Treatment Suggestions March 3, 2000 As a physician and scientist, I have long been torn between wanting to recommend therapy for GWS and anthrax vaccine-associated illnesses, and the remarkable lack of scientific data to support any treatment protocols. As many know, the only two treatment trials of GWS currently in progress are for mycoplasma (doxycycline treatment alone if positive forensic PCR) and cognitive behavioural therapy. No trials for anthrax vaccine illness exist. No case definition exists. No good data on incidence and prevalence exist. As a clinician, I treat many patients with chronic fatigue syndrome, fibromyalgia, multiple chemical sensitivity, and a few with Gulf War Ilnesses. As Garth Nicholson and others have shown, these are strongly overlapping syndromes. I suspect that they are due to a variety of incitants, but that there is great commonality in terms of pathophysiology. I believe that much anthrax vaccine-induced illness fits in the above categories, although some aspects may not. I have said before that I believe one major mediator of the varying symptoms is lack of ATP (cellular energy) production. This probably impairs function of all tissues with high energy requirements, particularly brain, other nerve tissues, heart, muscle and liver. Frequently there is inadequate endocrine function which may involve one or many hormones. Functional thyroid and adrenal deficiencies are seen, as well as sex hormone deficits. ATP pumps maintain the transmembrane electrochemical gradients of sodium, potassium, magnesium and calcium, and it is suspected that inability to maintain these gradients, and resultant loss of electrolytes, contribute to symptoms. What do these observations mean in terms of treatment? Treatment is symptomatic, not curative, as I and others in the field do not know the primary event(s) leading to illness and whether it (they) can be cured. However, various therapies can ameliorate many of the effects patients experience. Megavitamins and minerals, many of which are cofactors for reactions producing high energy compounds like ATP, can help push these reactions forward. Specific nutrients and supplements may functions as antioxidants, as transport substances (acetyl carnitine moving fatty acids into mitochondria), or may assist with detoxification of noxious metabolic byproducts. Judicious use of small doses of hormones may be beneficial. Eating a careful diet that doesn't tax the body's sytems and provides adequate nutrients is important (sufficient protein, limiting sugar in patients who have hypoglycemic symptoms, and eating healthy fats/avoiding trans fatty acids and excess saturated fats). The goal is to maximize whatever can be maximized in terms of metabolism, for patients who are starved for metabolic energy. Jeff Bland PhD in 1997 provided the following list of nutrients for neurological/cardiovascular disorders: CoQ10 N acetyl carnitine N acetyl cysteine glutathione Vit E succinate lipoic acid Vit. B12 Vit. B 6 folate betaine creatine Magnesium Zinc Copper Selenium Molybdenum Ginkgo biloba DHA/EPA (omega 3 fatty acids) To his list, I would suggest that Megamultivitamins with minerals avoid taking so many separate things. Malic acid, NADH, sAME and Vit C are useful. I often prescribe electrolytes: Mg, K, Ca, and even Na. B12 and DHEA deficiencies should be checked by a clinical lab, and supplemented if low. Hormone levels in the low normal range may lead me to a therapeutic trial of low dose hormone supplementation, to see if the patient benefits. Hormones I often use include thyroid, fludrocortisone, pregnenolone, DHEA. Other doctors use oxytocin and small doses of cortisol, in the range of 5 mg. per day. Plus other sex hormones. Dose ranges for these substances vary widely, and often can only be determined using trial and error. Some doctors use individual amino acid supplements, or medical food products with defined vitamin, electrolyte, antioxidant and amino acid content. Many have benefitted from antibiotics when they test positive for mycoplasma or other microorganisms. The sleep disturbance that is usually part of the illness should be treated, because patients feel much better when they receive adequate sleep. There are many approaches to use, and most doctors are familiar with them. The treatment of pain is difficult. It generally is "out of proportion" to any pathology doctors can find, and does not respond well to usual painkillers. It is a result of fibromyalgia, a "pain amplification syndrome" in which minor trauma to a body area results in excruciating pain, and patients often wake with any movement in the night, due to the pain. Often supplementation with substances above lessens the pain, especially folate 2.4 mg/day and magnesium malate. Applying capsaicin cream to a painful area several times daily helps, by reducing the inappropriate neurotransmission of pain signals to the brain. The increased sensitivity to noxious odors and other products which may accompany these illnesses should be treated first with avoidance. Treatment with electrolyte solutions, bicarbonate buffers and vitamin C is reported to rapidly benefit exacerbations. Increased symptoms of allergy benefit from OTC or prescription antihistamines. Tricyclic antidepressants, calcium blockers, and other pharmaceuticals have a role in selected patients. Some doctors are now experimenting with increased oxygen intake, either normobaric or hyperbaric. Authors who have contributed to the understanding of patients and other clinicians include Daniel Wallace MD (fibromyalgia) and Jacob Teitelbaum MD (chronic fatigue syndrome). Each has written books directed at patients. I regret that I cannot treat patients at a distance, but this is something I absolutely cannot do, for reasons of patient safety. I believe that the suggestions above will be useful to sufferers and their physicians alike. I am hopeful that research to better understand the illnesses and begin clinical trials of treatment protocols will soon eventuate. Meryl Nass