Dr. Cheney continues his discussion, this time focusing on some specific types of Treatment for CFIDS patients.
The treatment of DHEA deficiency, in my experience, has been confusing. In the sicker patients who most often have severe DHEA deficiency, it has often produced significant relapses. If the low level of DHEA is, in fact, a compensatory response to reduced ATP (energy) production, then administering DHEA may actually make patients dramatically worse, and I’ve seen this in some patients. On the other hand, more mildly ill patients seem to benefit. Sicker patients seem to respond best if the initial dose is very low and advanced very slowly.
At high doses used in the intravenous form, I think that gamma globlin helps the syndrome. The benefits, however, do not outweigh the cost. Intramuscular (IM) gamma globulin is much less costly and useful to diminish the frequency of upper respiratory tract infections as well as other infections. Even low dose (2-3 cc) IM gamma globulin given twice weekly has some natural immunomodulatory properties that suggest its use in CFIDS. However, IM gamma globulin may not be as helpful for the overall syndrome as IV gamma globulin.
When we were involved in the UltraClear Sustain studies, we saw some individuals who were getting very ill on UltraClear Sustain. We realized that they were always Patients with low glutathione levels. Glutathione is essential in liver function as an intracellular antioxidant. By stimulating the liver, UltraClear Sustain puts increased demand on glutathione. If a patient was already deficient , UltraClear Sustain would make him or her even more deficient.
Clinically, a deficiency could be very significant. We’ve been Prescribing high doses of reduced gluthione and have seen striking ally in headache, within improvement, especially in headache, within days. Glutathione is not well- absorbed in the gut and, once absorbed, it may not be well utilized in cells. As a result, the dose has to be fairly high. We start anywhere from 150 to 425 mg, three times per day. After a short period of time, we bring the dose down to maintenance levels of 75 to 150 mg, three times per day.
We are still using UltraClear Sustain . in selected individuals. But, we are measuring glutathione by sulfation index first before making the determination to treat. UltraClear Sustain, when properly used, may be the best nutritional supplement to improve liver-gut dysfunction.
Klonopin binds to the benzodiazepine receptor in the limbic system arid up-regulates GABA, which inhibits NMDA and resets the neuron to a lower level of firing. Since it is thought that overstimulation of the NMDA receptor is a primary cause of brain injury, Klonopin may be one of the most important, treatment of CFIDS patients. We usually prescribe Klonopin along with magnesium glycinate (see below).
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Kutapressin can be best viewed as a broad-spectrum anti-viral with activity against most, if not all, human herpes viruses and probable activity against other human viruses. It is quite safe and I believe helpful in 60% of patients. The beneficial effects may not peak until alter four months of therapy. Daily doses at 2 cc or greater seem to work better than other dosages or frequencies. I’ve been able to maintain a number of patients in a more-or-less functional state with Kutapressin and they have problems when they are removed from this therapy.
We have been using oral magnesium glycinate, which is magnesium chelated to glycine. Glycine is the smallest amino acid and it tends to improve the bioavailability of magnesium and reduce the gastrointestinal problems associated with magnesium. In addition, glycine can help as a muscle relaxant. We think that the injectable magnesium, while superior, is problematic in its administration. it hurts too much and is too difficult to give for extended periods of time.
Monoamine Oxidase Inhibitors
I have not found MAOIs (i.e. Marplan, Nardil, Parnate) very useful in CFIDS patients, as a group. The side-effect potential seems to outweigh the benefits in most cases, There are some CFIDS patients who are treatment resistant, or depressed with severe fatigue, who may respond to MAOIs.
I believe nutritional supplements should be considered at three or four different levels. At one level, broad-based multivitamin/multimineral support seems warranted in a chronic illness which shows evidence of immune activation, metabolic disturbances and functional impairment.
At another level, some nutrients can be viewed for their pharmacological effects, particularly at higher doses. Many vitamins and minerals are coenzymes and doses above recommended daily allowances can modulate enzymes to which they are coenzymes. I believe this is the reason for the benefit we see in high doses of B-12 and magnesium.
At a third level, vitamins and minerals in certain combinations can be viewed as biological response modifiers for certain organ systems. With certain configurations of nutritional supplements, one can, for example, stimulate liver detoxification and resuscitate gut epithelial function. I believe it can play a significant role in intervening to functionally improve various organ systems.
Finally, some vitamins and nutrients can be viewed as antioxidants. Harmful oxidation is suspected of being significant in CFIDS. Reactive oxygen species can damage cell membranes and organelles which make energy and enzyme systems and can alter DNA. There are a number of reasons to be concerned about free radical/ oxidation injury in CFIDS.
Oxytocin appears to have a dramatic effect in some patients. Symptom improvements can be seen in fatigue, pain arid cognition, especially short-term memory. Since oxytocin is made in the supraoptic nucleus of the hypothalamus very near where corticotrophin releasing hormone (CRH) is made, it seems reasonable that since CFIDS patients have CRH deficiency, they may also have oxytocin deficiency. Oxytocin controls microcirculation in the deep brain retina, skin and muscles. We typically use sublingual form of oxytocin at 10 to 20 a up to three times per day as needed.
Reprinted by permission from The CFIDS Chronicle, published quarterly by The CFIDS Association of America, Spring 1995, page 42. For more information, please call 1-800-44CFIDS or write: The CFIDS Association of America, PO Box 220398, Charlotte, NC 28222-0398.