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. 

Tuesday, May 18, 2010

I Swear, It's Nothing Personal!

"My mild-mannered, sweet,  school-teacher wife just lit into me with some language that would make a sailor blush!" R.S. said, shaking his head in dismay. He was referring to his wife Leona, a fellow patient here at the clinic getting Ampligen, and he was beside himself, still stinging from the string of expletives she had just dispatched his way.

I had met R.S. briefly a few weeks prior, when he and Leona had first arrived at the clinic to start her on the Ampligen protocol. She was a petite, lovely woman, and obviously sick, but she still made an effort to be cordial. Looking up at the giant of a man with a straw hat and an unlit cigar hanging from his mouth, Leona smiled at him and introduced me.  "This is my husband, Robert" she said, "but most people just call him R.S.  That's short for "rock solid" because that's what he is in my life."  I could tell how much she loved him, and it was clear that he idolized her.

I remember thinking to myself, "I wonder if he's ready for what's coming."

"Listen, R.S." I said, "if you have any questions about this protocol, or the side effects, feel free to call me. My wife could give you some tips as well," I said, handing him my card and phone number. "Because there are side-effects!"

It was about three weeks later, to the day, that R.S. took me up on my offer, and connected with me by phone. "Man, I need some help or advice or something." R.S. said. "This woman is pushing me to the edge of my rope. I don't know if I can take it much more!"

"What's going on, R.S.?" I inquired.

"I've been married to Leona for over 2 decades" he said, "and she's never said more than three cross words to me in her life. But ever since she started this Ampligen treatment, she's been cursing me like a drunken sailor. I mean, she's hit me with some profanities that you wouldn't hear even on a construction site. And I've worked in construction, so I know. I mean, it's like she's a different person! Would you believe last night, after very gently and quietly going out to the patio, Leona actually screamed at me to "stop slamming that "f----ing" door!?"

"Yes, I can believe it, R.S." I said, "for two reasons. First, in order to start Ampligen, Leona had to go "off" all her other drugs - medicines and antivirals that were getting her through. Second, the Ampligen she's receiving now is finding and attacking the disease, and it is stirring things up everywhere in Leona's body, including her brain, and that includes her nervous system, and the parts of her brain that controls and filters speech."

"You mean I've traveled over 1000 miles," R.S. continued, " to come to a clinic to get my wife better, and the immediate result of  this "miracle drug"  is that I get to hear what a 'son of a bitch' I am by my so-called sweet, loving wife every night?" 

"Well," I replied cautiously, "at least for a little while, R.S. But don't take it personally!"

I went on. "In reality, what's happening to your wife happens to most of us who start this immunomodulating drug called Ampligen, or to anyone who has had this virus in their systems for a while and starts treating it. The same thing happened to me - and until my wife understood the pathology, she was as perplexed by my swearing as you are about Leona's. In fact, I continued, "my wife could tell you about the night I screamed at her to "kindly stop banging the door!" 

What I then shared with R.S. helped him to understand the situation a lot better, so he could understand what Leona was going through a lot more. Thankfully, some other patients and doctors had shared this with me, and I ended up writing it as a "letter" to loved ones so that they too could understand that we are not just "cursing up a blue streak" because we lack self-control. Here's what I wrote:

Dear loved one,

Perhaps you have heard things come out of my mouth that sound harsh to you. Perhaps my attitude has sounded impatient, or my requests have sounded demanding. You may have even been one those close to me who has  heard me use profanity or off-color words that normally even I would blush at. 

Please understand, I have not gone over to the "dark side." I am battling a neurological disease which has infected or invaded my cerebral spinal fluid. This not only causes me great discomfort, it also causes great changes in my mental circuitry. Myalgic Encephalomyelitis by definition in part means "pain and swelling in the brain lining," and the viruses that it has stirred up mess with parts of my brain in a significant way, not the least of which is my speech center.

Yes, I have a problem with my mouth right now...but it's because I have a problem in my brain. According to the Canadian Case Definition Guide of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome,  MRI studies confirm that we patients use more areas of the brain to process auditory activities, which means small noises often seem extremely loud to us, and small irritants can feel extremely, well, irritating. What's more, in that process we often can suffer cognitive fatigue, which then affects our verbal processing.  

Speech comes from the left brain normally, but when fatigued or worn out, our brains can switch to the right hemisphere, triggering our Amygdala, which is the key to emotions. This then causes our heart to speed up, our eyes to dilate, and other survival mechanisms to kick in. When our hearts accelerate, our sympathetic nervous system kicks in, releasing adrenaline or epinephrine into our bloodstreams.  In short, sometimes our bodies put us in "fight flight" mode, ready for war, prepared to act like a warrior. 

And because we lack the cognitive energy to speak at those times from our left-brain, we shift to right brain verbal communication, which of course, sounds a lot more like a soldier or a football player, than a school teacher.

You may have heard of this happening to women in labor, where out of the blue they will curse during the most painful, exhaustive moments of giving birth. No husband in those moments takes those words seriously, or personally - so I would ask that in a similar fashion, you not take mine seriously, or personally either. 

I am, in a very real sense, in labor here. I am in labor everyday to try beat back the sickness, to beat the viruses and diseases that have invaded my body, without losing my sanity or my hope. If on occasion, the cascading of pain symptoms or the natural defense mechanisms of my brain and central nervous system push me into a warrior mode, and you see my eyes dilate, or hear invectives come from my mouth that seem over the top, please understand, I am really not that upset with you. Inside my head though, it is very painful, and very noisy. 

So please, don't take this personally. 
And on your way out, please, just be sure you "don't slam that @#$#%&& door!"

With love and appreciation, 


Sunday, May 9, 2010

Grading Ampligen - A Mid Term Report Card

I never liked report cards as a student, but since today marks the completion of 14 weeks on Ampligen, signifying that I've just passed the quarter-mile mark, I thought I'd give you an update on my progress, by way of some mid-term grades.  After having 28 infusions of this amazing "experimental" drug, here are the things that have and have not improved to date. Grades are based on the typical American system, with A being best, and D's and F's being worst.

Things that have improved on Ampligen: 

AppetiteA+ This was the very first thing I noticed that Ampligen affected, from the very first day on the very first drip. My appetite returned while sitting in the clinic with the first Ampligen infusion in my arm, and I remember commenting to Nurse Gwen about it. When I arrive here I weighed barely 170 pounds - not enough for my 6'1" frame - and today I am sporting a pot belly at 199 pounds. That's almost 30 pounds gained in 3 months, and my new challenge is figuring out how to stop gaining! But I feel better with this weight back on, and most tell me I look better too.

Sleep A+ - The second most noticeable benefit of Ampligen was both the length and quality of my sleep. I remember the first night after my first "drip" having vivid dreams. I began writing them down, so intense and profound they seemed to me, but after a few weeks I just sat back in my sleep, and enjoyed the show. Today I always sleep at least 8 hours per night, and always have multiple dream sets. 

Brainwaves B+ - Early in my treatment I went to a pretty well known Doctor who specialized in Quantitative EEG and neurofeedback therapy, who has had a lot of M.E. patients, and got a scan of my brainwaves. After seeing the color images of my brain activity on her screen, I asked her "what does that show you?" She said, "If you took this image to any hospital emergency room, and showed it to any random resident working that day, they would say to you "So was this patient in a car accident, or hit with a bat? Because there is serious brain trauma here."  Since then, every day after my Ampligen treatment I've gone immediately to this Doctor's office, and had neurofeedback. Since then my Theta waves, which were off the chart, and looked much like someone with ADD or ADHD, have come down within "normal" range. I attribute that both to the Ampligen, and the neurofeedback therapy. Experientially, my short-term memory has improved, and my business associates have told me that I'm "much sharper" in my decision making and management. Even though I still don't go into the office, and do my job on the phone and the Internet, they've noticed a difference. 

Headaches B+ - In short, my headaches have almost completely disappeared since starting on Ampligen. My ears still ring occasionally, but the pain has not reared its ugly head in a long time.

Digestion B+ - If you read some of my earlier posts, you know that I went from diarrhea, to constipation early in my Ampligen treatment. The pendulum has swung back to the middle, and suffice to say everything is now normal and regular. I still watch what I eat, avoid gluten, sugar, and the usual suspects, but apart from those restrictions, the machinery functions pretty much everyday like clockwork.

Things still waiting to be improved on Ampligen:

Low Energy - D-  When I arrived here I could hardly walk from the airport gate to the baggage carousel at the airport. Although I might be a little better than that, today I am still limited by low energy levels. More than 7 minutes walking and I'll be pooped, and pay for it the next day. In our animated church we stand a lot, and sometimes I just can't do it for more than 5 minutes. Staying "horizontal" is still necessary for me, most of the day.

Limited Exercise D+ - I have not been able to increase my exercise level at all since being on Ampligen. I have hope that this will change soon, because other patients tell me after month 6 the energy level starts to pop. But as of today, apart from like 10 minutes of stretches each day, I'm unable to do much.

Concentration Difficulty D - Although I have seen slight improvement in this area, I have to confess that mental concentration is still a problem. To write this blog for example takes me multiple sittings, and big-time discipline, because my mind wants to bail about every 5 minutes. This is getting better, but there is still a long way to go.

Muscle Pain D - Although the flu-like side effects of Ampligen have, after 3 months, now completely dissipated, I still awaken every morning with stiff, sore leg and back muscles.  I still am fighting pain and soreness all the time, all day long. Sometimes the locations change, but every day something muscular is hurting.

It is these four problem areas that combine to still make it difficult for me to work for any long periods, or take my wife out to dinner, or just dance with her in the living room. Don't get me wrong, I'm thankful for the improvements I've noted in the section of "good grades" above. But until Ampligen can fix these "low grade" areas, I won't be satisfied.

Oh yes, one more thing, that my wife has noticed. My mouth has gotten a lot better. Of all the tests and measurments as to how I feel and how I'm doing on Ampligen,  this one might be the best diagnostic of all. I give myself a B on this.

I very rarely use the "f" word as an adjective any more! Thank God!

Saturday, May 1, 2010

How to Answer "What's Wrong With You?"

We've all heard the question in one form or another.

It usually comes at a time when you look better than usual, or feel worse than usual. But either way, it makes you feel the same as usual.

"What exactly is wrong with you?" they ask, innocently...not knowing that their "casual" remark has ignited every synapse in your brain and tensed every muscle in your body into an emergency-level  "fight/flight" response.

How should I answer that? Because the disease we battle has not received the "press" or publicity of other better known infirmities, and is not as intuitively obvious as having one leg missing, the answer we give is not all that easy to come up with, and often provokes some strange responses.

The most notable example of this happened to me on a flight from Miami, USA, after arriving from South America. Through mileage I was blessed to be upgraded to Business Class,  but even before I could enjoy the comforts of warm roasted nuts and the hot towel, I was uncomfortable.  A large man in a Panama hat seated directly behind me began coughing and wheezing so violently I actually felt spray from his mouth hit my arm. I turned around to see if it was serious, just in time to get hit with another atomized burst of germs right in my face. He didn't even attempt to cover his cough, and seemed perfectly content baptizing all six of us in this tiny cabin with his infection.

Knowing how sensitive my immune system was to these kinds of airborne bacteria, and not wanting to get yet another cold or virus, especially one I was convinced came from Panama, I rang the attendant button. When the "flight attendant" came by, I said in a whisper, "Could you please ask the gentleman behind me to move to another seat? There are a bunch open in the back."

To my surprise, she said nothing, made a dismissing face, shook her head, and started to move on to deliver more hot towels to the other Business Class passengers. But because I was a pilot, and knew commercial aviation rules and regs, I had more to say. Unfortunately, at that moment, the short-term memory, brain-fog thing that hits us at the most inopportune times came over me, and I forgot what to call her in English. Coming up with the closest alternative, I now almost shouted down the aisle, "Waitress!"

I discovered immediately that, at least in the USA, "flight attendants" do not like to be called "waitresses." Spinning around like I had just cursed her, she said loud enough for everyone on the plane to hear, "What did you just call me, sir?"

As I started to explain that I meant no offense, that it was just a mix up in terminology, she interrupted me with the question.  The question that we are not loathe to answer, but the question that usually takes more than a few seconds to explain. And there it was. 

"What exactly is wrong with you?" she spat, halfway using it as a club to beat me senseless, but also seriously waiting for an answer,

With her hovering over me like a school-marm, I muttered something about having a complex disease, included some key facts about my immune system, mentioned the word "virus" I think, and then heard myself end with "but it's not contagious!"

Whatever I said, it evoked exactly the opposite reaction that I had hoped, and for the rest of the flight, I was actually "shrouded" by her and her staff.

Shrouding is a term that was made famous in the movie "The Paper Chase" starring Timothy Bottoms and John Houseman, referring to law school students who were so inept in the professor's mind, that the professor ignored the student for the entire semester, basically acting like the student didn't even exist. Playing a shrouded student, Timothy Bottoms actually sat in class with a bag over his head. 

I guess because of my weird answer, and the use of the term "waitress", for the next 2 hours, I was shrouded on that flight.  No "flight attendant" looked at me. I was not offered a beverage. I received no warm nuts. And Mr. Panama hat coughed and sprayed all the way from Miami to our destination.

I learned through that ordeal that I had better come up with a cohesive, cogent, informative answer to the question, so that the next time someone asks me "What is wrong with you?" I would be prepared.

Over time, I've cataloged a number of concise ways to answer the question, depending on the questioner, my mood, and the need at the moment, and offer a few for you here.

The Scientific Answer:  
I have a disease known in most parts of the world as myalgic encephalomyelitis. That's a lot of syllables but it describes this infirmity well:
Myalgic- by definition means muscle pains;
Encephalo- in latin means in the head, or brain; 
Myel - refers to the myelin and means spinal cord; 
Itis - means inflammation or imflamed.
So when you put it all together it means I have a disease that resides in my brain and spinal fluid, inflaming them, and giving me great pain. It also means that it's quite amazing that I could tell you this definition without lying down!

The Allegorical Answer:
Have you ever had a bad case of the flu? Did you ever drink one too many Margaritas? Do you like the TV Game Show "Jeopardy?" Well, imagine that you have a disease that makes you feel like you have the worst flu-bug of your life, with all the concomitant chills, fevers, and aches, with a tequila hangover on top of it, and Montezuma's revenge thrown in. Now imagine that when you try to get up to go to the bathroom, some college pranksters covered your bed in thick molasses, and you can't move your arms or legs. To make this torture even worse, while you are "stuck" there, immobile, your brain is giving you answers to questions no one has asked. Well, I have a disease that is like that for me all the time. And oh by the way, "What does Myalgic Encephalomyelitis feel like, for 500, Alex?"

The Symptomatic Answer:
I have a disease that makes me extremely tired all the time, but prevents me from getting more than 2-3 hours of sleep at night. It is a disease that makes me sweat in the winter, and have chills in the summer; one that often has my head red-hot and feverish, while my feet are stark white and ice-cold. It is an infirmity that makes my immune system and brain run on overdrive, but often renders me unable to find the right words, or remember your name. In fact, I often forget what I was saying in mid-sentence, and why I was saying it. Now what was that question that you just asked me again?

I have other formulated answers that I often use, but you get the idea. The point is to have at least one...well-rehearsed, on the tip of your tongue...because you never know from who or where the question will next come.

And if brain-fog hits, or the short-term memory problem kicks in, or you are just frankly tired of answering the question, there's always the last resort. You just put a grocery bag over your head, and act like you're not even there.