Friday, March 15, 2013

Everything I Needed to Know About Managing My Health I Learned at Disneyland

The patient didn’t know it, but she was just 60 seconds away from relief. 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 fast in both diagnosis and treatment.

“Dr. Goldstein” she said with furrowed brows, completely unaware that she was interrupting my appointment,  “I don’t think this one is working either.” Her forearms had lots of little circles of goo on them, indicating a number of product tests were going on that day.

PLO gel 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?”

Marie didn’t seem to hear.  She was focused on the words “horse” and “equestrian.

“You use horse medicine on me?” she asked incredulously.

“How many minutes has it been Marie?” Dr. Goldstein persisted.  

Still a little bit bugged by Marie crashing my appointment, as well as the fact that she was using up my time with the Doctor by standing there mute, I decided to help her.It came out more acerbic than I wished:  

“If words fail you why don’t you just tap out the answer with your front hoof?”

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.”

“But I still am at 7 on the pain scale doctor, and…oh, wait, what it is going on?…Dr. Goldshteehhhn…”

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 started snoring.

Dr. Goldstein immediately called for staff help, got her up into a comfortable lounge chair, and said, “What are you feeling now, Marie?”

“Wonder…wonderful,” she slurred. “I feel no pain. May I go back to sleep please?”

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!” 

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, it all comes down to speed.

Rich Van K 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.”

For most of the first 2 decades that I battled this disease I played by the rules. 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. “Another half-year of my life just to find out that Valtrex doesn’t help me.” 

So beginning two years ago, I started what I call Kelvin Lord’s Magic Kingdom “maximized experience” approach to managing my health. 

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 Magic Kingdom entrance in Anaheim.    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 maximize your experience at the Magic Kingdom. “

Our strategy for this “maximized experience” was simple - get on as many rides as possible, in the fastest time possible, 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 everything Disneyland had to offer at the time, exhausting all our tickets, all in one day.

When I left Charlotte in January of 2011, having finished a full 52-weeks of Ampligen, I was leaving victoriously, with improvement in a number of areas of my health.  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 anything.

So with Doctors blessings, starting 2 years ago, I made it my mission to try, test, and sample as many of the leading therapies and meds as possible in a one-day window. 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.”

Like Paul Newman’s character in The Verdict, 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.

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 Dr. Barry Marshall discovered the amazing cure for ulcers only by ingesting a beaker full of bacteria, and seeing how his body reacted.  Again, it comes down to how much time you have- for me as a Baby Boomer with limited years left, I need to test these things fast. 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.

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 Kelvin Lord’s typical Disneyland Experience day. This just happened a few days ago:  

It was the end of a long week, and 15 minutes before my last appointment was going to arrive, I felt the brain-fog 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.

However on my new “maximized experience” program, because I needed to feel better NOW, in 10 minutes or less, here’s what I did:

-Got a blue syringe and shot myself 2 ML of B-12;
-Changed the needle and gave myself a shot of Nexavir;
-Injected .5ml Glutathione IM;
-Ingested two tablespoons full of coconut oil;
-Chugged 8 oz. of fresh carrot, celery and garlic juice;
-Gave myself a coffee, nitazoxinide, garlic oil enema;
-Rubbed in some topical pregnenolone/DHEA;
-Took a half-dose of low dose naltrexone. 

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.

Are you waiting weeks or months to get “permission” to try something that other patients or doctors are using? Perhaps you should think about speeding that process up. 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.

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 DEA is not enforcing this prohibition.  

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 “Tack” store for equines. It cost me $12 for the horse version.  If I had to get the human version in Europe called Stromectin, I’d be out $1200 with shipping.

The first time I took the horse medicine that came with a picture of Clydesdale on it, I said to my wife as we sat down to dinner: “I don’t think this is working.”

“How much did you take?” She asked. “How many mgs?”

Lowering my head and thrusting my front foot forward, I pawed the ground three times,  Mr. Ed style. Tap - tap – tap. 

“Ah, 3 mgs. Good boy!” my wife responded, getting the joke. “Now let’s get you some food. You must be hungry as a…”

Wednesday, February 27, 2013

Having a Regular Day

The timing of the blindness 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.  

I had just left the all night pharmacy having picked up a few items on special my wife said we really needed, and I struggled to get the defroster on. For some reason, the windshield wouldn’t clear completely. But I motored on anyway.

I had been finished with Ampligen for almost a month now, 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 Detox program and Methylation Protocol.  So I had been on both these new treatment plans for a couple weeks, with no noticeable side effects. That is, until that moment.

As I passed a big intersection lit up by Las Vegas style signage, it became obvious. The defroster wasn’t the problem. My right eye was! 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.

The last time one or both of my eyes stopped working 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. 

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.  

Besides, I thought, this is evidence that the Detox and Methylation are working!  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. 

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 Stevie Wonder or Ray Charles get behind the wheel,  I forced my eyelids open in an effort to look “normal” to the officer.

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 “my proof of insurance” first. 

Now I don’t know about you, but even on a good day, with clear vision, finding registration paperwork in my glove compartment is a challenge. That morning I just used the sense of touch and felt for what I thought 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!”

Minutes later he was walking back to my car, with my warning in hand. But wait!
Did I see him chuckling 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.

“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.”

As I grabbed the paperwork back and signed the ticket, the Sheriff added:

“By the way sir, you may want to get that proof of insurance card in order, “ he said still grinning.  “The next officer who stops you may not want what you’re offering.”  

Looking down at the document in my hand revealed why the Sheriff was chuckling.

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: 

“Save $5 When You Buy Four Fleet Enemas!”  

With the Deputy still grinning and stopping traffic for me, like Mr. Magoo I slowly merged into traffic going about 1 mph, still incredulous that I given the officer a coupon for an enema. 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:

“Have a super regular day, sir!”

I got the joke, and chuckled out loud.

Then a thought hit me.  I didn’t yell it back, but it was valid as I said it in my head nonetheless:

 “No one with this disease EVER has a regular day, sir!”


Note to Readers and Dear Friends: 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.