Saturday, February 27, 2010

Fighting the Insensitivity of Others

Treatment #10

Of all the things we have to deal with internally fighting this hideous disease, to me, the things that we fight externally are sometimes more debilitating. 

This week I came face to face with one of the biggest enemies to recovery, the ignorance and insensitivity of other people. In my case, this shocking reminder of just how alone I really am in this battle came in the form of reminders from the two groups in my life where I least expected it - the medical professionals treating me, and from certain family members who really do love me. 

Let me dispatch both quickly, so that I don't re-attenuate my anger and dissapointment, and allow them to adversely affect my healing any more.

When it comes to family, (in this case some blood relatives who live a distance away and who communicate to me through text messages,)  I forget that they just don't understand what I'm going through. Even though I've tried to explain it, and have asked them to read this blog along with  the comments and struggles of others on blogs like this, they seem to think all I need is a pep talk. 

There is a terrible story that has gone around for years where someone is trying to cheer up Mary Todd after the most horrendous thing happened in her life. A direct relative of hers told me this story so I feel at liberty to quote it here. The punch line was, as this "well meaning" yet ignorant person tried to console her, he said, "Well, apart from that, how did you like the play Mrs. Lincoln?" 

Sometimes I think my relatives have about as much sense when it comes to this horrendous thing in my life. 

I remember reading in a British publication a leading M.E. doctor saying "if my patient's families would understand that for most sufferers of M.E., both the symptoms and the reactions to the viruses raging in their bodies are worse than that which an AIDS patient experiences, they might get a clue."  I hate to quote that statement to my family, although I believe it to be true, because I try not to freak them out. 

On Ampligen, as others have documented, my symptoms  get worse before I get better. So this past week has been extremely difficult, with extreme flu-like symptoms, body aches, emotional roller coasters, migraines, stomach turbulence, and more. I don't know about you, but when I feel like that, simple motivational phrases and "positive thinking" is not going to do it for me. It's like passing a soldier bleeding on the side of a bombed out building in Iraq and telling him to "Cheer up! Think positive! The Army loves you." 

Then there are my Doctors here in the USA.  This week I also discovered what I had been reading about for years, but by reason of living outside the states, hadn't experienced first hand - the overworked, under-staffed,  barely competent office that is called a physician's "practice" or medical center here in this country. I won't use this space to express my amazement at the denegration of this industry. I'll just say to my fellow patients, in my view, you probably know more about this disease than they do. You probably are better suited to know what you need, through research and forums like this one, and listening to other patients, than you are trusting your physician to know what is best for you, and thinking he or she is "plugged in."  

It may not be their faults, personally, but in my opinion, they have neither the time nor finances to invest in maintaining their "edge" against this disease. They are so strapped for time and resources that they do not have room for reading basic journal reviews, dialogueing with other physicians,  or probing new solutions that other physicians are trying worldwide, They certainly don't spend any time doing the research that you and I do - and that to me is frightening. 

I won't even go into the way the office is "run", the lack of administrative cohesion, or the abject lack of professionalism from some of the office staff because Doctors are forced to hire essentially minimum hourly wage workers "off the street." One nurse told me that she was never even interviewed by the nursing service in person! Ever! They hired her by paperwork only. 

Other patients have warned me not to get distracted by these obvious problems, that really tend to scare you, so I try to just focus on my health, and just getting my Ampligen twice a week. But I will say, it still shocks me that no one in that office who swore the hippocratic oath, ever volunteers anything about my treatment, about what to expect, about the symptoms of my disease being attenuated by Ampligen and side effects I should anticipate.

It was through forums like this one and other patients that I found out I should probably try taking a saline infusion after the Ampligen. It was from another Doctor in town who has seen other Ampligen patients that I was told about getting magnesium in my saline, in order to help with the muscle pain. It was through another Doctor in L.A. that I learned that any immuno-modulator like Ampligen or Interferon messes with the serotonin in the brain.

When I experienced the depression trough that I posted about last week, and expressed that to my Doctor, his reaction was to take notes and say "mmm hmmm." No explantion, no recommendations, no comment whatsoever! 

Thankfully, from another PhD friend on another M.E. forum,  I had some explanation that made sense. This super guy told me: 

"Cytokines, like the interferon production stimulated by Ampligen, act directly in the brain to cause symptoms of sick behavior. Apparently the body's plan is to get us to withdraw via feelings of anxiety and depression until the infection is dealt with. Unfortunately, for those of us with chronic infections, the anxiety and depression persist. When we take Ampligen, TF or other immune boosters/modulators, we go through a fresh round of intensified psychological correlates of the immune activation."

And from Dantzer and Kelley, 2006:

Cytokines “act in the brain to induce common symptoms of sickness, such as loss of appetite, sleepiness, withdrawal from normal social activities, fever, aching joints and fatigue…The fact that cytokines act in the brain to induce physiological adaptations that promote survival has led to the hypothesis that inappropriate, prolonged activation of the innate immune system may be involved in a number of pathological disturbances in the brain, ranging from Alzheimer’s disease to stroke…Indeed, the newest findings of cytokine actions in the brain offer some of the first clues about the pathophysiology of certain mental health disorders, including depression.”

Thank God for the Internet, and online Forum friends like him, for helping me understand what was going on in my body! Or for at least giving me a clue. 

Wouldn't it have been great for my Doctor to share a little tidbit like this with me? Forget the fact that he is my physician, wouldn't it be something a friend would want to share with me? 

So last week was, in a sense, my "Ford's Theater Revelation." I now know that people are insensitive about me and my affliction. OK, I get it.  I am here in this country for one thing, and one thing only- getting that amazing medicine called Ampligen in my veins twice a week. I am not expecting the physicians in the office to monitor me, inquire about me, or even care about my symptoms. I do not expect them to tell me in advance what I am about to experience, or offer counsel. I am thankful that my nurse, Gwen, is a sweetheart, and is a professional, and makes my treatments pleasant. 

I know that Ampligen is working, and I thank God for Hemispherx and the fact that this medicine exists.  That the FDA, the American medical system, the malpractice insurance rates, the inferior staffs, and the overworked, numb doctors and all the rest make the patient's journey such a challenge today, is a shame. That some of my closest relatives think that when I am down, sick and depressed because of chemicals raging, all I need is to read a motivational phrase from Dale Carnegie,  is not ideal. 

But now I know not to expect more from these folks. Like the guy in Ford's theater with Mary Todd, they haven't been through anything like this before, are at a loss for words, and really don't know what to say. I can accept that. 

But excuse me if to either groups, I choose sometimes not to take your calls. You don't understand, and sometimes there is nothing I can say to make you understand.

Monday, February 22, 2010

Ampligen, Serotonin and Anhedonia

"Depression is melancholy minus its charms." Susan Sontag

Treatment #9

 This past weekend was rough. After having 8 treatments of Ampligen over the past 4 weeks go so smoothly, I wasn't prepared for the surprise dark cloud that rolled over my horizon beginning Friday evening. Some would call it depression,  and I'm OK with that. But upon further research, I think the more appropriate term is "anhedonia." Let me explain. 

Starting late this past Friday afternoon, I began to sense an overall mental malaise come over me - a generalized anesthetizing lack of emotional feelings. This “vacuum” of emotions continued into Saturday, to the degree that I was no longer enjoying watching the Olympics on TV, was no longer interested in eating, and surprisingly for me, no longer even interested in sex. This was especially disconcerting due to the fact that my wife had just flown in from our home country, after having been away for the past 20 days. And what’s more, she looked great. I mean, really great, if you get my drift. 

Although my mind could process this fact empirically, neither my heart, nor my body would have any of it. It was as if something in my brain was “unplugged”, and nothing was reaching my heart. I had no appetite for anything, and ended up just laying on the couch, mindlessly clicking the TV, noticing that the only thing I could actually feel was a headache. And that made me frustrated, and that prompted my old friend, the “F-word” to come roaring back.

Of course, my wife responded appropriately, basically telling me that cursing at her was neither charming, or a good way to get romance. Well, you get how the weekend went, right? 

In a desperate attempt to figure out what the heck was going on with my brain chemistry or my body, I did what we’ve all learned to do in our situation, and went to the Internet for research. What I found jumped off the page at me on scores of reports.

It turns out that, when you read the journals and reports of other Ampligen patients, some from the 1990 original trials, and others in 1999 and beyond, you find this “emotional trough” hit many of them. Even more striking to me, upon reading these reports, was that almost to the person, this “cloud” of “blah” occurred almost exactly one month after beginning the Ampligen!

Friday marked the end of my first month. Ding!

I went on to do more research, and discovered that this is not a new thing for other immunomodulatory drugs. For example, if you search “interferon alpha” a standard anti-viral drug used to fight Hepatitis C and some cancers, you will see most of the reports citing this “depression” “irritability” and “anhedonia” that hits interferon patients- again, after the first month of treatment. The reason the drug does this, these Journal reports describe, is that the drug basically messes with the serotonin levels in the brain.

Because of the immune modulating properties of Ampligen, that I believe probably have affected my serotonin levels, what I felt this past weekend was likely best described as Anhedonia- which the medical dictionary defines as: “an inability to experience pleasure from normally pleasurable life events such as eating, exercise, social interaction or sexual activities.”

Whatever you want to call it, it was no fun. But surprisingly, as quickly as it arrived, like a Mid-Western downpour, the storm clouds pretty much blew away today. I received my usual infusion of Ampligen this morning, and as is typical after,  I feel some mild flu-like symptoms. But I do have an appetite again, had an animated conversation with my wife on the ride home, and am "feeling" things again. But I have to admit, I’m still sort of on guard. The speed with which the darkness came over me, and the lack of warning from either my doctor, or anything I had read to date, sort of shocked me.

I’m still not feeling very charming today, but we’ll see how the evening unfolds.

Your comments and questions as always are very valuable to me. Thanks!

Friday, February 19, 2010

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 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!

Monday, February 15, 2010

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.

Thursday, February 11, 2010

Amped on Ampligen

Treatment #6

I promised I would tell the good, the bad and the ugly of this journey so today's post will have two out of the three Let me get the bad out of the way first,  because the most amazing thing happened to me after my last treatment I'm bursting to tell you about it.

First, let me set the stage. 

As my prior post indicated, I was expecting to feel the "bad" side effects of the full 400ml of Ampligen after my treatment on Monday, and as predicted, I did. By Monday night by glutes and legs were aching so much, I had to take three hot baths in the evening just to distract me from the extreme flu-like body-aching symptoms. Additionally, my left thigh muscle was twitching like it was hard wired to the electrical outlet for about 36 hours. It didn't keep from sleeping, but it was, quite frankly, a little weird. It seemed to be shaking my thigh at about 100 beats per minute, but not in rhythm or good timing, sort of like a bad 60's song like Inna Gadda da Vida. But knowing that Ampligen is an immune-modulator, and that most research shows a connection to the body's nervous system, I just decided to ignore it. By Tuesday afternoon it had pretty much subsided.

But the greatest news was what happened on Wednesday. Now two days after the Ampligen had been in my system, I woke up normally, did my usual 20 minutes of light exercise, and decided at exactly 11:00AM that I had enough energy to get a haircut. The haircut took way longer than I would have liked, but incredibly, I was neither impatient about the delay, nor in any pain after sitting in that chair from hell main of imported Danish wood! It was 1:00PM, I had no headache, I had no muscle aches, and I still had energy. Now THIS was something! Very rare for me.

So I decided to push it- to test the waters so to speak. "Let's see if this Ampligen stuff is really making a difference" I said to myself. So I called a car dealer with whom I had spoken earlier in the week about "maybe coming out to test drive a used car" and told her "I'm coming."

Now here's the amazing part. For me,over the past many years,  just the thought of buying a used car would have been too much to even process mentally. Knowing that it would involve not only the decision about the car itself, but also endless paperwork and brain-energy to get it licensed, titled, insured, inspected, etc. would have sent me over the edge. But yesterday, as I drove to the car lot, I found myself feeling something strange; something I hadn't felt in a very long time... peace.

Exactly ninety minutes after I had arrived, I kid you not, I was driving my "new" used car off the lot! Complete with plates, title, registration, and car insurance! This was even more astounding to me because I have not lived in the USA for 7 years and had NO car insurance in this country. But I have to give kudos to CARMAX, they really make it easy for the neophyte to get through this paperwork easily.

What I really had to say to my friends and family after I got home was, I have to give credit to the Ampligen.  I could actually feel my "old self" returning for a few hours yesterday- cognitively, physically, emotionally, and even in the humor department. It was as if this drug was restoring my personality as it restored my body. One of my business partners of over 20 years actually commented and said, "you sound like the medicine is working!"

Now as I write this laying on my bed with my laptop warming my thighs, I'm getting ready for the side-effects of the treatment I just had this morning. But I'm smiling, thinking about my new car, glad I'm not paying for taxi fare to and from the clinic, and almost looking forward to Inna Gadda da Vida playing on my leg.

I am now "amped on Ampligen," and I like it.

Monday, February 8, 2010

Ampligen - Double the Dose Double the Redundancy

Treatment #5

Today's infusion took longer than any prior, because they doubled my dose. As promised, my Ampligen quantity was upped from 200ml to 400ml, which veterans tell me is the "full dose." So as not to stress or shock the body with the increased chemical or the quantity of fluid going into my arm, Gwen reduced the drip rate to about 70 minutes in total. That was followed up with a bag of saline, so I was sitting in that chair for about an hour and a half.

This morning there were three of us all getting the "juice" along with two or three nurses. One of the reasons that Gwen or a nurse stays with us at all times is precisely for that reason- to monitor and adjust the drip rate in order to conform to a predetermined speed. For example, today Gwen said my BP was a little high, which corresponded to my being a little nervous when I arrived. As a result, both nurses told me that they would have to "open up" the valve to help the Ampligen flow correctly- because higher blood pressure, stress, anxiety and a variety of other seemingly unrelated factors can affect one's veins, and their ability to accept an infusion drip.

Today Gwen must have adjusted that drip rate a half dozen times. Once I settled into my chair after about five minutes, she actually said "whoa, cowboy, I need to slow that baby down. You've really relaxed." I asked her what that meant and she showed me how the drops in the bottle were moving at like two per second- too fast. "It's very normal after you get relaxed for your veins to open up" she said. "And you have killer veins," she noted.

Normally I'll take any compliment directed my way, so few did I receive as a child raised by parents who read Dr. Spock. But lately, as I've been humbled by this disease, I've recognized that everything I have is a gift from God, and He made not only my big veins, but my big nose, my big feet, my big belly, and pretty much everything else that is big on my body. So I just smiled and said sincerely, "Thank God."

The reason that these "big veins" are worthy of thanksgiving is, some patients aren't blessed with visible arteries at all, and the job the nurse or doctor must go through to both find the vein, and get the flow, can be arduous if not sometimes impossible. I kid you not, one sweet patient who I met with baby-like skin told me that sometimes on rare occasion it has taken as many as SIX attempts. But my experience is almost always, first time is a charm.

I talked to my Doctor briefly after the infusion and he said "Now be sure you get horizontal, take it easy today, because you'll probably feel a few side effects, and tomorrow, you'll be good as new!" Did I mention in previous posts that my precious Doctor has a very positive, upbeat personality, with a contagious grin? I personally am a guy who responds well to that kind of motivation, but I also know that if he casually mentions "a few side effects" that it probably means the "caca" is going to hit the fan! (Please excuse my Spanish.) Like the Brits in WWII who called the bombing of London a "very illuminating fireworks display," these undersold comments of his usually forewarn of something potentially bigger than the soft words indicate, so I've been on guard ever since.

In reality, it hasn't been bad today. Yes, I do feel the larger dose of Ampligen producing more side effects today. They include:
  • A twitching in my left leg near the sciatic nerve;
  • A slightly sore back near where my kidneys are;
  • Mild ringing in the ears;
  • Sort of a spaced out head.
It's the last one that is most noticeably unique. I've had twitches and sore parts of my body before... but this cognitive fuzziness I feel today is new, and different. It's not that I can't think- I'm doing fine typing and expressing my thoughts on this blog. It's that it is taking me just a little longer, and when it comes to verbal skills, let me just say I can tell today I am no Christopher Hitchens or Peggy Noonan. I'm also finding myself being redundant. I'm no Peggy Noonan that's for sure! (OK, I'm joking now, but it is true!)

For example, I just met a neighbor outside and I said: "Hey, how ya doin?" He replied, "great, and you?" Here was my answer, verbatim: "Good, thanks! And you?" He sort of smiled, and when I realized my redundancy I said, "I guess I asked you that already, didn't I?" He was a good sport, and said, "Yeah, but I'll tell you again anyway, I'm still great!"

So double the dose, double the side effects, but none that I can't handle. And if my personal motivation champion aka my Doctor is correct, well then tomorrow I'll be "good as new!"

Did I mention that already?

Thursday, February 4, 2010

Like One Too Many Coors Lights

Treatment #4

Today's Ampligen infusion marked the fourth and last treatment at the 200ml "adjustment" or acclimation dosage. I'm now into a quaisi-routine, arriving at the clinic around 9:30AM every Monday and Thursday morning, and the procedure goes amazingly fast. In less than 3 minutes Gwen has me hooked up to the drip bag with "miracle drug" coursing through my pipes, followed by a bag of saline solution. The entire process takes about an hour total. Starting with next Monday's I.V., I'll be ramping up to the full 400ml dose, which they'll infuse a little bit more slowly.

So what does it feel like? I'll break it down by time.

What Ampligen Feels Like the Day of the Treatment - Going into my veins, I feel absolutely nothing. I'm not cold, I'm not flushed, nada. Then, things start feeling pretty good! My appetite starts feeling restored during the treatment. I talk more. I also seem to be smarter! This may change starting next week, (when I double the amount of "juice" my body has to process), but based on the first two weeks, for the first few hours after the Ampligen, I actually get a little boost. Cognitively I feel more aware, I can drive without difficulty and math is easy for me. I talk on the phone with much more lucidity (in my view, and some friend's views as well). These are sort of empirical markers for me, because I can recall times when I would be behind the wheel and get lost in my own neighborhood, so bad would the memory and cognitive problems be. Last night in bed, I wrestled with something that was driving me crazy. Who was that portly actor who played the role of Perry Mason and Ironside on 70's TV? Today after my treatment, it was obvious--- Raymond Burr, of course!

What Ampligen Feels Like the Day After Treatment- By the end of the treatment day, the boost I described above has worn off, and I start to feel tired. By nightfall, my head hurts a little. Upon awakening the next day, I feel like I either am just getting over the flu, or that I went on a bender the night before. Not unlike the feeling many years ago when I was a teenager in college and enjoyed the "buzz" of a few too many Coors Light beers, only to pay for it with a throbbing head the next day, Ampligen the day after makes my body ache a little. Specifically, like with a mild case of the flu, my butt and leg muscles hurt, and I get a little testy. My wife already has "guaged" that it's better to have good conversations with me the day of my treatment, as opposed to the day after, because I will be much less patient the next day. But even with all this symptomology, I can say it's no worse than "crash days", and actually is sort of different. Unlike the disease, and it's horribly unpredictive symptoms, I can sort of "plan" on this headache and muscle pain, and deal with it. It also helps that I am firmly convinced that the Ampligen is actually helping my body.

What Ampligen Feels Like 48 Hours After Treatment- Two days after the infusion, I'm usually back to baseline. I was going to say "normal" but for patients like us, normal has a different meaning, right? (Besides, as Alfred Adler said, "The only normal people are the ones you don't know very well.") So let me put it this way. By the time 2-3 days have past, I'm actually starting to want the drug. My body has already found it to be a cooperative, helping friend, and it misses it. At this point, I'm finding the usual feelings of M.E. returning, my cognitive abilities dimishing, my stamina waning, and all the rest you are more than familiar with. Is it like being addicted to something? No, not at all. I just really, want the Ampligen, because I am convinced it is helping me.

Because today is Thursday, I now have to wait 4 days until my next infusion. But my father-in-law is coming to visit me on Sunday from out of town, specifically to watch the SuperBowl with me, and help me take my mind off my body. It will be fun to see him, fun to watch football with him, and of course, fun to watch him drink one or two too many Coors Lights!

Monday, February 1, 2010

My Ampligen Treatment Week 2

Treatment #3

Three down, scores more to go!
Today as before, Gwen got the needle in quickly, and strapped me up to 200ml of Ampligen, this time pushed through in under 35 minutes. Today I followed that up with a saline infusion, recommended by many, and it seemed to actually give me a boost! So far, so good.

Because so many have asked, I’ll use this time to describe how I got here.

My journey with this disease started 25 years ago, in the San Fernando Valley in Southern California, when seven of us working at the same place all were slammed with what we thought was “one of the worse cases of flu” we’d ever experienced. Each of us manifested some unique symptoms, but we all shared the commonality of not being able to recover after the usual 7-10 days, and, scarily, not being able to lift even our arms off the bed without extreme exertion. For months we all struggled with weird pains and body failures; my most particular distressing were blisters and canker-sore like outbreaks on the back of my throat and upper arms. We’d take antibiotics, see our respective Doctors who by and large all went to the same school of “I don’t have any idea what this is”, and tried to cope as best we could.

After about two years of this most had quit work and were home in bed, but not me; I suffered through, not realizing both my productivity, and my life, were going down rapidly. In late 1988 my Dad came to visit L.A. and when he saw me blurted out “Son, you need to go to the Mayo Clinic, immediately. I’m very concerned for you.” He was in the pharmaceutical business so had been around doctors and patients for years. His words, and the look on his face convinced me I should go.

The Mayo Clinic at that time had seen others with M.E. but they had not treatment recommendation other than- “quit work go to someplace where you can be taken care of, and take a full year off. You might recover.” Amazingly, I did! And thought I had seen the last of this ugly invader that still was hardly recognized by the medical community. I was fine with that, selfishly, because I thought this horrible part of my life was over.

Fast forward to 2005. I am now living outside of the USA in a tropical climate. I’m skin diving, body surfing, eating the local foliage and fauna. Slowly, I find myself losing weight. I have diarrhea often, my head hurts a lot, and my workouts at the gym keep getting shorter. My ears ring most of the day and night, my concentration wanes, and for the first time in 2 decades, my wife hears me using the “F” word as an adjective. She said my mouth was toxic. I felt like my whole body was. This more than anything made me go to a doctor.

He asked me, “you took no prophylactics to prevent our local parasites to invade your stomach, did you?” The deer in the headlights look I gave him was all he needed as an answer, and after uttering the "F" word in his native tongue under his breath, he wrote me a prescription

Turns out the worm eggs that reside in the local fruit, the bugs and parasites that are in the local waters, all decided to make my body their new home, rent-free! But what was worse, the increase load on my already damaged immune-system actually reactivated all the other viruses in my body, and M.E. came back, uninvited. Must have been crowded in there, but the old bastard disease found a way to rear its ugly head again, amid all the competition.

As a result, beginning in late 2005, my U.S.A-based specialist, who I am with today, began suggesting, lobbying, and strongly recommending that I move back to the states to start Ampligen. It took me almost 5 years to heed his advice, and leave the life and family I had established, but now I am so glad I did. I can already tell the medicine is doing things in my body for the good.

In a future post I’ll describe the actual formal application process, and the move here. That was hard, frustrating, and it gave me many more opportunities to say the “F” word. Not because I’m not a seasoned traveler- I am. But because when you are sick, and tired, and emotionally spent, the last thing you feel like doing is moving to a hotel in a foreign city, during post 9-11 airport security lunacy.

But look, I had my treatment this morning, and I was able to write this post almost without correction or editing...or cursing! I really think the Ampligen is working!