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. 

Kelvin Lord

Enroute to the Rockies

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

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.

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 f....ing 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, 

Kelvin

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: 

Appetite -  A+ 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!

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.

Mopping up After the Roller Coaster Ride

I overdid it this past weekend, and paid for it on Sunday. Nothing about this disease is predictable, except the unpredictability of it I guess, but I was feeling so good after Treatment #18 I actually got suckered into thinking I was "normal" last week. Big mistake. Talk about a roller coaster ride!

When I was young I lived in Southern California and loved going to the theme parks in and around Los Angeles. My favorites were the roller coasters and one day, a new bigger, badder, more bodacious one opened up at Magic Mountain that I just had to try. It had some fantastic official name but the workers there just called it simply "the puker." Of course that made me want to ride it all the more, until while in line to get on, I noticed two workers standing at the ready with mops and buckets. I kid you not - this roller coaster was so hair-raising that they had two permanent workers who mopped up vomit as the coaster returned to base! That was their job, every 2 minutes as the cars came back, to clean up the mess.

I wouldn't have believed it had I not seen it with my own eyes... but sure enough, as the lead car came to its screeching halt after 75 seconds of full throttle g-forces, the teenage girl sitting in the front let her lunch fly and these two guys were cleaning it up faster than you could say "exit to your right." 

As I loaded the same car the puker had just left, with the smell still in the air, I asked one of the guys with the mops "What makes people throw up like that, the altitude, or the speed?" 

He answered matter of factly: "Neither. It's usually the abrupt stop. You go from 60 mph to zero and your lunch is still catching up with you. It's not that bad, really" he went on, "we just mop up the mess after people enjoy the ride." 

I should have remembered the mop guy's words this weekend. Other patients who have been on Ampligen have warned me about this - that sometimes you can get such a short-term "boost" from this amazing drug that you'll start to think you are "healed" too early, and start going to fast too quickly.  They've all told me that the real progress happens after the fourth month, but here I was this past week barely marking two months treatment, and I felt so good that I started filling my calendar up for the weekend. Can you imagine? Stupid, I know. But I had been hoping for this kind of energy for so long, I let my enthusiasm overtake my wisdom. 

Coming off my Ampligen drip last Thursday, I felt really energized, so I recklessly attacked life with gusto. Between Thursday night and Friday noon I had long phone conversations with no less than 8 friends and relatives on 3 continents, in 2 languages. I did extra time in the gym, followed by an hour's deep tissue massage. My brain was working so well I spent a couple hours rehearsing a Supertramp chord progression in my head in bed instead of sleeping. Next morning I went shopping at a local mall, listened to a Czech opera conductor play Gershwin on the baby grand in Nordstrom's and then came home and worked on my taxes! Can you believe it?  Still on this "high," on Sunday I took a friend with me to church, (a baptist-style congregation where the music is so good it is impossible to sit for very long) and then got a haircut. I was intending to write this blog after that, but then incredibly, the ride came to a sad, abrupt halt.

Like the speed brakes on a roller coaster at Magic Mountain, I hit the wall. I decelerated from 100mph to zero in the blink of an eye. My stomach ached. I dropped the hairbrush, and dropped my pants.

In less than 2 minutes, I went from admiring my new haircut in the mirror, to sitting on the toilet with abdominal cramps. Not only did my glute and leg muscles hurt, but my bones hurt too. My head was throbbing, my neck ached, and in all seriousness, it even felt like my teeth hurt. The ringing in my ears and the overall malaise confirmed it - I was crashing big time. It was shocking how quickly things turned south. From soaring at light-speed with my hands in the air, to squatting over the commode with my hands holding my head, in just a few minutes time.

At first I tried to go through the usual denial mechanisms we all use, like telling myself all I needed was some dinner. But when I couldn't get up the energy to find my glasses to read the dials on that fricking chinese GE oven with the tiny little numbers on those infernal tiny little dials, I realized I was toast; so I just plopped down on the sofa. For a moment, in complete denial, I thought of getting up and trying to distract myself by writing this blog. Ridiculous. Had I done so it would have looked like this: "*@$&^%##@^$*&$@_)_**^)(&@*!!!!!!!"

Then the downward spiral of interconnected reactions set in, and I had a real, bona fide crash.

You know what I mean, right? After the physical symptoms rear their ugly heads, the other ancillary parts of our "being" feel the need to participate.  So next, my emotions got involved, in the form of anger about the fact that I was on the couch again.  Then the concomitant sadness that usually follows anger kicked in, which  made me feel even sicker. Followed by its ugly twin, "guilt," beating me up mentally with the refrain "How could I have been so stupid?" 

If that wasn't enough, a thunderstorm rolled in, dropping the barometric pressure like a stone, and with it, my quickly souring disposition. Yes, barometric pressure changes do affect people with viral challenges like myalgic encephalomyelitis, usually in a bad way. So with no "joy endorphins" firing, and whacked out serotonin, dopamine or whatever the gamut of emotional brain chemicals are, my physical aches and pains felt even worse. 

To say I was "down" would have been an understatement, but I had one glimmer of light at the end of the tunnel - hope. 

Jean Kerr says "Hope is the feeling that the feeling you have isn't permanent," and I had that definition of hope in two ways. 

First, because I know God didn't bring me halfway around the world to come to this town to not get healed, I had this deep settled confidence that this was just a bump in the road, and it would pass. Because I believe in God and in His plans for my future, I can look at bad days in the framework of eternity. 

Second, I had hope because I knew something about what was coming. 

Even though I was on the couch, mindlessly surfing cable channels,  I knew if I could get through the night, things would be better tomorrow. Not just because it would be a new day. Not just because the night was over. But because tomorrow morning, I was scheduled for my regular Monday morning infusion of this amazing drug called Ampligen.

Having been here now on this chemical for 2 months, I knew that it worked, and that it worked fast.  So I actually slept a few hours last night, on the hope of this morning's treatment, and the relief it would provide.  And that's the amazing part - it worked even faster than I had hoped! 

Before the first 100ml of Treatment #19 had been dripped into my veins this morning, I actually felt better. More accurately, as incredible as this may sound, as the first 100ml was entering my veins, I could feel myself get progressively better! I could discern the body aches diminishing; I started conversing with the nurses and patients, and I found my sense of humor returning. By the time all 400ml was in, and the saline and magnesium were finished, I was completely pain free. 

I was stupid this weekend, without a doubt. I went to far, too fast. But thankfully, I had Ampligen today to mop up the mess I had made after my ride. 

Feeling the Wind on My Face Again

Treatment #16

Today was the best day I've had in a long time. Like my old 1976 Cutlass Supreme years ago, my engine was humming, my hydramatic transmission was smooth as butter, and I even had the "new car smell" on me. This old vehicle actually felt like all cylinders were firing with all four barrels opened up for a while today! Figuratively, I felt the wind on my face again today! And I couldn't be happier.

What was my secret? Of course by reason of the title of my blog, I'll start with the Ampligen. I am now in my 8th week of treatment and although I had some dramatic and noticeable improvements my first few weeks, lately those had sort of tapered off. But suddenly, this week, I noticed a new area of improvement in my health that many told me wouldn't be reached until the 4th month - that of my brain.

The reason that this disease in most countries (outside the USA) is called Myalgic Encephalomyelitis, or other variations of that theme, is because the virus finds a way into our cerebro-spinal fluid, and as the name suggests etymologically, gives us "a pain in the head." But it's not just pain we fight - it's the cognitive difficulties, emotional challenges, and lateral affects to other organs that are controlled by the brain, that give us the most trouble.

It's like having a car built after the year 1999, with a "chip" in the engine that is bad. You could literally baby that car - change your oil every 3000 miles, wash the inside and out every week, do all the scheduled maintenance, and keep it in the garage at night- but if the "brain" called the electronic chip is bad, you've got problems. The engine might be flooding because the "brain" is sending the wrong signal, not because the carburetor needs replacing. 

If you have an honest mechanic, he'll tell you: "your chip is bad" and save you a lot of time and money. Get a crooked one, or an ignorant one, and you'll spend thousands of dollars trying to "tune up" an engine that is perfect, never really fixing the problem - the chip.

You see, its not that our muscles were made poorly, or that we are lazy, or "always fatigued" and need more rest than others. In reality our bodies are probably stronger than most. The fact is our brains have an invader that is causing all sorts of problems, and our "engines" might be getting some distorted signals. Which could also compound problems with our "transmissions" and "drive-train" and "steering", if you get my metaphor. It's what my friend Dr. Jay Goldstein called "Betrayal by the Brain."

Don't get me wrong here. Please, I am NOT saying "It's all in our heads." Yes, I do have real muscle aches. Yes, I did see my energy and endurance go downhill. Yes I did have very real migraine headaches, ringing in my ears, lesions in my throat and on my arms, hypogonadism, stomach problems, and more - all very real physical manifestations of this disease. But I also had short-term memory loss, cognitive difficulties, and depression. I know this because I was forgetting names of life-long friends, losing track of my glasses that were on the top of my head at least once a day, and as my wife would tell you, starting to use the "f" word in two languages as an adjective - long before I started watching "Dog the Bounty Hunter."

So today, when I had a 2-hour spirited conversation with my Pastor over coffee, one of the most brilliant men and minds I've ever had the privilege to know, and not only kept up with him, but had fun, it hit me. "I felt normal for those 2 hours!"

How long has it been since you felt "normal" cognitively? For me it's been quite a while. So the Ampligen is definitely working on my brain now, and I couldn't be happier. But I don't think it was the Ampligen alone.

Two other ingredients came together this week which I think also contributed to some "chip adjustments" in my cerebellum:

• I made some progress with my neuro therapy. Perhaps you've seen Dr. Amen on TV in the USA, or have heard about this. I'll post more in later blogs, but in short, Quantitative EEG and neurofeedback has been proven to enhance the healing of the brain and CNS in CFS patients. When the CFIDS Association was first formed like 20 years ago, there were three main doctors who they brought together to start researching those patients with a "mysterious viral illness." Two (Cheney and Lapp) did the medical side of the research. The third worked on the brain. She (Dr. Myra Preston) proved that Ampligen was fixing the brain, and by adding the neurotherapy, improved Ampligen's results.

• I socialized more. This might seem counter-intuitive, because usually my habit when I feel sick is go introverted, and not talk to anyone. But another patient friend of mine kind of scolded me for "being on the computer too much" and "not getting out" so I gave it a shot. I spent 35 minutes at a local art museum talking to strangers about a sculpture that looked to me like a placenta, but which they thought held the key to the universe.  I had coffee, as I mentioned, with my Pastor. I called some old friends on the phone. I played the piano for some strangers in the lobby of my building. I made a good friend laugh. 

Now I admit, I'm getting pretty tired now. This old car needs to go back in the garage and rest for the evening. So I still have a way to go.

But friends, for two hours this morning, I tasted the joy again. I felt the purr of my engine. I sensed the wind on my face, and I remembered what a 350 cubic inch engine with a 4-barrel carburetor could do. And it was heaven.

Weed Killer Turns Male Frogs into Females

Treatments #14 and #15

I'll get to the weed-killer analogy quickly. But first, allow me a little celebration- today marks my eighth week on Ampligen, and I've now officially entered the "plateau" phase of my treatment. Whereas at first I was seeing almost weekly improvements in things like my sleep, appetite, and other empirical data (see previous posts) now there really is nothing new to report. My doctors and nurse, as well as other patients,  have all told me that the next "bump" in dramatic improvement will come as enter the 4th month of treatment - so now I just have to be patient.

Yet although there are not as many visible manifestations, from what I've read, apparently the twice-weekly Ampligen infusion is still silently, secretly, doing its two main jobs:

• Up-regulating or down-regulating, as needed, an enzyme called the "2 ,5 oligoadenylate synthetase/RNase L (2-5A synthetase/RNase L) pathway", and;

• Up-regulating or down-regulating the "P68 protein kinase" pathway. 

I flunked out of chemistry in College, so these words of course teach me about as much as I would learn if I was reading the phone directory from Lisboa, in native Portuguese. But thanks to the Internet, I discovered more about how and why Ampligen is working for me.

Some viruses, such as M.E., HIV, Herpes, and HBV overcome intracellular immunity by producing substances that deactivate RNase-L, thereby allowing the virus to multiply freely within the intracellular environment and clinical deterioration occurs. Think of that. Virus cells have been multiplying in my body at will. Scary thought. But Ampligen helps our bodies restore the enzymes that help control the uninhibited growth of some of these viruses.

Think of planting a lawn. In many parts of the world you can buy seed that has a built in "inoculator" that keeps nitrogen up, and as a result, weeds from growing around it. It's just an enzyme or bath that they soak the seed in, and it works! I've personally planted alfalfa in desert climates that had this inoculant, and it was perfect. Best of all, every season it came back stronger than before!

Now, if that seed is left in the sun before planting however, and that inoculation enzyme gets "burned off", the plant will be weaker, and weeds will grow around it. So then the gardener has to resort to more antiquated weed prevention...like pulling the weeds by hand, or spraying some weed-killer chemical all over the lawn. But those measures always are less effective, because the weed killer invariably kills some good seed, and pulling weeds by hand always takes out some good growth. So potent are weed-killers, that the National Academy of Sciences reported in a peer-reviewed journal that they can actually turn male frogs into females.

So think of your body as having it's "inoculant" missing...and then doctors, who can see the weeds in your body, start prescribing antibiotics, anti-virals, and sometimes even resort to "pulling" things. You're catching my drift now, right? Those "solutions" always have side effects, just like in my lawn example above. Our stomachs don't like antibiotics, because they kill the good bacteria as well. We get our tonsils out, or sinus surgery, because our bodies are no longer "innoculated" against allergies or sinus infections. And the weed-killer chemicals keep trying to kill the weeds, but they leave scorched earth behind.

Ampligen is better than the weed-killers, in that it actually restores our body's inoculant power. How?

Publishes research shows that Ampligen activates 2-5A synthetase. Activated 2-5A, in turn, activates this enzyme called RNase-L, which destroys viral RNA. Let me underscore that point- Ampligen's work on this enzyme makes it possible for actually destroying viral RNA. 2-5A itself also can control the growth of certain human tumor cells and inhibits reverse transcriptase, the enzyme both HIV and HBV use for reproduction.The protein kinase (p68) pathway is also affected in a similar manner.

So for the first time since contracting this hideous disease, with the help of Ampligen, instead of using the "weed-killer" pills, my body's immune system is learning how to beat back this virus, keep it from replicating, and destroy it.  In short, my immune system is relearning how to do it's job!

Plus, as a side benefit, I'm feeling more "masculine" day by day!

Congratulations. You Feel Like Crap!

Treatment #8

Today is my first month's anniversary with Ampligen, and my body celebrated by manifesting all the signs that it was working - feeling like I had the flu. I say that only half in jest, because my Doctor confirmed last night that,  after seeing patients on this drug for the past 20 years, it is a validation -  if you don't show flu-like symptoms in the early stages, something is amiss. "Congratulations!" he beamed. "That's good news. The drug is working." So with my eyes fuzzy, my head hurting, my bones aching and my stomach a little quesy, I forced a smile and said,  "All right! I'm so glad I feel like crap right now!" 

I guess it's sort of like exercise. I remember in College long before I got sick, after doing my first weight-lifting workout as a skinny adolescent, and waking up the next day with everything hurting.  I' was so shocked! I mean I could understand my biceps and glutes hurting, because we had done those exercises. But that day my elbows, and my ears, and even my ankles ached! My trainer just smiled and said the famous gym-phrase "If it ain't hurtin, it ain't workin!" and went on to add that the muscles all over my body had to adapt to these new stressors, in order to build back stronger. He actually liked it that I felt so horrible the next day.  That I had to walk around campus like a 90 year old man all week, saying "ouch" with every step just made him more pleased.

Such is the world of Ampligen. It may seems incongruous, but the genuine grin on my Doctor's face last night when he heard I felt like crap was not because he was a masochist...it was very appropriate here. Other patients have told me the same thing, that "flu-like symptoms" after infusion is a good sign. But there are other good signs that I've started to notice.

Good sign #1- I'm dreaming again! 

I can't tell you how long it has been since I've awakened from a night's sleep with the memory of a dream I'd had. Now I have memories of 3, 4, even 5 deeply profound dreams, almost every night. Especially on the night after I get the drug infused. Most are quite entertaining. Last night I was on a Navy Aircraft Carrier, and had what seemed to me to be about 3 day's worth of adventures with the Navy Seals! In recent dreams I have had hilarious arguments with movie actor Randy Quaid, (why I have no idea!), have revisited long-forgotten events from when I was only 3 years old in dreams, and have been to Russia. Pretty wild, no?

I used to dread the nights, for all the sleep problems I'd had. Now going to bed for me is actually as good as going to the movies.

Good Sign #2 - My employees are engaging me again!

Because my business can be done over the phone and internet, from all parts of the world, my moving to the USA to come here to this clinic really didn't change the way I did my job. But one thing already has changed.  The way my staff and I are relating, and working on more projects together again.  I'll confess, even though I tried to be a good leader, the sicker I got over the past few years, the less I was able to do, well. So two things resulted. I ended up doing less, and they began to involve me less; by necessity!

Let's face it, loving people do loving things, and when my team knew I had a headache, didn't sleep for 3 days, or could hardly form cogent sentences, they tried to leave me alone. I appreciated them for that, but over the past few weeks, that has changed. Sure, I still do most of my work horizontally, lying in my bed with my laptop. But now my brain seems to be able to handle more. I haven't arrived yet, that's for sure. But I can tell you that I am probably 20% more productive than I was 3 months ago.

Good Sign #3- My appetite is back!

Even people without M.E. will tell you, when you are sick, when your body aches, when you are depressed and you don't sleep, you often just don't feel like eating. Because my challenge was complicated by intestinal parasites I picked up in the tropics, I was taking anti-parasite medicine that also contributed to the lack of appetite. My wife would cook the most amazing meals, and I'd just stare at the plate. By the time I arrived here 2 months ago, I was like 30 pounds underweight. But that all changed a month ago. For the past 4 weeks, actually beginning with my very first infusion, there's been a new sound coming from my belly...hunger pains! Plus a desire for food! And I have gained 5 pounds back already.

Good sign #4- I have slightly more physical energy! 

This one is easy to measure, because when I arrived in this country at the Miami International Airport over 2 months ago, I could hardly walk for more than a couple minutes. That is one wicked airport for sick people, I'm telling you. I guess there is some Spanish law brought from Cuba that prohibits moving sidewalks in MIA, so to walk from the plane, through customs, to our bags, required me to stop and rest about every 3 minutes. This morning, I spent 25 minutes in the gym, doing light exercise, resting about every 8 minutes or so, but completing my little routine. To Arnold Schwarzenegger that may be child's play. But to me it's significant. I am seeing my physical energy slowly return! No, I still couldn't spend a day at Disneyworld, that would be way too much. But I bet I could make it through Miami Airport a lot faster today!

CORRECTION: In a previous post I misstated the cost of Ampligen. The correct number in the "cost recovery program" for the drug itself is $1200/month, which represents 8 infusions given two times a week for a month. My rough estimate of planning for an investment of $50,000 may be a little high, but includes the additional doctors fees, and equally important, the cost to live here. My 1-bedroom apartment alone runs around $2000/month, so with transportation and the like, you can see how the numbers add up. In accounting terms, it's not the drug itself that is the major expense, but the relocating and living in new place in order to get the drug that adds up. Hope that clarifies it.

As always, questions and comments are what keeps me posting. Thanks!

My Peter Falk View of Ampligen

Treatment #7

I don't want to say that getting a needle stuck in your arm is getting routine, but a nice short summary of this morning's Ampligen infusion would simply be "speed." Because I have now tolerated the full dose twice last week, nurse Gwen ramped up the rate of my drip today and got the whole 400ml into my veins in less than 35 minutes. Including taking my vital signs, charting my progress, and the rest, the entire process took no more than an hour this morning! And it felt no different than when it was going in slower last week, thank God.

Many have asked about the financial aspects of my decision to come to this country to start the Ampligen treatment, so I'll jump to that now.

Are you the kind of person who likes to yank a band-aid off quickly, and get the pain over with? If so you won't be quite as shocked with what I'm about to tell you. This decision cost me big time. I won't go into the intangible costs to family, business, and one's psyche, because the money alone is enough to drive you to your knees and ask "Are you sure, God?" There is a page on Wellsphere that talks about the "Ampligen Cost Recovery Program" and features some of the Doctors in the USA and Europe that offer it, but let me cut to the chase. I calculated that I would need $50,000 to come here and live for 6 months, pay for the Ampligen itself, as well as the clinic fees.

Gives new meaning to the term "recovery", no? You may be saying to yourself, "Well, I don't have a spare $50K lying around!" And neither did I. But over the past 5 years, the more I deteriorated in measurable, noticeable ways (see my previous posts)  the more I began to have a subtle change in my mindset. A change that got me to the place where the money, while outrageous, was still something I could get over. Or, better said, something I could figure out.

In a word, the sicker I got, the more I started thinking about survival. In a 5 year period I had gone from being frustrated with my decreasing, reduced lifestyle, to actually being concerned about my life in general.  

You know we are all great at coping and convincing ourselves that we can get along with all these horrible symptoms, and I was probably the "king" of denial in that regard.  And because I had jobs and people I was responsible for, and no bank account with $50,000 just sitting there, for 5 years I basically just, well, gutted it out. Thinking all the while that a half-assed me was OK. That me in pain, working part time, was alright.

But then one day, these subtle nudges came to a head, and I realized the truth. I was seriously going downhill. I wasn't even able to work part-time very well at all. It was during a Christmas celebration in 2008, when I couldn't even sing one Christmas carol, so excruciating was the pain in my head, that I snapped. On that day, something clicked. I decided that my life was at stake, and that in survival mode, you do anything and everything to live. Including giving up dreams,  moving 10,000 kilometers away, and even selling things or taking out a loan if I had to.

On our ride back to our apartment after the event, still in agony, I cursed, screamed, and pounded the dashboard. I cried and said to my wife, "I'm not sure I can do this anymore!" Steady, solid woman that she is, she calmly said, "well let's pray, and then let's figure out what to do so you can." 

There is a great line in the classic 1979 movie "The In-Laws" where Peter Falk, a CIA guy, is explaining his job to Alan Arkin. "Yes, being a spy is dangerous" he says, "but the CIA has a great benefits program. Of course, the secret to the benefits plan is not dying."

The change in my mindset that Christmas day allowed me to actually consider radically upturning and changing not only my life, but that of my family and friends as well. It was a mindset that went from "surviving this sick life" to "fighting for my life." And at that moment, to be honest, the money didn't seem so important. You see, as Peter Falk pointed out, if you're dead, it just doesn't matter.

Once I had my "head-game" fixed, it was relatively easy. I recalled, like most people my age, that I had done these crazy financially "unsound" types of things before...when I started more than one business from scratch; when I left home at age 17 to follow my career dreams as a youth; when I worked three jobs to pay for my daughter's education. I had sacrificed before, and it always worked out. Besides, I figured if I was healthy, I could make that $50K back in about a year, if I stayed in the USA. "But the key was not dying."

Do I think the medical system in the USA and other countries is whacked out? Yes. Would I feel comfortable telling anyone that a bottle of Ampligen costs $1200 a pop? No. Most wouldn't understand. Although the fact is, in comparison to HIV and AIDS medication it's cheap.

But do I gladly pay this money, until such time as it is officially approved, and do I thank God for Hemispherx and Dr. Carter and this amazing drug?  Absolutely. Like the CIA, it's not perfect. But once you decide about the "not dying" part,  the benefits are great.