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 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.

Tuesday, August 31, 2010

Exercising Discipline

I absolutely hated gym class in Junior High. I was a skinny kid growing faster than my Mom could sew, 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 I could not even do one pull-up, 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. 

What made it such a trauma for me was that you had to do these supposed "feats of strength" in front of both the gym teacher, and your classmates. And here was the rub: You had, as the teacher would always announce in that bellowing voice, "a full 60 seconds to do as many pull-ups as you possibly can!" 

Well, when you can't do even one pull-up, having sixty full seconds isn't an advantage, it is just out and out child abuse. I mean, how long does it take me to do zero pull-ups? I'll tell you straight out- about zero seconds. 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 "come on, you can at least do one!" Mercifully, I finally heard him click that stopwatch, and say robotically, "Exercise complete." 

It's funny how the very same words can be either cruel or motivating, depending on the delivery. 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.  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, "Come on, you can do it! Do just one! 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. 

From that day on, sports, fitness and exercise were part of me for a full 15 years, until I got sick.  But M.E. as you know, of course changed everything.

For the past many years, 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 I still could not have done one pull-up. 

But that's all changed now. 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 body, but my soul and spirit as well. 

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. Psychologists and theologians alike teach us that our soul, which is comprised of our intellect, our will and our emotions, can affect our bodies, and vice versa. 

So here's how I've been exercising all three:

My BodyDr. Irma Rey, Assistant Professor of Medicine and Sport Team Physician at the University of Miami, now working with Dr. Nancy Klimas says we should take a "low and slow" approach to exercise. 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.

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 2 short workouts a day, to restore energy.

This is what Dr. Darrel Ho Yen recommends in his brilliant concept of our thinking of energy as money. 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- do something. 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.

My Soul- Exercising my mind, my will and emotions 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.

My neurotherapist Kim Phillips told me for the sake of my sleep time, I should not do these things at night, 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 online debate, don't participate. 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. 

My Spirit - 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. 

The problem with that in the past has been, this is a classic Baptist church in the Bible belt, 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. Dr. Graham Welch, 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 my faith in God, and the future, 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. 

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." 

"Do what?" she said, as she continued putting on her Sunday dress.
"Stand there all that time and sing all those songs," I replied, remembering the choir. 

With echoes of past teachers and fraternity brothers bouncing around my brain, she said the only thing that I needed. 

"Then just sing one. At least you can do that." 

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.

Exercise complete. 


Friday, August 6, 2010

Embracing Reality

I admit it.
I really blew it, big 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.

I've had this problem of moving into unrealistic expectations all my life, even before I got sick.

I remember in the 5th grade, setting up my little home-built "Estes" rocket 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!

"How cool!" I thought.

Of course it didn't turn out to be quite that cool.

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. I asked my Grandmother Flo 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 fire, I recruited her to my pyrotechnic team. 

"Do you have any experience with rocketry, grandma?" I asked semi-seriously. 

"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.

"Just take your lighter and touch that fuse there,  grand..."
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.

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.

Unfortunately, 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.

By the time I arrived 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.

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.

"You did it!" she shouted,  while lighting up her 31st cigarette of the day. "That was great!"

"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 the whole thing over in 10 seconds!"

"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 reality is always better than fantasy," she said.

"Why is that?" I asked her, sincerely, no longer focused on her stained teeth, but genuinely interested in this Waltonesque wisdom. 

"Because, up until a few minutes ago," she said through smoke plumes, "you were just one of thousands of boys who only dreamed about shooting their very own rocket. But now, I bet you are the only boy in your school who can say they actually did shoot their very own rocket! And 25 years from now, you'll still remember this story, and the fact that it only lasted 10 seconds won't matter a whit."

Grandma Flo was right about everything. I was the only boy who could tell that story, and I milked it every chance I 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.

I guess I still haven't learned how to control my great expectations though.

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.

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 a dream world of my own making.

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.

I had fantasized myself right into a huge flare, and it was my own fault.

I had forgotten that the "healing curve" on Ampligen, 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. 

As our systems adapt to the healing process and homeostatis, 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. 

But I forgot all of that 2 weeks ago, by not embracing the reality, and letting my dreams get ahead of wisdom.

Doctors and researchers report that most patients who battle Myalgic Encephalomyelitis are former A-type personalities, 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.

Kim Phillips says that in 20 years working with CFS patients in neurophysiology therapy she has never met one who wasn't brilliant. 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.

I confess, I didn't feel brilliant 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.

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."

"So dance with me now," she said, holding out her arms.

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.

But it was reality. And it was mine.

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. And the fact that it lasted only 10 seconds won't matter a whit.

Sunday, July 11, 2010

Tests Confirm It - Ampligen Works!

I have waited 6 full months to be able to say this, and the day has finally arrived. So here it is: I know without a shadow of a doubt that Ampligen works. As I finish my 24th week of Ampligen, I can say with confidence that this amazing drug has performed "as advertised," and then some.

I know this 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, secret test. Let me explain.

Over 6 months ago I arrived 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.

Because of the flight, 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 baby grand piano 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, I would have cried, seeing the look in my wife's eyes.

You see, until recently, no matter how sick I felt, my wife knew that I could always play the piano, and it would cheer me up. 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.

All of us who fight this disease 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 survival occupies all of our energies, with the disease slowly but surely stripping away all the rest.

After a while, 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.   We don't play the piano anymore, 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 evidenced by lesions.

That's what happened to me. 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. "If Ampligen works like they say it does, someday I'll be able to play this song again, without mistakes. THEN I'll know everything is going to be all right.

Because of the documentary film "The Buena Vista Social Club" I knew that music in the brain had a special "place" and that music memory, and finger memory could survive periods of inactivity. 

In that awesome award-winning film by Wim Wenders, guitarist Ry Cooder tracks down an aging pianist in Havana named Ruben Gonzales, 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 "Ruben played like that for hours, non-stop, as if nothing had changed."

It's been obvious to me 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. 

Yesterday at the clinic 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 Ampligen was working. 

But I had one more secret test she didn't know about that was still pending.

Back at my apartment, 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 musically transport me to Havana, and my soul warmed. 

As I watched my own hands find chords and keys that just a few months before were evasive and confusing, I knew. My health was returning. The Ampligen was working. 

Everything was going to be all right.

Wednesday, June 30, 2010

Read the Fine Print

With my nose completely shut 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.

Exactly twenty minutes later, 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: "Warning: May cause drowsiness.

"Whaaat?" I said to myself, "this is supposed to be 'Daytime Safe'!  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 "Guaranteed to Put You To Sleep Medicine" with a smaller mention of "May also help control your allergies."  

Regardless of the intent, the combination of the misleading package headline and the small print on the instructions ended up costing me a half day of cogent thinking, as I sleep-walked through the remainder of the day. 

It could have been worse. 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 say all the ugly stuff on TV.

For example, there's a new weight-loss drug by Glaxo Smith Kline promoted on TV  called "Alli." 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 frolicking in a field, wearing all white.

But on TV, they are mandated to say all the fine print that you wouldn't normally read, and it's pretty hilarious, if not frightening. 

"Side effects to Alli include gas with oily spotting, loose stools, more frequent stools, and stools that are hard to control." 

I don't know about you, but no matter how much weight I lose, I've always found it difficult to look svelte when the gas I pass leaves an oily spot.  And I'm thinking the last thing I'm wearing when I take Alli is white pants.

I'm serious. This is not hyperbole. Here are a couple more:

Requip - a dopamine drug to counteract tremors: "side effects include an unusual urge to gamble and increased sexual urges and behaviours." 

So it's either the shakes, or I turn into Hunter S. Thompson? That doesn't sound like a good deal to me.

Accutane - an acne medication: "side effects include crying spells, rectal bleeding, and bone fractures." 

Now I may not remember 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?

Reading the fine print 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.

We also sometimes react to other people, or other circumstances, differently, or more strongly as well. That's because our Central Nervous System is under attack, and our "senses" are often attenuated.

Yesterday 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 Richard Simmon's voice, urging me to "Come on!" a dozen times per minute. 

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." 

I couldn't believe it. 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, "no, not really. It's not that loud."

Not that loud? To me it felt like Richard Simmons himself had taken up residency in my gym shorts, and had placed a megaphone an inch from my face screaming.  At that moment I saw myself in the wall to wall mirror, with my eyes dilating, my brow furrowing, and the anger starting to rise.

These were the "side effects" of the disease 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. 

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 pupil dilation.

My wife 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." 

That last one usually does the trick, because I can actually picture the scene. It always starts with me frolicking in a field, wearing all white.

Saturday, June 12, 2010

How Not to Become Invisible

It was worse than just being ignored. 
The problem was this arrogant nurse was trying to make me feel invisible - As if I didn't exist - And that I just couldn't permit. 

It happened at the clinic. 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 above 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. That's when she got my dander up. 

As I was seated 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. 

"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 fill the space with my voice. My intention was to both rebuke the RN's rude behaviour, as well as illustrate the fact of my existence in the room to her. It was as if I was repeating Oliver North's lawyer, Brendan Sullivan's famous line, "Hey, what am I, a potted plant?"

Shocked and corrected, 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.

For those of us who have physical challenges and sometimes obvious disabilities, it's easy for some people to devalue us...
  • to misinterpret our lack of stamina as a lack of stature; 
  • to view our weakness in posture as a weakness in character; 
  • 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.

In the original "Invisible Man" 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 when a voice comes out of "nowhere." 

Have you encountered people in your circle who patronize you? I call that an attempt to make me invisible, 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 clearly visible to them - sometimes even including a very loud "voice out of nowhere." 

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: 

I Change the Tone and Timber of My Voice - 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. 

I Change the Style and Substance of My Clothes. 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.

I Change Mode and Method of My Communications. 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 wrapping of my words, I get better reception for my words.

I Change the Scent and Strength of My Cologne. 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.

I Change the Substance and Source of My Credentials.  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.

After my infusion that day, 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." 

Gwen replied, "After 4 weeks of not talking, I was in complete agreement with you. I was glad you said what you did." 

"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." 

Gwen gave me one of her super-warm smiles, and I left the office happy. 

As the elevator door opened, 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!" 

"Thanks," I replied, "Nice of you to notice." 

"Hard not to!" she said, sincerely, with a smile.

"Mission accomplished" I said to myself, and Claude Rains, if he was listening.

Monday, May 31, 2010

The Ampligen Supremacy

My favorite line in the "Bourne" trilogy is given by The Professor. 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, "Look at us. Look at what they make us give."

In that moment 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.

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...
  • the remedy was worse than the disease;
  • the medicine was worse than the infirmity.
I remember clearly when it dawned on me that the "remedies" I was using to fight M.E., were worse than the supposed "benefits" I was getting.

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.

It was a typical morning. 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 whey protein drink in that special little blender. For years I had read that this whey protein contained the glutathione that my body lacked, and since "they" recommended it so strongly, I dutifully and habitually drank the mixture twice a day.

I hated that drink, 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.

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.

"Cheney Advises Against Whey Protein and Glutathione" rang the headline, louder than a shotgun blast in my ears.

"Whaaaat?" 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 whey protein is bad for me?"

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.

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.

"Guess what?" I said sarcastically to my wife, "We've been spending thousands of dollars each year apparently poisoning me with whey protein."

"Why?" she asked me sincerely.

"Because," I answered, "they told us to."

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.

Taking the mixture from her cute little hands, I actually repeated the words out loud:  "Look at what they make us give," I said.

Today 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 get serious about my recovery, and  put everything I had into it, for survival. Though not as dramatic as a Bourne thriller, it was every bit as serious.

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.

Which is the reason that today, 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.

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 most research and the most potential success turns out to be the much maligned, often controversial, immune modulator called Ampligen. I found that there were over 20 years of Journal published 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.

I do not have a financial interest in Ampligen 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:

There are literally hundreds of other references and published studies that cover the last 20+ years of Ampligen research, that to me added up to the best option for my time, money and hope. To see these just use and search Google Scholar 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?

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. Is the remedy worth it?

"Look what they make us give." 4 years and $50,000 minimum? To maybe get better?

No. Not for me. I'm putting my money on Ampligen. 1 year and less than $25,000.

With the added bonus of no ridiculous powder in a battery operated mixer.