Most people with chronic conditions like Chronic Fatigue Syndrome (I will use CFS as all inclusive for fatiguing illness), Fibromyalgiia , Post Lyme etc. try many different things to get well. I certainly did. For 37 years I have been trying to figure out how to recover 100% of my health. I have reached a place where most of the time I feel pretty good. Not necessarily great but certainly highly functional. When people learn that I was often very sick all the while I was building two software companies (ACT! and SalesLogix) they are shocked. I learned how to be functional in spite of how I felt. I remember a several week intense effort to raise money for SalesLogix where I was a basket case. But somehow, I had learned how to separate how I felt with what I needed to do. Often I would say, "how I feel is not me. How I want to be is me." I learned to play the role of health. Only those closest to me knew I was sick.
That is the way it is with fatiguing illnesses. Many people just learn to function anyway. Others are simply too sick and they cannot do it. But I have never talked with anyone who wanted to be the way they were. Most were searching. Their relatives and friends often would pass judgment on them. "They are just lazy!" I recently played golf with a VA Doctor who openly talked of his total disdain for Iraq soldiers "who were faking their illnesses (PTSD)". I really wanted to punch him!! Almost did. When you feel really bad all the time, there is nothing else that you want except to get well.
I believe that time will prove that there is a single underlying dysfunction with most fatiguing illnesses that if corrected would cause virtually all the symptoms to disappear or at least bring a cohesive understanding on how to deal with those symptoms.
I have said for many years that the main symptom of a CFS patient is they have seen MANY doctors. Usually with no, to little help. Mainstream and alternative docs basically have few answers. There are nutritional supplements and some Rx meds that certainly can help. I was helped a lot by a regimen of many supplements and a few meds, detox and exercise. But none of these really fully the underlying problem.
Think of the underlying problem like a smoldering fire, The systemic symptoms are no more than brush fires that are continually kept alive by the real fire. Doctors tend to focus on the brush fires. They are not looking for an underlying basic problem. Doctors don't have time to step back and look at the entire CLUSTER of symptoms always found with CFS, and ask what could be causing this wide ranging systemic illness? Why do all these people have the same symptoms?
Well there is one doctor who for 14 years has searched and found some real answers. I don't say that lightly. And I have only recently begun to say it after knowing him and his work for 4 years. And hope to help him prove more of this by funding a needed double blind, placebo controlled clinical study. I hope it will prove conclusively that this entire cluster of symptoms is caused by a single underlying dysfunction. Sounds simple! It is, but it actually isn't.
The fire that is lighting fires all over the body is caused by a very complex cascade of dysfunctions resulting in one basic problem. It is confounded in that only about 25% of the population have a genotype that will be affected. And even that is not simple. There is one basic genotype with about 12 subtypes. Those 12 make up a spectrum that determines just how badly you will be sick, And getting sick depends on how much exposure you have to a very specific type of toxin made by a number of organisms. The most common is mold. The kind of mold you find in homes and building with water damage. A dysfunctional immune response to mold toxin is the most common cause of fatiguing illness.
Four years ago, when I first went to see Dr. Ritchie Shoemaker MD, there was a news team in his office. They were there doing a story trying to answer the question, "Why are people coming from all over the world, to see a Family Practice MD in Pokomoke Maryland?" People were learning that he was discovering the cause of the fire. He had not learned everything about it but he was closing in on it. And he was able to help people partially with what he already knew.
When I recently saw Dr. Shoemaker in late May, I knew he had made tremendous progress, but I was not prepared for what he said to me. "After 14 years of chasing every rabbit trail, and learning many things to help people, I have finally started to use a word I never really expected to use...CURE".
Now you would have to know Shoemaker to understand how significant a statement that is. He is a "by the book" doc, with a healthy skepticism. He also suffers from this dysfunction. In fact, he has the exact genotype as I do which puts us in the worst 3% on the spectrum of biotoxin illness. It also means he and I are related! More in the next post.
