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.











Tuesday, January 18, 2011

Learning to Fly Again


I did it! The year on Ampligen is over, and I'm about to burst at the seams. Would you join me now in celebrating my victory? 

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 backflips for joy. I mean, these players were so happy, they were getting airborne 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 go here. )  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, "Look! Those guys are not invincible. It was a war, but they CAN be beaten!"

And make no mistake, the Ampligen protocol is very much a war. 
  • It's a war against a supposed "invincible enemy" that invaded my body;
  • It's a war against the "belief" that I am destined to be sick forever;
  • It's a war against doubt and fear, as the treatment itself can be worse than cure for many months.
As those of you who have been following my blog and adventure the past year know, for the entirety of 2010 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. 

By suffering from M.E. you understand what a "trial" is. 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 sciatic nerve tremors, diarrhea, constipation, temporary vision loss, muscle aches, depression, loss of libido, loss of energy (what little I had), and a lot more.

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 my eyes dilate. If you really want the good bad and ugly details start with my first infusion report here on The New Ampligen Diaries and read through the year's "trials." 

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 yes, it was worth it! Ampligen delivered as advertised! 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 70% better! We have a saying at the clinic- "Ampligen doesn't cure you or fix everything, but it gets you close." To see the before and after report card scroll down to the bottom of this earlier post

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...
  • do my job about 6 hours a day (from my laptop, on the phone and Webex with my staff around the country), 
  • go to the gym and do a 45 minutes a day in resistance exercise, 
  • go to church every Sunday, and stand a long time,
  • even be funny occasionally. 
I no longer have canker sores in my mouth, no more swollen glands, no more brain fog, and I even went to an NBA game last Thursday night and stayed for 2 quarters! My orthostatic intolerance has almost disappeared completely.

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! 

All in all, the reward I am experiencing now was worth the risk.

In that regard, by writing this post, I know I am risking hurting some of my fellow sufferers feelings, 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.

Please understand my motivation here. 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!

That it turned out so well 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, to give you some hope.
  • Hope that these hideous bugs and pompous pain provokers can be stopped;
  • Hope that maybe very soon, there will be drugs affordable and more readily available* to all that really work;
  • Hope that these viruses, this enemy of ours, is not invincible.
Like the NY Jets, I'm saying, "Look, these viruses might have punched you in the mouth like me for years...but look! They can be beaten!" 

Now I embark on a new journey. 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 aerobatic planes, was a flight instructor, won some awards soaring in gliders, and loved to ski and parasail. 

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, you don't need the energy of a teenager or the strength of NY Jet to get airborne. You just have to know how to use gravity to your advantage. 

So I'll be spending the next year or so learning how to fly again, 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. 
 
As both a victory celebration, 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 Learning to Fly Again It motivates me every time I see it and hear the Foo Fighters music. I hope it does you too. 

video




Kelvin Lord
Enroute to the Rockies


*I'll have some exciting news about this in my next post.













Wednesday, October 27, 2010

Breaking Out!

There was a prison breakout 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. 

This is the story of me, doing something absolutely insane this past weekend. Something that was seminal to my progress, critical to my healing process,  and something I felt I just had to do. After 10 long months being "stuck" in this place, last Thursday, I made a run for it. I escaped!

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! By myself! 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 the Ampligen is working better than advertised, and that my health is actually being restored.  But it also meant something else of equal importance. Let me explain.

To say I have felt like a horse cooped up in a corral 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 I needed this level of assistance 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 live on the couch, 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. 

As I've written about previously, after 6 months, something changed. 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, I started to experience a taste of "normal" life - a free life -  for the first time in a very long time! But that small taste of freedom presented me with a problem.

You see, although I was actually starting to take baby steps toward living a healed 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 scared.
  • Scared that the healing would be short-lived;
  • Scared that if I did just one more thing, I would crash; 
  • Scared that after all this time, I wouldn't remember how to live!
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.

It came to a head last week when a social activity was presented to me and I turned it down immediately...out of habit! 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, "no, I better not." 

Ten seconds later it hit me. "What was I thinking????"  I had gotten so good at living "within" my limitations, I couldn't break out of my limitations. I was an expert at living like a sick person! And it infuriated me. 

Here I was at Week 40 on the Ampligen protocol, 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, I was trapped by the habits learned over years of sickness. 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.

Years ago, long before I got sick, I was trapped in quicksand once. 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.

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.

Then Ed said something I thought at the time was the most ridiculous thing I could have heard at that moment.

"We have to get her mind off the sinking, and on to the running." 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."

Because Ed was my only hope, I decided against vocalizing either my doubts about his idea, or asking him why he said "that there" when as a Scottsdale native his English was normally otherwise perfect. Instead I just asked "How do we do that?"

"Well, on the count of tree" 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!"

Ignoring the fact that I wasn't wearing spurs, 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.

Amazingly, Gypsy did exactly as Ed had predicted. 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!

Leaving the clinic 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. 

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. 

Until this past weekend, I was sort of stuck in a quicksand of my own making. And I needed something to get "my mind off the sinking, and on to the running." Because just like Gypsy, before I got sick, I too was a runner at heart.

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 Ampligen is really working! 

Now for these final 3 months of treatment, I know what my job is. As long as I can keep my brain out of that there quicksand, my body will follow.

*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 Karnofsky Score, 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. 

Friday, October 1, 2010

Interview with Dr. Lapp - A Pioneer and Patriarch


To give you an idea how long Chuck Lapp 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. 

Kelvin: 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. 

Dr. Lapp: 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. 

Kelvin: 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. 

Dr. Lapp: 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 did help included: 
  • B12- helped
  • Dietary changes- helped
  • CoQ10 and Krebs Cycle intermediates such as malate and magnesium-helped
  • Aquatherapy-usually helped a lot!
  • Of course beginning with the trials in 1991, Ampligen showed great promise
Some of the things that did not work out well included:
  • Oral Interferon- some patients got worse
  • Ambotrose/Mannatech- no help
  • Heparin for presumed excess histamine and coag problems - no help
  • Ocytocin- minimal help
  • Treating oxidation radicals- no help
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: 
  • "AIDS Minor" or idiopathic C4 Lymphophenia
  • Sedimentation rate as a marker for CFS
  • Urine pH as a marker for CFS
  • Stealth (foamy) virus
Kelvin: With almost 20 years experience treating patients with Ampligen, in general what results have you seen? 

Dr. Lapp: 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 "Ampligen may be the first drug to demonstrate safety and effectiveness in the treatment of CFS." 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 CFIDS Association website.

Kelvin: What makes Ampligen different than all the other treatments you've used over the years? 
Dr. Lapp: 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 treatment of CFS, not just treatment of CFS symptoms.

Kelvin: You don't accept all patients who want Ampligen. What makes for a good Ampligen candidate? 
Dr. Lapp: 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 Trial NCT00125813

Kelvin: 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? 
Dr. Lapp: 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.

Kelvin: 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? 
Dr. Lapp: 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.

Kelvin: 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? 
 
Dr. Lapp: 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 our Facebook site 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 Hunter Hopkins Center apart from others. 

Kelvin: Thank you Dr. Lapp.