If you read the home page you know that at one time
I was so sick that I
literally had no quality of life. My main diagnosis was "Chronic Fatigue Syndrome" which evolved into Chronic Fatigue with Fibromyalgia. In fact, as I learned later, this disease was actually called "Myalgic Encephalomyelitis" for a long time before the CDC adjusted the criterion and the name of the disease. They created the "garbage basket" term Chronic Fatigue Syndrome and lumped in a number of disorders that basically result in chronic fatigue. This may not seem important but in fact it is when you are trying to find answers. When I finally learned of Myalgic Encephalomyelitis, I realized this was truly what I had. To me the latter name is more descriptive of the illness I had since I could clearly see the effects on my muscles and brain (atrophy and rapid ageing!!). It also appeared clear to me that viral infection was probably the major cause of the syndrome.
The attendant diseases and disorders that accompanied Chronic Fatigue Syndrome/Myalgic Encephlalomyelitis in my case were:
- occipital neuritis
- episodes of ataxia and other weird neurological phenomena
- peripheral neuropathy
- muscle weakness and atrophy
- celiac disease
- severe food allergies and intolerance or "immune dysregulation"
(i.e. allergic to "everything")
- multiple chemical sensitivity
- severe PMS, ovarian dysfunction and cysts, early menopause
- chronic infections such as sinus, GI infections, and a jaw infection
- migraine headaches
- anemia that was lifelong, and responded poorly to supplemental iron if at all
- asperger's like syndrome in which I found communication and social situations extremely difficult; though on the other hand, it gave me some attributes that helped me solve many problems
I did not have all of the above disorders all at the same time, but at any given time I had several. Initially, my body was able to "recover," though incompletely from the difficult phase of dramatic health decline at age 19, and I returned to school and work. But there came a time years later when my body simply could not adapt and the pathogens and dysfunctions began to take hold at deeper and deeper levels.
I will describe how the illness evolved in my case over the course of my youth up to the present.
As a kid I did not have great health, but I managed ok and none of my minor problems seemed of any real concern from a health or medical standpoint. Probably the most notable things that showed while I was very young were very poor dental health, frequent abscesses of the teeth, and a degree of akwardness and isolation socially that was not severe but did take some work to overcome.
While in high school, some problems started to appear that I could not ignore. I began to have severe blood-sugar regulation problems, mood swings, PMS, ADD-type symptoms and pronounced fatigue. I had been an athlete but had to give it up in the middle of my high school years due to the fatigue. Most of these problems were first noticed or greatly worsened after I had had an infection with mononucleois, or, Epstein Barr Virus.
At age 19, while in college, I had a major health breakdown. Incidentally this occurred about a year after I was given the MMR vaccine required for college entrance. This dramatic health breakdown started with headaches that lasted for days at times, swollen lymph nodes, a low grade fever, general aches and pains, brain dysfunction and other symptoms. The year was 1988. This happens to be the same year a group of experts studying chronic fatigue syndrome patients devised criterion for what they called Chronic Fatigue Syndrome and which they linked to the Epstein Barr virus. At that time, it was thought that Myalgic Encephalomyelitis and Chronic Fatigue Syndrome were different entities, however, later it became clear that there was no substantial difference between the two.
I had some laboratory and symptom indicators for Lupus but did not qualify for that diagnosis since I did not have others. I had some of the symptoms of Rheumatoid Arthritis, but again, labwork was negative. I was tested for a plethora of pathogens, but all tests were negative. The only tests that were positive, and thus revealed what might be happening were ones for antinuclear antibodies (a sign of autoimmunity) and a newly developed test that showed whether the body was currently making antibodies to the Epstein Barr Virus.
After 5 doctors and a battery of tests, and because I did not fit a known, well-recognized disease pattern (my docs were not up on the new criterion for chronic fatigue syndrome developed that same year!), the doctors said it was "psychosomatic." This was devastating because those from whom I needed support concluded that it must therefore be "all in my head" and their "support" was quickly withdrawn or I was offered "counseling." In fact, this pronouncement of my illness being psychosomatic had a lasting effect on my family and others. The silver lining here is that I did not qualify for a treatment for what was wrong other than counseling or antidepressants, so I was spared the toxicity and harm of conventional approaches, and, I learned a huge lesson.
I knew that the doctors were wrong and that their diagnosis was based on a faulty system which assumes that they have some kind of omniscience and infallibility. Absurd, I thought. I was a student of philosophy at the time so was steeping in theory about how we know what we know and why we believe one theory or fact over another, etc., so this roundabout that I endured in an attempt to get answers about my illness only proved to me the weakness of most human minds and the arrogance of those who are "highly trained professionals!"
I was disgusted by the medical professionals but did not look elsewhere for help or continue the search for a doctor that could really find the problem. I didn't really know there was any other help to be found after the local docs were exhausted.
The fatigue, brain dysfunction/ADD and other problems continued through college and afterward. College is difficult when you have severe concentration problems! I adapted as best I could, always privately wondering how the heck I was going to make it in life when it came time to go to work at a regular job. I coped by scaling back my endeavors and just trying to accept things as they were.
When I began working full-time as a teacher, my fear about how I was going to make it when it came time to work a regular job manifested itself. My problems became much more severe. In particular the physical pain of fibromyalgia set in. Also depression and anxiety. Nonetheless I chose to manage on my own for the most part. I did see doctors but did not ask for help with fatigue since I knew they could do nothing. And I did not want to take drugs for my mental state. My thyroid and other tests were always normal. I did always have anemia which was "impossible" or seemed impossible to correct even with the iron pills (a copper toxicity symptom). And I had a little bit of a high blood pressure problem during those years, a heart murmur, and a few other problems. Otherwise, though, doctors told me I was fine, completely normal. And yet I had so much pain and so many problems. I took over-the-counter medications for pain if it was particularly severe, but otherwise, just carried on. Finally after many years of this, I added some massage therapy to help with the physical pain of the fibromyalgia. I tried chiropractic and some herbal therapies but by and large, nothing really helped much.
When I married and had two children finally the problems became enough worse that they could no longer be ignored. At this point, some abnormalities even showed on lab tests, such as the hypothyroidism. My stress level increased with caring for my children, plus, this was made worse by the fact that the children had some health problems. They had difficulty sleeping well, severe colic, frequent infections, and some behavioral abnormalities that later were diagnosed as "sensory integration disorder" and "probably mild autism." With all this to deal with I could no longer just cope, I had to find answers.
I began to experiment and to research. I started to read every book I could find about "natural health." My research led me to discover the role of diet in our health. I discovered when my first child was an infant that he was sensitive to certain foods if I ate them while he was nursing. Later I discovered that I had gluten sensitivity, and finally, when the kids were just toddlers, that we all had several food allergies we shared in common. We all went on special allergen avoidance diets. If we stayed on the right diets for each of us, the kids' behavior issues and frequent infections and severe colic and other digestive problems would go away, and for the most part so would my fatigue and brain dysfunction. If we ate the offending foods, we would have the problems return.
After another year or two of researching, I discovered that toxin build up and nutritional deficiency were at the root of most of the problems with our immune function, and this was what caused the multiple allergies. I tried to remedy these deficiencies, and our toxicity problems. I supplemented carefully, and we saw great improvements. We cautiously used a gentle, oral form of chelation, and saw tremendous improvements. This included one of my children pulling through kindergarten during the last three months of the year, after being poised to repeat the grade. This child was unable to connect the sounds of the letters with the letters of the alphabet, or learn the names of classmates.
Despite many objective pieces of evidence that what I was doing was on the right track toward answers and improving our health, my family, both close and extended, for the most part thought I was a nut, and just put up with the special diets and interventions. A few of them were medical professionals who were just sure I was far off course, making a big deal out of nothing and probably making problems. It was just too far out for them to understand that anyone could be allergic to that many foods or need such a tightly controlled diet, and, they really claimed not to see the problems that I was seeing. I was aghast at what other people were willing to pass off as 'normal,' especially in a young child who should have vibrant health, not a host of oddities that restrict their health and happiness.
The vigilance required of me was huge....I had to continually adjusted everyone’s diet as the allergies changed. I continued to supplement us, and use the chelation regime carefully, under supervision of a Naturopathic doctor. Yet, our problems never resolved. All I was doing was managing the problems, and seeing the symptom-pictures change, not getting to a state of greater health and vitality for any of us.
Over those years we did many therapies and saw numerous health professionals of all varieties, both conventional and holistic. Many of them helped somewhat, but, with most "treatments," there would be some other problem that would show up, or some way in which we got worse in a different area. Thus it seemed that with the majority of the treatments we tried, even the supplemental nutrients I knew we needed, one thing would get better and something else would get worse. The proverbial, "Two steps forward and one step backward" scenario. Or so it seemed.
The real progress
came through slowly sorting out the causes on my own, since the
professionals seemed not to even see the situation clearly. It became clear that none of the professionals really knew a sure-fire way to fix the root causes even when it seemed that these were identified.
At last, I had to acknowledge that we were still plagued with problems even after years of effort at resolving them. And I had to admit that my life revolved around keeping up with the special diets and supplements and chelation, and that this was not the life I wanted for me or my children. Thus I continued searching for answers.
After about ten years of the above sort of "progress," I came across the work of Dr. Lawrence Wilson, MD. I found his explanations to absolutely fit with everything I had learned by research and by accident. For example, his explanation of why you cannot just put the minerals in that the body needs and expect this to work, made the difficulties we were having make sense. He also explained that you can't just take the toxins out, say, with chelators, and expect this to work either. And he described why this is true. His emphasis on rebuilding the body's vitality so that it can heal on its own made sense. He explained how we can succeed in rebuilding the body, and increasing vitality and how this results in healing. I quit the other therapies I had come to rely on and began to get hair mineral analysis tests done and to follow a Nutritional Balancing program. Although the diet seemed impossibly strict to me at first, I did manage to get myself on it, and I did most of the other recommendations too.
It was evident within a few months that I was making great progress on this program. I could just feel it. In the beginning the progress barely showed on my hair test results, but I knew that things were changing because I began to feel stronger mentally and emotionally, and to just feel calm and in control. After so many years of anxiously searching and wondering if I could or would ever become well, this provided great relief.
I also went through many so-called "healing crises." These are episodes of slightly, or dramatically, in some cases, increased symptoms as the body heals some old infection or pushes out a load of toxins. It seems I had vast numbers of viruses hitchhiking in my body. They would erupt periodically as warts, spots or other manifestations, usually on my skin. I had many, many other varieties of healing crises also including an ongoing string of emotional reactions. Eventually I managed to see the pattern of healing which is: build and strengthen, get to feeling stronger and more energetic and then bam, you get hit with a healing crisis...then the crisis resolves and you begin to feel better again, gradually, until things are going really well, and bam, another healing crisis. And all along your awareness gradually increases and you realize that parts of your life just do not make sense! And so you begin to change your life. It happens naturally. The awareness increases also followed a pattern for me, and generally there would be some sudden realizations, followed by anger, followed by sadness, followed by some emotional purging and finally resolution and a new way of thinking and behaving. So I realized that with nutritional balancing I was not only getting my health back, I was getting my life back. Wow.
Although the process of healing can be sped up or slowed down to some degree by adjusting a person's nutrients, I really wanted to get through these difficulties so I could begin a more normal life. That is just what happened, and after about two and a half years, the bulk of the difficult healing was done, in my case. The most difficult aspects for me were getting off of my adrenal and thyroid hormones which I had taken for many years. The other big hurdle has been to develop the patience to allow the healing to happen rather than to try to push it to happen faster, or add supplements so that I could "function." I literally needed a ton of downtime. In fact I was unable to work for about a year and a half, and I now see how great the reward is for taking that time. At the time, however, it was frightening, as I saw my financial reserves dwindling and was immersed in one healing crisis after another.
I used nutritional balancing for about a year before determining that I wanted to become a practitioner. I knew that with my teaching background and experience of healing my case, that I could help others effectively. The most important thing I have to say to those considering this approach is, "It really works."
More To the Story: A Companion on My Journey
During most of the years that I was trying to solve the mystery of my health problems and those of my children, I had been conversing with my friend Barb, whom I met via the internet. She was doing the same thing as me; trying to heal herself and her two children from immune, allergy and brain function problems, among others. She has been as much a part of this journey as me, in many ways, and has been a critical source of information and support as I have progressed.
Having support when you are trying to heal is very important. My friend and I had only one another for support for a number of years. Our families did not really understand what we were dealing with and could not even see the problems in many cases; they would tell us we were fine or that we were imagining the problems. After all, conventional medicine did not acknowledge many of the problems or have a solution. Often it is extremely difficult for those who do not have serious health problems to understand a person who just can't seem to get well and whose whole life revolves around the effort to get well.
Now, my friend and I can both say we actually have full and satisfying lives. We have both healed to such an extent that we now know complete wellness is possible, not only in our cases but for many others out there who are struggling with seemingly intractable health problems. If you have been given little hope, or offered only drugs or surgery or other undesirable options, please know that there is the option of choosing healing through nutrition, gentle detoxification and lifestyle adjustment. It is not easy, but it is for real, and it is worth it.
I encourage you to find a friend to go on the journey with you. You can cut one another's hair for the test! Also, note that there is a Facebook Group for those following Nutritional Balancing programs--see Dr. Wilson's site for the link.