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.

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