CISRA’s Synergy Health Newsletter

Issue 1. Innovative Approaches to Fibromyalgia (1997)

by J. C. Waterhouse, Ph.D.

Part I: An Environmental Medicine Approach.

Recent research has shown a close connection between fibromyalgia syndrome, a condition characterized by muscle pain, fatigue and other symptoms, and Multiple Chemical Sensitivity/Environmental Illness. Buchwald et al (1994) noted very similar patterns of symptoms in FMS, CFS and MCS. Jaffe (1996) in the study discussed below, shows a high frequency of environmental sensitivities in a group of fibromyalgia patients using the ELISA/ACT test. After a discussion of Jaffe’s study results for fibromyalgia, we will explore some ideas on the role of the ELISA/ACT in combination with other methods of testing for food and chemical sensitivities in victims of fibromyalgia and other illnesses.

FIBROMYALGIA SYMPTOMS CUT IN HALF IN CONTROLLED STUDY. Russell Jaffe, MD., Ph.D., presented a controlled study at the American Academy for the Advancement of Science (Feb. 1996) that showed 30-50% reductions in a number of symptoms of fibromyalgia (such as pain, fatigue, stiffness, depression, and irritable bowel syndrome) after 6 months treatment. The treatment program used the ELISA/ACT test, a lymphocyte response cell culture, to determine immune sensitivities to 340 medications, foods, food additives, and environmental chemicals. Dr. Jaffe, an award-winning former NIH senior staff scientist, found that all 32 Fibromyalgia patients studied had numerous hypersensitivities (ranging from 15 to 32), whereas healthy subjects tested in earlier studies generally had 1 or fewer. Patients in both treatment and control groups had support group meetings. In addition, the treatment group was instructed on how to avoid the items they were sensitive to and were given a specially designed nutrient supplement program to help restore their immune systems. After six months those in the treatment group with primary FMS reported experiencing 50% less pain, 40% less depression, 50% more energy, and 30% less stiffness than at the start of the program. This is compared to members of the control group, who reported an increase in pain, 10% less depression and no significant improvement in stiffness and energy. Over time, Dr. Jaffe has found that patients on this program usually become less hypersensitive to antigens as the body gradually returns to homeostasis. Previous research had shown that without the specially designed nutritional program using extremely pure and bioavailable supplements, patients are generally not able to maintain their initial improvement after tests like this. Instead, there is a tendency for the immune system to start reacting to a new set of foods and substances after the first set is avoided (Jaffe, personal communication).

ADVANTAGES OF ELISA/ACT TEST. The ELISA/ACT is a high sensitivity lymphocyte response assay that allows determination of immunoreactive effects on the lymphocytes, since they are the final common pathway for all late-phase (delayed, hidden) immune sensitivity reactions. The reliability and validity of the ELISA/ACT as been established over a period of 10 years (see Townsend Letter, 1991, #94 and #95). Many sources of error have been removed by very careful methods for taking the blood samples and by patient instructions before blood is drawn. The testing procedure allows the cells to be exposed to antigens in an autologous environment so that conditions for the lymphocytes will closely approximate the conditions in the human body. Recent improvements in methodology allow results to be obtained more rapidly, more accurately, and at less cost. Some physicians are discovering that the test is a useful preliminary to intradermal skin testing and treatment since it can quickly identify the problem antigens. For patients who need help identifying their immediate reactions, it can be combined with an IgE RAST test. My own experiences suggest that even after skin testing, the ELISA/ACT may provide benefits due to its greater ability to detect delayed reactions. I had been tested and treated for cabbage, apples and corn and was no longer showing a reaction on my intradermal skin test. Yet, when I deleted these foods from my diet on the basis of ELISA/ACT results that indicated delayed sensitivities to these foods, I improved even more. Further research must be done, of course, but this may indicate that the test could be useful even when skin testing and treatment has already been done. The ELISA/ACT is currently indicated for many chronic illnesses involving the immune system, including chronic fatigue syndrome, fibromyalgia, migraines, asthma, multiple sclerosis, lupus, and arthritis, to name a few.  In addition, information on a variety of methods for testing and treating food, chemical and inhalant sensitivities may be obtained by contacting the American Academy of Environmental Medicine (7701 East Kellogg, Suite 625, Wichita, KS 67207-1705, 316/684-5500, web site: www.aaem.com). (Editorial note –2008: ELISA/ACT is no longer being used, see Issue 5 for alternative allergy/sensitivity testing methods).

Part II. The Role of Guaifenesin and its Relationship to Environmental Medicine

Up until 6 months ago, I had been disabled by chronic fatigue and immune dysfunction syndrome (CFIDS) for 10 years following a flu-like illness that I contracted while obtaining my Ph.D. Environmental and nutritional medicine helped me a great deal and continue to do so, but it wasn’t until 6 months ago that a dramatic improvement occurred due to a quite different approach. In the following sections we will explore the hypothesis that the approach to fibromyalgia pioneered by Dr. R. Paul St. Amand is actually quite compatible and, in fact, complementary to Environmental Medicine.

A SHORTAGE OF ATP AND THE USE OF GUAIFENESIN. The hallmark of CFIDS is a lack of energy and this is a prominent feature of fibromyalgia and environmental illness as well. ATP is the essential energy molecule of the cell and a number of studies and theories support the view that the fatigue may be caused by a shortage of ATP to maintain cell structure and function. Bengtsson and Hendriksson (1989) reported a 20% decrease in ATP in trapezial lesions in fibromyalgia victims, and this was probably an underestimate (St. Amand, personal communication). Other research documented a decrease in red blood cell ATP. This deficiency in ATP is closely tied to the theory that Dr. St. Amand has developed to explain why uricosuric drugs, including guaifenesin (a weakly uricosuric drug), have resulted in the disappearance of the hard or swollen areas that make up the lesions of fibromyalgia. The development of the treatment originated when Dr. St. Amand observed that a patient on gout medication found that tartar (calcium phosphate in the form of “apatite”) began to chip off in pieces from his teeth. Dr. St. Amand speculated that perhaps the hard areas of swelling in patients who complained of rheumatism (an early name for Fibromyalgia) would respond to gout medication in an analogous way. Over many years, this proved to be the case, as Dr. St. Amand was able to help many people recover completely from fibromyalgia . Briefly, the connection with ATP/energy shortages is postulated to occur as follows (St. Amand and Potter, 1997). A genetic defect at the level of the kidney results in a problem with excreting phosphate, a normal component of the diet. The excess of phosphate ions must be stored somewhere. When stored in cells, extra calcium also must be stored in the cells in order to balance the negatively charged phosphate ions. These excess calcium and phosphate ions lead directly, according to the theory, to a shortage of ATP. In addition, the excess calcium in the cytoplasm may cause continual contraction in affected cells. Thus, this theory accounts for many of the constantly contracted areas of muscles (tender areas) found in fibromyalgia victims. A few years ago, the weakly uricosuric drug, guaifenesin, was found to be even more effective and safer than previously used uricosuric drugs. Like other uricosuric drugs, the effect of guaifenesin in reversing fibromyalgia is blocked by aspirin and other salicylates. Recently, as more products have salicylates (including most sunscreens, cosmetics, lotions, and herbs), the patient must be quite careful. Dr. St. Amand often has to update his list of products to avoid. The ability of these salicylates to block and even reverse the progress of the guaifenesin fibromyalgia treatment provides additional support for Dr. St. Amand’s theory.

GUAIFENESIN’S RELATIONSHIP TO ENVIRONMENTAL MEDICINE. Now that Dr. St. Amand’s approach has been introduced, we will offer some speculations on how it may relate to immune sensitivities. We shall begin with the idea of total load in Environmental Medicine. This refers to the tendency for environmental factors to each add an increased level of stress and strain on the body until finally the person collapses under the weight of these factors. Dr. St. Amand speaks of many types of stressors or triggering agents that may occur and create a demand for energy that exceeds the available ATP production leading to a reaction or flare in symptoms. One might even regard the increased intracellular phosphate and calcium levels, and the reduced ATP they produce, as another sort of environmental stressor, contributing to the total load, but this time at the cellular as well as systemic levels.

Some of the patients that Dr. St. Amand sees may be the ones who are what Environmental Medicine considers to be at the maladapted, non adapted, or exhausted phases of their illness. Assuming these patients have Environmental Illness, they are less likely at this stage to identify their illness as environmentally related or to look for sensitivities, since they basically feel sick all the time. Environmental Medicine refers to cases where irreversible tissue damage has occurred, and in these cases it appears that avoidance of reactive environmental substances will no longer allow full recovery. However, the hard or swollen areas observed in fibromyalgia also might appear to be irreversibly damaged. The cells may appear to be basically dysfunctional, many are in a state of constant contraction, and may be unable to even excrete waste products. Yet, guaifenesin has been repeatedly observed to clear up these hard and swollen deposits. Only actual osteoarthritic joint damage and x-ray abnormalities appear to be permanent. Dr. St. Amand, who had a severe case of fibromyalgia, is now one of the healthiest and most active 70 year-olds I have seen. Thus, this approach may give physicians an additional tool to help those patients who appear to be almost beyond hope.

OBTAINING BETTER HEALTH THAN EVER BEFORE? In another situation, when a patient has been helped considerably by Environmental Medicine, but is still not fully well, perhaps the use of guaifenesin would result in much greater health. Dr. St. Amand’s patients differ from those treated with other approaches in that they not only improve but often recover to a level of health and vigor that they may never have experienced before. Adverse food and chemical reactions also appear to decline over time for these patients. If salicylates are meticulously avoided and one achieves the correct dosage, the patient often begins to show significant improvement in 3 to 6 months. The longer one has had the illness, the longer it takes to reverse it completely and thus some may need to be treated for a year before improvement is observed. Stopping guaifenesin or blockage with salicylates causes progress to be reversed due to the return of lesions as shown by Dr. St. Amand’s method of mapping lesions. There are no significant side effects, however the reversal process usually causes an intensification of symptoms especially after one first achieves the correct dose (for 90% of Dr. St. Amand’s patients the correct dose has been between 600 and 1800 mg per day, 10% require more).

Two other phenomena, observed by Environmental Medicine physicians, are the spreading and switching of the target organs or areas affected as the disease progresses. This also generally occurs in fibromyalgia patients. This leads me to speculate that in some patients the calcium and phosphate effects on the tissue are a cofactor in the mechanisms that cause the targeting of particular organs or areas. Perhaps the inadequate ATP in calcium/phosphate-affected areas prevents clearing of immune complexes and other compounds and further slows the recovery of tissues affected by inflammatory responses. The oxidative stress to cells that Majid Ali emphasizes in his book, The Canary and Chronic Fatigue, may also be related. A shortage of ATP due to calcium and phosphate excesses in the cell cytoplasm would be exacerbated by the oxidative stress and would lead to even further ATP shortfalls.

ENVIRONMENT VERSUS GENETICS: WHY SOME MAY BE VULNERABLE. Finally, the approaches are complementary, because Dr. St. Amand stresses the genetic aspects of the illness while Environmental Medicine naturally focuses on the environmental factors (what CFIDS/FMS researchers call triggering factors). Let us assume for a moment that fibromyalgia is an inherited defect of enzymes involving phosphate excretion, as hypothesized by Dr. St. Amand. What then is the role of environmental factors? Dr. St. Amand theorizes that a large demand upon the body’s energy supply (ATP), like a bad chemical exposure, a severe infection, or an auto accident could trigger a “sudden onset” of the illness. Alternatively, for a gradual onset the demands could be smaller and more numerous, but at some point the body is no longer able to provide adequate ATP to allow the body, or particular areas or systems of the body, to function normally. It might be that the relative role of environmental and genetic factors might depend on the individual genetic makeup and the types of environmental exposures for each patient. Perhaps a large enough chemical exposure trigger could leave a person disabled at 30; whereas, a person not exposed to a trigger might have led a normal life, suffering only an achy, arthritic and tired old age. It may be that environmental factors are more relevant in those who only inherit a defective gene from one parent instead of two. There are clearly many cases where fibromyalgia develops early and progresses rapidly and perhaps these occur when the genetic defects are inherited from both sides of the family. Dr. Majid Ali proposes that some people, the so-called “canaries in the coal mine” are predisposed genetically to oxidative damage and thus are more vulnerable to environmental factors. Perhaps for many people with fibromyalgia, this genetic predisposition is the defect Dr. St. Amand proposes. An inadequate level of ATP/energy would mean insufficient energy to maintain the cell membrane among many other important cell functions and would quite naturally lead to chronic fatigue, pain and other symptoms.

THE EVIDENCE: A STUDY AND A SURVEY. The preceding discussion of theory is interesting, we hope, but the results of treatment are the primary consideration, independent of what physiological mechanisms are used to explain them. In my experience, Dr. St. Amand is clearly more interested in getting people well than he is in promulgating his theory on why uricosuric drugs like guaifenesin help FMS/CFIDS patients. For more background on what led him to this theory, one should refer to his paper on fibromyalgia and hypoglycemia and the lecture video (see below). As to the treatment results, Dr. St. Amand has helped thousands of people get well and these results have kept his schedule quite busy with patients, and answering inquiries from many doctors in this country and abroad. The research done so far has been clearly inadequate for various reasons. The one double blind study done was ruined by several flaws, including a lack of knowledge of the general increase in the use of salicylates (which block the guaifenesin) in cosmetics, sunscreens, ointments and many other products that was occurring at the time of the study. However, a recent Internet survey of over 100 patients from around the country by a support group leader, showed 91% improved on guaifenesin (Caution: this was not a randomized study and may have been biased in favor of those who responded to treatment). The survey data, consisting of the answers to 12 questions by each of the 100 participants, is available in the form of a poster chart (see below). When one examines the poster chart, it is apparent that many people with CFIDS/FMS improved significantly and sometimes completely by taking only guaifenesin. A 2 hour and 40 minute video of Dr. St. Amand’s lecture and question and answer period is available from Nancy Medeiros (PO Box 461377, Escondido CA 92046-1377, include $23.00 for video and $12.00 for poster chart). (NOTE: MARCH 16, 2002 UPDATE. NANCY MEDEIROS IS NO LONGER SELLING THESE ITEMS. SIMILAR VIDEOS AND BOOKS ARE AVAILABLE FROM THE FIBROMYALGIA TREATMENT CENTER In addition, three fibromyalgia sufferers, in two different books have included discussions of Dr. St. Amand’s work (Devin Starlanyl, MD. and Mary Ellen Copeland, MS., MA, Fibromyalgia and Myofascial Pain Syndrome and Miryam Ehrlich Williamson, Fibromyalgia: A Comprehensive Approach). The CFIDS Chronicle (CFIDS Assoc. of America, 800 442-3437) has included an article on his work in the Fall, 1996 issue.

Both Dr. St. Amand’s use of guaifenesin and Environmental Medicine have achieved considerable success in helping people get well when used separately. However, if the hypotheses presented in this section are correct, when they are combined, their power and effectiveness will be greatly increased. The added factor of the special low carbohydrate diet discussed below may improve the success rate even further for certain types of patients.

Part III. Carbohydrate Intolerance (a.k.a. Hypoglycemia, Low Blood Sugar or Pseudohypoglycemia)

Over 20 years ago, Dr. St. Amand was inundated by hypoglycemic patients in his endocrinology clinic, after a series of network news reports that reported on his work with this condition. He developed a set of dietary guidelines for eliminating sugar and certain other highly glycemic or very starchy foods and limiting other carbohydrates based on the responses of his patients over a number of years to various foods. A recent study provides support for Dr. St. Amand’s view that hypoglycemia (“low blood sugar”) is better defined as carbohydrate intolerance due mainly to an over production of adrenaline at low blood sugar levels. Genter and Ipp (1994) found that half of a group of healthy subjects developed acute symptoms of hypoglycemia near the peak adrenaline/epinephrine release which occurred at the lowest blood sugar levels (this was during five hour glucose tolerance tests when blood sugar levels, insulin, and other hormones were measured at ten minute intervals). Each subject reacted at different blood sugar levels, often at values within the normal range. Acute symptoms may include dizziness, fainting, nightmares, panic attacks and many other symptoms also found in fibromyalgia, CFIDS, and MCS.

NOT JUST CANDIDA REDUCTION EFFECT: A PERSONAL ACCOUNT. When I first read of Dr. St. Amand’s work, I suspected, like others experienced with Environmental Medicine, that the improvements he observed were due to reductions of certain food allergies and sensitivities and the yeast Candida albicans. After trying the diet and experiencing great improvement and after learning more of the theory and background, I have a quite different view. I have found Candida to be a problem in my illness, and I have had it treated by various drugs, such as nystatin and diflucan, as well as by dietary methods. Improvement from these methods has been rather limited. I have also tried hypoglycemic diets before. However, when I recently began to follow the quite strict and specific hypoglycemic diet (St. Amand, 1996), my fatigue and brain “fog” decreased significantly in 2 weeks. By 2 months on the diet, my improvement was even greater. The beneficial effect on my stress and anxiety levels was equally dramatic. My night sweats were also greatly reduced. In fact, it is rather hard for me to be afraid of anything now, whereas before, just a visit to the doctor, even a doctor I liked, would give me diarrhea and lead to an accelerated heart rate all day. I also find I can now stay active even 5 or 6 hours after eating, whereas before I would have been shaky if I was even mildly active if I had not eaten within 3 hours. This improvement occurred without any significant die-off or withdrawal reaction that would have indicated that Candida or allergen reduction was the primary factor in my improvement. My only change in diet was stopping rice and increasing the other non-starchy foods I had been eating. Rice had been tested intradermally and treated, and I showed no change when I had switched from rice to another carbohydrate source a few weeks before. But when I stopped rice to begin the strict hypoglycemic diet, kept the total carbohydrates very low, and restricted my diet according to Dr. St. Amand’s recommendations, my improvement was dramatic. In the last few months my level of allergen exposure has varied and my symptoms have varied accordingly, but my energy level, brain fog, anxiety and tendency to night sweats have stayed much improved as compared to the period before the hypoglycemic diet.

I believe that Candida and immune sensitivities are often very important factors, but my experience and those of many others indicate that much interesting research could be done to determine the influence of the amount and type of carbohydrate consumption on hypoglycemia, fibromyalgia and CFIDS as well. Environmental physicians will be in a good position to research the relative importance and the exact roles of hypoglycemia, Candida, food and chemical sensitivity , since they are in a better position to control for the various factors. I have been reluctant, as many others are, to be on a very high protein diet for various nutritional and ecological reasons. However, as one’s health is improved, many people can tolerate increased carbohydrate levels. Also, many vegetables, vegetable oils and nuts are good alternatives, and when food sensitivities are dealt with, many can use soy, eggs, and dairy products to reduce the need for meats, poultry and fish.

WEIGHT LOSS BONUS. I believe it is likely that Candida reduction also occurs on this diet and that some of the benefit I observed was due to this effect. However, it has helped me enormously to know that carbohydrate intolerance is a factor and to understand some of the mechanisms involved. And let me add one final note for those patients struggling with weight gain. Most people find it is relatively easy to lose weight on this diet, especially if food sensitivities are dealt with in the reactive patients.

References

Bengtsson, A. and Hendriksson, K. G., 1989, The Journal of Rhermatology, Vol. 16: supplement 19, pp.. 144-149.

Buchwald D. and Garrity D., 1994, “Comparison of patients with chronic fatigue syndrome, fibromyalgia, and multiple chemical sensitivities”. Arch Intern Med., 154:2049-2053.

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

Jaffe, Russell M., 1996, “A novel treatment for fibromyalgia improves clinical outcomes in a community-based study,” draft copy, based on presentation at American Assoc. for the Advancement of Science meeting, Baltimore.

St. Amand, R. Paul, 1997, papers on fibromyalgia and hypoglycemia, Marina Del Rey, CA http://guaidoc.com.

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.

Editorial Note (2006): For my current views on guaifenesin what I believe is likely to be the most effective approach to fibromyalgia, see the transcript of a talk I gave before a Support Group in 2005. I give an overview of what has helped me most, with an emphasis on a new approach, called the Marshall Protocol (MP) – also see http://AutoimmunityResearch.org.

Written by synergyhn

September 30, 1997 at 5:01 am

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