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Pharmacy and Medications

Cholestyramine: cure for fibromyalgia?




I lead a support group for fibromyalgia. Last night a group member told the rest of us of finding a medical doctor`s website (chronicneurotoxins.com) which postulates that FMS (among other "syndromes") are in fact caused by neurotoxins released by a tiny herpes 6 virus, which invades the brain and affects eyesight (testing eyesight is their first line of diagnostics), and is only detectable using specific assays which are generally not used by most doctors.

The only treatment is with oral (resinous) cholestyramine, a prescription medication.

Have any of you heard anything like this before? I`d like to hear good, bad, or indifferent information before the rest of the group runs out to their doctors in search of their own prescriptions for it. I need to find whether this compound may pose serious side effects before my group runs headlong into a scam or a disaster. We`re just so racked with pain and fatigue that this sounded like a welcome cure (took the guy who tried it 3.5 weeks to go from preparing for his death to returning to full time work, simply doing the cholestyramine diet).

Thanks for anything you can offer,


Fibromyalgia is a chronic debilitating disease of unknown origin, which manifests as widespread musculoskeletal pain and stiffness associated with fatigue, poor sleep, neuroendocrine disorders, psychological distress including anxiety and depression and the presence of discrete tender points. In the United States, fibromyalgia affects approximately 3-6 million people, and most of these patients are young to middle aged women. In 1996 the annual cost of treating a single patient with fibromyalgia was approximately $2300. Common physiologic alterations seen with the disease include abnormalities of sleep, muscle, neurotransmitters, the neuroendocrine system, and cerebral blood flow. Patient presentation may vary and no validated biomarker for the disease is known. American Academy of Rheumatology http://www.rheumatology.org/research/classification/fibro.html has developed diagnostic criteria for the disease, and these should be used for accurate case definition and to insure consistent patient selection for controlled studies of the disease and its treatment. Some of the proposed causes of fibromyalgia include idiopathic changes in regulation of neurotransmitters, hormonal control problems involving the hypothalamus–pituitary-adrenal axis, immune system dysfunction, viral illness, and abnormalities of sleep physiology. While the initial complaint of fibromyalgia patients is often pain at discrete tender points, the presence of both physical and psychological complaints creates a strong argument for a primary cause originating in the central nervous system. The authors of the website you mention propose that fibromyalgia is caused by an exposure to an unknown environmental neurotoxin. According to their theory, fibromyalgia patients are more sensitive to the neurotoxin or are less able to eliminate the toxin than unaffected individuals. They propose that cholestyramine can be used to help the body eliminate the neurotoxin. They further think that a defined visual contrast sensitivity (VCS) test can be used as a marker of exposure to neurotoxins in general, and that improvements in VCS test results parallel both improvements in fibromyalgia symptoms and reduction of total body load of the toxin. This theory is attractive, because it proposes a primary cause (a neurotoxin) and provides a possible cure for the diseases (avoid the exposure in the first place or help the body excrete the toxins more quickly). Since the toxin is unknown, it is difficult to know what to avoid. However, improving the body’s ability to eliminate toxins is an accepted method of decreasing symptoms associated with poisoning. Prior to your question we had not heard of using cholestyramine to treat fibromyalgia. No controlled studies in which this treatment was used for fibromyalgia have been published. The author of the website you mention has published an open study in a peer reviewed journal in which he used his treatment protocol to reduce symptoms associated with exposure to neurotoxins released by Pfiesteria species. Pfiesteria Sp. are a type of micro-organism known as dinoflagelates, which release toxins. They have been associated with large fish kills in waters draining into the Chesapeake Bay. Exposure to the neurotoxins produced by overgrowth of these organisms in the area around the Chesapeake Bay is thought to be responsible for a number of illnesses in fishermen and others during 1997. The authors extrapolated the positive results from this study and are using their treatment protocol for a number of chronic diseases that could be due to exposure to neurotoxins. We did not see any mention of Herpes 6 virus at this website. Cholestyramine is available by prescription from your doctor. It is an ion-exchange resin used to lower cholesterol by binding to bile acids in the digestive tract. Cholestyramine binds avidly to many substances. Consequently, it may prevent the absorption of other medications, and significant drug interactions have limited its use. Otherwise, it is relatively well tolerated, but may cause constipation, abdominal pain, bloating, nausea and vomiting. Other adverse effects including muscle and joint pain, headache, anxiety, vertigo, dizziness and fatigue have been reported during use of the drug. It has been used occasionally to treat poisoning after pesticide exposures and drug overdoses. Fibromyalgia is a difficult disease. The cause has not been determined and treatment is less than adequate in many cases. In this environment, patients often become disillusioned with standard treatments and seek alternatives. The theory that environmental neurotoxins are responsible for this disease is plausible but still unproved. At this point it is impossible to state whether treatment with cholestyramine represents a true benefit or nothing more than wishful thinking. If the authors of the website have good evidence that their protocol is beneficial for fibromyalgia patients, we would encourage them to publish their results. 

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Response by:

Robert James Goetz, PharmD, DABAT
Assistant Professor of Pharmacy Practice
College of Medicine
University of Cincinnati