CISRA’s Synergy Health Newsletter

Issue 2. A Case History of FMS/CFIDS/MCS and the Roles of Guaifenesin, a Low Carbohydrate Diet and Environmental Medicine in Recovery (1998)

by J.C. Waterhouse, Ph.D.

Part I. Development of Illness and Struggles to Get Well

This is an account of my ongoing recovery process from FMS/CFIDS/MCS after a 13 year illness, which included a period of 9 years in which I was almost entirely bedridden. In particular, I include details about my experience of the guaifenesin reversal process and my food sensitivities, as well as experiences and ideas that suggest how they may interrelate. Of course, this is an anecdotal account and is not intended as proof of the effectiveness of the treatments discussed, but only as an aid to others, showing what may be possible based on my experience. Further evidence for the effectiveness of the treatments discussed is available and one may contact the sources mentioned as well as others to obtain that evidence. More research is certainly needed, and I hope this account will help to stimulate that research as well.

With the complexity of this illness and the numbers of treatments that I discuss, some might wonder how much confidence can be placed in my observations. For this reason, I will make a few notes about my background and methods. I have always had a scientific outlook on life and I obtained a Bachelors degree in mostly premedical Biology. My Ph.D. dissertation and other research were involved with studying complex ecological systems using computer simulation models, multivariate statistical methods and complex conceptual models using a general systems approach. At one point when I became very ill, a doctor suggested I keep a record of what I ate, and my symptoms. At such a low point, when I had so little control or understanding of my illness, I welcomed this as an opportunity to start trying to make sense of what was happening to me. Over the years I developed this practice further, usually only taking 10 minutes a day, and writing down any observations that I thought might have any significance. Eventually I began using a chart system with numbers to more easily track symptom patterns. When I had new clues or theories, I would test them by looking for patterns. For years, I had little success figuring out the cause and effect relationships. Gradually, this situation has improved. Now I find that most of the time I can explain the patterns of symptoms. Many things I have tried had no effect or were ambiguous and I did not include them. Those treatments that I emphasize had undeniable and repeatable effects. I am well aware of the problem of spurious correlations and placebo effects, and thus I stopped and started most treatments several times in a relatively controlled manner so that confounding variables would be minimized and I could be more certain of their effects. On very rare occasions I have had experiences where I was depressed or a little obsessive about symptoms, so I am aware of that problem and found it to be minimal most of the time. The vast majority of the time I was bedridden I spent listening to books on tape or watching T.V., because I found these activities were best able to keep my mind off being ill and keep my spirits up. Over the years, I only gave in to the need to rest after innumerable attempts to push past my symptoms had led to repeated relapses and continual worsening. Finally, I should note that in the studies that I have seen, patients with severe and long-standing illness were found to be unlikely to recover to a significant extent. I believe my marked improvement after such a long time of severe illness provide evidence that the treatments that have worked for me may well be treating the underlying causes of the illness.

Early Signs of Fibromyalgia (FMS) and Multiple Chemical Sensitivities (MCS)

Although I was a basically healthy child and rarely thought about illness, in retrospect, I can identify a few early signs. I did not have the conventional growing pains in the knees or hips that some report as early symptoms of fibromyalgia syndrome. However, I did have a tendency to get a cramp in my foot, usually occurring when I kneeled and extended my toes underneath me, or when I tried to point my toes. I also was bothered by pains in my hips when I went camping and had to lie on the hard ground. I would not have associated these pains with FMS if I did not later find tender areas and guaifenesin reversal pains clearly associated with these areas (see below). Looking back, I also realize that my preference for gymnastics classes as a child was probably related to having a tendency to muscle tension and stiffness. I was not very limber, strong or in any way good at gymnastics, but I still took the classes and enjoyed them, because the stretching made me feel better. I believe these signs support the hypothesis that the fibromyalgia process was occurring very early and thus would precede any viral illness and most significant stressors hypothesized to cause the illness (although these stressors could have been involved in triggering an exacerbation later).

My tendency to allergy and immune sensitivity was relatively mild. My only known reaction was to White King soap. In high school, I was sometimes bothered by the air pollution, which was very severe where I lived. I suspect I may have had some mild food sensitivities and hypoglycemia. I believe this was indicated by my tendency to be a few pounds heavier than average and my preference for foods like pancakes and bread, reflecting cravings for wheat and carbohydrates. When I started puberty, menstrual cramps and associated nausea were quite severe at times. Occasionally, I also felt dizzy before or during my menstrual period. Also, several times I fainted or felt close to fainting usually when standing in the sun, during bad menstrual cramps, or when ill with a virus. Psychologically, I was a somewhat sensitive child, though I always made friends easily and had a very supportive, loving environment and happy childhood. I mention some of these details because of their relevance to a number of theories sometimes proposed to explain CFIDS, FMS, and MCS.

I was very active in high school with everything from school government, a part time job, various clubs, besides being one of my school’s valedictorians. For college, I went to live on campus and I studied premedical Biological Sciences at U.C. Irvine. I had my first exposure to alcohol that year and found that I did not tolerate it very well. It did not take much for me to feel drunk, and I found that I had diarrhea the next day and would feel quite spacey. I also found I was more easily affected by lack of sleep than other students. I went on birth control pills in my junior year and had a few antibiotic-treated bladder infections which became less frequent when I went off the pill about a year later. I also began to get bad headaches that would last for about 3 days. I had no idea at the time what was causing them. However, they were not very frequent, and so I mostly ignored them. I did notice some sensitivity to chemical fumes in the labs I worked in. The fumes affected my concentration and during several weeks seemed to prevent me from getting over a bad cold. One year I lived in a moldy apartment and would find myself itching during the night and raising welts. But none of these things raised more than a fairly minor notice. In fact, except for the bladder infections, I never consulted a doctor about the other symptoms or took any supplements. I enjoyed exercise and backpacking trips and was in pretty good physical condition. I finally graduated and went to Tennessee to study for my Ph.D.

In retrospect, I can see that I had signs of increasing fibromyalgia and environmental sensitivities, but was clearly still in the relatively healthy, but symptomatic range. A number of environmental factors seemed to be contributing to the developing symptoms. However, I was not a conventionally recognized allergy patient.

The Recognition of CFIDS After Stressful Triggering Events

In graduate school, the above symptoms continued as before, until I went through a period of severe stress that lasted, at its worst, for a week. During that week the stress was so severe that I had little appetite and I felt nauseous by the end of the week. Stress had never affected my appetite like that before, and it seems likely that the tension of my whole body during that week was producing a large amount of tension and muscle contraction in my abdominal region. The stress continued at a lower level for several months, with periods of poor sleep. Then the stress level declined, and I had what seemed like a normal cold over Christmas vacation. I mostly recovered from the cold, then had a recurrence, and this time, I felt especially drained and lethargic. The cold symptoms improved over a few weeks, but I found I needed caffeine to keep going, unlike before. My menstrual cramps worsened and I began having more premenstrual cramping and irritable bowel syndrome. I would have periods of extreme lethargy, cognitive problems and mild depression. I began trying to get medical help, but was disappointed by the inadequate response. It was suggested that I speak to a psychiatrist, but he did not think my health problems were due to a psychiatric illness. A gastroenterologist was also suggested, but I received no relief. I kept pushing on with my graduate work, until I began to have stomach flus, sometimes lasting as long as two months. I just barely managed to complete my Ph.D. and then teach Statistics for two quarters. Utterly exhausted, I had to spend the following summer in bed. I still was unable to find any significant medical help. By fall, I managed to recover just enough to begin a postdoctoral research fellowship, but by the end of the year, I finally could not go on. At that time my muscles were still fairly strong and I was not deconditioned; I did go on walks and even hikes sometimes, between bouts of stomach flu. But as medical tests (secretory Ig A) would later show, my mucosal immune system was clearly depleted. Soon after these events the media began reporting about chronic fatigue syndrome, later called by some, chronic fatigue and immune dysfunction syndrome (CFIDS), and it began to seem like I might fit into this category of illness.

Disability and Years of “Trying Everything” to Get Well

I continued to be disabled for the next 8 years, having to spend about 95-99 % of my time in bed. I tried many treatments, but continued to be very ill and to lose weight until 1989 when I weighed only 99 pounds (my height is 5’10”). I ate as much as my digestive tract could handle and tried desperately to regain the weight, but to no avail. I was still living in Tennessee and was seeing a physician who specialized in environmental medicine. I had extensive delayed sensitivities and he used IgG RAST blood tests to try to find foods that I could eat. Repeated testing showed that I quickly became sensitized to anything I ate, as I tried numerous different rotation diets. Finally, I was able to reduce my reactions sufficiently, by eating only white rice and chicken breasts, so that I was gradually able to return to my normal weight. After 6 months of this diet, I found I did best if I occasionally substituted another carbohydrate for the rice for 10 days, so I did not become too sensitive to the rice. Despite this improvement, I still I had the 2-4 month stomach flus about twice a year (Note: for more, see Issue 7), and I often found that even saying three sentences in a row or taking a shower would exhaust me. Occasionally, a medication I tried would help a little. Taking 10 mg sinequan at night helped improve my sleep. (Later, I found sinequan elixir preferable when a lower dose of 1-4 mg was needed). Diflucan for yeast helped my bladder, so that I no longer automatically had to get up during the night to urinate. Low dose sublingual interferon reduced my achiness a little and kept me from getting colds at one point. But after a while, it was no longer helpful. Lupron helped my presumed endometriosis and my irritable bowel syndrome a little. I had moved back to California in 1990 and went to Dr. Jay Goldstein for several years, but found only minor help from the many medications he uses in his approach to CFIDS. At one point, Dr. Goldstein did a tender point assessment and determined that I could be classified as having fibromyalgia, as well as CFIDS.

I began to make more substantial progress when I started seeing Dr. Michael Rosenbaum (co-author with Murray Susser, M.D. of Solving the Puzzle of Chronic Fatigue Syndrome) in 1995. First, we found a Pseudomonas infection through Great Smokies Diagnostic Lab’s stool testing (800/522-4762). An antibiotic they recommended seemed to help my irritable bowel syndrome a little and I felt my ears were clearer and my pressure headache was decreased.

Then we began testing and treatment for immune sensitivities using serial dilution endpoint titration (a type of skin testing used by AAEM-trained physicians, for information, call the American Academy of Environmental Medicine, 316-684-5500). I found it helpful to include in my sublingual treatment doses even those items which were non reactive at the most concentrated dilution tested, if they were foods I ate frequently (I think this was necessary because my gastrointestinal sensitivity was extreme). My irritable bowel syndrome symptoms improved with this testing and treatment. Further evidence was my improved resistance to infections, since sores in my mouth could heal without the hydrogen peroxide treatment that was necessary before. And, above all, I no longer had the interminable stomach flus. Later, I seemed to benefit a little from a month-long treatment regime using two antibiotics for previously-undetected amoebic parasites (the combination of antibiotics was needed to kill the parasite in all its forms and locations in the body). The chronic infection was found through the more sensitive saliva test for Entamoeba histolytica antibodies (Diagnos-Techs Lab, 800-87-TESTS). Other testing (Balco Lab, 415/697-6708) also revealed low red blood cell levels of magnesium and zinc, despite the fact that I was taking supplements already. The deficiencies were remedied by taking magnesium glycinate (KAL brand is less expensive) and zinc citrate at separate meals from each other and separate from calcium. I was so depleted of magnesium that I needed to take 1200 mg per day for several months until my gastrointestinal tract no longer absorbed it all and it began to produce diarrhea. Before, I had been taking a type of magnesium that is not as well-absorbed (e.g. magnesium oxide) and I could not take enough to remedy the deficiency without causing diarrhea. Later, the ELISA/ACT test (Serammune Physician’s Lab 800-553-5472) for all 3 types of delayed or “hidden” immune sensitivities (see any immunology textbook) identified a few more problem foods. This test, and a saliva test for gluten sensitivity (Diagnos-Techs Lab, see above; also, note you must be eating gluten at the time for test to be valid), also eventually helped me to arrive at a diet that minimized food and chemical reactions. Besides the very important decline in stomach flus, I felt a little better in general, and was able to increase my activity from about an average of 1-5% of very mild activity per day to about 10 -15%.

Part II. The Guaifenesin Reversal Process

In March of 1996 I began guaifenesin treatment for fibromyalgia with Dr. R. Paul St. Amand, an Assistant Clinical Professor of Endocrinology at Harbor-UCLA (for more information, see http://guaidoc.com). In his view, CFIDS is just fibromyalgia with a lower level of pain sensitivity. His theory is that both illnesses are due to an inability of the kidney to adequately excrete phosphate. This leads to excess phosphate, accompanied by calcium, being stored within cells. This also leads to a deficit in ATP, the primary energy molecule of the body. Guaifenesin and other uricosuric drugs are able to increase phosphate excretion (when not blocked by salicylates), and thus have led to the effective reversal of the disease in thousands of Dr. St. Amand’s patients over more than 30 years. Now many physicians around the country are using this approach and an Internet survey of 100 patients showed a response rate of 91% (see Nancy Medeiros’ web site www.csusm.edu/public/guests/fibromt.htm for more information).

I was initially skeptical about guaifenesin, after so many treatments that had failed in the past. During the first 3 weeks of treatment, I took only 300 mg twice a day and noticed little change, except perhaps a slight improvement in mood (possibly related to a possible effect of increasing serotonin). When I increased the dose to 600 mg twice a day, there were a number of changes that occurred which began to convince me that the treatment was working.

First, I began having diarrhea to the point where I had to take 4 lomotil per day to keep it in check. I had never needed that much before. This was quite unlike an ordinary exacerbation of my irritable bowel syndrome due to food reactions, or an infection or stress. Normally, with this much diarrhea, I would have felt very ill and been in bed all day. However, I actually felt a little better than usual, as long as I took enough anti-diarrhea medication. After about two weeks, the diarrhea subsided and other areas became achy from the guaifenesin reversal process. Then I went through another bowel “cycle”, and this time I only needed 1 or 2 lomotil a day for another 2 weeks to keep it in check. The third and fourth bowel “cycles” were even milder. At one point, I increased to 3 tablets of guaifenesin (1800 mg/day). This initiated an increase in diarrhea, as the kidneys presumably increased their excretion of excess phosphate and stimulated the removal of the intracellular calcium and phosphate from gut cells. After several months on guaifenesin, I began occasionally experiencing something I had not felt in years. I began to hear the sounds of my “stomach growling,” and have the feeling of an easing of the cramping so that my bowels felt like they were actually functioning in a more normal way, with peristaltic movement, rather than alternation between cramped constipation and diarrhea. Now, when I increase guaifenesin, I usually do not have diarrhea, presumably because the reversal process has proceeded beyond that phase now. The guaifenesin has made me much more functional and now I seem to tolerate dietary fat more easily. As I continue to take the guaifenesin, if past experience is an accurate guide, then my bowels will continue to become less “irritable” until I recover completely. I have speculated that the week of severe stress with lack of appetite and nausea (see above, on triggering of the illness) may have been one of the triggering factors depleting cellular ATP and initiating or intensifying a vicious cycle of calcium and phosphate accumulation in gut cells, poor digestive function, food sensitivities and decreasing mucosal immunity.

Another one of the more convincing experiences occurred, when during the first month on 1200 mg per day, my hips became so sore that I could not lie on my sides at all. Looking at my “maps” of the tender areas identified by Dr. St. Amand in his initial physical exam, I realized that the largest areas were on my hips. I also recalled that the feelings I was having in my hips and legs were a more intense version of the pains I had long before, when camping on the hard ground. The hip soreness had also recurred during some periods of my illness, though not in the previous year. During the guaifenesin reversal process, I periodically experienced further recurrences of the hip pain, but each time it lessened. Dr. St. Amand recorded the decreased area of the hip lesions at my next visit, when he redid the tender area map. As usual, he did the new map without looking at the previous one, and showed remarkable consistency with regard to the locations of the tender area lesions. It is interesting to note that both my parents, who have milder fibromyalgia, also had large hip lesions that have decreased with guaifenesin treatment. This suggests an inherited pattern of accumulation, since two other unrelated patients showed me their maps, and they had minimal hip lesions.

Some other support for Dr. St. Amand’s theory appeared when I had a recurrence of a type of headache pain that I felt extend into my upper teeth. I had not had teeth pain like that for many years. Dr. St. Amand notes this pattern of the temporary revival of old pains as the calcium and phosphate are removed from the cells. The teeth pain clearly correlated with the disappearance of the lesions in my neck. Since the neck lesions have almost entirely disappeared, headaches are much reduced in frequency and severity. Headaches are also less apparent as part of my occasional food sensitivity reactions. This suggests that the fibromyalgia pattern of lesions may determine the type of symptoms one suffers due to an immune sensitivity reaction. The wide variation in neurological symptoms in response to chemicals might reflect variation in the locations of the lesions (areas of cells with high calcium and phosphate and low ATP) in the brain.

Recently, I experienced a few days of elbow pain and tingly/burning/raw sensations of the skin near the elbow (presumably from the effect on the nerve). At the same time, I noticed more pain and fatigue in my forearms and elbows while typing. Small deposits had been mapped by Dr. St. Amand at my elbow, months before, and I had completely forgotten of their existence until that moment.

At another time, I had pain in a finger for about 24 hours. Each day, the pain moved on to a different finger. I had never had pain there before, though my mother has severe arthritis in her fingers. Apparently, the lesions in my fingers were so minor I could only feel it when it was magnified by the reversal process. From Dr. St. Amand’s experience of the correlation between arthritis and fibromyalgia, it seems likely I will be able to avoid the development of arthritis in my fingers if I continue to take guaifenesin.

As a final blow to any remaining skepticism, I experienced a reversal of the progress I had experienced on guaifenesin, due to exposure to salicylates. After about 8 months on the treatment, I went in for a visit and we discovered that the neck deposits had reappeared and some new areas in the shoulders had also developed. Dr. St. Amand asked me if I was taking anything with salicylates that might be blocking me. I realized that the one thing I had changed was that I had run out of one type of Vitamin C and had switched to one that had bioflavonoids. My friend, who had already had so much success on guaifenesin, had told me she had read that quercitin was a salicylate and so, at first, I had avoided them. But later, since Dr. St. Amand did not have it on his list, I had ignored her warning. When I realized this, I stopped the bioflavonoids, and shortly thereafter I had neck pain and a headache, including the pain in my teeth, symptoms clearly associated for me with the resumption of the guaifenesin reversal process. On several occasions, I even experimented, and was able to stop the reversal process and headache by taking the bioflavonoid-containing Vitamin C, which once again blocked the guaifenesin. Two months later, at my next visit, my headaches were declining again, and my maps showed the neck and back lesions were considerably smaller. So once again I was on my way forward. It appears that pure quercitin is not a problem, but mixed bioflavonoids being a plant extract containing many compounds, does include a significant level of salicylate when taken at levels available in certain supplements.

I now find that I am able to detect some of the lesions myself. There is one below my knee that can easily be seen. The small tender areas that remain on my hips can be detected by a pain sensation when they are pressed and, with some time and practice, I am beginning to feel with my fingers the slightly lumpy, slightly hard or fibrous, swelling of tissue that is the source of the pain and excessive contraction. It is not easy to do, but hopefully someday other doctors or physiotherapists will become as expert at the “mapping” as Dr. St. Amand. Or perhaps someday a lab test will make this procedure less important.

It should be noted that Dr. St. Amand has found these tender area lesions in all CFIDS/FMS/MCS patients he has examined as well as many of their less symptomatic relatives. However, the lesions he “maps” have a very individualistic pattern and may not correspond with the 18 areas that rheumatologists are taught to examine in diagnosing fibromyalgia. In asymptomatic patients he generally does not find lesions, and when he does, it may be presumed they are in a pre fibromyalgia stage, as I was when I was growing up.

The primary symptoms I have remaining can be associated with the most important remaining lesions, which seem to be deep in my pelvic region and in my brain. The ‘”brain fog” symptoms may also be a result of the imbalance in NMDA vs. GABA in the brain, reported by many researchers, and this may be due to elevated calcium and phosphate and low ATP in brain cells. The brain and pelvic symptoms also seem to act together to produce a disrupted sleep, deficient in delta wave (deep) sleep, which also might account for some symptoms, including increased stress and possibly immune dysregulation. I believe that the calcium and phosphate in the remaining gastrointestinal and pelvic region lesions may account for my extreme sensitivity to foods for which my sensitivity is very slight based on other measures (i.e. skin or lab tests). For instance, even though my antigliadin antibodies were a little below the level for a borderline reaction, I still found that I was better when gluten was removed from my diet. I speculate that this is because my gastrointestinal system is extremely reactive due to the fibromyalgia lesions. Pressing on certain tender areas in my pelvic region clearly affects my gastrointestinal function and pressing too hard in some areas can increase abdominal cramping and spasms. This type of phenomena is not unusual for those who deal with trigger points, as in myofascial pain syndrome (Fibromyalgia and Chronic Myofascial Pain Syndrome, 1996). Now that I know where the lesions are, I find gentle massage is often helpful. When I am active, I experience a gradual rise in tension in these pelvic area muscles (hips, pelvic floor, psoas, also buttocks and inguinal tendon areas), until the cramping gets to the point where blood flow to my brain and extremities appears to be inadequate. It is at these times when I am most affected by fatigue, dizziness and spaciness, as well as chilled feet and hands. After resting and gentle massage or acupressure, the cramping gradually decreases and the other symptoms improve markedly. It seems that the continual cramping areas of the lesions generate secondary areas of increased tension, until most of the muscles in the area are excessively contracting. At present, it is this phenomena that most limits my activity. And it was not until I was mapped by Dr. St. Amand that I realized this was such a large source of my symptoms. Naturally, patients with other patterns of lesions would experience their symptoms and the reversal process in different ways, depending on lesion location.

Part III. Low Carbohydrate Diet and Summing Up

I have concentrated here on describing my experience with guaifenesin, but I should stress that a low carbohydrate diet (for hypoglycemia or pseudohypoglycemia) has also been essential in my recovery. A few months after I started guaifenesin, I eliminated the large amounts of rice I was consuming and I began to follow Dr. St. Amand’s other recommendations for the diet. Within a short time, I experienced a significant decrease in fatigue, anxiety, night sweats and brain fog. And I did not even think at first that I fit Dr. St. Amand’s description of a true hypoglycemic, although I did tend to crave carbohydrates. Later, I realized, however, that the limitations on my diet due to immune sensitivities meant that I had to deviate a little from Dr. St. Amand’s list of foods that I must eliminate from my diet for hypoglycemia. Since white rice was far and away my best tolerated carbohydrate in terms of immune sensitivities, I do use quite small portions of rice at my meals in place of the slice of bread or piece of fruit he includes (I use psilium, vegetables, raw sunflower seeds or Allergy Research Group’s Cellulose powder, available from NEEDS, 800-634-1380, to provide fiber). In my case, in the long run, this has worked best for me. But one must keep in mind that the amount of rice permitted may only be ¼ to ½ cup cooked and there is a tendency to allow the amount to creep up, without one noticing. So one must be vigilant. For the worst hypoglycemics though, this might not work, and some might need to just eliminate grain altogether, if they can’t tolerate the ones he permits, at least for a few months. Many people are able to increase their carbohydrate levels after they have been on the low carbohydrate diet for a while and still feel as well. Some find chromium supplementation may help their glucose tolerance. I have recently heard from a nutrition expert that for some, 1000 mcg (1 mg) of chromium polynicotinate may be necessary and some believe extra vanadium, another trace element also helps. I had previously tried lower levels of chromium picolinate and experienced no effect, and plan to try the higher levels of the chromemate to see if it allows me to increase my carbohydrate intake further and still feel as well.

Some other things that have helped a little over the years include chiropractic adjustments, relaxation methods, gentle abdominal massage or acupressure, naprosyn (for menstrual cramps), klonopin, and the antispasmodic, irritable bowel syndrome medication, levsin (generic is hyoscyamine sulfate). The amino acid, L-taurine seems to have helped some with pain sensitivity and sense of well-being. In 1993, Spectra Cell Lab’s Essential Metabolic Analysis (800/227-5227) showed I was deficient in several B vitamins, and so I added a B complex to my multivitamin. Their test also showed a fructose intolerance, and I find avoidance of fructose-containing foods, like fruit, beans and asparagus, essential to avoid hypoglycemic reactions. I also have found that there are times (especially when I am on higher levels of guaifenesin), that I tend to awaken too early, and get sleepy earlier. By going to bed at 8 or 9 p.m., I am able to experience a more refreshing 8 hour sleep, even if I awaken at 4:30 a.m. Apparently my sleep cycle has become “advanced” as evidenced by the drop in body temperature I experience early in the evening. The early bedtime seems to maximize the needed period of deep sleep, when growth hormone production is most significant. Resting for the last couple of hours before sleep reduces muscle tension and overall level of stimulation and helps too; and listening to books on tape (from Braille Institute, Recording for the Blind and Dyslexic, or public libraries, see Issue 2 article) also helps to lull me to sleep when my mind is overactive.

Some have suggested that placebo effects account for guaifenesin’s success, however this seems inconceivable to me, considering my experience with guaifenesin. I have literally tried dozens of treatments and clearly if the placebo effect were going to work it would have done so long ago. There have been a few times when I thought a past treatment was helping a little and I would start trying to be more active, only to relapse once again. This is what frequently happens with placebo effects. My experiences with environmental medicine, guaifenesin and the hypoglycemic diet are much different. My activity level had gone from 1-5% to about 15% with Environmental Medicine treatments. I believe that guaifenesin and the hypoglycemic diet were responsible for an additional increase in activity that ranges from 25-55% of a normal person’s activity and a significant decline in symptoms, and this has been maintained fairly consistently for more than a year. When the guaifenesin reversal process intensifies at times, or I experience a food sensitivity reaction, my activity must be more limited (e.g. 25-30% activity level). But as Dr. St. Amand says, based on more than 30 years of experience with the treatment, the good days get better and more frequent as the treatment progresses. Since the reversal process takes approximately 2 months for every year of illness, I am hopeful that another two years will be sufficient for an almost complete recovery, as guaifenesin, in effect, turns back the fibromyalgia clock. And I am very hopeful that others will find similar success. However, I would urge all my fellow sufferers, that regardless of the success you have with whatever treatment you try next, keep trying; I feel confident that someday you will find something to help you, as I did after being so ill for so many years.

Editorial Note (October, 1997): Dr. St. Amand does not endorse any of the treatments mentioned other than the low carbohydrate diet and guaifenesin. He has reviewed the descriptions of these two aspects of his approach and finds them accurate).

References

Genter, P. and Ipp, E., 1994, Metabolism, Vol. 43, No. 1:98-103.

Rosenbaum, Michael, M.D. and Murray Susser, M.D., Solving the Puzzle of Chronic Fatigue Syndrome, 1992, Life Sciences Press, Tacoma, WA.

St. Amand, R. Paul, and Potter, Claudia, 1997, The use of uricosuric agents in fibromyalgia: theory, practice, and a rebuttal to the Oregon study of guaifenesin treatment. Clin. Bull. of Myofascial Therapy, Vol. 2(4):5-17.

Starlanyl, Devin, M.D. and M. E. Copeland, M.S., M.A. 1996. Fibromyalgia and Chronic Myofascial Pain Syndrome: A Survival Manual, New Harbinger Publications, Oakland, CA.

Editorial Note (August 12, 2006): For an update on my views on treatment of many chronic illnesses, see the transcript of a talk I gave in 2005. I give an overview of what has helped me most, with an emphasis on a new approach, called the Marshall Protocol (MP). For many, the MP seems to be able to reverse the immune and hormonal dysregulation that may account for a wide variety of symptoms, including sleep disorders, susceptibility to chronic infections and allergies/sensitivities. In the long run, I found that although I was helped by guaifenesin, at a certain point I stopped progressing and for further progress needed the Marshall Protocol, which is both an anti bacterial and immunomodulatory approach (http://AutoimmunityResearch.org), targeting hard-to-detect cell wall deficient and biofilm bacteria.

Disclaimer: All articles provided on the SynergyHN website are for information only and are not intended as medical advice. An effort is made to be accurate, however readers are advised to verify what is presented here and check with their own doctors. No guarantee of accuracy is expressed or implied. Neither CISRA nor the author receives any funding or income from any organization or manufacturer connected with the topics discussed.

Written by synergyhn

October 30, 1998 at 4:32 am

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