Monday, March 29, 2010

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. 

Tuesday, March 23, 2010

7 Absurd Things I Do to Make Life Manageable

"I am thankful for laughter, except when milk comes out of my nose." Woody Allen

It was Christmas time and the jazz band on the corner was playing the requisite boring Jingle Bells music. I just completed my 17th treatment yesterday, and things are going well. So much so as I passed the corner,  I was reminded of how bad I felt when I arrived here three months ago. I had just come to the USA in the heart of winter without a coat,  to start my Ampligen treatment,  and I felt sicker than the proverbial dog. I needed something to break me out of my funk, cheer me up, and make me smile. I saddled up to the leader on the trumpet with the donation bucket in front of him, and said, "Can you play something else?" He replied "Well, the city wants us to play holiday music." I flashed him a $20, and said, "How about something by Steveland Morris?" 

He grinned from ear to ear, took my $20, and said, "Why not? A little something just for you, by the great Stevie Wonder!" His 5 piece group then lit up the block with a fast version of "Isn't She Lovely?" for 10 minutes, while I just soaked in the shower of brass therapy.

Someone in the crowd expecting "Winter Wonderland" mumbled, "that's absurd!" I just smiled and said to myself, "Yes, isn't it? I'll take absurd right now, if it helps me feel better." 

Face it- you’re special. You can’t do the same things “normal” people do, and may need to do certain things that others don't, just to survive. But there are ways to manage, even if on the surface they may seem absurd.  Here are some simple yet very effective “tricks” I use to help make the days easier, routines more balanced, and my recovery times shorter.

1. Use a checklist for Daily routines. - Pilots use checklists not because they don’t know how to start the turbines, but so they don’t forget some little detail. Because I know my memory sometimes fails me and I can forget to take important meds, or even forget to eat, I have a checklist of routine things I do each day that I use religiously. This takes the pressure off my mind and also eliminates that cycle of frustration that happens when at the end of the day I’m lying in bed wondering “Did I take my B-12 today?”  or “Did I do my exercises today?” My checklist starts with such basic things as "Turn on music" "Draw hot bath" "Take Vitamins" and "Shave." Yes, I've actually had to be reminded to shave- that's how weird this virus is.

2. Open up the creative side. - I’ve found that when I read short poetry, look at modern art, or rotate photos in frames, my day goes better.  My daughter the psychology major tells me I am exercising other parts of my brain by doing so. My Pastor reminds me that I am not just "body," but "spirit, soul and body." All I know is reading a Psalm, listening to Supertramp, or playing the piano makes me feel more at peace even while the virus is raging.  For example, since starting on Ampligen I have put over 30 photos of friends and loved ones around my apartment and they make me smile.

3. Play “Soundscapes” music.
- The cable TV company I subscribe to has over 100 channels of music, and I’ve found a “new age”  or “ambient music” one called “Soundscapes” that I like- it is just like the stuff they play at spas and when you get a massage. Slow, gentle, almost invisible music plays in the background of my apartment almost all day. Sometimes I fall asleep to it. The AMTA says that the ambient music therapy can positively affect all sorts of cognitive and behavioural changes. 

4. Plan to do half. - My NeuroTherapist gave me this idea. She says it’s better when I think I can do 2 hours of shopping, to actually only do one hour, and then get horizontal. If I think I have energy for 15 minutes of walking in the park, I should do 7 or 8 minutes, and then quit.   I’ve also found through trial and error it is better for my head and my body to do things in short bursts. If I write a letter I might do it in 3 paragraphs, spread throughout the day. To do my income taxes, I am doing just one page a day, for the next 100 days. A good friend of mine while sick with this virus got her law degree one class at a time, over a 7 year period.  Jazz great Keith Jarrett, also an M.E. survivor, sat at the piano in 10 minute bursts, wrote a couple notes, and then went back to bed when he was really sick.  When we push it, we usually set off the cascade of symptoms- and that is not good. So take in small bites.

5. Connect with others. – If I didn’t have my wife and daughter, some close friends to talk to by phone, my online forum friends, Twitter, and some fellow patients who understand what I’m going through, I would have gone nuts a long time ago. It helps when I am honest with these folks, and if I’ve had a bad day to admit it. If you are fortunate enough to have a fellow-patient in your life who can encourage you and say “You are going to make it. You’re doing great!” then you will find they make up for all the lost friends and toxic “friends” that are poison.

6. Get horizontal, often.
- Whether it’s because of our orthostatic intolerance, our immune systems on overdrive,  the toxins in our systems, or any of the other things we battle,  we need to take breaks. My Doctor says that the definition of a “break” is actually getting my legs and head parallel with the floor, or it doesn’t count. I’ve found that 5 minutes horizontal “recharges” my tanks. I do this in shopping malls, in restaurants, whenever I need the break. When I travel I am shameless. I lay down in the airport all the time, on the dirty carpet, waiting for airplanes, boarding times, whatever. It's amazing how contagious it is. Once other passengers see me on the floor, others do it too! No one likes standing around an airport when there aren't enough seats...even "normal" folks.

7. Laugh. - There is something medicinal about the endorphin release when I laugh that always makes me feel better. Many researchers have found that laughter helps the immune system. Since starting on Ampligen I have purposely chosen not to watch Glenn Beck, Keith Olbermann, or really any news show apart from local weather, because it depresses me. Instead I watch The Comedy Channel, and literally laugh my ass off. When I am with a patient friend of mine I make it my goal in life to make her at least guffaw or chortle, because when she laughs I laugh more! Sometimes when I can’t sleep and I don’t feel like laughing I’ll force myself to “fake-laugh” and after 10 seconds I actually feel the giggles turning to reality. Probably because it’s so ludicrous, I actually find myself the funniest guy I know at those moments, and I sleep like a baby. 

Three months ago I arrived in this town to try to get better, and I started my therapy that day with the absurd idea that a little Stevie Wonder music would make me feel better. It was. And it did. And I still keep doing absurd things for that reason.

Friday, March 19, 2010

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.

Monday, March 15, 2010

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 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!

Tuesday, March 9, 2010

Being "Pushy" with Your Doctor

Treatment #13
Today's infusion marked the beginning of my 7th week taking this treatment, and the 40 minute drip-rate of the 400ml seems to be about right for me. I am also taking magnesium in saline once per week, which helps with the side effects of muscle aches.I am so thankful for this drug, because I can feel it working and making me stronger, week by week. But I also know that for most, until the drug is approved, getting Ampligen is problematic.

Someone asked me recently: "But what can I do if I am not on Ampligen? My Doctor has no suggestions for me!" My response was longer than what I am about to share with you here, but the heart of my answer was "Push your Doctor to let you try things others are using."

Perhaps that seems like a Sisyphean pursuit to you with your physician, like pushing a boulder up a mountain, but I can tell you it's worth the effort.  

Because I am a tenacious researcher, I discovered a number of treatments that worked for me pre-Ampligen, by searching published medical journals, doing exhaustive online research in a number of languages, and literally, hounding doctors. I've had the privilege of conversing with at least a half dozen of the leading M.E./CFS specialists in the world, and because I lived outside the USA, had access to some things that weren't available in the states.

Tragically, I'm convinced that for the average patient suffering from this hideous disease, your local doctor who doesn't specialize in this infirmity probably won't tell you about most of these options. But maybe you should at least "push" the question.

If you haven't explored any of these options yet, I encourage you to take "ammo" to your doctor, and basically ask him or her, "any reason why I shouldn't be trying this?"  

If they say "why?" you can say: "Because other patients have used them to some success, and I have some research to back it up. And oh, by the way, why the hell not? Don't you want me to get better?" Then hand them your pen and say, "is your prescription pad handy?"

Here are my top five recommendations:

Nexavir (Kutapressin) - Based on the theory that the immune system is dysfunctional in CFS, researchers in Texas rediscovered this immune system adjuvant derived from porcine liver made popular in the 1930's. Kutapressin is an amino acid complex that was first used for Herpes Zoster. I would inject this 3 times a week, and could feel a difference. You'll need to ask your Doctor for a prescription for the vials and needles.   Now called Nexavir, this drug was around for so long it didn't even have a patent, and after Schwarz Pharma stopped making it, it was reintroduced a few years ago, and you get it from this company.

Imunovir. Most research suggests that our immune systems are in over-drive...working too hard. Isoprinosine is an immune modulator, probably helping to shift Th2 back to Th1, while also serving as an anti-viral. According to studies,  the immunomodulating and antiviral properties of the synthetic purine derivative Immunovir in CFS patients revealed enhanced natural killer cell activity and clinical improvement of fatigue. Lots of HIV positive patients all over the world take this stuff. You can get these tablets by mail from Canada from Rivex Pharma and you take it on a "pulsing" schedule, 5 days on, 2 days off; 2 months on, 1 month off. 

B-12 with Glutathione Injections.  CFS patients use up B-12 and glutathione in our systems very fast, and glutathione depletion is a problem. Read more here.  With a few other ingredients added this treatment is known as a Myer's Cocktail and has been used by many CFS doctors for years. Here's the recipe if your doctor or compounding pharmacy needs it. I self-injected B-12 and Glutathione and always noticed a difference when I stopped. You'll need a script from your doctor, but you can self inject.

Moclobemide. This is one of the first anti-depressants ever developed,  and is a reversible MAO inhibitor - acting on the serotonin in our bodies.  Remember the virus is said to be in our CNS and brains, as well as our stomachs, so it helps your serotonin balance. It's not that we are sad, we just have screwed up brain chemistry. Did you know that there are serotonin receptors not only in your brain, but in your stomach as well? This drug helps keep the serotonin you've got,  working. Taken in recommended doses, Moclebemide does not mess with tyramine and does not give you the "cheese effect," so diet is not an issue as with other MAOIs. There are absolutely zero side effects relative to libido or sleepiness, and it is available everywhere except the USA- not because it doesn't work, but because the drug monopolies want to sell you Prozac. Research shows it works as well or better than the newer ADs. And because it is reversible, I found it to be easy to manage.   In Canada or Australia Doctors know it under the brand names Aurorix or Manerix.

Topical Ketamine. For pain emergencies, like unbearable migraines, this is the best reliever out there in my view. It's called a "dis-associative" in that unlike most pain relievers, it basically doesn't work on the pain itself, but rather just the "pain signal" in the brain. It chemically "unplugs" the message that tells you your head is killing you. As documented in "Betrayal by the Brain, Dr. Jay Goldstein pioneered the use of topical Ketamine for CFS patients, and you can ask your Doctor to order it from a compounding pharmacy. Don't freak out by the "bad rap" and misinformation about Ketamine ...face it, most drugs that work on pain could be sold or used on "the street" for nefarious purposes. But on the few occasions when I was vomiting due to migraine pain, the Ketamine "gel" gave me relief. And unlike opiates, which tend to be Th1-Th2 shifters, Ketamine doesn't affect your immune system at all. It's also been reported in Journals as being a very effective anti-depressant as well. But I only list it here for the pain relief factor. I probably used it less than 6 times a year, but when I was desperate, it literally saved me. 

Today, I take none of the aforementioned anymore, except a small dose of moclobemide. The Ampligen is the job now, and the protocol requires that you not be on any of these types of immunomodulators while you are in the I couldn't take them even if I wanted to. But these were a lifesaver to me before I started Ampligen. Here's a nice summary of perhaps why.  

As I've shared in other posts, the reason I have taken the radical step of uprooting my life and family and moving to a foreign city to get Ampligen, is that I decided I needed to be almost militant about saving my life. If that means we are considered "selfish" by the occasional nurse, or "pushy" by a Doctor, so be it. 

In my view, "pushy" is better than "so sick I can't move."

Saturday, March 6, 2010

Feels Like Victory!

Treatment #12
I hope this doesn't gross you out, but yesterday I ran to the toilet 9 times and had nothing to show for it. Yes, another surprise, yet not altogether bad result of my Ampligen treatment. But one I actually was happy about. Let me explain.

I guess I'm now considered a veteran - because my twelfth Ampligen infusion went off like clockwork. Gwen found a nice vein the first try, adjusted the rate to take 40 minutes, and because by coincidence we were the only ones in the room that day, we chatted about her son, and life in general. She's a great nurse and I realize how much her kind and friendly personality makes the infusion process less dramatic for me. What I didn't know was that there was drama coming later.

Over the past 6 weeks on this drug, the side effects themselves have been unpredictable, but the timing of them pretty regular. They usually begin to appear at least 4 hours after the chemical is dripped into my body, and hit big time by the next day. I've had everything from headaches, extreme muscle aches, nerve twitches, to strong lower back pains - but never the same one twice in a row, and never all of them at once, and rarely repeated.  It's almost as if the Ampligen is taking care of different areas of my body one at a time... and then moves on. For example, early in my treatment my glutes (buttocks muscles) would REALLY hurt me the day after my infusion - more sore than if you had done 10 sets of squats, then ridden a horse for half a day, and then had the flu. But I no longer feel that anymore. The side effects are moving to new places. 

This week it was my stomach's turn to react. And react it did.

The Battle of the Bulge. I've never felt this situation before. How can I describe the contradiction in my gut? It was as if I was constipated and had the "trots" all at the same time, with turbulence and pain moving between my stomach, upper, and lower intestines at will. If you said it felt like a battle was going on in there, you wouldn't be overstating it. This was nothing like the worms, parasites or other stomach invaders I've had in over 30 years of globetrotting. I have traveled to many tropical countries.   I am very familiar with amoebic dysentery, "Montezuma's Revenge" and traveler's diarrhea - trust me, this was not the same.

This was more like an army (my own immune system) waging war - rooting out insurgents or terrorists in a territory that they had long held hostage, and had called their own for a long time. Think of what it takes for American forces to find Taliban terrorists rooted into the homes and city-centers of the people of Afghanistan, and you'll get the picture.

Even in my pain and discomfort, I had the sense that Ampligen and my immune system were finally starting to turn the tide, and kicking some ass!  That what I was feeling was like what one G.I. in Afghanistan said after too many years of losses and bad battles, and they finally mounted a drive into the heart of Taliban territory.  After seeing four of his buddies blown up in roadside bombs, he and his squadron were finally given the green light to go after the murderers hidden in homes. He turned to the news camera with his night-vision equipped XM110 semi-automatic and said "we're not going to take this shit anymore. Time for victory. Say hello to my little friend."

I think the Ampligen was helping my defenses expose one of the invader's long-held comfort zones in my body- my stomach, and were going after them.

My gut was confirming  what I had read recently, that researchers documented in some pretty well publicized reports in 2007; that while various viruses have been shown to trigger M.E./CFS, (including Epstein–Barr virus, Chlamydia pneumoniae, parvovirus B19, Coxiella burnetii, Borna disease virus, varicella zoster virus, cytomegalovirus, and human herpesvirus type 6 HHV-6), that the most common of all was enteroviruses -- viral microorganisms that reside in the digestive tract. These well documented reports, news stories, and peer-review Journal articles showed how almost all of us who suffer from this disease, have invaders in our stomachs. That the Ampligen was kicking up some trouble there in my body only served to confirm it. And apart from the pain, that actually made me kind of happy.

How Ampligen does this is still sort of a mystery to me. As an "experimental drug" you can't just go to the PDR or and look up the "mode of action" or "side-effects" that you can with an FDA approved drug. But there is some data out there, which I continue to collect and post as links on the left column of my blog The New Ampligen Diaries. Feel free to check them out. 

Today, all is quiet on the western front.  The turbulence in my stomach has subsided, and thanks to a little help from Pepto Bismol, I've been to the bathroom and had victory. OK, I can't resist. Guess I have to end with the Robert Duvall line here. "I love the smell of napalm in the morning. It feels like...victory!"

Wednesday, March 3, 2010

Even a 1% Change Makes a Difference

Treatment #11

I made three very small changes in my protocol today, and although I really can't determine scientifically their effect, experientially I can say that while all three  were very minor, percentage-wise, collectively they added up to a big difference in how I felt. As usual, to me it is the little things that seem to add up, either positively or negatively -  to how I feel overall. It didn't used to be that way, but as a person with a mysterious virus roaming around his body, and an immune system working it's little ass off trying to fight it, sometimes just a 1% change in something I do, or don't do, makes a difference.

There is a hilarious line from the award-winning TV show in the USA "Dr. House" where the irascible genious Dr. Gregory House is trying to make this very point. One of his assistant Doctors is arguing that even though the test result is off slightly, it is still "in range."

Dr. Foreman says: "It's off by one percentage point. Within range. It's normal." 
Dr. House replies: "If her DNA was off by one percentage point, she'd be a dolphin!"

So with that in mind, I share these seemingly insignificant, tiny changes with you.

A Little Change in my Headgame

This could be my theme for the week, because how I think about me and my circumstance, actually does affect how my circumstance affects me, and my body.  Unlike last week, where I simply arrived at the clinic and was so surprised by some of the negative circumstances I encountered, today I spent time getting my "headgame" together before entering - to try to avoid the surprises.  What I mean by that is I proactively calmed myself, did some deep breathing, and even envisioned how I would react if the nurse missed the vein.

It's been documented that because our immune systems are on overdrive, and we have lived with so much pain for so long, our brains and emotions sometimes "over-react" to stimuli. I tell my wife that sometimes just the rattling of grocery bags in the kitchen sounds in my head like she is banging trashcan lids together one inch from my ears. So unlike last week, today I actually did a little "role playing" in the car ahead of time, and said to myself "OK, if she misses the vein, no big deal. It's not that painful. She'll find it the second try. No need to flinch." 

My goal was to try to prevent the release of "bad" brain chemicals by limiting the stress and anger that comes through the natural fight/flight mechanism, that for us is often too sensitive, and is too quickly triggered. I mean, if some thug is about to attack my wife, I WANT these chemicals coursing through my body. But they are overkill when all you want is a tiny needle and an I.V. drip to get going.

It turned out my pre-game prep was wise, because it turned out Gwen had to stick me twice to find a good vein. But because I had already anticipated the reaction, I actually was pretty calm about it, and hardly reacted at all. I think I might have said, "whoops, that missed," because you can usually feel it when the needle pokes out the back of the vein,or misses completely. Gwen actually thanked me for "not stressing her out," so we both were much better for it today. The last thing you need is to have the person with a needle in their hands hovering over your vein, too stressed out.

But more importantly, I learned something I am going to expand on and develop further as the weeks ensue - that part of my healing can actually come from the environment I establish myself, for myself. I don't mean anything goofy like mind over matter or Christian Science, where we deny real symptoms and pains. But i learned that sometimes anyway, if I can choose to avoid stress, I can give my body a break by not flushing it with those stressor chemicals, and hormones  that ensue.

A Little Change in the Infusion Rate

The second thing I did differently today was to slow down the drip slightly. Thanks to a friend who had a similar therapy a few years ago, she called my wife to recommend that because my body was much like hers, with very low body-fat percentage, I might benefit by a little slower infusion. Her doctors told her that "skinny" people's bodies just can't absorb or metabolize that much drug infused that fast, as well as more portly folks. There was a study apparently done on chemo-therapy patients that showed just changing the rate by 10% could make a difference. So I asked Gwen if it was permitted, and she said, "sure!" So instead of taking 30 minutes for the 2 bottles to infuse, we took 40 minutes.

A Little Change in my Treatment Mix

The last thing I did differently today was to add some magnesium to my saline after the Ampligen. I had read from numerous other doctors that magnesium could help with both the muscle aches and flu-like symptoms that were the natural side effect to our immune-systems' boost that ampligen provoked, and my Doctor gave me the green light to try it. So at the end of the Ampligen, Gwen injected some small amount of magnesium into my saline bag, mixed it up, and let 'her rip.

A Little Change in the Results

This was the easiest infusion day I've had in weeks. I had hardly any muscle aches whatsoever, and the flu-like symptoms came as usual, a few hours later,  but they were much more tolerable. My appetite, which is a good indicator of how I feel, returned. And amazingly, for the first time since being on this protocol, I actually wanted to watch TV with my wife on the day of the infusion. Usually, the sounds and lights of the TV shows were too much for me, but for two full hours we watched repeats of this show "Biggest Loser" with many laughs and tears. It turns out that the people on that show are some of the bravest, winners you'd ever want to meet!

All of these were small changes, and in many ways, hardly worth the time to mention. But for those of us fighting this disease, even 1% changes can make the difference between feeling like a human, or a dolphin. Seriously.