The treatment can be considered to be a multi-layered pyramid. All patients need to commit themselves to working hard at the foundation layer in order for any treatment to be successful. The treatments in the layers above the foundation depend upon an individual patient’s symptoms and the results of various tests. The smaller the layer, the fewer patients for whom the treatment would be recommended.
The foundation layer includes lifestyle adjustment, setting activity limits, changing attitudes and beliefs, and a modified elimination diet.
The first three pieces of the foundation are closely related. It is important to get out and find the boundaries of what one can do in terms of daily life, and then to stay within those boundaries. Trying to do too much, or pulling back and doing too little, is counterproductive.
For many patients with CFS, aerobic exercise — any kind of sustained activity, such as running or walking or swimming, designed to raise the heart rate and increase oxygen flow throughout the body, is usually counterproductive. Aerobic exercise beyond a certain point can damage the mitochondria, the key structure involved in producing energy within cells. That system appears to be malfunctioning in CFS patients, and leaves them extremely vulnerable to excessive aerobic exercise.
An Anaerobic Prescription:
The anaerobic system appears to be in much better shape. This allows patients to maintain muscle tone and strength with such exercises as weightlifting, isometrics, and stretching. One recommended routine is 10 seconds of activity followed by 60 seconds of rest.
Attitudes and beliefs about one’s life and about chronic illness can be impediments to treatment. A workaholic attitude, for instance, where a person measures his or her worth by how much can be accomplished, can result in anger and loss of ego when the ability to work at that level is taken away by CFIDS. Similarly destructive are beliefs such as hopelessness about the possibility for improvement, or an attitude that “my illness allows me to control others.” Acceptance of one’s illness, and finding new ways to view oneself as a contributing member of society, are critical to setting the stage for medical treatment.
To help guide patients to the necessary attitude adjustments, I recommends two tapes: “The Power of Myth,” by Joseph Campbell with Bill Moyer, and “Why People Don’t Heal and How They Can,” by Carolyn Myss. Both are available from most local bookstores.
The final piece of the treatment foundation is a modified elimination diet,
The goal here is to determine if the patient has an allergy or sensitivity to a certain type of food. Because the body’s reaction to food is often delayed 24 to 72 hours after eating, it is important to follow the recommended regimen carefully and keep accurate records of what is eaten and when, and what symptoms are experienced in the one to three days afterwards.
“Home Run Potential”
In a few cases, the patient will identify a certain food that is causing the symptoms, and eliminating that from the diet will clear up the problem. The possibility of dramatic improvement is not great, but it’s good enough to make the effort worthwhile, especially since there can often be no cost involved. What is more likely is that a variety of food sensitivities might be identified as provoking part of the symptom problems, and dietary changes could offer some improvement and contribute to the overall treatment.
Following the foundation, Dr. Cheney targets “neural protection” as the second level of his treatment pyramid. The injured brain, he explained, “fires a lower stimuli or at a lower threshold.” This apparently natural survival mechanism is out of control in CFIDS, so the body needs something to block these responses. One substance that may block this type of brain response is magnesium, although Dr. Cheney said it is not easily absorbed by cells.
Klonopin and Neurontin will also act to raise the sensitivity threshold, although the dosage of Klonopin that will be effective for an individual needs to be carefully determined by trial and error. Nicotine, narcotics, and certain antihistamines have a positive indirect effect on this process as well.
The third level of Dr. Cheney’s treatment pyramid involves reducing oxidative stress, the cellular damage caused by excessive free radicals or electrically charged oxygen atoms in the body. These may be produced by physical or emotional stress, and by injury, infection, or toxins. Dr. Cheney said fatigue can be viewed as a defense mechanism by the body to allow its natural system to reduce oxidative stress. He prescribes a combination of antioxidants and bioflavinoids, explaining that antioxidants alone can’t do the job. Specifically, he suggested patients generally avoid multivitamin combinations containing copper and iron and make sure that magnesium and selenium are included.
Megadoses of B-12
Next on the pyramid are vitamins B-6 and B-12. The latter, particularly, is a potent detoxifier of the brain. Dr. Cheney said the most recent experience with B-12 in England suggests that it needs to be given in megadoses in the range of 10,000 micrograms or more per day. Given before bedtime, to be effective, he said. The British version of B-12 is hydroxycobalamin and is superior to cyanocobalamin as a brain detoxifier.
The top layers of the pyramid include glutathione support to help detoxify the liver and therapy to improve gut functions, the antiviral kutapressin, targeted treatments for xenobiotic toxins, removal of root canal teeth that can harbor toxins, and finally Ampligen for patients who are highly positive for the newly discovered, low molecular weight RNaseL enzyme.
Commenting on the hope many patients have for Ampligen, Dr. Cheney cautioned that 85% of his patients who took Ampligen relapsed after the treatment was stopped. He noted that the manufacturer of the drug, Hemispherx Biopharma, has not disclosed the relapse rate in their most recent trials, but he suspected his experience was typical. “Maybe if patients are treated longer, they will have a lower relapse rate. That’s something we don’t know yet.”