses- yes, veterinary grade Ivermectin. I get this at
the <b>“Tack” store for equines</b>. It
cost me <a href="http://ca.merial.com/horses/Eqvalan%20Gold%20paste%202.JPG" target="_blank">$12 for the horse version</a>. If I
had to get the human version in Europe called Stromectin, I’d be out $1200 with
shipping. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">The first time I took the horse medicine that came with a picture
of Clydesdale on it, </span><span style="font-family: Verdana, sans-serif;">I said to my wife as we sat down to dinner: “I don’t think
this is working.”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">“How much did you take?” She asked. “How many mgs?” <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Lowering my head and thrusting my front foot forward, I
pawed the ground three times, Mr. Ed
style. Tap - tap – tap. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">“Ah, 3 mgs. Good boy!” my wife responded, getting the joke. “Now
let’s get you some food. <b>You must be hungry as a…”</b><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment-->Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com0tag:blogger.com,1999:blog-7291854236770250226.post-71067585452450588672013-02-27T09:49:00.000-08:002013-02-27T09:49:03.323-08:00Having a Regular Day
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMcuBz8ce1EN2kFH1vMqrkVghTqvW3TYaYgClRTZMQxbDpUe2izlOc4lT1DWdTUNUmuVKUAZ9EF1eYagMe-1fET-gzFJ73kSKg2SNVxGx7Xytiwav8OYqVhqgrTTUMgH8LQIYqZzol0dQj/s1600/mr_magoo.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMcuBz8ce1EN2kFH1vMqrkVghTqvW3TYaYgClRTZMQxbDpUe2izlOc4lT1DWdTUNUmuVKUAZ9EF1eYagMe-1fET-gzFJ73kSKg2SNVxGx7Xytiwav8OYqVhqgrTTUMgH8LQIYqZzol0dQj/s1600/mr_magoo.gif" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The <b>timing of the blindness</b> couldn’t have been worse. It was
5:30AM. I was driving in a new town, on
a frozen highway, in the cold pre-dawn morning darkness, when it secretly crept
up on me. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I had just left the all night pharmacy having picked up a
few items on special my wife said we <i>really</i>
needed, and I struggled to get the defroster on. For some reason, the
windshield wouldn’t clear completely. But I motored on anyway. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I had been f<b>inished with Ampligen for almost a month now</b>,
and had moved to this city in the Rockies to live my post-Ampligen life in
health and clean air. Amazingly, my very first day here, by divine providence, I had found one of the best doctors in the
region, more than familiar with M.E. and more than ready to start me on a <b>Detox
program</b> and <b><a href="http://www.prohealth.com/library/showarticle.cfm?libid=17178" target="_blank">Methylation Protocol.</a></b> So I
had been on both these new treatment plans for a couple weeks, with no
noticeable side effects. That is, until that moment. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">As I passed a big intersection lit up by Las Vegas style
signage, it became obvious. The defroster wasn’t the problem. <b>My right eye was</b>! Just like a bathroom
mirror fogged over with steam, the vision in my right eye was completely whited
out. But surprisingly, I didn’t
panic. After having dealt with this
disease for over two decades, nothing surprises me anymore. Besides, it wasn’t my first experience with
temporary blindness.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>The last time one or both of my eyes stopped working </b>was
back in Charlotte, before or during the Ampligen trial. I was initially freaked out about it- but Dr.
Lapp reassured me that when the drugs or our immune systems start defeating the
bugs or viruses, their decaying corpses are often so toxic to our systems that
side effects like temporary blindness are not uncommon. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">So although driving with one eye is tricky, that morning I was
neither worried nor concerned. After all, I’d been here before. The blindness
passes, I told myself. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Besides, I thought, <b>this is evidence that the Detox and
Methylation are working!</b> So I continued
down the road, Foo Fighters music blaring through my car speakers, oblivious to
the Trooper behind me – until, that is, the red and blue lights in my rearview
mirror lit up my car and every car in front of me as far as Wyoming. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">With 100,000 lumens radiating from that officer’s light
bars, the remaining vision I had in my left eye was now also completely ruined.
Knowing that police don’t normally let guys like <a href="http://www.freakingnews.com/pictures/71000/Stevie-Wonder-Driving-71481.jpg" target="_blank">Stevie Wonder</a> or <a href="http://farm4.staticflickr.com/3045/2909367667_43e82856fe_z.jpg?zz=1" target="_blank">Ray Charles</a>
get behind the wheel, I forced my
eyelids open in an effort to look “normal” to the officer. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The Sheriff’s Deputy who approached my window was very nice.
He kindly explained the speed limit situation and offered that as I was new in
town, he’d let me go with a warning – but he needed to see “<b>my proof of
insurance</b>” first. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Now I don’t know about you, but even on a good day, with
clear vision, finding registration <b>paperwork in my glove compartment is a
challenge</b>. That morning I just used the sense of touch and felt for what
I <i>thought</i> was my insurance paper. Blindly grabbing what felt like the right
document, I cheerily handed it to him with an overly enthusiastic “there you
go, officer!” <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Minutes later he was walking back to my car, with my warning
in hand. But wait! <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Did I see him <i><b>chuckling</b></i>
as he approached my drivers’ side window again? Sure seemed like it. When he spoke with a giggle in his voice, I
knew something was up. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">“Sir,” the Sheriff said, “here’s your paperwork back, and
the warning for the speed. If you’ll just sign here we’ll get you safely back
on your way.” <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">As I grabbed the paperwork back and signed the ticket, the
Sheriff added: <o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">“By the way sir, you may want to get that proof of insurance
card in order, “ he said still grinning.
“<b>The next officer who stops you may not want what you’re offering.” </b> <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Looking down at the document in my hand revealed why the
Sheriff was chuckling. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">At the top of the paper I thought was my proof of insurance,
in big, bold 14 point Arial type was the Walgreen’s Pharmacy coupon headline
staring back at me: </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b><br /></b></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;"><b>“Save $5 When You
Buy Four Fleet Enemas!” <o:p></o:p></b></span></div>
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<br /></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">With the Deputy still grinning and stopping traffic for me,
like <b><a href="http://www.youtube.com/watch?v=t8GTHXTEvIc" target="_blank">Mr. Magoo</a></b> I slowly merged into traffic going about 1 mph, still incredulous that I given the
officer a coupon for an enema. </span><span style="font-family: Arial, Helvetica, sans-serif;">Yet the moment was not lost on this amazing officer. As I
pulled away with my window still open, I heard him yell to me:</span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;"><b>“Have a super regular day, sir!” </b><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">I got the joke, and chuckled out loud. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">Then a thought hit me. I didn’t yell it back, but it was
valid as I said it in my head nonetheless: <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;"> <b>“No one with this
disease EVER has a regular day, sir!” </b><o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">--------------------------------</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>Note to Readers and Dear Friends:</b> Thanks to all who have been tenacious in hounding me to post some updates. I appreciate your patience. In the upcoming installments I will share about my emergency
surgery last year, and why we should never ignore the “gut.” I’ll also be
detailing many treatments and protocols I’ve tried since completing
Ampligen. I took a real aggressive
approach to this over the past 24 months, sometimes working in as many as five
new meds or therapies in as many days. For those of you who are sick and tired
of waiting weeks or months to get your Doctor to let you to try something, look for the upcoming posts. <o:p></o:p></span></div>
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<!--EndFragment-->Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com2tag:blogger.com,1999:blog-7291854236770250226.post-65416559021874090722011-01-18T18:05:00.000-08:002011-01-19T05:20:57.648-08:00Learning to Fly Again<div class="separator" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg80U0Ygxr3rh_nyumlC5g0Yjb_4saZ1kK6UFgkrC30x9iIuadokXz8MSV9bnH3C2yaa_xYhj1YqRbHDF0nyhvfKzaHdcRTKbLAvFNVkg3KBySbljz2k0rkDHQ9NExoIHP-yqeR8QweTXNN/s1600/backflip+drawing.jpg" /></div><br />
<div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">I did it! The year on Ampligen is over, and I'm about to burst at the seams. <b>Would you join me now in celebrating my victory?</b> </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"> If you watched the NFL playoffs this past weekend you saw the New York Jets doing on the field what I have felt like doing all week - literally doing <b>backflips for joy</b>. I mean, these players were so happy, they were getting <b>airborne</b> like circus acrobats! Why? Because they defeated a so called "invincible" enemy - the N.E. Patriots. (To see a clip of the Jets flying and flipping <a href="http://www.youtube.com/watch?v=CFiQRUoSbY8">go here</a>. ) Those players weren't saying "look at me." They were saying with their somersaults and handsprings, to all the other NFL teams who had gotten punched in the mouth by the Patriots, <b>"Look! Those guys are not invincible. It was a war, but they CAN be beaten!" </b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">And make no mistake, the Ampligen protocol is very much a war. </span></div><ul style="font-family: Verdana,sans-serif;"><li><span style="font-size: small;">It's a war against a supposed "invincible enemy" that invaded my body;</span></li>
<li><span style="font-size: small;">It's a war against the "belief" that I am destined to be sick forever;</span></li>
<li><span style="font-size: small;">It's a war against doubt and fear, as the treatment itself can be worse than cure for many months. </span></li>
</ul><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">As those of you who have been following my blog and adventure the past year know, <b>for the entirety of 2010</b> I basically put my and my family's life on hold in order to move to a US city to receive 12 months of the "trial-drug" Ampligen. There is a good reason this medicine is defined as a "trial" - because it was one of the hardest things I've ever been through. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">By suffering from M.E. <b>you understand what a "trial" is</b>. Ampligen makes our normal trial even worse for the first six months. In addition to being pricked twice a week and feeling like you have a horrible flu for about 6 months, from the drug and virus reaction to the drug infusions I've experienced <b>sciatic nerve tremors, diarrhea, constipation, temporary vision loss, muscle aches, depression, loss of libido, loss of energy </b>(what little I had), and a lot more.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">During this trial I found out I knew curse words in languages I don't speak, and my wife learned when to stay away from me on bad days simply by watching <b>my eyes dilate</b>. If you really want the good bad and ugly details start with <a href="http://ampligen-treatment.blogspot.com/2010/01/my-ampligen-treatment-begins.html">my first infusion report here</a> on <a href="http://ampligen-treatment.blogspot.com/">The New Ampligen Diaries</a> and read through the year's "trials." </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">But despite all those physical side effects, and the concomitant emotional side effects, today as the battle draws to a close I have to say <b>yes, it was worth it! Ampligen delivered as advertised! </b>Although I don't have all the tests results from the clinic, by family's and co-worker's measurements, along with my own personal report-card, I am probably <b>70% better!</b> We have a saying at the clinic- "Ampligen doesn't cure you or fix everything, but it gets you close." To see the <b>before and after report card </b>scroll down to the bottom of <a href="http://ampligen-treatment.blogspot.com/2010/10/breaking-out.html">this earlier post</a>. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">But in short, after arriving here one year ago so sick I was barely able to walk, after one full year of Ampligen, today I am able to... </span></div><ul style="font-family: Verdana,sans-serif;"><li><span style="font-size: small;"><b>do my job </b>about 6 hours a day (from my laptop, on the phone and Webex with my staff around the country), </span></li>
</ul><ul style="font-family: Verdana,sans-serif;"><li><span style="font-size: small;"><b>go to the gym</b> and do a 45 minutes a day in resistance exercise, </span></li>
</ul><ul style="font-family: Verdana,sans-serif;"><li><span style="font-size: small;"><b>go to church</b> every Sunday, and stand a long time,</span></li>
</ul><ul style="font-family: Verdana,sans-serif;"><li><span style="font-size: small;"><b>even be funny</b> occasionally. </span></li>
</ul><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>I no longer have </b>canker sores in my mouth, no more swollen glands, <b>no more brain fog</b>, and I even went to an NBA game last Thursday night and stayed for 2 quarters! My <b>orthostatic intolerance has almost disappeared completely.</b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Yes, I still get tired by late afternoon, and but if I remember to get horizontal often during the day, even just for 10 minute bursts, I get new wind. Yes, my leg muscles do sometimes get sore, but nothing like they used to, and no more restless legs at night! </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">All in all, <b>the reward I am experiencing now was worth the risk.</b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">In that regard, by writing this post, <b>I know I am risking hurting some of my fellow sufferers feelings,</b> just by reporting the good news. I remember how bummed out I got a couple years ago when I read the testimony of a man who was completely healed of M.E. through an advanced anti-viral regimen in Europe - drugs that I had no ability or resource to get at the time. It made me feel all the more sick that day; and down. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Please understand my motivation here</b>. I am neither trying to make you feel worse, nor lobbying that you follow my path and try to get this drug. I promised my followers and readers to tell the whole story, from beginning to end, in complete candor. To be honest, when I started I expected to be an apologist AGAINST Ampligen. I was fully prepared to blow the lid off of a scam. Or even die. But in my case, it wasn't...and I didn't!</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>That it turned out so well</b> is something the journalist in me mandates I report, to give you some data. But more importantly, that it turned out so well is something the empathetic patient in me forces me to relate, <b>to give you some hope. </b></span></div><ul style="font-family: Verdana,sans-serif;"><li><span style="font-size: small;">Hope that these hideous bugs and pompous pain provokers <b>can be stopped</b>; </span></li>
</ul><ul style="font-family: Verdana,sans-serif;"><li><span style="font-size: small;">Hope that maybe very soon, there will <b>be drugs affordable and more readily available*</b></span> to all that really work; </li>
</ul><ul style="font-family: Verdana,sans-serif;"><li><span style="font-size: small;">Hope that these viruses, this enemy of ours,<b> is not invincible. </b></span></li>
</ul><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Like the NY Jets, I'm saying, <b>"Look, these viruses might have punched you in the mouth like me for years...but look! They can be beaten!" </b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Now I embark on a new journey. </b>A journey where I learn how to live again. In order to "seal" my healing, I'm staying in the USA a awhile more. I'm moving to a Western town near the Rockies not only for the clean air and non-toxic environment, but because of its proximity to things I used to love to do. Many of you know before I got sick I was pretty adventurous. I flew <b>aerobatic planes</b>, was a <b>flight instructor, </b>won some awards<b> soaring in gliders, </b>and<b> loved to ski and parasail. </b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">I'm not sure I'll actually be able to do all these sports again, but I'm going to give em a shot. Because all of these sports have one thing in common- done correctly, <b>you don't need the energy of a teenager or the strength of NY Jet to get airborne.</b> You just have to know how to use gravity to your advantage. </span><br />
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<span style="font-size: small;">So I'll be spending the next year or so <b>learning how to fly again,</b> with my new body. I promise I'll keep you posted on my progress, and as always, the times I mess up as well as the times of victory. </span><br />
<span style="font-size: small;"> </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>As both a victory celebration, </b>and a vision for what I hope to be able to do again this coming year, I've put together a 4 minute You Tube music video entitled <a href="http://www.youtube.com/watch?v=5BXYc8Pddmg">Learning to Fly Again</a>. <b> </b>It motivates me every time I see it and hear the Foo Fighters music. I hope it does you too. </span><br />
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<span style="font-size: small;">*I'll have some exciting news about this in my next post. <br />
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</div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com12tag:blogger.com,1999:blog-7291854236770250226.post-21139334110485949722010-10-27T08:56:00.000-07:002010-10-27T08:56:00.992-07:00Breaking Out!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtEFkzaDvVAUdjHaY3E9Cp5kJN4vdc12YgyIKLOkav_Un2RsS0hrh-qcwi4AQGM_zPNVX2O7jHq0D8BYETy-4kI4Hfckqi8GZsQ5kT18YXauFSKl1t2IPsfYMgE2UMQiQJ53HtCczjOde7/s1600/prison-escape1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtEFkzaDvVAUdjHaY3E9Cp5kJN4vdc12YgyIKLOkav_Un2RsS0hrh-qcwi4AQGM_zPNVX2O7jHq0D8BYETy-4kI4Hfckqi8GZsQ5kT18YXauFSKl1t2IPsfYMgE2UMQiQJ53HtCczjOde7/s200/prison-escape1.jpg" width="200" /></a></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>There was a prison breakout</b> in the USA this past weekend of historic proportion. And like most escapes that require patience and tenacity, this one took 10 long months of preparation. But when the time came, the escapee acted almost without thinking, and ran with freedom in his eyes, and hope burning in his heart. No, this isn't the story of a convicted felon escaping from the County jail. Although it did have to do with a guy escaping from his incarcerated state. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">This is the story of me, doing something <b>absolutely insane</b> this past weekend. Something that was seminal to my progress, critical to my healing process, and something I felt I just <i>had</i> to do. After 10 long months being "stuck" in this place, last Thursday, I made a run for it. I escaped! </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">On a whim, after my Ampligen infusion last Thursday I went to the airport, bought a ticket for a 4 hour non-stop flight, and flew to Denver, Colorado! <b>By myself!</b> I then rented a car, drove an hour North, and spent the weekend in beautiful Ft. Collins, enjoying the crisp clean air underneath the majestic Rocky mountains.Yes, this means that I had enough energy and cognitive ability to follow a map to a place I'd never been, check into a hotel, and live at mile-high altitude. Yes, this means that <b>the Ampligen is working better than advertised, </b>and that my health is actually being restored. But it also meant something else of equal importance. Let me explain. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>To say I have </b><b>felt like a horse cooped up in a corral</b> for the past 10 months would not be an exaggeration. As you know, when I moved here to begin the twice-weekly Ampligen infusion protocol, I could barely walk. Because my wife couldn't stay with me full time in this new town, we hired a cook and a maid to help me. That <b>I needed this level of assistance</b> when I started was not over-kill; I literally could not stand long enough to fry myself an egg ten months ago. Apart from going to the clinic every Monday and Thursday to get pricked by Gwen, for the first six months I was pretty much a one-trick pony. Week after week I would <b>live on the couch</b>, leaving my "pen" only to go to the clinic, and occasionally to church on Sunday. Having the helpers was awesome, but I still felt like I was in a modern prison. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">As I've written about previously,<b> after 6 months</b>, <b>something changed</b>. The side effects started to abate. Energy slowly returned. I initiated a very slow program of exercise, walking and going to the gym near my apartment. I stopped the services of my cook, and began shopping and cooking for myself (bachelor-style). I let my maid go, and have lived without help for over 6 weeks now. In short, <b>I started to experience a taste of "normal" life</b> - a <i>free</i></span> life - for the first time in a very long time! But that small taste of freedom presented me with a problem.</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">You see, although I was actually starting to take baby steps toward living a <i>healed</i> life, as clearly evidenced in my actions and in my body, my mind was still 'stuck' in protective mode; "sick" mode. Call it habit or fear or both, even though I could see myself making lots of progress, I was still <b>scared.</b></span></div><ul style="font-family: Verdana,sans-serif;"><li><span style="font-size: small;">Scared that the healing would be short-lived;</span></li>
<li><span style="font-size: small;">Scared that if I did just <i>one more</i> thing, I would crash; </span></li>
<li><span style="font-size: small;">Scared that after all this time, I wouldn't <i>remember</i> how to live!</span></li>
</ul><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">That fear and self-protection habit was like a chain around my heart. If faith is the evidence of things not yet seen, then fear is the doubt of things already known. And I clearly was still acting like a sick person, imprisoned by my limitations. Even though the evidence said otherwise. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>It came to a head last week</b> when a social activity was presented to me and I turned it down immediately...<b>out of habit!</b> Despite all my test scores and charts* showing amazing progress, despite 6 full weeks of living independently and going to the gym everyday with energy, despite aching for friends and social interaction, when they asked if I could go, I said as I had so many times in the past, "<b>no, I better not." </b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Ten seconds later it hit me</b>. "What was I thinking????" I had gotten so good at living "within" my limitations, I couldn't break out of my limitations. <b>I was an expert at living like a sick person! And it infuriated me. </b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Here I was at Week 40 on the Ampligen protocol</b>, with 20 years of published research telling me that people were healed on Ampligen by Week 40, yet I still was on guard. Here I was with six full weeks of independent living, yet I was still playing it "safe." Like the men released from prison who still sleep on the floor after being released from incarceration, even though they now have a bed, <b>I was trapped by the habits learned over years of sickness</b>. Those habits protected me at the time, clearly. They probably kept me alive. But now, they were like quicksand, keeping me "stuck" in a place I should no longer be. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Years ago, long before I got sick, <b>I was trapped in quicksand once.</b> Well, more accurately, my horse Gypsy was trapped in quicksand, with me on her back. Both the horse and I knew the serious trouble we were in, as we sank immediately up to the top of my boots, and then kept sinking about an inch per second. Gypsy thrashed at first, but that only made things worse. Thankfully, I was with an experienced equestrian, my best friend Ed, who as a cowboy in Arizona knew exactly what to do. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Dismounting and coming over to me while still on dry land, he leaned carefully over, grabbed the reins from the bit, stood slightly to the right in front of Gypsy's good eye, and smiled at her. By this time the quicksand was inching close to my knees, and both the horse, and I, were getting nervous.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Then Ed said something I thought at the time was the most ridiculous thing I could have heard at that moment.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">"<b>We have to get her mind off the sinking, and on to the running.</b>" Ed said seriously. "She's a racer at heart" he continued, "so we have to get her brain out of that there quicksand, and her body will follow."</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Because Ed was my only hope, I decided against vocalizing either my doubts about his idea, or asking him why he said "<i>that there</i>" when as a Scottsdale native his English was normally otherwise perfect. Instead I just asked "How do we do that?"</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">"<b>Well, on the count of <i>tree</i></b>" Ed said smiling, clearly enjoying this cowboy twang he decided to adopt at this moment, "I'll fire off my pistola here, and you give her a good kick in the hindquarter with your spurs, and she'll think she's in a race, and just run right out!" </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Ignoring the fact that I wasn't wearing spurs</b>, and only because I had no other bright idea, I did what Ed said. Pulling my legs out of the muck slowly and positioning my boots backwards, when Ed reached the count of "tree", I gave Gypsy the hardest kick I could muster, just in time for her to hear Ed's .357 "crack" like an explosion.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Amazingly, Gypsy did exactly as Ed had predicted</b>. In one giant thrust, she jumped or hoisted her front legs violently out of the muck up onto the dry land, leveraged her remaining 2000 pound rear out of the quicksand, got her back legs grounded, and took off running! With me grabbing her mane and holding on for dear life, we ran around that bog in a giant circle at least three times - Gypsy so thrilled with her freedom and the thought of racing that she simply carved her own curved track in the desert! </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Leaving the clinic </b>this past Thursday, the thought of facing another long weekend alone in my apartment, combined with the recollection of my stupid knee-jerk rejection of a social invitation, was enough to make me say to myself, "enough!" I had to break out of this place I was stuck in. I had to get my mind out of the muck. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">I didn't have the sound of a gun going off to snap me out of it. But I did give myself a giant kick in the butt - and when I boarded that plane to Denver, I started to feel my legs find solid ground. When I got off the plane with no luggage whatsoever, and entered that gorgeous DIA terminal, you couldn't stop me. I jogged down the ramp grinning from ear to ear, passing the people mover like I was Gypsy, out of the sinkhole, racing again. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Until this past weekend,</b> I was sort of stuck in a quicksand of my own making. And I needed something to get "<b>my mind off the sinking, and on to the running.</b>" Because just like Gypsy, <b>before I got sick, I too was a runner at heart.</b></span> </div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">This short spontaneous trip to Denver did it for me, and it was glorious. I had a super three day vacation, with no pain, no loss of energy, no feelings of being stuck. When you compare my life to where I was 10 months ago, it's almost miraculous! Yet of all the tests I've taken, this was the test that really confirmed for me this amazing drug<b> Ampligen is really working! </b></span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Now for these final 3 months of treatment</b>, I know what my job is. As long as I can <b>keep my brain out of <i>that there</i> quicksand, my body will follow.</b></span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">*Below is my personal comparison chart that shows my progress over the past ten months, comparing when I arrived and started Ampligen in January, and today. The clinic keeps detailed records and measures all Ampligen patient's progress through a number of empirical tests, regular blood work, EKGs, a running <a href="http://en.wikipedia.org/wiki/Performance_status">Karnofsky Score</a>, and other physical exams and tests. However that information under the terms of the "trial protocol" cannot be revealed here. My guess is that the chart below would simply confirm that which the clinic has in their records about my progress. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b> </b></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZe-Si8ZIvT7Y496YaT7XE-NCXwvl9W3aT49SChAq3BVetPva72dZIDw57Fw9VQwblws3aoW7YZuCxhr-A-8Eh43XivDVDn20-6GbH2OrP1MA1Ma65WSq52yklgtCRa5Qh5TMysqpRECBI/s1600/Comparison+Chart.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZe-Si8ZIvT7Y496YaT7XE-NCXwvl9W3aT49SChAq3BVetPva72dZIDw57Fw9VQwblws3aoW7YZuCxhr-A-8Eh43XivDVDn20-6GbH2OrP1MA1Ma65WSq52yklgtCRa5Qh5TMysqpRECBI/s400/Comparison+Chart.jpg" width="400" /></a></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b> </b></span></div><br />
<div class="separator" style="clear: both; text-align: center;"></div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com4tag:blogger.com,1999:blog-7291854236770250226.post-74244717122366995152010-10-01T13:48:00.000-07:002010-10-01T13:48:12.847-07:00Interview with Dr. Lapp - A Pioneer and Patriarch<span style="font-family: Verdana,sans-serif; font-size: small;"></span><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5vkHD4khgrrZxsRooICm2ZC9-aq6GzvygAZZGzgELCkNi05QXGtBoF5JVTq2EQm54qesXtidlo-1VTEYgc6L2bHzWAOOIaiY3uyYQCIz8dx-ZnEXE0wIcr0zTVFOIgWJPanJ3q9_rb5zC/s1600/dr_lapp.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5vkHD4khgrrZxsRooICm2ZC9-aq6GzvygAZZGzgELCkNi05QXGtBoF5JVTq2EQm54qesXtidlo-1VTEYgc6L2bHzWAOOIaiY3uyYQCIz8dx-ZnEXE0wIcr0zTVFOIgWJPanJ3q9_rb5zC/s1600/dr_lapp.jpg" /></a></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>To give you an idea how long Chuck Lapp</b> has been serving the CFS/ME community, think about this - Before Steve Jobs invented the Macintosh Computer, Dr. Charles Lapp was contacting the CDS about a mysterious new illness. Dr. Lapp has been treating and specializing in CFS patients for over 25 years. He was one of the founders of the CFIDS Association in Charlotte, and continues to be one of the leading physicians in the field, always on the cutting edge of new therapies and drug trials. In the USA today, only 2 physicians are administering the drug Ampligen, Dr. Lapp in Charlotte, and Dr. Peterson in Reno. We caught up with Chuck Lapp as he was on his way to a speaking engagement in Atlanta. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Kelvin</b>: Dr. Lapp, you have been specializing in this disease for over two decades, and moved to Charlotte in the early 1990's to team up with Dr. Cheney to launch the first group of physicians who took this infirmity seriously. Tell us about those days. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Dr. Lapp</b>: I saw my first patients with this disease in 1983, and began researching CFS in earnest in 1985. I made contact with Paul Cheney at that time and we started seeing patients together around 1988. Although at that time I was commuting back and forth between Raleigh and Charlotte, where I ran a large family practice. In late 1991 I moved full time to Charlotte, where the Ampligen studies had just begun, and I was placed in charge of the Ampligen patients. Dave Bell joined us for 2 years as I recall between 1989 and 1991. Dr. Myra Preston also shared office space with us. When Marc Iverson's CFS support group started growing, we used it as the base for launching what today is known as CAA or the CFIDS Association. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Kelvin:</b> You mentioned in the past that in those early days, you and Cheney were trying everything you could think of to help CFS/ME patients. Like Edison with his light bulb, you had many things that did NOT work, and some that did. Tell us about some of those. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Dr. Lapp</b>: I counted it up and there were over 120 "ideas" we tested or researched, based on what we read in journals, or heard at meetings with other physicians. As you know, in those days, very little was known about the disease, so we were trying everything we could just to help patients. For example some of the treatments we discovered that <b>did help </b>included: </span></div><ul style="font-family: Verdana,sans-serif;"><li><span style="font-size: small;">B12- helped</span></li>
<li><span style="font-size: small;">Dietary changes- helped</span></li>
<li><span style="font-size: small;">CoQ10 and Krebs Cycle intermediates such as malate and magnesium-helped</span></li>
<li><span style="font-size: small;">Aquatherapy-usually helped a lot!</span></li>
<li><span style="font-size: small;">Of course beginning with the trials in 1991, Ampligen showed great promise</span></li>
</ul><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Some of the things that <b>did not work</b> out well included: </span></div><ul style="font-family: Verdana,sans-serif;"><li><span style="font-size: small;">Oral Interferon- some patients got worse</span></li>
<li><span style="font-size: small;">Ambotrose/Mannatech- no help</span></li>
<li><span style="font-size: small;">Heparin for presumed excess histamine and coag problems - no help</span></li>
<li><span style="font-size: small;">Ocytocin- minimal help</span></li>
<li><span style="font-size: small;">Treating oxidation radicals- no help</span></li>
</ul><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">I should tell you that there were loads of "theories" floating around as well, many of them we put to the test. For example, NONE of these theories panned out: </span></div><ul style="font-family: Verdana,sans-serif;"><li><span style="font-size: small;"> "AIDS Minor" or idiopathic C4 Lymphophenia</span></li>
<li><span style="font-size: small;">Sedimentation rate as a marker for CFS</span></li>
<li><span style="font-size: small;">Urine pH as a marker for CFS</span></li>
<li><span style="font-size: small;">Stealth (foamy) virus</span></li>
</ul><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Kelvin</b>: With almost 20 years experience treating patients with Ampligen, in general what results have you seen? </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Dr. Lapp</b>: You know that FDA regulations limit what I can say publicly- during a trial period we are restricted as to what we can reveal about any drug before it receives approval, so I have to be careful here. On our site at the Hunter Hopkins Center we quote the Medical Director of Hemispherx Biopharma who said based on their research "<b>Ampligen may be the first drug to demonstrate safety and effectiveness in the treatment of CFS</b>." But I would tell you that our overall experience with Ampligen has been good. We have patients who have made remarkable improvements; patients who have made modest improvements, and patients who have made no improvement at all. Overall the drug has been well tolerated. I cannot recall anyone who got worse on Ampligen. It is interesting to note that with the latest news whirlwind regarding CFS and the XMRV virus, that in early September 2010 Hemispherx posted a study where test subjects receiving Ampligen who were XMRV antibody positive performed better on exercise tests than the others. We're still waiting for more data on that, but readers can see all the details on the <a href="http://www.cfids.org/xmrv/default.asp">CFIDS Association</a></span> website. </div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Kelvin:</b> What makes Ampligen different than all the other treatments you've used over the years? </span><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Dr. Lapp</b>: It is not clear how Ampligen actually works, but the drug is known to have antiviral and immune modulating properties. Preliminary studies ahve shown activity against retroviruses (like HIV) as well. Ampligen also modulates interferon-induced RNaseL and PKR antiviral systems of the body, which have been closely associated with CFS. Most importantly, Ampligen is the only medication that has undergone rigorous study for the <i>treatment of CFS</i>, not just treatment of <i>CFS symptoms.</i></span> </div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Kelvin</b>: You don't accept all patients who want Ampligen. What makes for a good Ampligen candidate? </span><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Dr. Lapp</b>: The only way to obtain Ampligen today is to enter an FDA-approved research study known as AMP-511. This is a cost recovery program, which means that researchers are required to recover the cost of treatment from the patient. Previously this program was known as "compassionate care." This type of program requires patients be very ill and have not responded to reasonable previous treatments. specific exclusionary and inclusion criteria are specified by the FDA, and can be viewed by going to www.clinicaltrials.gov and search on <a href="http://www.clinicaltrials.gov/ct2/show/NCT00215813?spons=%22Hemispherx+Biopharma%22&spons_ex=Y&rank=2">Trial NCT00125813</a>. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Kelvin:</b> Dr. Lapp, you are one of the few Doctors who has not only met Dr. Carter and the rest of the lead staff at Hemispherx Biopharma, but have had a relationship with them for almost 2 decades. What in your opinion is the future of Ampligen? Can you give us any hope that it will be approved, and finally made available to patients beyond the "cost recovery" program? </span><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Dr. Lapp</b>: Yes, I can. Again, I am limited by regulation as to how much I can say, but let me say this... Last December the FDA responded to Hemispherx's New Drug Application with a "Complete Response Letter." This letter provided recommendations for improving the application, which implies that the drug is ultimately approvable. The Complete Response Letter suggested that Hemispherx perform one more study and clear up some questions about drug safety - specifically effects on immune activation and carcinogenicity. Dr. Carter, Dr. strayer, and senior members in the company all indicated that Hemispherx wants to pursue approval and has the wherewithal to do that. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Kelvin:</b> When I search "Google Scholar" I see there are a number of published, journal articles on the efficacy of Ampligen in combination with other drugs. For example, last year during the swine flu scare, Ampligen was shown to augment flu medications, and make them work faster. In the future, if Ampligen is approved, could you see patients using Ampligen in combination with other treatments? </span><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Dr. Lapp: </b>Oh yes, absolutely. In the early days of CFS research, all the CFS guys and all the HIV guys would meet together, because Ampligen could potentiate so many of the AIDS medications. We've known this for years. So once approved, combination therapy with Ampligen would be a natural, a given. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Kelvin</b>: OK, Dr. Lapp, last question. You are known for your compassion for patients with CFS/ME. You often absorb your own incidental costs related to Ampligen infusions, you have been known to let out of town patients stay at your home, you have resisted raising your prices for years, and you even have made house calls. What is the root of that generosity? </span><br />
<span style="font-size: small;"> </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Dr. Lapp</b>: Well, you know I have great empathy for CFS sufferers. I don't know that "generosity" is the right word though. More appropriately it is a desire to find a cure for this heinous illness and to make promising therapies available and affordable. The cost of receiving Ampligen in our clinic is $2000/month and many insurers will cover a large part of that cost. All medicine is expensive these days, but when you consider that the costs for treating rheumatoid arthritis, MS, cancer and other disorders are many times more expensive, it puts it into a different perspective I guess. We do all we can here to make treatment as affordable and available to our patients as possible. We have had patients come here to Charlotte, move here in fact, from all over the world, to get Ampligen. One of the things I love telling potential patients who are considering Ampligen is how compassionate our entire staff is. As hundreds of her followers and patients know, Dr. Black, who also administrates <a href="http://www.facebook.com/HunterHopkinsCenterFans">our Facebook site</a> has a special empathy for our patients. And all of our Ampligen patients know and love Wendy, who they see twice a week for infusions. She is literally sticking them with needles every Monday and Thursday, and yet they all smile when they see her! I think that's what sets our office here at <a href="http://www.drlapp.net/aboutus.htm">Hunter Hopkins Center</a> apart from others. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Kelvin</b>: Thank you Dr. Lapp. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
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</span></div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com0tag:blogger.com,1999:blog-7291854236770250226.post-38391380779453164902010-08-31T13:11:00.000-07:002010-08-31T15:04:08.437-07:00Exercising Discipline<div style="font-family: Verdana,sans-serif;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgniOL_YbgWtHKhfBHzglOJhjyO7_t7vyUaRuHNbEm8xcSnlmtF7QHsftzZ8PZ3g1tPc3wSuEdwk2AxNeizA9pHx0DrSFSPN0hhcn4_oKNxiR9mwEFbrI86dBXc_UKMMKsI09Xs6qek6FXg/s1600/chinups.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="186" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgniOL_YbgWtHKhfBHzglOJhjyO7_t7vyUaRuHNbEm8xcSnlmtF7QHsftzZ8PZ3g1tPc3wSuEdwk2AxNeizA9pHx0DrSFSPN0hhcn4_oKNxiR9mwEFbrI86dBXc_UKMMKsI09Xs6qek6FXg/s200/chinups.jpg" width="200" /></a></div><span style="font-size: small;"><b>I absolutely hated gym class </b>in Junior High. I was a skinny kid growing faster than my Mom could sew, </span>and I had no arm muscles whatsoever. So when the dreaded "physical exam" days came around, I usually got physically sick. Trust me, vomiting cereal before you have to do pull-ups does not help your score. But it didn't matter. Because <b>I could not even do one pull-up,</b> even on a good day, with my belly full of Captain Crunch. When the diameter of your arms is smaller than that of the pull-up bar itself, the bar will win every time. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>What made it such a trauma</b> for me was that you had to do these supposed "feats of strength" in front of both the gym teacher, <i>and</i> your classmates. And here was the rub: You had, as the teacher would always announce in that bellowing voice, "<b>a full 60 seconds to do as many pull-ups as you possibly can!" </b></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">Well, when you can't do even one pull-up, <b>having sixty full seconds isn't an advantage, it is just out and out child abuse</b>. I mean, how long does it take me to do zero pull-ups? I'll tell you straight out- <b>about zero seconds</b>. But yet there I was, hanging by my skinny saplings called arms, humiliated, with all my friends snickering for what seemed like an eternity. And my masochistic gym teacher with his stopwatch and mocking attitude actually making me hang there for a full sixty seconds, shouting "<b>come on, you can at least do one!" </b>Mercifully, I finally heard him click that stopwatch, and say robotically, "Exercise complete." </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>It's funny how the very same words can be either cruel or motivating, </b>depending on the delivery.<b> </b>For years, that memory, and the teacher's shout, haunted me like a bad dream. Until of course, I got to college, started eating Freshman portions, and allowed my fraternity brothers to teach me about weight lifting and exercise. <b></b> The very first time I had an upperclassman show me the benchpress, he was spotting me, and that weight came down on my chest like an anvil. But with true belief in his voice, plus a little testosterone, he said, "<b>Come on, you can do it! Do just one! </b>All it takes is a start!" And to my surprise, I actually pushed that 135 pounds off my chest, and back into the rack. His belief in me, and seeing other guys benefiting from exercise, was all I needed. My commitment to exercise began that day in college as a 17 year old freshman. In one semester I went from being a gangly 6 feet, 140 pounds, to a muscular 6'1 190 pounds. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">From that day on, sports, fitness and exercise were part of me for a full 15 years, until I got sick. <b>But M.E. as you know, of course changed everything. </b></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>For the past many years</b>, and more dramatically in the months leading up to my starting Ampligen, I have watched my energy, and my ability to exercise, diminish. It got so bad, that when I arrived in this city to begin the Ampligen protocol, I couldn't walk from the airplane gate to the baggage claim. I was no longer 190 pounds. I had no muscularity left. I was barely 167 pounds of weakness with skinny arms. You could have given me a full sixty seconds, and <b>I still could not have done one pull-up. </b></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>But that's all changed now</b>. Today, seven months after arriving here and being almost completely bed-bound, I am exercising again! It started slowly, but for the past full month, I've been going to the gym now almost every morning. I give the credit to Ampligen, and the amazing new things it has done to my body. But I also approached exercise this time in a new way as well. I guess some would call it a "holistic" approach, in that I decided to exercise more than just my <b>body, but my soul and spirit</b> as well. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">It only makes sense. My doctor has told me for years that too much "mental" work is just as bad for me as lifting too many weights. I can crash after walking too much just as easily as typing too much. <b>Psychologists and theologians alike </b>teach us that our soul, which is comprised of our intellect, our will and our emotions, can affect our bodies, and vice versa. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>So here's how I've been exercising all three:</b></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>My Body</b>- <a href="http://cfsknowledgecenter.com/rey.php">Dr. Irma Rey</a>, Assistant Professor of Medicine and Sport Team Physician at the University of Miami, now working with Dr. Nancy Klimas says we should take a "<b>low and slow" approach to exercise</b>. Her research shows that especially for M.E. patients, we need to do exercises that are low in intensity, and slow in progress, so we don't crash. Because we have post exertional malaise working against us, because we build up lactic acid faster than "normal" people, we cannot exercise to exhaustion, or we will crash and burn big time the next day.<br />
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So Dr. Rey recommends a workout similar to what I've been using. Stretching, light short low weight lifting sets with long rest periods in between. If I do 1 minute of exercise, I wait a good 5 minutes to do the next one. And never do too much in one day. Dr. Rey recommends doing <b>2 short workouts a day</b>, to restore energy.<br />
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This is what <a href="http://www.dodonabooks.co.uk/html/about.html">Dr. Darrel Ho Yen</a> recommends in his brilliant concept of our thinking of <b>energy as money</b>. He says "Don't spend it all at one time, in one place." I've applied this concept to my exercise routine, and make sure if I spend an hour at the gym, fully 30 minutes or more of that is resting in between sets. But I also plan my entire day ahead of time, and count the walks I'll take, the time I'll be vertical in the grocery store, etc.And I don't want to "spend" energy on stupid things, like being in a long line at the bank. I'll do my banking online, thank you! Dr. Rey also recommends doing stretches in the pool, because the cool water can help blood pressure, and allow us to stand longer than our Orthostatic intolerance would normally allow us to do without the buoyancy of the water. The point is, even if your are stuck in bed- <b>do something</b>. Do stretches. Even if it's just one minute, her research shows that the benefits of stretching and releasing endorphins (which she says are more powerful pain relievers and mood elevators than opiates) are worth it. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>My Soul</b>- <b>Exercising my mind, my will and emotions</b> also takes planning, and for me, some sort of disciplined approach. So I make sure I plan my exercise routine for my soul each week as well. This includes playing some online mental stimulators like Texas Hold-em or Sudoku, trying to play the piano a little, participating in some online forums, and of course, listening to music.<br />
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My neurotherapist Kim Phillips told me for the sake of my sleep time, I should <b>not do these things at night,</b> because they stimulate my brain too much, and can keep me falling into REM. She also told me that sexual intercourse and orgasms release good chemicals. The other thing that exercises my soul pretty well is a good comedy movie. As they say, laughter is good medicine. The one thing I recommend you not do is watch too much talking head TV, like Olberman, O'Reilly, Beck, Maddow etc., because the negativity they spout actually counteracts the good chemicals that the aforementioned things stimulate. Similarly, if an online Forum moves from informative and supportive, to an <b>online debate, don't participate</b>. Just choose to not engage. As my doctor said, stay away from toxins, including toxic people. You don't need those chemicals right now. Exercise the discipline of your will and let good stuff into your soul. Not the negative. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>My Spirit</b> - This past Sunday, I decided I wanted to actually "go" to church, and participate in the worship service because I wanted to sing. Many Sunday's in the past, because of the debilitation of M.E., and because of Ampligen's side-effects, I would watch the services "live" on the Internet, from my bed. TV church isn't bad, but there is nothing like singing along with a 100-member gospel choir to lift my spirits, so if I have the energy, I go. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">The problem with that in the past has been, this is a classic <b>Baptist church in the Bible belt,</b> so there is no such thing as a 3-minute song a hallelujah and then you sit down. Oh, no, no, no- help me Lord! These songs all have 7 verses and 8 choruses, and then we do it all over again. It's lively. It's inspiring. It's a lot of fun. Most of all it is healing. <a href="http://www.scribd.com/doc/3861872/Singing-is-Great-for-Health">Dr. Graham Welch</a>, Chair of Music at University of London cites research that shows that when we sing, the brain and the endocrine system release healing hormones, endorphins, as well as cortisol and immunoglobulin. When you follow that with an inspired sermon that builds <b>my faith in God, and the future</b>, well, I leave feeling whole. But many Sundays, I just haven't had the energy reserves to get out of bed. Let alone stand with the congregation for all those songs. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">This past Sunday, really having a desire to sing and participate, I said to my wife, "I just don't know if I can do it." </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">"Do what?" she said, as she continued putting on her Sunday dress.</div><div style="font-family: Verdana,sans-serif;"></div><div style="font-family: Verdana,sans-serif;">"Stand there all that time and sing all those songs," I replied, remembering the choir. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">With echoes of past teachers and fraternity brothers bouncing around my brain, she said the only thing that I needed. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>"Then just sing one. At least you can do that." </b></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">And so we went, and that's exactly what I did. I sang one. Then another one. Then 5 more. For 45 minutes, non-stop, on my feet.<br />
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</div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com0tag:blogger.com,1999:blog-7291854236770250226.post-69506560832211138382010-08-06T07:28:00.000-07:002010-08-06T07:28:41.261-07:00Embracing Reality<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLqCV2aHduQcyr3NgHeu75pvbbDWerT5_j63R6NEETD-MTCDJG3al1WZDkpcxhKNrwpDfTx9tp16DQ845fSOqO71cvBJUrx6pHozBOAWXaNvvt9yoP1IfFG6ghDVGahkT7CZrHryykX8lE/s1600/slow+dancing.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLqCV2aHduQcyr3NgHeu75pvbbDWerT5_j63R6NEETD-MTCDJG3al1WZDkpcxhKNrwpDfTx9tp16DQ845fSOqO71cvBJUrx6pHozBOAWXaNvvt9yoP1IfFG6ghDVGahkT7CZrHryykX8lE/s200/slow+dancing.gif" width="186" /></a></div><div style="font-family: Verdana,sans-serif;"><b>I admit it.</b></div><div style="font-family: Verdana,sans-serif;"><b>I really blew it</b>, <i>big</i> time. Two weeks ago, after my last "glowing" report about how good I was feeling at the 6-month mark, I took it too far, and overdid it. I moved from the reality of my health, to a fantasy world of my own making, which convinced me I was almost healed. It was not only stupid, but because I knew I was only half-way through the treatment protocol, it was unrealistic. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">I've had this problem of moving into <b>unrealistic expectations</b> all my life, even before I got sick.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">I remember in the 5th grade, setting up my little home-built "<a href="http://www.estesrockets.com/">Estes" rocket</a> in the driveway of our Southern California home, convinced that I was launching something straight out of NASA. Based on the big color advertisement in Popular Science magazine, I had convinced myself that my "Explorer" rocket would fly straight up over my house, reach apogee, take a picture with its little onboard camera, fire off a parachute, and come floating down into my hands on a perfect trajectory. I was an astronaut! </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">"How cool!" I thought.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">Of course <b>it didn't turn out to be quite that cool.</b></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">After struggling for an eternity on aching knees with the little battery powered igniter that just refused to work, I finally had to do the unthinkable. <b>I asked my Grandmother Flo</b> to come over and help me. Now, you have to know, no 9-year rocketeer ever wants to have to ask his Grandmother Flo to help him do anything, but since she was the only person in our family who smoked, and had <i>fire</i>, I recruited her to my pyrotechnic team. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">"Do you have any experience with rocketry, grandma?" I asked semi-seriously. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">"No," she said, while taking a big drag on her 30th Viceroy cigarette of the day, "but that won't matter a whit. I'm game!" And even with her depression-era manner of speaking, I knew she was.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">"<b>Just take your lighter </b>and touch that fuse there, grand..."</div><div style="font-family: Verdana,sans-serif;">Before I could get the rest of "ma" out of my mouth, I heard a "whoosh" and saw a the Estes rocket scream into the skies. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">Well, in all honesty, to say I actually "saw" my rocket launch would be stretching it - I basically "heard" the thing ignite, and figured by the smoke and the surprised look on my grandma's face that it was airborne. So I looked up expecting to see it soaring, just like the color advertising and pictures on the box illustrated.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>Unfortunately</b>, by the time I got my head and eyes looking upward, my rocket was already floating down to earth, barely visible in the distance, about 1000 feet away, dropping like a dead bird right over Foothill Blvd. So I took off running. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>By the time I arrived</b> at the busy "touchdown zone" the cars on Foothill Blvd. had already completely destroyed my Estes Rocket. Had it not been for that tiny patch of cloth stuck on an oil patch in the road, (which I assumed was the "parachute"), I wouldn't have found it. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">When traffic cleared I ran into the road, picked up what was left of the debris, and dejectedly walked home. My grandma was there to greet me, grinning broadly with that Viceroy cigarette hanging out of her stained teeth. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">"<b>You did it!</b>" she shouted, while lighting up her 31st cigarette of the day. "That was great!"</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">"Grandma," I said sadly, "it was nothing like I imagined. I expected it to fly for a long time, and parachute back to me, like the picture on the box. Not just hear a 'whoosh' and have <b>the whole thing over in 10 seconds!" </b></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">"Oh, that's the problem with expectations," she said, taking another drag on that Viceroy. "It's a fantasy. But the expectations get us to a place where reality takes over...and <b>reality is always better than fantasy,"</b> she said. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">"Why is that?" I asked her, sincerely, no longer focused on her stained teeth, but genuinely interested in this Waltonesque wisdom. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">"Because, up until a few minutes ago," she said through smoke plumes, "you were just one of thousands of boys who only <i>dreamed</i> about shooting their very own rocket. But now, I bet you are the only boy in your school who can say they actually <i>did </i>shoot their very own rocket! And 25 years from now, you'll still remember this story, and the fact that it <b>only lasted 10 seconds won't matter a whit.</b>"</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>Grandma Flo was right</b> about everything. I <i>was</i> the only boy who could tell that story, and I milked it every chance I got...at least through Junior High. She was right about remembering it too. It's been more than 25 years and here I am telling the tale in detail as if it was yesterday. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">I guess <b>I still haven't learned how to control my great expectations though.</b></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">On the heals of the great report from my doctor and how good I was feeling after my 6-month evaluation, I had moved into fantasy world. I started imagining myself doing things again. I began to get into magazines that had bicycling and hiking themes, remarking to my wife that we should plan a trip to the Rockies. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">After being enthralled by a TV commercial about a jazz club opening in town, I foolishly remarked that maybe I would "take her dancing this weekend." Even though I was only half-way through my treatment, I started thinking and acting like I was already finished, and completely well. I was an astronaut again, flying rockets in <b>a dream world of my own making. </b></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">Then after about 4 days of this bliss, I woke up sicker than I had felt in a very long time. My glutes were killing me. My sciatic nerve was twitching. My back was so sore I couldn't bend over and touch my knees. My head felt swollen. I had brain-fog bigtime. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">I had <b>fantasized myself right into a huge flare</b>, and it was my own fault.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>I had forgotten that the "healing curve" on Ampligen</b>, or any therapy for that matter, is more like the stock market - up a couple days, down the third. The ups and downs vary day by day, but over months, the curve or slope is slightly up. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">As our systems adapt to the healing process and <a href="http://health.howstuffworks.com/human-body/systems/endocrine/adam-200092.htm">homeostatis</a>, we take three steps forward, and then two back. Even today, in my 7th month of treatment, I still have good days and bad days. But the bad days are getting fewer, the good days are increasing, and my healing slope is going up. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">But I forgot all of that 2 weeks ago, by not embracing the reality, and letting my dreams get ahead of wisdom. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">Doctors and researchers report that most patients who battle Myalgic Encephalomyelitis <b>are former A-type personalities</b>, super-achievers who, before getting sick, dreamed great things, believed amazing things, and created awesome things. We are personality types who are wired to set unrealistic expectations, distant goals, and then astound everyone by trying to actually reach them. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><a href="http://www.siberimaging.com/about.html">Kim Phillips</a> says that in 20 years working with CFS patients in neurophysiology therapy she has never <b>met one who wasn't brilliant.</b> Maybe you don't feel brilliant right now, but you are. Our minds and hearts are more than game...It's just that our bodies aren't cooperating right now.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">I confess, <b>I didn't feel brilliant</b> on the couch this past weekend, barely able to stand up. I actually felt like an idiot. But my wife helped me snap out of it.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">As I slowly limped into the kitchen, hearing a jazz favorite on the radio, holding back tears I said to her, "I really wanted to take you dancing this weekend, sweetheart."</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">"<b>So dance with me now</b>," she said, holding out her arms.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">And that is exactly what we did. For about 10 glorious seconds, which was just about all the energy I could muster, I danced with my wife in our kitchen. No, it wasn't in a fancy jazz club. No the music wasn't live. And it wasn't anything like I had imagined in my fantasy. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">But it was reality. And it was <i>mine</i>. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><span style="font-family: Verdana,sans-serif;">And just like my Grandma said, I have no doubt that 25 years from now I'll not only remember this dance, but I'll be telling this story in great detail - how I enjoyed embracing reality, by embracing my wife, and danced with her in our kitchen. <b>And the fact that it lasted only 10 seconds won't matter a whit.</b></span>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com0tag:blogger.com,1999:blog-7291854236770250226.post-78416336600860605282010-07-11T11:16:00.000-07:002010-07-11T11:21:27.673-07:00Tests Confirm It - Ampligen Works!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfsnoUGjT7A0D95jYHNHbfUZdcOFTelUhV1_ux8MS__6Qt5DI48ee7_j-lyUmkrKm7jIdMkxthCvwCihJPJiRSv_Cm2TmJvI2251GjlD5cTxal3snSJ7lGlCu2KDXwEVhrkZ8WtbopI-XO/s1600/piano_fingers.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="165" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfsnoUGjT7A0D95jYHNHbfUZdcOFTelUhV1_ux8MS__6Qt5DI48ee7_j-lyUmkrKm7jIdMkxthCvwCihJPJiRSv_Cm2TmJvI2251GjlD5cTxal3snSJ7lGlCu2KDXwEVhrkZ8WtbopI-XO/s200/piano_fingers.jpg" width="200" /></a></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">I have waited 6 full months to be able to say this, and the day has finally arrived. So here it is: <b>I know without a shadow of a doubt that Ampligen works.</b> As I finish my 24th week of Ampligen, I can say with confidence that this amazing drug has performed "as advertised," and then some.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>I know this</b> not only because of the numerous physical and mental tests I take at the clinic that tracks my progress and improvement, but most importantly for me, I know Ampligen is working because of my own, <i>secret</i> test. Let me explain.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Over 6 months ago I arrived</b> in this city after enduring a cold, cramped 16-hour overseas flight, barely able to walk from the plane to the baggage claim. My deterioration in health had gotten so bad I was barely able to get out of bed, so I came here as a last resort, leaving my home half a world away believing that this "experimental drug" called Ampligen was going to give me my life back. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Because of the flight,</b> by the time we arrived at the hotel, I was really sick. Ears ringing, glutes and legs aching, all I could think about was getting into bed with the lights off. As we scuffled along to the elevators, we passed a <b>baby grand piano</b> in the lobby. With hope in her eyes, my wife asked me "do you want to play a few bars, sweetheart?" I shook my head no, and managed to mumble a weak, sad, "No. I really can't right now," and continued into the elevator. Had I had any surplus energy, <b>I would have cried, seeing the look in my wife's eyes. </b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">You see, until recently, no matter how sick I felt, my wife knew that I could <b>always play the piano, and it would cheer me up</b>. And cheer my wife up too. But over the past few months, even that joy was taken from me, as just sitting at a piano bench hurt my butt. And the act of thinking about chords hurt my head.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>All of us who fight this disease</b> have varying degrees of limitations as a result of our infirmity. By reason of the insidious nature of the viruses that activate and invade our brains and our central nervous systems, pleasures we used to enjoy are stolen. We're on the lower leg of Maslow's hierarchy of need, and <i>survival </i>occupies all of our energies, with the disease slowly but surely stripping away all the rest. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>After a while,</b> if you've been sick for years, you end up forgetting what "normal" life is. Gone are the days when we'd walk to the market. We no longer workout at the club, because exercise like that makes us pay big time the next day. We don't cook that favorite recipe anymore, because standing at a stove for that long is impossible. <b>We don't play the piano anymore</b>, because strangely, we can't remember the chords and our fingers have lost dexterity. Studies show the disease is actually eating up our brains, as <a href="http://www.amjmed.com/article/S0002-9343%2898%2900161-2/abstract">evidenced by lesions</a>. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>That's what happened to me.</b> The last time I tried to play one of my favorite Bossa Nova classics, a couple months before we came to the clinic, I couldn't get it together. I was in the wrong key, my mind was frazzled, I couldn't remember the chords. So I quit, frustrated. As I stepped away from the keyboard, I made a vow to myself. <i>"If Ampligen works like they say it does, someday I'll be able to play this song again, without mistakes. <b>THEN I'll know everything is going to be all right.</b>" </i></span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Because<i> </i>of the documentary film</b> "<a href="http://en.wikipedia.org/wiki/Buena_Vista_Social_Club_%28film%29">The Buena Vista Social Club</a>" I knew that music in the brain had a special "place" and that music memory, and finger memory could survive periods of inactivity. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">In that awesome <a href="http://en.wikipedia.org/wiki/Wim_Wenders">award-winning film</a> by Wim Wenders, guitarist Ry Cooder tracks down an aging pianist in Havana named <b>Ruben Gonzales, </b>who was world-renowned before the revolution. But after Castro and communism took over, jazz clubs were closed, pianos were sold, and pianists like Ruben had to find work in other ways. In 1996 Cooder brings Gonzales to an old venue in Havana where there is still a working, almost in-tune upright piano. Because of Castro's prohibition and Gonzales' arthritis, it had been years since Ruben had played the ivories, and he looked tentative. But with Cooder's encouragment, Ruben sits down, places his weathered hands on the keys, and just starts playing like it was the 50's again. No mistakes. No hesitation. The voice over on the film goes on to say "<b>Ruben played like that for hours, non-stop, as if nothing had changed." </b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>It's been obvious to me </b>over the past few weeks, that things have been improving greatly in my body. I walked 5 blocks to the market this afternoon. I am now back at the gym, doing exercise every day, and I'm able to stand at the stove and cook again. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Yesterday at the clinic</b> they shared with me that all their tests showed I was making great improvement. From the results of my latest blood work, the physical exam, and numerous other tests, Gwen my nurse had no problem telling me that the <b>Ampligen was working. </b></span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>But I had one more secret test </b>she didn't know about that was still pending.</span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Back at my apartment</b>, turning on my vintage 1977 Fender Rhodes that I had shipped here on faith, I sat down on the hard stool, flicked on slight vibrato, closed my eyes, and felt the 9th chords by memory. Whether it was physical memory or muscle memory I can't be sure. All I know is, for the next 15 minutes, my aging fingers found enough of the right keys to <a href="http://www.youtube.com/watch?v=ZeVpOO4l4RM&feature=related">musically transport me to Havana, </a>and my soul warmed. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>As I watched my own hands</b> find chords and keys that just a few months before were evasive and confusing, I knew. My health was returning. The Ampligen was working. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Everything was going to be all right. </b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com7tag:blogger.com,1999:blog-7291854236770250226.post-79522823824489560542010-06-30T12:16:00.000-07:002010-06-30T12:16:20.555-07:00Read the Fine Print<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuux16VihAHBgPwYu4LTL__38zpF9IexTP7fsxlIuwidp1UyHm0WolYTVw5Ec_bSE-ZyhvFKYPz2NXUU3fhcMyRkBKyyTGhwYJQMUvbUf1o3WsmxRa6q4VyXxsb3c34oNQ0Q_20Picbv9t/s1600/fine+print+lady.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuux16VihAHBgPwYu4LTL__38zpF9IexTP7fsxlIuwidp1UyHm0WolYTVw5Ec_bSE-ZyhvFKYPz2NXUU3fhcMyRkBKyyTGhwYJQMUvbUf1o3WsmxRa6q4VyXxsb3c34oNQ0Q_20Picbv9t/s320/fine+print+lady.jpg" /></a></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>With my nose completely shut</b> due to allergies, out of desperation the other day I took an OTC antihistamine. It was Italian day at lunch and I had grown weary of not tasting any of my food, so ignoring the instruction panel I ripped open the package where the headline read "Daytime Safe Formula" and took the tiny white tablet without even a glance at the label. Big mistake. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">Exactly <b>twenty minutes later</b>, with my eyelids heavier than concrete and ravioli dripping from my chin, I lifted my weary, sleepy head out of my plate, and with all the effort I could muster, focused a magnifying glass on the small print on the side of the box and read to my dismay: "<b>Warning: May cause drowsiness.</b>" </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>"Whaaat?"</b> I said to myself, "this is supposed to be '<b>Daytime Safe</b>'! Safe for what - outpatient surgery? I felt like I had been shot with an elephant dart full of thorazine, and in tiny 4-point helvetica type they whisper "may cause drowsiness?" Whatever that stuff was, in my view it would have been much more honest to reverse the whole thing, and label it a "<b>Guaranteed to Put You To Sleep Medicine</b>" with a smaller mention of "May also help control your allergies." </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">Regardless of the intent, the combination of the misleading package headline and the <b>small print </b>on the instructions ended up costing me a half day of cogent thinking, as I sleep-walked through the remainder of the day. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>It could have been worse</b>. Some of the newer drugs advertised on television really scare me. Have you seen any of these commercials? Thanks to recent regulations, when a drug manufacturer advertises on TV they can't hide the fine print like they do on packaging, because the FDA makes them actually <i>say</i> all the ugly stuff on TV. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">For example, there's a new weight-loss drug by Glaxo Smith Kline promoted on TV called "<a href="http://www.myalli.com/">Alli.</a>" On the shelf in the drug store, you might be drawn to it. The box is cute, with rainbow colored lettering, all very easy to read and "safe-looking." The TV commercial has skinny people <b>frolicking in a field, wearing all white. </b></span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">But on TV, they are mandated to <b><i>say</i> all the fine print</b> that you wouldn't normally read, and it's pretty hilarious, if not frightening. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">"<a href="http://thewvsr.com/alli.htm">Side effects to Alli</a> include <i>gas with oily spotting, loose stools, more frequent stools, and stools that are hard to control."</i> </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>I don't know about you</b>, but no matter how much weight I lose, I've always found it difficult to look svelte when the <b>gas I pass leaves an oily spot</b>. And I'm thinking the last thing I'm wearing when I take Alli is white pants. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>I'm serious.</b> This is not hyperbole. Here are a couple more:</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>Requip </b>- a dopamine drug to counteract tremors: "<i>side effects include an unusual urge to gamble and increased sexual urges and behaviours." </i></span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">So it's either the shakes, or I turn into Hunter S. Thompson? That doesn't sound like a good deal to me. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>Accutane</b> - an acne medication: "<i>side effects include crying spells, rectal bleeding, and bone fractures." </i></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>Now I may not remember</b> all the details of my adolescence, but I'm pretty sure at age 14 that I probably would have learned to live with that pimple on my nose, if it meant walking my clean, acne-free face around high school with a broken leg in a cast. And yes, I admit it, macho-boy not withstanding, I would definitely be in tears, crying my eyes out, if I put the cream on my face and my butt started bleeding! Who wouldn't at age 14? </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>Reading the fine print</b> is even more important for us fighting this disease, because research has shown that with our immune systems in overdrive, or out of whack, our bodies often react quicker, or more strongly, to published doses.</span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>We also sometimes react to other people,</b> or other circumstances, differently, or more strongly as well. That's because our <a href="http://www.ingentaconnect.com/content/ben/cpd/2008/00000014/00000013/art00005">Central Nervous System</a> is under attack, and our "senses" are often attenuated. </span></div><div style="font-family: Verdana,sans-serif;"> <span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>Yesterday</b> a woman at the gym had her personal aerobics CD blaring from her iPod, not using her ear buds as is the policy, so I was forced to listen to what for me was like nails on a chalkboard. It wasn't the oldies music so much that I minded, but the invasion into my brain of the super-animated <a href="http://www.asseenontv.com/prod-pages/sweatin_box_set.html">Richard Simmon's</a> voice, urging me to "Come on!" a dozen times per minute. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">When I asked her to use her earphones "please!" she surprised me by saying "there's just two of us here, it's not that loud." </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>I couldn't believe it</b>. My ears were ringing, and she thinks it's "not that loud?" Right then my wife arrived and I thought I'd get reinforcements. As she got on the treadmill I asked her if the noise bothered her, and to my surprise and dismay she said, "<b>no, not really. It's not that loud."</b> </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>Not that loud? </b>To me it felt like Richard Simmons himself had taken up residency <i>in</i> my gym shorts, and had placed a megaphone an inch from my face screaming. At that moment <b>I saw myself in the wall to wall mirror,</b> with my eyes dilating, my brow furrowing, and the anger starting to rise. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">These were the "<b>side effects" of the disease</b> I battle, the "fine print" about my health that most people didn't see or discover until something like the Richard Simmons episode ignited them, or revealed them. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">Sometimes I can feel my heartbeat increase, and blood pressure rise. Other times I can feel the weight of a dark cloud. If I'm fortunate enough to be near a mirror, one sign that many of my doctors have confirmed is <a href="http://journals.lww.com/optvissci/Abstract/1997/08000/An_Investigation_of_Sympathetic_Hypersensitivity.27.aspx">pupil dilation</a>. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>My wife </b>has gotten used to these "side effects" and often snaps me out of them with focused little comments like "your eyes are dilating again" or "you look like every orifice in your body is about ready to burst." </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">That last one usually does the trick, because I can actually picture the scene. It always starts with me f<b>rolicking in a field, wearing all white. </b></span></div><div style="font-family: Verdana,sans-serif;"><br />
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</div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com1tag:blogger.com,1999:blog-7291854236770250226.post-41007395159526077502010-06-12T11:11:00.000-07:002010-06-12T11:11:04.991-07:00How Not to Become Invisible<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwc2EnWT5owB4voPBeLJUGjlm6DgmlVPorV0p_uOlS2jWIJ7_7nwNcT1J2UTz5KpDRpxwKP7Nwbfqu7hqkEh6XBHNekQHPUqy-oL1nS8uGXNhVr9jz0RunDLz6Mx1I5NqOuaMntIT6Nv_X/s1600/the_invisible_man_by_stevedore.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwc2EnWT5owB4voPBeLJUGjlm6DgmlVPorV0p_uOlS2jWIJ7_7nwNcT1J2UTz5KpDRpxwKP7Nwbfqu7hqkEh6XBHNekQHPUqy-oL1nS8uGXNhVr9jz0RunDLz6Mx1I5NqOuaMntIT6Nv_X/s320/the_invisible_man_by_stevedore.jpg" /></a></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>It was worse</b> than just being ignored. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">The problem was this arrogant nurse was trying to <b>make me feel <i>invisible</i></b> - As if I didn't exist - And that I just couldn't permit. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>It happened at the clinic</b>. This nurse was a freelance RN hired exclusively by another patient to do her infusions at my Doctor's office, and from day one this RN made it clear that she was <i>above</i> the rest of the staff and patients, using silence as the weapon of choice. Regardless of whether my greeting to her was "Good morning!" or a simple "How are you, today?", for four full weeks she did not respond or say a word, until yesterday. <b>That's when she got my dander up. </b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>As I was seated</b> in the infusion recliner, right at the critical point when my Nurse Gwen was trying to enter my vein for infusion, the RN decided to stand next to me as if I wasn't even there, and speak over my head to Gwen with a negative comment. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">"Took me four sticks the other day," she said, disparagingly; which is just about the last thing you want to hear when there is a needle poised over your hand. Of course, it both shocked and distracted Gwen, so as she paused, I decided to <b>fill the space with my voice.</b> My intention was to both rebuke the RN's rude behaviour, as well as illustrate the <b>fact of my existence in the room</b> to her. It was as if I was repeating Oliver North's lawyer, <a href="http://en.wikipedia.org/wiki/Brendan_Sullivan">Brendan Sullivan's</a> famous line, "Hey, what am I, a potted plant?" </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Shocked and corrected</b>, for the first time in a month she actually looked at me, saw the dilation of my retinas, mumbled an apology, and shrunk back to her corner saying something about her understanding my point. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">For those of us who have physical challenges and sometimes obvious disabilities, it's easy for some people to devalue us...</span></div><ul style="font-family: Verdana,sans-serif;"><li><span style="font-size: small;">to misinterpret our lack of stamina as a lack of stature; </span></li>
<li><span style="font-size: small;">to view our weakness in posture as a weakness in character; </span></li>
<li><span style="font-size: small;">or to actually take it as far as this RN, and instead of looking at us, or engaging with us, to look past us, over us, or even through us, as if we didn't even exist. </span></li>
</ul><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>In the original </b>"<a href="http://en.wikipedia.org/wiki/The_Invisible_Man_%28film%29">Invisible Man</a>" series of films produced in the 1930's, the character played by Claude Rains visibly disappears after drinking some concoction, which at first seems advantageous, but over time proves problematic. After enjoying a few fleeting benefits of invisibility, most of the film is about Rains' struggles to be noticed and taken seriously, through his actions, deeds. or <b>when a voice comes out of "nowhere." </b></span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Have you encountered people</b> in your circle who patronize you? I call that an <b>attempt to make me invisible</b>, and whether it comes in the form of denial by loved ones, or just plain arrogant behaviour by people in public, I've learned that the only way to counteract invisibility in their minds is with strong actions that make me <i>clearly visible</i> to them - sometimes even including a very loud "voice out of nowhere." </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Let me list a few of the ways I change things up from day to day, to make sure that despite my challenges and disabilities, I'm not invisible to those around me: </span></div><div style="font-family: Verdana,sans-serif;"> <span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"> <span style="font-size: small;"><b>I Change the Tone and Timber of My Voice</b> - Whenever I feel people aren't listening to me, I'll lower my voice to a whisper, or raise it above neutral. The former requires people to shut up and lean into me to hear, the latter snaps them out of their stupor. The main thing is, I speak at a volume differently than normal. Because I've lived all over the world, I'll also occasionally change my accent. I can speak Southern Californian English as well as the Queen's English, but often if I add my Spanish accent it gets the person's full attention. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>I Change the Style and Substance of My Clothes.</b> The fact that my body feels like a dirty washrag doesn't mean I have to dress like one. I've found that the more I dress "up," the less people look "down" at me. A TV producer once told me that the goal of every one of her celebrity clients was to "fill the room" when they entered it, and I've adopted that axiom. So even when going casual, I'll usually pick an embroidered, "True Religion" shirt like "Dog the Bounty Hunter" wears, rather than just a plain white one. It's hard to be invisible when you look like a walking billboard. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>I Change Mode and Method of My Communications.</b> If some people usually get emails from me, I'll change it up and call them by phone. If others only receive written letters from me, I'll send them an instant message. In public places with bored workers like Bank Tellers or Fast Food Servers, I'll place my order in a rhyme or a song, just to snap them out of it. By changing the <i>wrapping</i> of my words, I get better reception for my words. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>I Change the Scent and Strength of My Cologne</b>. This is right out of Schindler's List, and it is a really simple rule - if they can smell you, they won't forget you, and you are not invisible. I make sure I buy the highest strength cologne, usually brands from France or Germany, or the Bond line from London, which have more scented oil so that my fragrance lingers in the room after I leave. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>I Change the Substance and Source of My Credentials.</b> Because I have had over 20 jobs in my life, in a variety of industries, I can "be" a lot of different people depending on the need of the moment. I've shared earlier how on airline flights I sometimes mention that I am a pilot. Sometimes when I can't get service out of certain government functionaries I show them my press pass, because to this day I still am a reporter. One of the best credentials I use when I don't get good service is to mention that I am simply "a regular customer" who will be writing a letter to the President of the organization about my experience with you - and how this story is told "depends upon you, right now. So, let's start with the spelling of your last name." Even if they still treat me with contempt, I guarantee you I am no longer invisible to them. Ever again. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>After my infusion that day</b>, long after the rude RN and her only patient left the clinic, Gwen and I were the only two remaining, so I said to her, "Hope I didn't cause you any stress with my comments earlier." </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Gwen replied, "After 4 weeks of not talking, I was in complete agreement with you. I was glad you said what you did." </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">"Yeah," I said, heading to the exit and elevator, "sometimes you just need to speak up, even if it is a "voice out of nowhere." </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Gwen gave me one of her super-warm smiles, and I left the office happy. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>As the elevator door opened</b>, with my head down, I almost ran into a woman exiting, who I had seen in that building a few times before, but I didn't know her name. I was just about to say "Oh, excuse me," when she exclaimed, "Wow, nice shirt!" </span></div><div style="font-family: Verdana,sans-serif;"> <span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">"Thanks," I replied, "Nice of you to notice." </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">"Hard not to!" she said, sincerely, with a smile. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">"<b>Mission accomplished</b>" I said to myself, and Claude Rains, if he was listening. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com1tag:blogger.com,1999:blog-7291854236770250226.post-38673079431947276642010-05-31T13:25:00.000-07:002010-05-31T14:19:59.719-07:00The Ampligen Supremacy<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhopMzhPBnWHh5QtiVN30lxL1R7ZxbLqpBnsy_iY3wScy6Khjhg4RM3kWfsRtae1M_rPb_-iValeZ6DzwOaoin-zkE9wQpL3twxxQIPZNTV9XJLpR7At8Z9yengMKD_siVtauCj3B1ZK7am/s1600/professor.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="132" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhopMzhPBnWHh5QtiVN30lxL1R7ZxbLqpBnsy_iY3wScy6Khjhg4RM3kWfsRtae1M_rPb_-iValeZ6DzwOaoin-zkE9wQpL3twxxQIPZNTV9XJLpR7At8Z9yengMKD_siVtauCj3B1ZK7am/s200/professor.jpg" width="200" /></a></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>My favorite line</b> in the "Bourne" trilogy is given by <a href="http://bourne.wikia.com/wiki/Professor">The Professor.</a> He appears briefly in the first installment, but it is in the second film, the Bourne Conspiracy, that Clive Owen utters the quintessential phrase of the movie. After dueling with fellow agent Jason Bourne in the countryside and lying mortally wounded from Bourne's shotgun blast, he looks at his bleeding body, and then up at Matt Damon's character and says, </span><span style="font-size: x-small;"><b>"Look at us. Look at what they make us give."</b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>In that moment</b> of humanity and pathos, when two field agents who have both been through the same trenches and heartaches connect in unspoken respect, both "The Professor" and Jason Bourne arrive at the same conclusion - that "they" have required too much of them. That the pain and trauma and incredible amount of time and life that "they" require just isn't worth the price.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">At that moment, you can see on Matt Damon's face the realization - that regardless of the supposed "good" he and his fellow agent were doing...</span></div><ul style="font-family: Verdana,sans-serif;"><li><span style="font-size: x-small;"><b>the remedy was worse than the disease;</b></span></li>
<li><span style="font-size: x-small;"><b>the medicine was worse than the infirmity.</b></span></li>
</ul><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">I remember clearly when it <b>dawned on me</b> that the "remedies" I was using to fight M.E., were worse than the supposed "benefits" I was getting.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">When all the medicines, foods, protein shakes, herbs, injections, pills and baths that "they" had recommended for my good with this hideous disease, was just too much - and that I had to find a better way. And it explains why I am writing the New Ampligen Diaries. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>It was a typical morning.</b> On the counter were all my vitamins, flasks, needles, herbs, tablets, supplements, and prescriptions, laid out for the day. There were the vials of B-12 and "Nexavir", the supposed Kutapressin replacement. There were my Doctor-prescribed medicines, my natural health foods, and a ton of vitamins and supplements. My body ached, so as was normal for my morning routine, while waiting for my magnesium salt infused hot bath, I asked my wife to mix up my <b>whey protein drink</b> in that special little blender. For years I had read that this whey protein contained the glutathione that my body lacked, and since "they" <a href="https://www.prohealth.com/shop/product.cfm/product__code/N056">recommended it so strongly,</a> I dutifully and habitually drank the mixture twice a day.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>I hated that drink,</b> not only because it tasted like chalk, but also because it wasn't water soluble. You had to dump these envelopes of white powder into this special mixer to blend it, or else you ended up with clumps of goo that would stick to your glass and turn to concrete within minutes. I sacrificed a lot of cups to that whey powder over the years. Plus you invariably ended up with white powder everywhere, on the sink, on your hands, in your hair - all for the sake of this "miracle" drug. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">My wife was better at it than I was, so while waiting for her to carefully open the packets and gently mix the concoction that "they" insisted I drink, I opened my laptop and went to my news feeds about M.E and CFS treatments. What I saw rocked my world, and changed forever how I would view "them," and how I would survive with this disease from then on. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>"Cheney Advises Against Whey Protein and Glutathione"</b> rang the headline, louder than a shotgun blast in my ears.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>"Whaaaat?" </b>I screamed out loud. "After 15 years of promotion, dozens of published articles, a feature position on "Pro Health" and other vitamin retailers that cater to us, NOW <b>whey protein is bad for me?</b>"</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">I couldn't believe it. The money and time I'd invested in getting whey protein delivered to me, (outside the USA) was eclipsed only by the hundreds of hours spent trying to get that confounded blender to work with that hellish powder. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">As if on cue, my wife came around the corner with my little elixir in hand, white whey powder dancing from her eyebrows, her nose, and covering her fingers.She looked like Al Pacino in the closing scene of Scarface. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">"Guess what?" I said sarcastically to my wife, "We've been spending thousands of dollars each year apparently poisoning me with whey protein."</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">"Why?" she asked me sincerely.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>"Because,"</b> I answered, "<i>they </i>told us to."</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">Looking at my precious wife covered in whey, that fricking little battery operated blender, superimposed over the headline seemingly mocking me on my computer screen, something came over me, and I had my "Bourne" moment.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">Taking the mixture from her cute little hands, I actually repeated the words out loud: "Look at what they make us give," I said.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>Today </b>my wife and I say that line often, resonant with the knowledge that it means much more to us than dialogue from a spy thriller. It recalls to us the moment when we stopped believing in all the remedies that "they" speculated would work. It signals the time when I decided to <b>get serious about my recovery</b>, and put everything I had into it, for survival. Though not as dramatic as a Bourne thriller, it was every bit as serious.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">For out of that "whey protein" fiasco and subsequent "they don't always know what they're talking about" revelation came a new-found respect for research, and a renewed desire to do whatever it took to get well, regardless of what "they" said.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>Which is the reason that today,</b> I have moved 10,000 kilometers across an ocean to receive the drug "Ampligen" and have committed to a full year of treatment under one of the few doctors in the world who has it, in order to get well.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">I came after doing exhaustive research. I looked at everything that was out there, from Valtrex and/or Valcyte therapy, to Vistide, and other antivirals, to even stem-cell therapy and antibiotic "cocktails", and guess what I found? The drug with the <i>most</i> research and the <i>most</i> potential success turns out to be the much maligned, often controversial, immune modulator called Ampligen. I found that there were over </span><span style="font-size: x-small;"><b>20 years of Journal published </b>research reports, way more than any other therapy today, that gave me the overall impression that, this drug actually could "fix"or modulate my immune system to make me better. </span> </div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><b>I do not have a financial interest in Ampligen </b>or Hemispherx. I am not lobbying for Hemispherx or working "against" any other drug, protocol or therapy. But so far, Ampligen is proving to work in my body as advertised, and there is lots of research to back that up. For example, from just a few of the hundreds of published studies:</span></div><div style="font-family: Verdana,sans-serif;"><a href="http://www.blogger.com/goog_761736106"><span style="font-size: x-small;"><br />
</span></a></div><div style="font-family: Verdana,sans-serif;"><a href="http://journals.lww.com/immunotherapy-journal/Abstract/1985/04060/Clinical_Studies_with_Ampligen__Mismatched.14.aspx"><span style="font-size: x-small;">Ampligen Activates NK Natural Killer Cells and Interferon Enzyme</span></a></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><a href="http://aac.highwire.org/cgi/content/abstract/48/1/267">Ampligen Protects Mice Against Coxsackie B3 Virus</a></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><a href="http://www.ncbi.nlm.nih.gov/pubmed/7893986">Ampligen Inhibits HHV-6 Herpes Virus</a></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><a href="http://www.ncbi.nlm.nih.gov/pubmed/7893986">Ampligen Inhibits Viral Replication of Hepatitis Virus</a></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><a href="http://www.informaworld.com/smpp/content%7Econtent=a904371892&db=all">CFS Patients Show Long Term Improvement With Ampligen</a></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><a href="http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6TD4-4VJ4B72-16&_user=10&_coverDate=05%2F26%2F2009&_rdoc=1&_fmt=high&_orig=search&_sort=d&_docanchor=&view=c&_searchStrId=1354284329&_rerunOrigin=scholar.google&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=4d509967c01e69c65c0fcc1825c23fd5">Ampligen May Provide Long Term Immunity Against Cancer </a></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">There are literally <b>hundreds</b> of other references and published studies that cover the last <b>20+ years of Ampligen research</b>, that to me added up to the best option for my time, money and hope. To see these just use and search <a href="http://scholar.google.com/scholar?q=ampligen&hl=en&btnG=Search&as_sdt=40000000001&as_sdtp=on">Google Scholar</a> for Ampligen. Then compare what you find with any other remedy currently in vogue today, and tell me, does the protocol you are following have this much research behind it? Is the remedy actually helping you, or is it another "whey protein" drink? </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">Recently there was a really interesting study published by a Doctor I really admire regarding his decades long statistical analysis of patients using long-term antibiotic therapy. I'm thankful for this study, and the new insights it brings to our treatment options. Yet I have to admit, when I read that this research portends $1000/month worth of antibiotics, plus liver tests monthly, for a period of 4-11 years, I have to stop and ask myself "The Professor's" implied question. <b>Is the remedy worth it?</b></span> </div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">"Look what they make us give." 4 years and $50,000 minimum? To <i>maybe</i> get better?</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">No. Not for me. I'm putting my money on Ampligen. 1 year and less than $25,000.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">With the added bonus of no ridiculous powder in a battery operated mixer. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br />
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</div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com22tag:blogger.com,1999:blog-7291854236770250226.post-36855675191867271752010-05-18T13:01:00.000-07:002010-05-18T13:02:06.695-07:00I Swear, It's Nothing Personal!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr2n8mKMt80iuQ25NDytcPi5p71F3W8lXEgT64WA4MZRKj54O1_o8ORklENyrLudDKCT3LyVeHh2TQnKed6H9VoRZHoCtT3egSuHUPa_TYyjZ8yqQH0WlxBLHSzEXLXwOFaZVifC_WfhUV/s1600/swearing+guy.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="112" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr2n8mKMt80iuQ25NDytcPi5p71F3W8lXEgT64WA4MZRKj54O1_o8ORklENyrLudDKCT3LyVeHh2TQnKed6H9VoRZHoCtT3egSuHUPa_TYyjZ8yqQH0WlxBLHSzEXLXwOFaZVifC_WfhUV/s200/swearing+guy.gif" width="200" /></a></div><div style="font-family: Verdana,sans-serif;"><b>"My mild-mannered, sweet, school-teacher wife</b> just lit into me with some language that would make a sailor blush!" R.S. said, shaking his head in dismay. He was referring to his wife Leona, a fellow patient here at the clinic getting Ampligen, and he was beside himself, still stinging <b>from the string of expletives</b> she had just dispatched his way. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>I had met</b> R.S. briefly a few weeks prior, when he and Leona had first arrived at the clinic to start her on the Ampligen protocol. She was a petite, lovely woman, and obviously sick, but she still made an effort to be cordial. Looking up at the giant of a man with a straw hat and an unlit cigar hanging from his mouth, Leona smiled at him and introduced me. "This is my husband, Robert" she said, "but most people just call him R.S. That's short for "rock solid" because that's what he is in my life." I could tell how much she loved him, and it was clear that he idolized her.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>I remember thinking to myself, </b>"I wonder if he's ready for what's coming."</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">"Listen, R.S." I said, "if you have any questions about this protocol, or the side effects, feel free to call me. My wife could give you some tips as well," I said, handing him my card and phone number. "<b>Because there are side-effects!"</b> </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>It was about three weeks later,</b> to the day, that R.S. took me up on my offer, and connected with me by phone. "Man, I need some help or advice or something." R.S. said. "This woman is pushing me to the edge of my rope. I don't know if I can take it much more!"</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>"What's going on, R.S.?"</b> I inquired.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">"I've been married to Leona for over 2 decades" he said, "and she's never said more than three cross words to me in her life. But ever since she started this Ampligen treatment, <b>she's been cursing me like a drunken sailor.</b> I mean, she's hit me with some profanities that you wouldn't hear even on a construction site. And I've worked in construction, so I know. I mean, it's like she's a different person! Would you believe last night, after very gently and quietly going out to the patio, <b>Leona actually screamed at me</b> to "<i>stop slamming that "f----ing" door!</i>?"</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">"Yes, I can believe it, R.S." I said, "for two reasons. First, in order to start Ampligen, Leona had to go "off" all her other drugs - medicines and antivirals that were getting her through. Second, the Ampligen she's receiving now is finding and attacking the disease, and it is stirring things up everywhere in Leona's body, including her brain, and that includes her nervous system, and the parts of her brain that <b>controls and filters speech."</b></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">"You mean I've traveled over 1000 miles," R.S. continued, " to come to a clinic to get my wife better, and the immediate result of this "miracle drug" is that I get to hear what a '<b>son of a bitch'</b> I am by my so-called sweet, loving wife every night?" </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">"Well," I replied cautiously, "at least for a little while, R.S. <b>But don't take it personally!"</b></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>I went on.</b> "In reality, what's happening to your wife happens to most of us who start this immunomodulating drug called Ampligen, or to anyone who has had this virus in their systems for a while and starts treating it. The same thing happened to me - and until my wife understood the pathology, she was as perplexed by my swearing as you are about Leona's. In fact, I continued, "my wife could tell you about the night I screamed at her to "kindly stop banging the f....ing door!" </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>What I then shared with R.S</b>. helped him to understand the situation a lot better, so he could understand what Leona was going through a lot more. Thankfully, some other patients and doctors had shared this with me, and I ended up writing it as a "letter" to loved ones so that they too could understand that we are not just "cursing up a blue streak" because we lack self-control. Here's what I wrote: </div><br />
<div style="font-family: Times,"Times New Roman",serif;"><b>Dear loved one,</b></div><div style="font-family: Times,"Times New Roman",serif;"><br />
</div><div style="font-family: Times,"Times New Roman",serif;"><b>Perhaps you have heard things</b> come out of my mouth that sound harsh to you. Perhaps my attitude has sounded impatient, or my requests have sounded demanding. You may have even been one those close to me who has heard me use profanity or off-color words that normally even I would blush at. </div><div style="font-family: Times,"Times New Roman",serif;"><br />
</div><div style="font-family: Times,"Times New Roman",serif;"><b>Please understand</b>, I have not gone over to the "dark side." I am battling a <a href="http://www.ahummingbirdsguide.com/">neurological disease</a> which has infected or invaded my cerebral spinal fluid. This not only causes me great discomfort, it also causes great changes in my mental circuitry. <a href="http://www.disapedia.com/index.php?title=Myalgic_Encephalomyelitis_%28ME%29">Myalgic Encephalomyelitis</a> by definition in part means "pain and swelling in the brain lining," and the viruses that it has stirred up mess with parts of my brain in a significant way, not the least of which is my speech center. </div><div style="font-family: Times,"Times New Roman",serif;"><br />
</div><div style="font-family: Times,"Times New Roman",serif;"><b>Yes, I have a problem with my mouth</b> right now...but it's because <b>I have a problem in my brain</b>. According to the <a href="http://www.mefmaction.net/documents/me_overview.pdf">Canadian Case Definition Guide of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome</a>, MRI studies confirm that we patients use more areas of the brain to process auditory activities, which means small noises often seem extremely loud to us, and small irritants can feel extremely, well, irritating. What's more, in that process we often can suffer cognitive fatigue, which then <b>affects our verbal processing. </b></div><div style="font-family: Times,"Times New Roman",serif;"><br />
</div><div style="font-family: Times,"Times New Roman",serif;"><b>Speech comes from the left brain normally,</b> but when fatigued or worn out, our brains can switch to the right hemisphere, <a href="http://www.scientificamerican.com/article.cfm?id=why-do-we-swear">triggering our Amygdala</a>, which is the key to emotions. This then causes our heart to speed up, our eyes to dilate, and other survival mechanisms to kick in. When our hearts accelerate, our sympathetic nervous system kicks in, releasing adrenaline or epinephrine into our bloodstreams. In short, sometimes our bodies put us in "fight flight" mode, ready for war, prepared to act like a warrior. </div><div style="font-family: Times,"Times New Roman",serif;"><br />
</div><div style="font-family: Times,"Times New Roman",serif;"><b>And because we lack the cognitive energy</b> to speak at those times from our left-brain, we shift to right brain verbal communication, which of course, sounds a lot more like a soldier or a football player, than a school teacher. </div><div style="font-family: Times,"Times New Roman",serif;"><br />
</div><div style="font-family: Times,"Times New Roman",serif;"><b>You may have heard of this happening to women in labor</b>, where out of the blue they will curse during the most painful, exhaustive moments of giving birth. No husband in those moments takes those words seriously, or personally - so I would ask that in a similar fashion, you not take mine seriously, or personally either. </div><div style="font-family: Times,"Times New Roman",serif;"><br />
</div><div style="font-family: Times,"Times New Roman",serif;"><b>I am, in a very real sense, in labor here</b>. I am in labor everyday to try beat back the sickness, to beat the viruses and diseases that have invaded my body, without losing my sanity or my hope. If on occasion, the cascading of pain symptoms or the natural defense mechanisms of my brain and central nervous system push me into a warrior mode, and you see my eyes dilate, or hear invectives come from my mouth that seem over the top, please understand, I am really not that upset with you. Inside my head though, it is very painful, and very noisy. </div><div style="font-family: Times,"Times New Roman",serif;"><br />
</div><div style="font-family: Times,"Times New Roman",serif;"><b>So please, don't take this personally.</b> </div><div style="font-family: Times,"Times New Roman",serif;">And on your way out, please, just be sure you "<b><i>don't slam that @#$#%&& door!" </i></b></div><div style="font-family: Times,"Times New Roman",serif;"><br />
</div><div style="font-family: Times,"Times New Roman",serif;">With love and appreciation, </div><div style="font-family: Times,"Times New Roman",serif;"><br />
</div><div style="font-family: Times,"Times New Roman",serif;">Kelvin</div><div style="font-family: Times,"Times New Roman",serif;"><br />
</div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com3tag:blogger.com,1999:blog-7291854236770250226.post-91800181026510419952010-05-09T10:28:00.000-07:002010-05-09T10:29:28.605-07:00Grading Ampligen - A Mid Term Report Card<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCCY8IO3kERF7pc2g0waYOFCkCf5npv5vZDrYrhyphenhyphendnQ-hSGdYRj4evBpIEAN7ben3jbX6SQ8I-Ns_aEPlS2v7-Hd6dBKFHqpestvJ8a5IOCq-QOoFkejFOO3yTyDFxF_raErKB1inDdqS6/s1600/report-card.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="164" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCCY8IO3kERF7pc2g0waYOFCkCf5npv5vZDrYrhyphenhyphendnQ-hSGdYRj4evBpIEAN7ben3jbX6SQ8I-Ns_aEPlS2v7-Hd6dBKFHqpestvJ8a5IOCq-QOoFkejFOO3yTyDFxF_raErKB1inDdqS6/s200/report-card.jpg" width="200" /></a></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">I never liked report cards as a student, but since today marks the completion of 14 weeks on Ampligen, signifying that I've just passed the quarter-mile mark, I thought I'd give you an update on my progress, by way of some <b>mid-term grades.</b> After having 28 infusions of this amazing "experimental" drug, here are the things that <i>have</i> and <i>have not</i> improved to date. Grades are based on the typical American system, with A being best, and D's and F's being worst. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Things that have improved on Ampligen: </b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Appetite</b> - <b>A+</b> This was the very first thing I noticed that Ampligen affected, from the very first day on the very first drip. My appetite returned while sitting in the clinic with the first Ampligen infusion in my arm, and I remember commenting to Nurse Gwen about it. When I arrive here I weighed barely 170 pounds - not enough for my 6'1" frame - and today I am sporting a pot belly at 199 pounds. That's almost 30 pounds gained in 3 months, and my new challenge is figuring out how to stop gaining! But I feel better with this weight back on, and most tell me I look better too. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Sleep A+ </b>- The second most noticeable benefit of Ampligen was both the length and quality of my sleep. I remember the first night after my first "drip" having vivid dreams. I began writing them down, so intense and profound they seemed to me, but after a few weeks I just sat back in my sleep, and enjoyed the show. Today I always sleep at least 8 hours per night, and always have multiple dream sets. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Brainwaves</b> <b>B+</b> - Early in my treatment I went to a pretty well known Doctor who specialized in Quantitative EEG and <a href="http://www.amenclinics.com/brain-science/">neurofeedback therapy</a>, who has had a lot of M.E. patients, and got a scan of my brainwaves. After seeing the color images of my brain activity on her screen, I asked her "what does that show you?" She said, "If you took this image to any hospital emergency room, and showed it to any random resident working that day, they would say to you "So was this patient in a car accident, or <b>hit with a bat</b>? Because there is serious brain trauma here." Since then, every day after my Ampligen treatment I've gone immediately to this Doctor's office, and had neurofeedback. Since then my Theta waves, which were off the chart, and looked much like someone with ADD or ADHD, have come down within "normal" range. I attribute that both to the Ampligen, and the neurofeedback therapy. Experientially, my short-term memory has improved, and my business associates have told me that I'm "much sharper" in my decision making and management. Even though I still don't go into the office, and do my job on the phone and the Internet, they've noticed a difference. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Headaches B+ </b>- In short, my headaches have almost completely disappeared since starting on Ampligen. My ears still ring occasionally, but the pain has not reared its ugly head in a long time.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Digestion B+ - </b>If you read some of my earlier posts, you know that I went from diarrhea, to constipation early in my Ampligen treatment. The pendulum has swung back to the middle, and suffice to say everything is now normal and regular. I still watch what I eat, avoid gluten, sugar, and the usual suspects, but apart from those restrictions, the machinery functions pretty much everyday like clockwork. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Things still waiting to be improved on Ampligen:</b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Low Energy </b>- <b>D- </b> When I arrived here I could hardly walk from the airport gate to the baggage carousel at the airport. Although I might be a little better than that, today I am still limited by low energy levels. More than 7 minutes walking and I'll be pooped, and pay for it the next day. In our animated church we stand a lot, and sometimes I just can't do it for more than 5 minutes. Staying "horizontal" is still necessary for me, most of the day. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Limited Exercise</b> <b>D+</b> -<b> </b>I have not been able to increase my exercise level at all since being on Ampligen. I have hope that this will change soon, because other patients tell me after month 6 the energy level starts to pop. But as of today, apart from like 10 minutes of stretches each day, I'm unable to do much. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Concentration Difficulty</b> <b>D</b> - Although I have seen slight improvement in this area, I have to confess that mental concentration is still a problem. To write this blog for example takes me multiple sittings, and big-time discipline, because my mind wants to bail about every 5 minutes. This is getting better, but there is still a long way to go. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Muscle Pain</b> <b>D</b> - Although the flu-like side effects of Ampligen have, after 3 months, now completely dissipated, I still awaken every morning with stiff, sore leg and back muscles. I still am fighting pain and soreness all the time, all day long. Sometimes the locations change, but every day something muscular is hurting.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">It is <b>these four problem</b> areas that combine to still make it difficult for me to work for any long periods, or take my wife out to dinner, or just dance with her in the living room. Don't get me wrong, I'm thankful for the improvements I've noted in the section of "good grades" above. But until Ampligen can fix these "low grade" areas, I won't be satisfied.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Oh yes, one more thing, that my wife has noticed. <b>My mouth</b> has gotten a lot better. Of all the tests and measurments as to how I feel and how I'm doing on Ampligen, this one might be the best diagnostic of all. I give myself a B on this. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">I very rarely use the "f" word as an adjective any more! Thank God!</span></div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com1tag:blogger.com,1999:blog-7291854236770250226.post-28221339577491489102010-05-01T12:15:00.000-07:002010-05-01T12:19:14.852-07:00How to Answer "What's Wrong With You?"<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9kRkEpjqsO9RADm2L_hk9s6OEZJdzNs3KOMADOI1agP_wLA9CdSLaZX9uEyQ1FIImv4WrfEHoaUVQbq_6_8RM0lcfH5pMl_w2sAmDjMM16OVO6TV802FNUMQROtLmHr8aIcmV2I55kQzD/s1600/clean+tie+baghead.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9kRkEpjqsO9RADm2L_hk9s6OEZJdzNs3KOMADOI1agP_wLA9CdSLaZX9uEyQ1FIImv4WrfEHoaUVQbq_6_8RM0lcfH5pMl_w2sAmDjMM16OVO6TV802FNUMQROtLmHr8aIcmV2I55kQzD/s320/clean+tie+baghead.jpg" width="268" /></a></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>We've all heard the question</b> in one form or another.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">It usually comes at a time when you look better than usual, or feel worse than usual. But either way, it makes you feel the same as usual.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>"What exactly is wrong with you?"</b></span> they ask, innocently...not knowing that their "casual" remark has ignited every synapse in your brain and tensed every muscle in your body into an emergency-level "fight/flight" response. </div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>How should I answer that? Because the disease</b> we battle has not received the "press" or publicity of other better known infirmities, and is not as intuitively obvious as having one leg missing, the answer we give is not all that easy to come up with, and often provokes some strange responses.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>The most notable example of this</b> happened to me on a flight from Miami, USA, after arriving from South America. Through mileage I was blessed to be upgraded to Business Class, but even before I could enjoy the comforts of warm roasted nuts and the hot towel, <b>I was uncomfortable. </b> A large man in a Panama hat seated directly behind me began coughing and wheezing so violently I actually felt spray from his mouth hit my arm. I turned around to see if it was serious, just in time to get hit with another atomized burst of germs right in my face. He didn't even attempt to cover his cough, and seemed perfectly content baptizing all six of us in this tiny cabin with his infection. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Knowing how sensitive my immune system was</b> to these kinds of airborne bacteria, and not wanting to get yet another cold or virus, especially one I was convinced came from Panama, I rang the attendant button. When the "flight attendant" came by, I said in a whisper, "Could you please ask the gentleman behind me to move to another seat? There are a bunch open in the back." </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>To my surprise,</b> she said nothing, made a dismissing face, shook her head, and started to move on to deliver more hot towels to the other Business Class passengers. But because I was a pilot, and knew commercial aviation rules and regs, I had more to say. Unfortunately, at that moment, the short-term memory, brain-fog thing that hits us at the most inopportune times came over me, and <b>I forgot what to call her in English.</b> Coming up with the closest alternative, I now almost shouted down the aisle, "Waitress!" </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>I discovered immediately</b> that, at least in the USA, "flight attendants" do not like to be called "waitresses." Spinning around like I had just cursed her, she said loud enough for everyone on the plane to hear, "What did you just call me, sir?"</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">As I started to explain that I meant no offense, that it was just a mix up in terminology, she interrupted me with <b>the</b> question. The question that we are not loathe to answer, but the question that usually takes more than a few seconds to explain. And there it was. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>"What exactly is wrong with you?" </b>she spat, halfway using it as a club to beat me senseless, but also seriously waiting for an answer,</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">With her hovering over me like a school-marm, I muttered something about having a complex disease, included some key facts about my immune system, mentioned the word "virus" I think, and then heard myself end with "but it's not contagious!"</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Whatever I said, it evoked exactly the opposite reaction that I had hoped, and for the rest of the flight, <b>I was actually "shrouded" </b>by her and her staff.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Shrouding</b> is a term that was made famous in the movie "<a href="http://www.imdb.com/title/tt0669193/">The Paper Chase</a>" starring Timothy Bottoms and John Houseman, referring to <a href="http://en.wikipedia.org/wiki/The_Paper_Chase">law school students</a> who were so inept in the professor's mind, that the professor <i>ignored</i> the student for the entire semester, basically acting like the student didn't even exist. Playing a shrouded student, Timothy Bottoms actually sat in class with <b>a bag over his head. </b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">I guess because of my weird answer, and the use of the term "waitress", for the next 2 hours, <b>I was shrouded on that flight. </b>No "flight attendant" looked at me. I was not offered a beverage. I received no warm nuts. And Mr. Panama hat coughed and sprayed all the way from Miami to our destination.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>I learned through that ordeal </b>that I had better come up with a cohesive, cogent, informative answer to the question, so that the next time someone asks me "What is wrong with you?" I would be prepared. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Over time, <b>I've cataloged a number of concise ways</b> to answer <b><i>the question,</i></b> depending on the questioner, my mood, and the need at the moment, and offer a few for you here.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>The Scientific Answer: </b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">I have a disease known in most parts of the world as <i>myalgic encephalomyelitis. </i>That's a lot of syllables but it describes this infirmity well:</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Myalgic</b>- by definition means <i>muscle pains;</i></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Encephalo</b>- in latin means <i>in the head, or brain; </i></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Myel</b><i> </i>- refers to the myelin and means <i>spinal cord; </i></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Itis</b> - means <i>inflammation or imflamed</i>. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">So when you put it all together it means I have a disease that resides in my brain and spinal fluid, inflaming them, and giving me great pain. It also means that it's quite amazing that I could tell you this definition without lying down!</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>The Allegorical Answer: </b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Have you ever had a bad case of the flu? Did you ever drink one too many Margaritas? Do you like the TV Game Show "Jeopardy?" Well, imagine that you have a disease that makes you feel like you have the worst flu-bug of your life, with all the concomitant chills, fevers, and aches, with a tequila hangover on top of it, and Montezuma's revenge thrown in. Now imagine that when you try to get up to go to the bathroom, some college pranksters covered your bed in thick molasses, and you can't move your arms or legs. To make this torture even worse, while you are "stuck" there, immobile, your brain is giving you answers to questions no one has asked. Well, I have a disease that is like that for me all the time. And oh by the way, "What does Myalgic Encephalomyelitis feel like, for 500, Alex?" </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>The Symptomatic Answer:</b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">I have a disease that makes me extremely tired all the time, but prevents me from getting more than 2-3 hours of sleep at night. It is a disease that makes me sweat in the winter, and have chills in the summer; one that often has my head red-hot and feverish, while my feet are stark white and ice-cold. It is an infirmity that makes my immune system and brain run on overdrive, but often renders me unable to find the right words, or remember your name. In fact, I often forget what I was saying in mid-sentence, and why I was saying it. Now what was that question that you just asked me again? </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">I have other formulated answers that I often use, but you get the idea. The point is to have at least one...well-rehearsed, on the tip of your tongue...because you never know from who or where <b>the question</b> will next come. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">And if brain-fog hits, or the short-term memory problem kicks in, or you are just frankly tired of answering the question, there's always the last resort. You just put a grocery bag over your head, and act like you're not even there.</span></div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com3tag:blogger.com,1999:blog-7291854236770250226.post-19458158300660626402010-04-22T12:57:00.000-07:002010-04-22T13:05:02.764-07:00My Allergic Cascade<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPGs02kloQ8ov_f2Nk5kcx2qqpu_6SFBccgCvDydYNBL3K9KG8vmLtKi8c-NPXJbkvH8GVOAgGqVjcVEHXnWO4rBVQ5UXqxePm3emeXjDaLvtsU7UYM5HLfQpzCmgOITEFC_cZe4Dr-0TR/s1600/willsmith.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPGs02kloQ8ov_f2Nk5kcx2qqpu_6SFBccgCvDydYNBL3K9KG8vmLtKi8c-NPXJbkvH8GVOAgGqVjcVEHXnWO4rBVQ5UXqxePm3emeXjDaLvtsU7UYM5HLfQpzCmgOITEFC_cZe4Dr-0TR/s320/willsmith.gif" /></a></div><div style="font-family: Verdana,sans-serif;"><b>I never heard the phrase "allergic cascade"</b> until 10 days ago, when I woke up with a nose so swollen with mucous that I literally could <i>not</i> blow it out. Seeing my distorted face in the bathroom mirror, all I could think of was that classic scene in the movie <b>"Hitch"</b> where Will Smith's head reacts to his shellfish allergy by exploding to twice its normal size, and he starts guzzling antihistamines.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>Allergy season, huh?</b> They warned me about this little side-benefit of living here on the East Coast of the USA, but like every other "little" physical challenge we face, this seemingly "minor" irritant became a <i>huge</i> problem for me, because of the immune system issues it portended. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>It started pretty innocently </b>- the meteorologist on TV the night before said that "pollen levels will be the highest on record in more than 25 years, " but since I had never been bothered by Springtime allergies in the past, I didn't pay much attention.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>I should have. </b></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">"Normal" average people all over this town were sneezing and stuffy, complaining of the extreme allergic reaction to the visible pollen in the air. But as you well know, <b>we are not "normal" or average</b>. We have immune systems that are already ramped up, and I have the additional issue of having an immunomodulating drug called Ampligen basically stirring things up like a hornet's nest on top of it all. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>I knew I was in trouble</b> when I decided to carry a roll of toilet paper around with me all day- so continuous and heavy was the flow of snot literally pouring out of my nose. Not only did I have to fight the usual Ampligen provoked flu-like symptoms of headache, sore back, and muscle-aches, now I was wrestling with the added kicker of a completely closed nasal cavity and swollen sinus passages. I not only couldn't speak intelligently, I couldn't hear myself speak unintelligently, and I couldn't figure out how to eat and breath at the same time. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>If you want to simulate</b> what I was feeling, put your head completely underwater during your next bath, use your fingers to close your nose,and then try to eat a chicken leg. Then try talking. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>But that wasn't the worst part.</b> Blocked sinuses in turn affected my sleep, because as my mother would tell you, I have never learned how to breath through my mouth when sleeping. With my nose completely plugged up, I had to literally "prop" my mouth open with the edge of the pillow, to try to get small amounts of sleep in. I can now tell you 8 different ways to make a "jaw wedge" out of linen that would rival any tool in a dental office.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">But of course those breathing solutions were short lived, because after a few minutes, as I'd enter REM, <b>my mouth would shut by habit</b>, and I'd jolt awake gasping for air. My wife told me the first night she stopped counting after being entertained by this drama a dozen times the first hour, and after <i>me</i> telling <i>her</i> to "stop waking me up!" Which, with my snot problem, sounded to her something like "<i>Shlop shwakige mhee huah!</i>" </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>Relief started to come</b>, albeit on a very temporary basis, when a friend recommended a nasal spray called "4-way", which is basically just a pseudo-epinepherine mist that shrinks the nasal passages for about an hour. Using that life-saving spray, (which by the way does not have adrenaline properties), I was able to take cat naps during the night, and talk on the phone occasionally. Without it, I sounded like <b>Elmer Fudd,</b> and no one ever truly believed it was me on the phone.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">The only good thing out of having my nose completely plugged up was, without a sense of smell, I didn't enjoy eating at all, so <b>my pot-belly began to shrink. </b> </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>Studies show</b> that <a href="http://chronicfatigue.about.com/od/treatingfmscfs/a/rhinitis.htm">allergies are more common</a> in people fighting fibromyalgia and CFS or M.E. Some have even gone so far as to say that food or environmental <a href="http://www.sciencedaily.com/releases/1999/01/990119104557.htm">allergies can predict</a> CFS/M.E. The fact of the matter is, whether it is a virus, or a mold spore, or pollen that enters our systems, our body's reaction is essentially the same - to send "troops" to oppose the invader. The immune system immediately reacts to whatever the invader by producing several types of cytokines, including interferon alpha and tumor necrosis factor.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><a href="http://en.wikipedia.org/wiki/Cytokine">Cytokines</a> are small proteins that can either step-up or step-down the immune response, but they also cause things like inflammation of tissue, tiredness and body aches. If the allergic response goes on long enough, or is in an environment of TH2 predominance as opposed to TH1 (most CFS/M.E. patients are in a <a href="http://www.anapsid.org/cnd/diagnosis/cheneyis.html">chronic state of TH2 shift</a>) the situation becomes an "<a href="http://www.medicinenet.com/allergic_cascade/article.htm">Allergic Cascade.</a>" </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>Using the term "cascade"</b> for what I went through makes it sound like a pleasant float trip or an enjoyable white-water ride. Trust me, <b>this was no fun.</b> I'd prefer to call what I experienced an "Allergic Drowning," because until today, I was fighting for air and breath every moment.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">Today, after my Ampligen infusion, (which was #26) and a squirt of nasal spray, I <b>am finally breathing normally </b>through my nose. I no longer look like Will Smith. I no longer sound like Elmer Fudd. And with my sense of taste returning, my belly is starting to return to its new found pot-belly shape!</div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com3tag:blogger.com,1999:blog-7291854236770250226.post-14353104006186314052010-04-10T13:05:00.000-07:002010-04-10T13:24:23.091-07:00What I Look Like Just Doesn't Matter<div style="font-family: Verdana,sans-serif;"><b>I admit it. I now have a pot-belly.</b> And it bothered me. </div><br />
<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX9h56QLcq8UtjOTQIv2bYbI3XZIHLh3IAweliZXLPlGot4CeNlBuhstkeBhAlrfI3ZecDz7XqqlbnPXgkegzRJsSVGcS3MJPXwOhBNz1OdpFY_hUTmtPJIYuso2iM35bAT2z3VLWN6yuG/s1600/fatman-skinnyimage.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="185" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX9h56QLcq8UtjOTQIv2bYbI3XZIHLh3IAweliZXLPlGot4CeNlBuhstkeBhAlrfI3ZecDz7XqqlbnPXgkegzRJsSVGcS3MJPXwOhBNz1OdpFY_hUTmtPJIYuso2iM35bAT2z3VLWN6yuG/s200/fatman-skinnyimage.gif" width="200" /></a></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>After being underweight</b> for the past 2+ years, struggling with a lack of appetite and the associated difficulties in maintaining weight, since being on Ampligen for 2 1/2 months, hunger has returned! But with it came a whole new set of problems for me.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>The most obvious </b>one is that my body looks weird to me now. Yes, I still have the skinniest legs in North America, and some years back, thanks to the <a href="http://www.aafp.org/afp/980301ap/pruessn.html">gluten sensitivity</a><b> </b>and the "<a href="http://www.springerlink.com/content/f470p364w6460302/">gluteal wasting</a>" aspects of this disease,<b> I lost my butt completely.</b> I used to be an athlete, running 6 miles a day, doing squats and all sorts of weight lifting, and was pretty proud of my athletic buns. Not today.</span> </div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">My silhouette from the waist down, to quote <a href="http://en.wikipedia.org/wiki/Foghorn_Leghorn">Foghorn Leghorn,</a> looks like "the highway from Ft. Worth to Dallas. No curves!"</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>My pants no longer stay up</b> at all, regardless of how hard I yank my belt. Picture trying to put a belt on a solid marble smooth Roman column - that's my dilemma each day. No matter what you do, the belt just slides right to the ground. Smooth, straight, and shiny...there's just nothing there on the backside to hold it up!</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Now slap on a papoose on the front side above the belt line and you have an idea what I saw in the mirror, to my horror, the other night. On the cellphone with my wife I screamed out, "<b>Geez, I have a pot-belly!</b>" I exclaimed. "I'm getting too fat!" She of course said all the right things about "loving the man inside," and "being in love with more than my body," but it still bothered me, in the same way that it bothered me when I was way too skinny. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Two years ago</b>, when the stock market was in the toilet and long before I started Ampligen, my business partner saw me in person after only talking on the phone for about a year, not realizing how skinny I had become. I was down to <b>167 pounds</b> at the time, (I'm 6 feet tall) and until I saw the look on his face I wasn't real worried about it. But he looked so freaked out seeing my suit pants tied around my waist like Ellie May Clampet's jeans with a rope, and the lack of curves in my face, that he blurted out something like "Man you're <i>really</i> skinny. Are you all right?" I think I deflected a little and said something like, "yeah, my weight goes up and down like the stock market," but his shock was noticeable to me. And was one of the ingredients in my decisions to come here to start Ampligen.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>As it turns out,</b> the fluctuation of my weight while fighting this disease might be a good stock predictor. I've charted my poundage over the past 2 years and have concluded that the bigger my belly, the higher the S&P average. I just completed my 22nd Ampligen treatment, and the Dow popped up over 11,000 yesterday, probably because I hate a whole strawberry cheesecake the night before. But get ready to sell; I'm going on a diet soon!</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">All kidding aside, the dietary and appetite challenges we face can affect more than just how we look. This stuff also <b>affects how I <i>feel</i> about myself. </b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">For example, with or without an appetite, <b>for me to go to a restaurant</b> and actually order something I can eat is torture to me. Finding an entre that doesn't have wheat, msg, sugar, seeds, hot-spices, etc. makes reading the menu a chore, rather than a pleasure. Getting a waitress to actually cooperate with my limitations and "strange requests" make it all the more challenging. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">I was at a local steakhouse with a friend recently, and discovering that the day's lunch menu had nothing I could eat, <b>I decided to make something up on the spot</b>. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">"Can I have this salad without the onions, crutons, and tomatoes please?"</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">"What?" she asked incredulously, "I mean, you'll just end up with lettuce and cucumbers, sir."</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">"Great, that's the salad I want please. Just lettuce and cucumbers."</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Now on a roll I thought, I continued humbly: "Can I get this halibut poached instead of barbequed?"</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"> "Oh, no, we don't have that, sir." she said matter of factly. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">With my lunch mate looking impatiently at his watch, I started feeling self-conscious, so I decided to move into my Jack Nicholson in "Five Easy Pieces" mode.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">"OK," I said, smiling as sincerely as I could, "Do you have doggie bags?" </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">"Yes, sir. Why?"</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">"Well, take the halibut from this item, and instead of BBQing it, throw it in a doggie bag. Then take the onion you took off my salad, and throw that in there with 4 ounces of water. Ask the chef to seal the bag, shove it in the oven for 25 minutes, and serve what's in the bag to me on a plate. You now have poached halibut!"</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Now I confess</b>, part of me was delighted in my creative ordering solution that day, but another part of me was actually embarrassed to have to be so "special" and "different" at a restaurant in front of my friend. And that's the biggest rub, and biggest lesson I'm taking away from all this body morphology thinking. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>What I'm discovering is that what I look like just doesn't matter</b>. Whether I look good or bad, "normal" or sicker than a dog, it doesn't change people's perceptions of me, or more importantly, <i>my</i> perception of me. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Sometimes the problems we face are that we often <b>don't manifest symptomology </b>externally. Many of my fellow patients tell me "we are damned if we do, damned if we don't," referring to the fact that so much of our illness is invisible, that many friends and loved ones will actually say these gut-wrenching words: "<b>Well you don't look sick</b>." On occasion in frustration trying to explain to an ignorant doctor, I've asked, "would you treat me different if my pancreas was hanging out of my torso, or my spleen was running out of my nose?" The fact that I wore a suit to his office and wasn't bleeding sadly affected his diagnosis, adversely. I've learned the hard way that on doctor visit days, I shouldn't <b>shave, bath, or brush my teeth</b>. Helps with the diagnosis, if you know what I mean. I'm serious!</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Apart from physician visits, I think it's natural and healthy to want to leave the house dressed nicely, with the best attitude possible despite difficult circumstances. But when I put on a false face, and am worried about "my figure" or the fact that I have a "pot belly" instead of simply getting well, <b>then I've crossed the line.</b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>So I now wake up every day</b> no matter what with a smile, pleasant music, and a bath. I shave whether or not I plan on seeing anyone that day. I put on clothes that feel good to me, rather than flatter my figure. I look in the mirror, see my butt-less frame, my growing pot belly, and say out loud, "baby got no back, but baby got belly!" </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Then I say that which is most important to God.</span></div><div style="font-family: Verdana,sans-serif;"><b><span style="font-size: small;">"Thank you Lord, that I'm alive today, that the Ampligen is healing me, as evidenced by this weight gain. I'm one of the bravest guys I know, and this is going to be a great day!"</span></b></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Then I rush to the Internet and buy more stock.</span></div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com1tag:blogger.com,1999:blog-7291854236770250226.post-39415459523789299942010-04-03T13:24:00.000-07:002010-04-03T13:24:39.558-07:00Garlic: Virus-Killer; Libido-Booster<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3-4TRcZ3dLj1VibtV5KTR2YIGsMozZq5D_C-tta3Vxh9EkZBx-ZVpdWzqUWTys21cNdVLIBLlt2DPtxGN2Td0R9gwAE_5SGaQDdV5Emi14Lq56AMWSDYPT0lDchTyouGFgdd1fEebA9j9/s1600/garlic+colors.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="153" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3-4TRcZ3dLj1VibtV5KTR2YIGsMozZq5D_C-tta3Vxh9EkZBx-ZVpdWzqUWTys21cNdVLIBLlt2DPtxGN2Td0R9gwAE_5SGaQDdV5Emi14Lq56AMWSDYPT0lDchTyouGFgdd1fEebA9j9/s320/garlic+colors.jpg" width="320" /></a></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Yes, I'm going to talk about sex </b>in this post, because one of our challenges is that this hideous virus not only diminishes our libido, but sometimes completely wipes it out. But I'm also going to discuss what I've found to be one of the best remedies for that part of our symptoms list, which also turns out to be also one of the best <b>natural virus killers</b> out there. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>My first experience with eating raw garlic</b> came in the form of a prank some 20 years ago, when I lived in L.A. I think primarily to show off his fluent Hebrew to me, a friend of mine who had just returned from a 2-year gig in Israel took me to a local Israeli restaurant in the Valley. He insisted that I let him order for the both of us, and although the restaurant owners spoke perfect English, except for one comment, for this "show" they dialogued in their native tongue. So I had no idea what I had ordered, or was about to eat. <b>Big mistake.</b> </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Handing me my bowl, the owner grinned as he asked me, "<b>You married?</b>" "Yes, why?" I replied, but he decided that instead of answering me he would kiss his wife, who was also working behind the counter in the tightest slacks I've seen since Mary Tyler Moore debuted on the Dick Van Dyke show. He also grabbed a part of her anatomy that made her swat his hand away, but she was giggling while he did it. "Geez," I thought to myself, "no wonder King David and King Solomon had so many problems with women!" I looked at my friend Mark for a clue but he just motioned for us to sit down and start eating.</span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>As I took the first big forkful</b> of what appeared to me to be rice, lentils, and some chopped nuts, I couldn't help but notice my friend Mark and the entire restaurant staff all staring at me in expectation. <b>No longer was Mr. horny</b> romantic restaurantuer fixated on his wife - now his eyes were fixed on me. "I guess they think I'm really going to like this dish" I naively thought to myself as I began to eat. After chewing the "nuts" for a couple seconds, the realization of what really was going on hit me too late. These were not peanuts or almonds I was masticating, <b>these were raw cloves of Israeli garlic,</b> and everyone was in on the joke except me! </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Let me tell you right off</b> what I learned the hard way. Chewing raw garlic is a shocking, extremely torturous dietary experience. As my tongue felt the heat of these burning embers dancing around my mouth, my brain went into fight-flight and I reached for the water faster than you could say "Mazeltov." With my friend laughing his "tuchas" off, I looked to the proprietor for help. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>"What did you put in this dish, raw garlic?"</b> I asked in disbelief. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">"Yes, of course," he replied matter of factly, grabbing the waste of his beautiful wife or girlfriend, "but don't worry. <b>The fire in your mouth now will turn to fire in your pants later.</b> It is a very passionate spice!" </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Still unable to speak for laughter, my friend simply nodded and spurted out, "It's true. Scientifically proven!" </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Now let me tell you two things about that. First of all, if <b>garlic is a libido booster,</b> which I tend to think it might be, you still have to remember that most women, including my precious wife, don't get that turned on when your entire body smells like it spent a week in Tony Soprano's mouth. Trust me, fire in the pants not withstanding, if my wife can't stand to kiss me, she isn't going to be inclined to do anything else. And eating raw garlic like I did at that restaurant left me <b>smelling rank</b> for about 3 days, no joke. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">But secondly, this disease that we fight and labor against every day affects us adversely in many ways, including often <b>wrecking our natural libido, neurally.</b> This has been <a href="http://www.endfatigue.com/natural_cures/libidoloss.html">documented </a>and published in many places, and many <a href="http://www.zimbio.com/Fibromyalgia/articles/13/Sex+Chronic+Fatigue+Syndrome">patients</a> have confirmed it to me personally. It only makes sense - when you feel like you have the flu, can't think straight, or have excruciating muscle or body aches, sex usually isn't at the top of your list. Ask Maslow. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">But because these viruses that are activated in us are in the <b>CNS</b>, and affect our brains, we also sometimes have some "circuitry problems" with our <a href="http://chronicfatigue.about.com/od/treatingfmscfs/a/neurotranshub.htm">neurotransmitters</a>. I mean, sometimes, the connection just doesn't work, if you get my drift. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>My father-in-law visited me</b> recently and couldn't believe how non-plussed I was, literally unaffected, by all the women around my life right now. Except for my main physician, who I rarely see, almost everyone at the clinic is female, patients and nurses alike. My neurotherapists are women. I live in a condo that has 80% single women in it. When I go to the gym it's almost all women. And none dresses conservatively. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">My father-in-law asked me, "How do you handle it?" </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>I tried to explain to him</b>, that truthfully, thanks to this disease, I have zero attraction to any of them at all - no thoughts, no desires, no "movement." He couldn't believe it, but that is the way it is. So that part I guess is a blessing in disguise. No temptation if Bathsheba happens to be showering on the roof next door. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">But then when it comes to the <b>times I want the libido to work</b>, on those occasions when I don't feel wasted and my gorgeous wife is wearing those sexy pajamas and flashes me that million dollar smile, I found it actually can be resurrected, tactilely. As long as she gazes into my eyes, connects with my soul, and kisses me as only she can, my brain and body seem to respond. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>If I've taken garlic that day I get two benefits. </b></span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>The main one</b> for me is that it makes me feel better, by retarding the viruses that are raging in my body. When you are on the Ampligen trial, you can't take any other anti-viral meds; but you <i>can</i> take raw garlic! <b>I just completed my 20th treatment,</b> and just about everyone I know who is or was on Ampligen uses garlic, and most cancer patients and survivors know about its antiviral properties. That the National Cancer Institute <a href="http://www.cancer.gov/cancertopics/factsheet/Prevention/garlic-and-cancer-prevention">recommends it </a>only underscores what most of us have learned experiencially- garlic kills viruses that hurt us. You can read more about that <a href="http://www.advance-health.com/garlic.html">here</a>, and <a href="http://quanta-gaia.org/reviews/books/powerOfGarlic.html">here</a>, and <a href="http://www.ncbi.nlm.nih.gov/pubmed/8389276">here</a>. Whenever I take it, my body feels better. My muscles ache less, the flu-like symptoms diminish, and my sore back actually gets relief. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>But also, it does seem to help</b> with the <a href="http://www.garlic-central.com/aphrodisiac.html">libido</a>. The secret is figuring out how to take raw garlic, and have it not affect your breath, so that he or she will still want to kiss you. Here's the routine I've developed thanks to my wife's detailed coaching: </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">1. <b>"Drink" the garlic</b> like a shot of tequila- stir the chopped raw garlic in a shot of milk and "throw" it back, down your throat, past your tongue as much as possible; </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">2. <b>Brush you teeth</b> and tongue no less than five times before attempting anything romantic. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">3. After each brushing use a good rinse of <b>Listerine</b> Orange flavor. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">4. After each mouthwash rinse gargle with <b>fresh water</b>. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">If you follow this procedure you may find that you are feeling better not only because the garlic has sent the viruses into retreat mode, but also because "the fire in your mouth has turned to fire in your pants!" </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
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</span></div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com3tag:blogger.com,1999:blog-7291854236770250226.post-25732320099096080832010-03-29T16:18:00.000-07:002010-03-29T16:18:02.148-07:00Mopping up After the Roller Coaster Ride<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZzLgWcbgMaTdPgbTusge9P_fHveLJVdjTzR26AmI5Em02_TpoAQbnX4XgCrmCe8v0ac8TSWJ-6bonpKP88xih9XiyhzFQjxBkIQ8Kn3O5-KWgxk7J-zeebZxjWe-Q6z0dmVTragNevpo8/s1600/coaster11.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="166" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZzLgWcbgMaTdPgbTusge9P_fHveLJVdjTzR26AmI5Em02_TpoAQbnX4XgCrmCe8v0ac8TSWJ-6bonpKP88xih9XiyhzFQjxBkIQ8Kn3O5-KWgxk7J-zeebZxjWe-Q6z0dmVTragNevpo8/s200/coaster11.jpg" width="200" /></a></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>I overdid it this past weekend</b>, and paid for it on Sunday. Nothing about this disease is predictable, except the unpredictability of it I guess, but I was feeling so good after <b>Treatment #18</b> I actually got suckered into thinking I was "normal" last week. Big mistake. Talk about <b>a roller coaster ride! </b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>When I was young</b> I lived in Southern California and loved going to the theme parks in and around Los Angeles. My favorites were the roller coasters and one day, a new bigger, badder, more bodacious one opened up at <a href="http://en.wikipedia.org/wiki/Six_Flags_Magic_Mountain">Magic Mountain</a> that I just had to try. It had some fantastic official name but the workers there just called it simply "the puker." Of course that made me want to ride it all the more, until while in line to get on, I noticed two workers standing at the ready with mops and buckets. I kid you not - this roller coaster was so hair-raising that they had two permanent workers who mopped up vomit as the coaster returned to base! That was their job, every 2 minutes as the cars came back, to clean up the mess. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>I wouldn't have believed it</b> had I not seen it with my own eyes... but sure enough, as the lead car came to its screeching halt after 75 seconds of full throttle g-forces, the teenage girl sitting in the front let her lunch fly and these two guys were cleaning it up faster than you could say "exit to your right." </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">As I loaded the same car the puker had just left, with the smell still in the air, I asked one of the guys with the mops "What makes people throw up like that, the altitude, or the speed?" </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">He answered matter of factly: "Neither. It's usually the abrupt stop. You go from 60 mph to zero and your lunch is still catching up with you. It's not that bad, really" he went on, <b>"we just mop up the mess after people enjoy the ride."</b> </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>I should have remembered the mop guy's words this weekend</b>. Other patients who have been on Ampligen have warned me about this - that sometimes you can get such a short-term "boost" from this amazing drug that you'll start to think you are "healed" too early, and <b>start going to fast too quickly</b>. They've all told me that the real progress happens after the fourth month, but here I was this past week barely marking two months treatment, and I felt so good that I started filling my calendar up for the weekend. Can you imagine? Stupid, I know. But I had been hoping for this kind of energy for so long, I let my enthusiasm overtake my wisdom. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Coming off my Ampligen drip last Thursday,</b> I felt really energized, so I recklessly attacked life with gusto. Between Thursday night and Friday noon I had long phone conversations with no less than 8 friends and relatives on 3 continents, in 2 languages. I did extra time in the gym, followed by an hour's deep tissue massage. <b>My brain was working so well</b> I spent a couple hours rehearsing a Supertramp chord progression in my head in bed instead of sleeping. Next morning I went shopping at a local mall, listened to a Czech opera conductor play Gershwin on the baby grand in Nordstrom's and then came home and worked on my taxes! Can you believe it? Still on this "high," on Sunday I took a friend with me to church, (a baptist-style congregation where the music is so good it is impossible to sit for very long) and then got a haircut. I was intending to write this blog after that, but then incredibly, the ride came to a sad, abrupt halt. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Like the speed brakes on a roller coaster</b> at Magic Mountain, I hit the wall. I decelerated from 100mph to zero in the blink of an eye. My stomach ached. I dropped the hairbrush, and dropped my pants. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>In less than 2 minutes,</b> I went from admiring my new haircut in the mirror, to sitting on the toilet with abdominal cramps. Not only did my glute and leg muscles hurt, but my bones hurt too. My head was throbbing, my neck ached, and in all seriousness, it even felt like my teeth hurt. The ringing in my ears and the overall malaise confirmed it - I was crashing big time. It was shocking how quickly things turned south. From soaring at light-speed with my hands in the air, to squatting over the commode with my hands holding my head, in just a few minutes time. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>At first I tried to go through the usual denial</b> mechanisms we all use, like telling myself all I needed was some dinner. But when I couldn't get up the energy to find my glasses to read the dials on that fricking chinese GE oven with the tiny little numbers on those infernal tiny little dials, I realized I was toast; so I just plopped down on the sofa. For a moment, in complete denial, I thought of getting up and trying to distract myself by writing this blog. Ridiculous. Had I done so it would have looked like this: "*@$&^%##@^$*&$@_)_**^)(&@*!!!!!!!"</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Then the downward spiral of interconnected reactions set in, and I had a real, bona fide crash. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>You know what I mean, right?</b> After the physical symptoms rear their ugly heads, the other ancillary parts of our "being" feel the need to participate. So next, my emotions got involved, in the form of anger about the fact that I was on the couch again. Then the concomitant sadness that usually follows anger kicked in, which made me feel even sicker. Followed by its ugly twin, "guilt," beating me up mentally with the refrain "How could I have been so stupid?" </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">If that wasn't enough, a thunderstorm rolled in, dropping the barometric pressure like a stone, and with it, my quickly souring disposition. Yes, <a href="http://www.nervepainandweather.co.uk/Pressure_as_link_pain_and_weath.html">barometric pressure</a> changes do affect people with viral challenges like myalgic encephalomyelitis, usually in a bad way. So with no "joy endorphins" firing, and whacked out serotonin, dopamine or whatever the gamut of emotional brain chemicals are, my physical aches and pains felt even worse. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">To say I was "down" would have been an understatement, but I had one glimmer of light at the end of the tunnel - <b>hope. </b></span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Jean Kerr says <b>"</b></span><span class="sqq" style="font-size: small;"><b>Hope is the feeling that the feeling you have isn't permanent,"</b> and I had that definition of hope in two ways. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span class="sqq" style="font-size: small;">First, because I know God didn't bring me halfway around the world to come to this town to <i>not</i> get healed, I had this deep settled confidence that this was just a bump in the road, and it would pass. Because I believe in God and in His plans for my future, I can look at bad days in the framework of eternity. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span class="sqq" style="font-size: small;"> Second, I had hope because I knew something about what was coming. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span class="sqq" style="font-size: small;"><b>Even though I was on the couch, </b>mindlessly surfing cable channels, </span><span style="font-size: small;">I knew if I could get through the night, things would be better tomorrow. Not just because it would be a new day. Not just because the night was over. But because tomorrow morning, I was scheduled for my regular Monday morning infusion of this amazing drug called Ampligen. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span class="sqq" style="font-size: small;"></span><span style="font-size: small;">Having been here now on this chemical for 2 months, <b>I knew that it worked, </b>and that it worked fast. So I actually slept a few hours last night, on the hope of this morning's treatment, and the relief it would provide. And that's the amazing part - it worked even faster than I had hoped! </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">B<b>efore the first 100ml of Treatment #19</b> had been dripped into my veins this morning, I actually felt better. More accurately, as incredible as this may sound, <i>as</i> the first 100ml was entering my veins, I could feel myself get progressively better! I could discern the body aches diminishing; I started conversing with the nurses and patients, and I found my sense of humor returning. By the time all 400ml was in, and the saline and magnesium were finished, I was completely pain free. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">I was stupid this weekend, without a doubt. I went to far, too fast. But thankfully, I had Ampligen today to mop up the mess I had made after my ride. </span></div><div style="font-family: Verdana,sans-serif;"><br />
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</span></div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com5tag:blogger.com,1999:blog-7291854236770250226.post-24549959578728773842010-03-23T12:38:00.000-07:002010-03-23T12:38:51.677-07:007 Absurd Things I Do to Make Life Manageable<span style="font-size: small;"></span><br />
<div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>"I am thankful for laughter, except when milk comes out of my nose." </b>Woody Allen</span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEHSju0ANb8EHkXJC-SQvkmBprD7nlHCzf_YLPJ7k_glnhStQozEHoH1xbHRWzve8lElaHNAqlEALNyInT8sOJpGV0Y_cuXIqhkmsKoHSfWIR2u4k8U2TkOkswShI6u_9eOLNjYe5zI3XN/s1600-h/laughing+face.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEHSju0ANb8EHkXJC-SQvkmBprD7nlHCzf_YLPJ7k_glnhStQozEHoH1xbHRWzve8lElaHNAqlEALNyInT8sOJpGV0Y_cuXIqhkmsKoHSfWIR2u4k8U2TkOkswShI6u_9eOLNjYe5zI3XN/s200/laughing+face.jpg" width="190" /></a></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>It was Christmas time</b> and the jazz band on the corner was playing the requisite boring Jingle Bells music. </span><span style="font-size: small;"><b>I just completed my 17th treatment </b>yesterday,<b> </b>and things are going well. So much so as I passed the corner, I was reminded of how bad I felt when I arrived here three months ago.</span><span style="font-size: small;"> I had just come to the USA in the heart of winter without a coat, to start my <b>Ampligen treatment</b>, and I felt sicker than the proverbial dog. I needed something to break me out of my funk, cheer me up, and make me smile. I saddled up to the leader on the trumpet with the donation bucket in front of him, and said, "Can you play something else?" He replied "Well, the city wants us to play holiday music." I flashed him a $20, and said, "How about something by Steveland Morris?" </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">He grinned from ear to ear, took my $20, and said, "Why not? A little something just for you, by the great <b>Stevie Wonder</b>!" His 5 piece group then lit up the block with a fast version of "Isn't She Lovely?" for 10 minutes, while I just soaked in the shower of brass therapy. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Someone in the crowd expecting "Winter Wonderland" mumbled, "that's absurd!" I just smiled and said to myself, "Yes, isn't it? I'll take absurd right now, if it helps me feel better." </span></div><div style="font-family: Verdana,sans-serif;"></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
<b>Face it- you’re special</b>. You can’t do the same things “normal” people do, and may need to do certain things that others don't, just to survive. But there are ways to manage, even if on the surface they may seem absurd. Here are some simple yet very effective “tricks” I use to help make the days easier, routines more balanced, and my recovery times shorter. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
<b>1. Use a checklist for Daily routines.</b> - Pilots use checklists not because they don’t know how to start the turbines, but so they don’t forget some little detail. Because <b>I know my memory</b> sometimes fails me and I can forget to take important meds, or even forget to eat, I have a checklist of routine things I do each day that I use religiously. This takes the pressure off my mind and also eliminates that cycle of frustration that happens when at the end of the day I’m lying in bed wondering “Did I take my B-12 today?” or “Did I do my exercises today?” My checklist starts with such basic things as "Turn on music" "Draw hot bath" "Take Vitamins" and "Shave." Yes, I've actually had to be reminded to shave- that's how weird this virus is. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
<b>2. Open up the creative side</b>. - I’ve found that when I read short poetry, look at modern art, or rotate photos in frames, my day goes better. My daughter the psychology major tells me I am exercising other parts of my brain by doing so. My Pastor reminds me that I am not just "body," but "<b>spirit, soul and body</b>." All I know is reading a Psalm, listening to Supertramp, or playing the piano makes me feel more at peace even while the virus is raging. For example, since starting on Ampligen I have put over 30 photos of friends and loved ones around my apartment and they make me smile. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b><br />
3. Play “Soundscapes” music.</b> - The cable TV company I subscribe to has over 100 channels of music, and I’ve found a “new age” or “ambient music” one called “Soundscapes” that I like- it is just like the stuff they play at spas and when you get a massage. Slow, gentle, almost invisible music plays in the background of my apartment almost all day. Sometimes I fall asleep to it. The AMTA says that the <a href="http://www.marcome.com/blog/ambient-music-therapy/">ambient music</a> therapy can positively affect all sorts of cognitive and behavioural changes. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
<b>4. Plan to do half</b>. - My NeuroTherapist gave me this idea. She says it’s better when I think I can do 2 hours of shopping, to actually only do one hour, and then get horizontal. If I think I have energy for 15 minutes of walking in the park, I should do 7 or 8 minutes, and then quit. I’ve also found through trial and error it is better for my head and my body to do things in short bursts. If I write a letter I might do it in 3 paragraphs, spread throughout the day. To do my income taxes, I am doing just one page a day, for the next 100 days. A good friend of mine while sick with this virus got her law degree one class at a time, over a 7 year period. Jazz great <a href="http://www.prohealth.com/library/showarticle.cfm?id=2811&t=CFIDS_FM%20">Keith Jarrett</a>, also an M.E. survivor, sat at the piano in 10 minute bursts, wrote a couple notes, and then went back to bed when he was really sick. When we push it, we usually set off the cascade of symptoms- and that is not good. So take in small bites. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
<b>5. Connect with others. </b>– If I didn’t have my wife and daughter, some close friends to talk to by phone, my online forum friends, Twitter, and some fellow patients who understand what I’m going through, I would have gone nuts a long time ago. It helps when I am honest with these folks, and if I’ve had a bad day to admit it. If you are fortunate enough to have a fellow-patient in your life who can encourage you and say “You are going to make it. You’re doing great!” then you will find they make up for all the lost friends and toxic “friends” that are poison. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b><br />
6. Get horizontal, often.</b> - Whether it’s because of our orthostatic intolerance, our immune systems on overdrive, the toxins in our systems, or any of the other things we battle, we need to take breaks. My Doctor says that the definition of a “break” is actually getting my legs and head parallel with the floor, or it doesn’t count. I’ve found that 5 minutes horizontal “recharges” my tanks. I do this in shopping malls, in restaurants, whenever I need the break. When I travel I am shameless. I lay down in the airport all the time, on the dirty carpet, waiting for airplanes, boarding times, whatever. It's amazing how contagious it is. Once other passengers see me on the floor, others do it too! No one likes standing around an airport when there aren't enough seats...even "normal" folks. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
<b>7. Laugh.</b> - There is something medicinal about the endorphin release when I laugh that always makes me feel better. Many researchers have found that <a href="http://www.holisticonline.com/Humor_Therapy/humor_therapy_benefits.htm%20">laughter helps the immune system</a>. Since starting on Ampligen I have purposely chosen <i>not</i> to watch Glenn Beck, Keith Olbermann, or really <i>any</i> news show apart from local weather, because it depresses me. Instead I watch The Comedy Channel, and literally laugh my ass off. When I am with a patient friend of mine I make it my goal in life to make her at least guffaw or chortle, because when she laughs I laugh more! Sometimes when I can’t sleep and I don’t feel like laughing I’ll force myself to “fake-laugh” and after 10 seconds I actually feel the giggles turning to reality. Probably because it’s so ludicrous, I actually find myself the funniest guy I know at those moments, and I sleep like a baby. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Three months ago I arrived in this town to try to get better, and I started my therapy that day with the absurd idea that a little Stevie Wonder music would make me feel better. It was. And it did. And I still keep doing absurd things for that reason. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br style="font-family: Verdana,sans-serif;" /> <br />
</span></div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com0tag:blogger.com,1999:blog-7291854236770250226.post-20885786359026199512010-03-19T12:57:00.000-07:002010-03-19T12:58:37.037-07:00Feeling the Wind on My Face Again<div style="font-family: Verdana,sans-serif;"><b><span style="font-size: small;">Treatment #16</span></b></div><div class="separator" style="clear: both; font-family: Verdana,sans-serif; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiL3L1en6-Jk_PEWQdLwg6xqRteHt5-b_Phs01mRuXtsAopq3_suj0wP5i9bGwNggI2T21xoyw5CHQ_X3PmbZns9iVScZEeyb3XMjEr1TkIbjUS2LVsaVeZc56zPZyLzUgxSumibMeoee3o/s1600-h/happy_couple_in_convertible.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiL3L1en6-Jk_PEWQdLwg6xqRteHt5-b_Phs01mRuXtsAopq3_suj0wP5i9bGwNggI2T21xoyw5CHQ_X3PmbZns9iVScZEeyb3XMjEr1TkIbjUS2LVsaVeZc56zPZyLzUgxSumibMeoee3o/s200/happy_couple_in_convertible.jpg" width="200" /></a></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>Today was the best day</b> I've had in a long time. Like my old 1976 Cutlass Supreme years ago, my engine was humming, my hydramatic transmission was smooth as butter, and I even had the "new car smell" on me. This old vehicle actually felt like all cylinders were firing with all four barrels opened up for a while today! Figuratively, I felt the wind on my face again today! And I couldn't be happier. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>What was my secret?</b> Of course by reason of the title of my blog, I'll start with the <b>Ampligen.</b> I am now in my 8th week of treatment and although I had some dramatic and noticeable improvements my first few weeks, lately those had sort of tapered off. But suddenly, this week, I noticed a new area of improvement in my health that many told me wouldn't be reached until the 4th month - that of my brain.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>The reason</b> that this disease in most countries (outside the USA) is called <a href="http://www.disapedia.com/index.php?title=Myalgic_Encephalomyelitis_%28ME%29">Myalgic Encephalomyelitis</a>, or other variations of that theme, is because the virus finds a way into our cerebro-spinal fluid, and as the name suggests etymologically, gives us "a pain in the head." But it's not just pain we fight - it's the <b>cognitive difficulties</b>, emotional challenges, and lateral affects to other organs that are controlled by the brain, that give us the most trouble.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">It's like having a car built after the year 1999, with <b>a "chip" in the engine that is bad.</b> You could literally baby that car - change your oil every 3000 miles, wash the inside and out every week, do all the scheduled maintenance, and keep it in the garage at night- but if the "brain" called the electronic chip is bad, you've got problems. The engine might be flooding because the "brain" is sending the wrong signal, not because the carburetor needs replacing. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>If you have an honest mechanic,</b> he'll tell you: "your chip is bad" and save you a lot of time and money. Get a crooked one, or an ignorant one, and you'll spend thousands of dollars trying to "tune up" an engine that is perfect, never really fixing the problem - the chip. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>You see, its not that our muscles </b>were made poorly, or that we are lazy, or "always fatigued" and need more rest than others. In reality our bodies are probably stronger than most. The fact is our brains have an invader that is causing all sorts of problems, and our "engines" might be getting some distorted signals. Which could also compound problems with our "transmissions" and "drive-train" and "steering", if you get my metaphor. It's what my friend <a href="http://en.wikipedia.org/wiki/Jay_Goldstein">Dr. Jay Goldstein</a> called "<a href="http://www.prohealth.com/library/showarticle.cfm?libid=9210">Betrayal by the Brain</a>." </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>Don't get me wrong here. Please, I am NOT saying "It's all in our heads." </b>Yes, I do have real muscle aches. Yes, I did see my energy and endurance go downhill. Yes I did have very real migraine headaches, ringing in my ears, lesions in my throat and on my arms, hypogonadism, stomach problems, and more - all very real physical manifestations of this disease. But I also had short-term memory loss, cognitive difficulties, and depression. I know this because I was forgetting names of life-long friends, losing track of my glasses that were on the top of my head at least once a day, and as my wife would tell you, starting to use the "f" word in two languages as an adjective - long before I started watching "<b>Dog the Bounty Hunter.</b>"</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">So today, when I had a <b>2-hour spirited conversation </b>with my Pastor over coffee, one of the most brilliant men and minds I've ever had the privilege to know, and not only kept up with him, but had fun, it hit me. "I felt <i>normal</i> for those 2 hours!"</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>How long has it been since you felt "normal" cognitively?</b> For me it's been quite a while. So the Ampligen is definitely working on my brain now, and I couldn't be happier. But I don't think it was the Ampligen alone. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">Two other ingredients came together this week which I think also contributed to some "chip adjustments" in my cerebellum:</div><ul style="font-family: Verdana,sans-serif;"><li><b>I made some progress with my neuro therapy</b>. Perhaps you've seen Dr. Amen on TV in the USA, or have heard about this. I'll post more in later blogs, but in short, Quantitative EEG and neurofeedback has been proven to enhance the healing of the brain and CNS in CFS patients. When the CFIDS Association was first formed like 20 years ago, there were three main doctors who they brought together to start researching those patients with a "mysterious viral illness." Two (Cheney and <a href="http://www.drlapp.net/">Lapp</a>) did the medical side of the research. The third worked on the brain. She (<a href="http://www.prohealth.com/library/bulletinarticle.cfm?ID=6751">Dr. Myra Preston</a>) proved that Ampligen was fixing the brain, and by adding the neurotherapy, improved Ampligen's results.</li>
</ul><ul style="font-family: Verdana,sans-serif;"><li><b>I socialized more</b>. This might seem counter-intuitive, because usually my habit when I feel sick is go introverted, and not talk to anyone. But another patient friend of mine kind of scolded me for "being on the computer too much" and "not getting out" so I gave it a shot. I spent 35 minutes at a local art museum talking to strangers about a sculpture that looked to me like a placenta, but which they thought held the key to the universe. I had coffee, as I mentioned, with my Pastor. I called some old friends on the phone. I played the piano for some strangers in the lobby of my building. I made a good friend laugh. </li>
</ul><div style="font-family: Verdana,sans-serif;">Now I admit, I'm getting pretty tired now. This old car needs to go back in the garage and rest for the evening. So I still have a way to go.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">But friends, for two hours this morning, I tasted the joy again. I felt the purr of my engine. I sensed the wind on my face, and I remembered what a 350 cubic inch engine with a 4-barrel carburetor could do. And it was heaven. </div><div style="font-family: Verdana,sans-serif;"><br />
</div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com0tag:blogger.com,1999:blog-7291854236770250226.post-49073633655427908542010-03-15T12:07:00.000-07:002010-03-15T12:10:15.858-07:00Weed Killer Turns Male Frogs into Females<b>Treatments #14 and #15</b><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKx-_4Khcot85YjcuCj_3p8tSfxzPsGc2IUitcG-VKK5hcMI04aFfQJyTosKh_jM5lVEOr2Zx1oKtr1P1ohtnenGP9uJgka1l2X2iGrRAREhxcgOXWbPvmaw9QtovlEWgsF5PG7Cxklxj4/s1600-h/girl+frog.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="172" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKx-_4Khcot85YjcuCj_3p8tSfxzPsGc2IUitcG-VKK5hcMI04aFfQJyTosKh_jM5lVEOr2Zx1oKtr1P1ohtnenGP9uJgka1l2X2iGrRAREhxcgOXWbPvmaw9QtovlEWgsF5PG7Cxklxj4/s200/girl+frog.jpg" width="200" /></a></div><br />
<div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>I'll get to the weed-killer analogy quickly. </b>But first,<b> </b>allow me a little celebration- today marks my <b>eighth week on Ampligen</b>, and I've now officially entered the "plateau" phase of my treatment. Whereas at first I was seeing almost weekly improvements in things like my sleep, appetite, and other empirical data (see previous posts) now there really is nothing new to report. My doctors and nurse, as well as other patients, have all told me that the next "bump" in dramatic improvement will come as enter the <b>4th month of treatment</b> - so now I just have to be patient.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Yet although there are not as many visible manifestations, from what I've read, apparently the twice-weekly <b>Ampligen infusion </b>is still silently, secretly, doing its two main jobs:</span></div><ul style="font-family: Verdana,sans-serif;"><li><span style="font-size: small;"><b>Up-regulating or down-regulating</b>, as needed, an enzyme called the "2 ,5 oligoadenylate synthetase/RNase L (2-5A synthetase/RNase L) pathway", and; </span></li>
</ul><ul style="font-family: Verdana,sans-serif;"><li><span style="font-size: small;"> Up-regulating or down-regulating the "<b>P68 protein kinase</b>" pathway. </span></li>
</ul><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>I flunked out of chemistry in College</b>, so these words of course teach me about as much as I would learn if I was reading the phone directory from Lisboa, in native Portuguese. But thanks to the Internet, I discovered more about how and why Ampligen is working for me.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Some viruses, such as M.E., HIV, Herpes, and HBV overcome intracellular immunity by producing substances that deactivate RNase-L, thereby allowing the virus to <b>multiply freely </b>within the intracellular environment and clinical deterioration occurs. Think of that. Virus cells have been multiplying in my body at will. Scary thought. But Ampligen helps our bodies restore the enzymes that help control the uninhibited growth of some of these viruses. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Think of planting a lawn. In many parts of the world you can buy seed that has a built in <a href="http://en.wikipedia.org/wiki/Funk_Brothers_Seed_Co._v._Kalo_Inoculant_Co."><b>"inoculator"</b></a> that keeps nitrogen up, and as a result, weeds from growing around it. It's just an enzyme or bath that they soak the seed in, and it works! I've personally planted alfalfa in desert climates that had this inoculant, and it was perfect. Best of all, every season it came back stronger than before!</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Now, if that seed is <b>left in the sun</b> before planting however, and that inoculation enzyme gets "burned off", the plant will be weaker, and weeds will grow around it. So then the gardener has to resort to more antiquated weed prevention...like pulling the weeds by hand, or spraying some weed-killer chemical all over the lawn. But those measures always are less effective, because the <b>weed killer invariably kills </b>some good seed, and pulling weeds by hand always takes out some good growth. <b>So potent are weed-killers,</b> that the National Academy of Sciences reported in a peer-reviewed journal that they can actually <a href="http://www.theglobeandmail.com/news/technology/science/weed-killer-can-turn-male-frogs-into-females-study-finds/article1485580/">turn male frogs into females. </a></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>So think of your body as having it's "inoculant" missing</b>...and then doctors, who can see the weeds in your body, start prescribing antibiotics, anti-virals, and sometimes even resort to "pulling" things. <b>You're catching my drift now, right? </b>Those "solutions" always have side effects, just like in my lawn example above. Our stomachs don't like antibiotics, because they kill the good bacteria as well. We get our tonsils out, or sinus surgery, because our bodies are no longer "innoculated" against allergies or sinus infections. And the weed-killer chemicals keep trying to kill the weeds, but they leave scorched earth behind.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Ampligen is better than the weed-killers</b>, in that it actually <i>restores </i>our body's inoculant power. How?</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Publishes research shows that Ampligen activates 2-5A synthetase. Activated 2-5A, in turn, activates this enzyme called <b>RNase-L</b>, which <b>destroys viral RNA. </b>Let me underscore that point- Ampligen's work on this enzyme makes it possible for actually <b>destroying</b> <b>viral RNA</b>. 2-5A itself also can control the growth of certain human tumor cells and inhibits reverse <b>transcriptase,</b> the enzyme both HIV and HBV use for reproduction.The protein kinase (p68) pathway is also affected in a similar manner.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">So for the first time since contracting this hideous disease, with the help of Ampligen, instead of using the "weed-killer" pills, my <b>body's immune system</b> is learning how to beat back this virus, keep it from replicating, and destroy it. In short, my immune system is relearning how to do it's job!</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Plus, as a side benefit, <b>I'm feeling more "masculine" day by day!</b></span></div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com0tag:blogger.com,1999:blog-7291854236770250226.post-9086228733043522482010-03-09T12:37:00.000-08:002010-03-09T12:37:02.278-08:00Being "Pushy" with Your Doctor<span style="font-family: Verdana,sans-serif; font-size: small;"></span><div style="font-family: Verdana,sans-serif;"><b><span style="font-size: small;">Treatment #13</span></b></div><div class="separator" style="clear: both; font-family: Verdana,sans-serif; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgphhuoVKbOReL-l25LBU0jhnPEpLNYQjJhvogKiaNd45EK7Wf1-nEp0LMBOz6gfARMlUCQ22jZuktMwYjhm8RlEeIkNlT7bDmxO8qCdyPuvvmA5E21iNPJtgD9Jnuo2_bArHtwJLcqwwZM/s1600-h/pushing+rock.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgphhuoVKbOReL-l25LBU0jhnPEpLNYQjJhvogKiaNd45EK7Wf1-nEp0LMBOz6gfARMlUCQ22jZuktMwYjhm8RlEeIkNlT7bDmxO8qCdyPuvvmA5E21iNPJtgD9Jnuo2_bArHtwJLcqwwZM/s200/pushing+rock.jpg" width="197" /></a></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Today's infusion</b> marked the beginning of my 7th week taking this treatment, and the 40 minute drip-rate of the 400ml seems to be about right for me. I am also taking magnesium in saline once per week, which helps with the side effects of muscle aches.I am so thankful for this drug, because I can feel it working and making me stronger, week by week. But I also know that for most, until the drug is approved, getting Ampligen is problematic. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Someone asked me recently:<b> "But what can I do if I am not on Ampligen?</b> My Doctor has no suggestions for me!" My response was longer than what I am about to share with you here, but the heart of my answer was <b>"Push your Doctor to let you try things others are using." </b></span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Perhaps that seems like a Sisyphean pursuit</b> to you with your physician, like pushing a boulder up a mountain, but I can tell you it's worth the effort. <b> </b></span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Because I am a tenacious researcher,</b> I discovered a number of treatments that worked for me pre-Ampligen, by searching published medical journals, doing exhaustive online research in a number of languages, and literally, <b>hounding doctors</b>. I've had the privilege of conversing with at least a half dozen of the leading M.E./CFS specialists in the world, and because I lived outside the USA, had access to some things that weren't available in the states. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Tragically</b>, I'm convinced that for <b>the average patient</b> suffering from this hideous disease, your local doctor who doesn't specialize in this infirmity probably won't tell you about most of these options. But maybe you should at least <b>"push" the question.</b> </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>If you haven't explored any of these options yet</b>, I encourage you to take "ammo" to your doctor, and basically ask him or her, <b>"any reason why I shouldn't be trying this?" </b></span><b> </b></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>If they say "why?"</b> you can say: "Because other patients have used them to some success, and I have some research to back it up. And oh, by the way, why the hell not? <b>Don't you want me to get better?" </b>Then hand them your pen and say, "is your prescription pad handy?" </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>Here are my top five recommendations: </b></div><span style="font-family: Verdana,sans-serif; font-size: small;"></span><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Nexavir </b>(Kutapressin) - </span>Based on the theory that the <a href="http://www.prohealth.com/library/showarticle.cfm?id=3525&t=CFIDS_FM">immune system is dysfunctional in CFS</a>, researchers in Texas rediscovered this immune system adjuvant derived from porcine liver made popular in the 1930's. Kutapressin is an amino acid complex that was first used for Herpes Zoster. I would inject this 3 times a week, and could feel a difference. You'll need to ask your Doctor for a prescription for the vials and needles. <span style="font-size: small;">Now called Nexavir, this drug was around for so long it didn't even have a patent, and after Schwarz Pharma stopped making it, it was reintroduced a few years ago, and you get it from <a href="http://www.nexcopharma.com/mailorder.htm">this company. </a></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Imunovir</b>. Most research suggests that our immune systems are in <a href="http://www.cfids.org/archives/2001rr/2001-rr1-article01.asp">over-drive...working too hard.</a> Isoprinosine is an immune modulator, probably helping to shift Th2 back to Th1, while also serving as an anti-viral. According to studies, </span><span class="bodycopy" style="font-size: small;"> the immunomodulating and antiviral properties of the synthetic purine derivative Immunovir in CFS patients revealed enhanced natural killer cell activity and clinical improvement of fatigue. Lots of HIV positive patients all over the world take this stuff. You can get these tablets by <a href="http://www.rivexpharma.com/products_imunovir.html">mail from Canada</a> from Rivex Pharma and you take it on a "pulsing" schedule, 5 days on, 2 days off; 2 months on, 1 month off. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>B-12 with Glutathione Injections.</b> CFS patients use up B-12 and glutathione in our systems very fast, and glutathione depletion is a problem. <a href="http://aboutmecfs.org/Rsrch/GSHMethylation.aspx">Read more here. </a>With a few other ingredients added this treatment is known as a <a href="http://www.endfatigue.com/health_articles_f-n/IV-myers_cocktail.html">Myer's Cocktail</a> and has been used by many CFS doctors for years. Here's the <a href="http://www.fmaware.org/site/News2?page=NewsArticle&id=5322">recipe</a> if your doctor or compounding pharmacy needs it. I self-injected B-12 and Glutathione and always noticed a difference when I stopped. You'll need a script from your doctor, but you can <a href="http://www.ehow.com/how_5122163_selfinject-vitamin-b.html">self inject.</a> </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Moclobemide.</b> This is one of the first anti-depressants ever developed, and is a <a href="http://en.wikipedia.org/wiki/Monoamine_oxidase_inhibitor">reversible MAO inhibitor</a> - acting on the serotonin in our bodies. Remember the virus is said to be in our CNS and brains, as well as our stomachs, so it helps your serotonin balance. It's not that we are sad, we just have <a href="http://www.fibromyalgiasyndrome.co.uk/melatonin-serotonin.html">screwed up brain chemistry</a>. Did you know that there are serotonin receptors not only in your brain, but in your stomach as well? This drug helps keep the serotonin you've got, working. Taken in recommended doses, <a href="http://en.wikipedia.org/wiki/Moclobemide">Moclebemide</a> does not mess with tyramine and does not give you the "cheese effect," so diet is not an issue as with other MAOIs. There are absolutely zero side effects relative to libido or sleepiness, and it is available everywhere except the USA- not because it doesn't work, but because the drug monopolies want to sell you Prozac. <a href="http://biopsychiatry.com/moclobemide.html">Research shows</a> it works as well or better than the newer ADs. And because it is reversible, I found it to be easy to manage. In Canada or Australia Doctors know it under the brand names Aurorix or <a href="http://www.antiaging-systems.com/a2z/manerix.htm">Manerix</a>. </span></div><div style="font-family: Verdana,sans-serif;"> <span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Topical Ketamine</b>. For pain emergencies, like unbearable migraines, this is the best reliever out there in my view. It's called a "dis-associative" in that unlike most pain relievers, it basically doesn't work on the pain itself, but rather just the "pain signal" in the brain. It chemically "unplugs" the message that tells you your head is killing you. <a href="http://www.sleepydust.net/Jay-A-Goldstein-Betrayal-Of-The-Brain.html">As documented in "Betrayal by the Brain, Dr. Jay Goldstein</a> pioneered the use of topical Ketamine for CFS patients, and you can ask your Doctor to order it from a compounding pharmacy. Don't freak out by the "bad rap" and misinformation about <a href="http://en.wikipedia.org/wiki/Ketamine">Ketamine</a> ...face it, most drugs that work on pain could be sold or used on "the street" for nefarious purposes. But on the few occasions when I was <b>vomiting</b> due to migraine pain, the Ketamine "gel" gave me relief. And unlike opiates, which tend to be Th1-Th2 shifters, Ketamine doesn't affect your immune system at all. It's also been reported in Journals as being a very effective <a href="http://www.sciencedaily.com/releases/2008/02/080221090953.htm">anti-depressant</a> as well. But I only list it here for the pain relief factor. I probably used it less than 6 times a year, but when I was desperate, it literally saved me. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Today, I take none </b>of the aforementioned anymore, except a small dose of moclobemide. The Ampligen is the job now, and the protocol requires that you not be on any of these types of immunomodulators while you are in the trial...so I couldn't take them even if I wanted to. But these were a lifesaver to me before I started Ampligen. Here's a nice <a href="http://www.anapsid.org/cnd/diagnosis/cheneyis.html">summary of perhaps why. </a></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>As I've shared in other posts</b>, the reason I have taken the radical step of uprooting my life and family and moving to a foreign city to get Ampligen, is that I decided I needed to be almost militant about saving my life. If that means we are considered "selfish" by the occasional nurse, or "pushy" by a Doctor, so be it. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><b style="font-family: Verdana,sans-serif;"><span style="font-size: small;">In my view, "pushy" is better than "so sick I can't move." </span></b>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com4tag:blogger.com,1999:blog-7291854236770250226.post-77479258654667306112010-03-06T13:09:00.000-08:002010-03-06T13:11:15.400-08:00Feels Like Victory!<div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Treatment #12</b></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiokM8XNJOwRpiQq_qI3Psnby4zJ7jCuKEj3d2YACQacZ4hrh83Wknd-wDkjs8_-aRltTQhUn5Ypqkdgm06Fh7Gg-B4FKTW5kgsVu_fHU67NoLCu0PN9aZ66J9uV2hw3bBNb3ETb5vsaMK4/s1600-h/apocalypse-now-3.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="147" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiokM8XNJOwRpiQq_qI3Psnby4zJ7jCuKEj3d2YACQacZ4hrh83Wknd-wDkjs8_-aRltTQhUn5Ypqkdgm06Fh7Gg-B4FKTW5kgsVu_fHU67NoLCu0PN9aZ66J9uV2hw3bBNb3ETb5vsaMK4/s320/apocalypse-now-3.jpg" width="320" /></a></div><div style="font-family: Verdana,sans-serif;"><b>I hope this doesn't gross you out, </b>but yesterday I ran to the toilet 9 times and had <i>nothing</i> to show for it. Yes, another surprise, yet not altogether bad result of my Ampligen treatment. But one I actually was happy about. Let me explain. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>I guess I'm now considered a veteran </b>- because my twelfth Ampligen infusion went off like clockwork. Gwen found a nice vein the first try, adjusted the rate to take 40 minutes, and because by coincidence we were the only ones in the room that day, we chatted about her son, and life in general. She's a great nurse and I realize how much her kind and friendly personality makes the infusion process less dramatic for me. What I didn't know was that there was drama coming later. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>Over the past 6 weeks on this drug,</b> the side effects themselves have been unpredictable, but the timing of them pretty regular. They usually begin to appear at least 4 hours after the chemical is dripped into my body, and hit big time by the next day. I've had everything from headaches, extreme muscle aches, nerve twitches, to strong lower back pains - but never the same one twice in a row, and never all of them at once, and rarely repeated. It's almost as if the Ampligen is taking care of <b>different areas of my body one at a time.</b>.. and then moves on. For example, early in my treatment my glutes (buttocks muscles) would REALLY hurt me the day after my infusion - more sore than if you had done 10 sets of squats, then ridden a horse for half a day, and then had the flu. But I no longer feel that anymore. <b>The side effects are moving to new places. </b></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>This week it was my stomach's turn to react.</b> And react it did. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>The Battle of the Bulge</b>. I've never felt this situation before. How can I describe the <b>contradiction in my gut?</b> It was as if I was constipated and had the "trots" all at the same time, with turbulence and pain moving between my stomach, upper, and lower intestines at will. If you said it felt like a battle was going on in there, you wouldn't be overstating it. This was nothing like the worms, parasites or other stomach invaders I've had in over 30 years of globetrotting. I have traveled to many tropical countries. I am very familiar with amoebic dysentery, "Montezuma's Revenge" and traveler's diarrhea - trust me, this was not the same.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>This was more like an army</b> (my own immune system) waging war - rooting out insurgents or terrorists in a territory that they had long held hostage, and had called their own for a long time. Think of what it takes for American forces to find Taliban terrorists rooted into the homes and city-centers of the people of Afghanistan, and you'll get the picture. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>Even in my pain and discomfort,</b> I had the sense that Ampligen and my immune system were finally starting to turn the tide, and <b>kicking some ass</b>! That what I was feeling was like what one G.I. in Afghanistan said after too many years of losses and bad battles, and they finally mounted a drive into the heart of Taliban territory. <b>After seeing four of his buddies</b> blown up in roadside bombs, he and his squadron were finally given the green light to go after the murderers hidden in homes. He turned to the news camera with his night-vision equipped XM110 semi-automatic and said "we're not going to take this shit anymore. Time for victory. Say hello to my little friend."</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>I think the Ampligen was helping my defenses</b> expose one of the invader's long-held comfort zones in my body- my stomach, and were going after them. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>My gut was confirming </b> what I had read recently, that researchers documented in some pretty well publicized reports in 2007; that while various viruses have been shown to trigger M.E./CFS, (including Epstein–Barr virus, <i>Chlamydia pneumoniae</i>, parvovirus B19, <i>Coxiella burnetii</i>, Borna disease virus, varicella zoster virus, cytomegalovirus, and human herpesvirus type 6 HHV-6), that the most <i>common</i> of all was enteroviruses -- viral microorganisms that reside in the digestive tract. These well documented <a href="http://www.medicalnewstoday.com/articles/82329.php">reports</a>, <a href="http://abcnews.go.com/Health/Germs/story?id=3596928&page=1">news stories</a>, and peer-review <a href="http://jcp.bmj.com/content/61/1/1.full">Journal articles </a>showed how almost all of us who suffer from this disease, <b>have invaders in our stomachs.</b> That the Ampligen was kicking up some trouble there in my body only served to confirm it. And apart from the pain, that actually made me kind of happy.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>How Ampligen does this</b> is still sort of a mystery to me. As an "experimental drug" you can't just go to the PDR or Drugs.com and look up the "mode of action" or "side-effects" that you can with an FDA approved drug. But there is some data out there, which I continue to collect and post as links on the left column of my blog <a href="http://ampligen-treatment.blogspot.com/">The New Ampligen Diaries</a>. Feel free to check them out. </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><b>Today, all is quiet on the western front.</b> The turbulence in my stomach has subsided, and thanks to a little help from Pepto Bismol, I've been to the bathroom and had victory. OK, I can't resist. Guess I have to end with the Robert Duvall line here. "I love the smell of napalm in the morning. It feels like...victory!"</div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com1tag:blogger.com,1999:blog-7291854236770250226.post-12602189773788163462010-03-03T13:39:00.000-08:002010-03-03T13:40:17.908-08:00Even a 1% Change Makes a Difference<div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Treatment #11</b></span></div><div class="separator" style="clear: both; font-family: Verdana,sans-serif; text-align: center;"><span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSbhU58qE4Hw2xws4CoiuWmNx0l8Q1gYcE6tL4tHPOiQmhOHBaW3SvX9gSTv-Iyl09Ivg9HvXgA5GugV4_umIDNSL1FOsxXOBsOgoQcKpyWNXq6zYalJmWinqLX37ENxrAQ3FtHgJDvcBf/s1600-h/house-m-d-gregory-house.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSbhU58qE4Hw2xws4CoiuWmNx0l8Q1gYcE6tL4tHPOiQmhOHBaW3SvX9gSTv-Iyl09Ivg9HvXgA5GugV4_umIDNSL1FOsxXOBsOgoQcKpyWNXq6zYalJmWinqLX37ENxrAQ3FtHgJDvcBf/s200/house-m-d-gregory-house.jpg" width="200" /></a></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>I made three very small changes in my protocol</b> today, and although I really can't determine scientifically their effect, experientially I can say that while all three were very minor, percentage-wise, collectively they added up to a big difference in how I felt. As usual, to me it is the <b>little things that seem to add up,</b> either positively or negatively - to how I feel overall. It didn't used to be that way, but as a person with a mysterious virus roaming around his body, and an immune system working it's little ass off trying to fight it, sometimes just a 1% change in something I do, or don't do, makes a difference.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">There is a hilarious line from the award-winning TV show in the USA <b>"<a href="http://www.fox.com/house/index.htm#home">Dr. House</a>"</b> where the irascible genious Dr. Gregory House is trying to make this very point. One of his assistant Doctors is arguing that even though the test result is off slightly, it is still "in range."</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Dr. Foreman says:</b> <i>"It's off by one percentage point. Within range. It's normal." </i></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Dr. House replies:</b> <i>"If her DNA was off by one percentage point, she'd be a dolphin!" </i></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">So with that in mind, I share these seemingly insignificant, tiny changes with you.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>A Little Change in my Headgame</b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>This could be my theme</b> for the week, because <b>how I think</b> about me and my circumstance, actually does affect <b>how my circumstance affects me</b>, and my body. Unlike last week, where I simply arrived at the clinic and was so surprised by some of the negative circumstances I encountered, today I spent time getting my "headgame" together before entering - to try to avoid the surprises. What I mean by that is I proactively calmed myself, did some deep breathing, and even envisioned how I would react if the nurse missed the vein.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>It's been documented </b>that because our immune systems are on overdrive, and we have lived with so much pain for so long, our brains and emotions sometimes "over-react" to stimuli. I tell my wife that sometimes just the rattling of grocery bags in the kitchen sounds in my head like she is banging trashcan lids together one inch from my ears. So unlike last week, today I actually did a little "role playing" in the car ahead of time, and said to myself "OK, if she misses the vein, no big deal. It's not that painful. She'll find it the second try. No need to flinch." </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">My goal was to try to prevent the release of <b>"bad" brain chemicals</b> by limiting the stress and anger that comes through the natural fight/flight mechanism, that for us is often too sensitive, and is too quickly triggered. I mean, if some thug is about to attack my wife, I WANT these chemicals coursing through my body. But they are overkill when all you want is a tiny needle and an I.V. drip to get going.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">It turned out my <b>pre-game prep was wise,</b> because it turned out Gwen had to stick me twice to find a good vein. But because I had already anticipated the reaction, I actually was pretty calm about it, and hardly reacted at all. I think I might have said, "whoops, that missed," because you can usually feel it when the needle pokes out the back of the vein,or misses completely. Gwen actually thanked me for "not stressing her out," so we both were much better for it today. The last thing you need is to have the person with a needle in their hands hovering over your vein, too stressed out.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">But more importantly, I learned something I am going to expand on and develop further as the weeks ensue - that <b>part of my healing</b> can actually come from the <b>environment I establish myself, for myself.</b></span> I don't mean anything goofy like mind over matter or Christian Science, where we deny real symptoms and pains. But i learned that sometimes anyway, if I can choose to avoid stress, I can give my body a break by not flushing it with those stressor chemicals, and hormones that ensue. </div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>A Little Change in the Infusion Rate</b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">The second thing I did differently today was to slow down the drip slightly. Thanks to a friend who had a similar therapy a few years ago, she called my wife to recommend that because my body was much like hers, with very low body-fat percentage, I might benefit by a little slower infusion. Her doctors told her that "skinny" people's bodies just can't absorb or metabolize that much drug infused that fast, as well as more portly folks. There was a study apparently done on chemo-therapy patients that showed just changing the rate by 10% could make a difference. So I asked Gwen if it was permitted, and she said, "sure!" So instead of taking 30 minutes for the 2 bottles to infuse, we took 40 minutes.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>A Little Change in my Treatment Mix</b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">The last thing I did differently today was to <b>add some magnesium</b> to my saline after the Ampligen. I had read from numerous other doctors that magnesium could help with both the muscle aches and flu-like symptoms that were the natural side effect to our immune-systems' boost that ampligen provoked, and my Doctor gave me the green light to try it. So at the end of the Ampligen, Gwen injected some small amount of magnesium into my saline bag, mixed it up, and let 'her rip.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>A Little Change in the Results</b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>This was the easiest infusion day I've had in weeks</b>. I had hardly any muscle aches whatsoever, and the flu-like symptoms came as usual, a few hours later, but they were much more tolerable. My appetite, which is a good indicator of how I feel, returned. And amazingly, for the first time since being on this protocol, I actually wanted to watch TV with my wife on the day of the infusion. Usually, the sounds and lights of the TV shows were too much for me, but for two full hours we watched repeats of this show <b>"Biggest Loser"</b> with many laughs and tears. It turns out that the people on that show are some of the <b>bravest, winners</b> you'd ever want to meet!</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>All of these were small changes</b>, and in many ways, hardly worth the time to mention. But for those of us fighting this disease, even 1% changes can make the difference between feeling like a human, or a dolphin. Seriously.</span></div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com0tag:blogger.com,1999:blog-7291854236770250226.post-54833138995579900422010-02-27T08:17:00.000-08:002010-02-27T08:19:58.590-08:00Fighting the Insensitivity of Others<div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Treatment #10</b></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2CCLi-v7OgqqOiB7gF5OzJUPerePjz08E0UJJOcsFAxa06_G1875kLMtV1R7P0328g1mZQ2qDXxtrsb7BF3Kre6RaI9wYLX2PYnSkxpjmnCznb6YSTv4qAs5-Ag8KUw8_FJ_UomLeKPxG/s1600-h/cheer+up.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2CCLi-v7OgqqOiB7gF5OzJUPerePjz08E0UJJOcsFAxa06_G1875kLMtV1R7P0328g1mZQ2qDXxtrsb7BF3Kre6RaI9wYLX2PYnSkxpjmnCznb6YSTv4qAs5-Ag8KUw8_FJ_UomLeKPxG/s320/cheer+up.jpg" /></a></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b><br />
</b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Of all the things we have to deal with </b><i>internally</i> fighting this hideous disease, to me, the things that we fight <i>externally</i> are sometimes more debilitating. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>This week I came face to face</b> with one of the biggest enemies to recovery, the ignorance and <b>insensitivity of other people</b>. In my case, this shocking reminder of just how alone I really am in this battle came in the form of reminders from the two groups in my life where I least expected it - the medical professionals treating me, and from certain family members who really do love me. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Let me dispatch both quickly, so that I don't re-attenuate my anger and dissapointment, and allow them to adversely affect my healing any more.</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>When it comes to family</b>, (in this case some blood relatives who live a distance away and who communicate to me through text messages,) I forget that they just <i>don't understand </i>what I'm going through. Even though I've tried to explain it, and have asked them to read this blog along with the comments and struggles of others on blogs like this, they seem to think all I need is a pep talk. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>There is a terrible story that has gone around for years</b> where someone is trying to cheer up Mary Todd after the most horrendous thing happened in her life. A direct relative of hers told me this story so I feel at liberty to quote it here. The punch line was, as this "well meaning" yet ignorant person tried to console her, he said, "Well, apart from that, how did you like the play Mrs. Lincoln?" </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Sometimes I think my relatives have about as much sense when it comes to this horrendous thing in my life. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">I remember reading in a <b>British publication a leading M.E. doctor</b> saying "if my patient's families would understand that for most sufferers of M.E., both the symptoms and the reactions to the viruses raging in their bodies are <i>worse</i> than that which an AIDS patient experiences, they might get a clue." I hate to quote that statement to my family, although I believe it to be true, because I try not to freak them out. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>On Ampligen, as others have documented,</b> my symptoms get worse before I get better. So this past week has been extremely difficult, with extreme flu-like symptoms, body aches, emotional roller coasters, migraines, stomach turbulence, and more. I don't know about you, but when I feel like that, simple motivational phrases and "positive thinking" is not going to do it for me. It's like passing a soldier bleeding on the side of a bombed out building in Iraq and telling him to "Cheer up! Think positive! The Army loves you." </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Then there are my Doctors </b>here in the USA<b>.</b> This week I also discovered what I had been reading about for years, but by reason of living outside the states, hadn't experienced first hand - the overworked, under-staffed, barely competent office that is called a physician's "practice" or medical center here in this country. I won't use this space to express my amazement at the denegration of this industry. I'll just say to my fellow patients, in my view, you probably know more about this disease than they do. You probably are better suited to know what you need, through research and forums like this one, and listening to other patients, than you are trusting your physician to know what is best for you, and thinking he or she is "plugged in." </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">It may not be their faults, personally, but in my opinion, they have neither the time nor finances to invest in maintaining their "edge" against this disease. They are so strapped for time and resources that they do not have room for reading basic journal reviews, dialogueing with other physicians, or probing new solutions that other physicians are trying worldwide, They certainly don't spend any time doing the research that you and I do - and that to me is frightening. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">I won't even go into the way the office is "run", the lack of administrative cohesion, or the abject lack of professionalism from some of the office staff because Doctors are forced to hire essentially minimum hourly wage workers "off the street." One nurse told me that she was never even interviewed by the nursing service in person! Ever! They hired her by paperwork only. </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Other patients have warned me </b>not to get distracted by these obvious problems, that really tend to scare you, so I try to just focus on my health, and just getting my Ampligen twice a week. But I will say, it still shocks me that no one in that office who swore the hippocratic oath, <i>ever</i> volunteers <i>anything</i></span> about my treatment, about what to expect, about the symptoms of my disease being attenuated by Ampligen and side effects I should anticipate. </div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>It was through forums like this one </b>and other patients that I found out I should probably try taking a saline infusion after the Ampligen. It was from another Doctor in town who has seen other Ampligen patients that I was told about getting magnesium in my saline, in order to help with the muscle pain. It was through another Doctor in L.A. that I learned that any immuno-modulator like Ampligen or Interferon messes with the serotonin in the brain. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">When I experienced the depression trough that I posted about last week, and expressed that to my Doctor, his reaction was to take notes and say "mmm hmmm." No explantion, no recommendations, no comment whatsoever! </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Thankfully, from another PhD friend on another M.E. forum, I had some explanation that made sense. This super guy told me: </span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><i>"Cytokines, like the interferon production stimulated by Ampligen, act directly in the brain to cause symptoms of sick behavior. Apparently the body's plan is to get us to withdraw via feelings of anxiety and depression until the infection is dealt with. Unfortunately, for those of us with chronic infections, the anxiety and depression persist. When we take Ampligen, TF or other immune boosters/modulators, we go through a fresh round of intensified psychological correlates of the immune activation."</i></span></div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">And from Dantzer and Kelley, 2006:<br />
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<i>Cytokines “act in the brain to induce common symptoms of sickness, such as loss of appetite, sleepiness, withdrawal from normal social activities, fever, aching joints and fatigue…The fact that cytokines act in the brain to induce physiological adaptations that promote survival has led to the hypothesis that inappropriate, prolonged activation of the innate immune system may be involved in a number of pathological disturbances in the brain, ranging from Alzheimer’s disease to stroke…Indeed, the newest findings of cytokine actions in the brain offer some of the first clues about the pathophysiology of certain mental health disorders, including depression.”</i></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Thank God for the Internet, and online Forum friends like him, for helping me understand what was going on in my body! Or for at least giving me a clue. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Wouldn't it have been great for my Doctor to share a little tidbit like this with me? Forget the fact that he is my physician, wouldn't it be something a friend would want to share with me? </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>So last week was, in a sense, my "Ford's Theater Revelation."</b> I now know that people are insensitive about me and my affliction. OK, I get it. I am here in this country for one thing, and one thing only- getting that amazing medicine called Ampligen in my veins twice a week. I am not expecting the physicians in the office to monitor me, inquire about me, or even care about my symptoms. I do not expect them to tell me in advance what I am about to experience, or offer counsel. I am thankful that my nurse, Gwen, is a sweetheart, and is a professional, and makes my treatments pleasant. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">I know that Ampligen is working, and I thank God for Hemispherx and the fact that this medicine exists. That the FDA, the American medical system, the malpractice insurance rates, the inferior staffs, and the overworked, numb doctors and all the rest make the patient's journey such a challenge today, is a shame. That some of my closest relatives think that when I am down, sick and depressed because of chemicals raging, all I need is to read a motivational phrase from Dale Carnegie, is not ideal. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>But now I know not to expect more</b> from these folks. Like the guy in Ford's theater with Mary Todd, they haven't been through anything like this before, are at a loss for words, and really don't know what to say. I can accept that. </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>But excuse me if</b> to either groups, I choose sometimes not to take your calls. You don't understand, and sometimes <b>there is nothing I can say to make you understand. </b></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
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</span></div>Kelvin Lordhttp://www.blogger.com/profile/15444830152654364397noreply@blogger.com2