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"The biggest problem I had was not my disease, but getting any doctor to even believe I was sick. I know they all thought I was simply fat and lazy," says a 29-year-old Tennessee woman who suffered from extreme fatigue, weight gain, depression, chronic infections, and muscle and joint pain for two years.
Eight doctors failed to diagnose her condition. The ninth finally had an inkling what her problem might be, and low T3 and T4 thyroid levels confirmed his suspicions: She has chronic fatigue immune deficiency syndrome (CFIDS).
And she’s not alone. More than 800,000 Americans, the vast majority of them women, suffer from CFIDS, and 6 million have the closely related condition called fibromyalgia syndrome (FMS). The Tennessee woman’s experience is unfortunately the norm: On the average, people eventually diagnosed with CFIDS or FMS have seen nine doctors and have experienced symptoms for two years.
Over the years, their biggest problem has been getting anyone to listen to their complaints or even to believe such a condition exists, says Jacob Teitelbaum, MD, director of the Annapolis (MD) Research Center for Effective FMS/CFS Therapies. "Doctors have got to regain their ears and listen to their patients, like the doctors before us did," he says.
The complexity of CFIDS and FMS makes a diagnosis an onerous task. "That’s partly because the symptoms of CFIDS and FMS are so vague that it is hard to pin them down. There’s no uniform definition, and it’s an open-ended discussion that often is very anecdotal," says Miami endocrinologist Neil Goodman, MD, FACE. "So many people disagree about what these diseases are. Defining them is nearly impossible."
Teitelbaum takes the whole tangled mess and attempts to unravel each patient’s case individually. "I have found that the key to eliminating chronic fatigue is to treat all of the underlying problems simultaneously, since most sufferers of chronic exhaustion have a mix of at least five or six underlying problems."
Tracing a complex tangle of symptoms that may trigger a cascade of events leading to FMS and CFIDS, Teitelbaum has devised an extensive diagnostic questionnaire to help pinpoint a diagnosis. Coupled with the results of a battery of laboratory tests, Teitelbaum says, a program can be tailored specifically to the needs of an individual patient. His published randomized, double-blind, placebo-controlled study of 72 FMS and CFIDS patients shows individually tailored protocols provided 76% symptom relief in three months and 90% in two years.1
The cascade of physiological events that some patients call the descent into hell, in Teitelbaum’s opinion, often begins with hypothalamic and thyroid dysfunction. He starts with T3 and T4 thyroid tests, but does not rule out thyroid dysfunction if the results are normal.
Goodman is skeptical about the endocrinological foundation of the diseases, and suggests that endocrinological dysfunction could be caused by the CFIDS and FMS symptoms themselves. "It could be a chicken and egg situation. I’m not saying he’s wrong, but I think we need to look at it a little more deeply," says Goodman.
FMS differs from CFIDS because it is characterized by many tender knots in the muscles. "For many people, CFIDS and FMS are the same illness," says Teitelbaum.
Teitelbaum gets his results through a cocktail of pharmaceuticals and supplements that may require the patients to take 30 or more pills a day. He also begins with the admonition that restful sleep is the key to good outcomes. "Many resist taking so many pills, but when they start seeing the results, they see that it’s worthwhile."
Every patient diagnosed with CFIDS or FMS gets melatonin and valerian (to promote regular sleep patterns), a daily multivitamin, and magnesium with malic acid. Also, he makes available to all patients low doses of any or all of the following: zolpidem (Ambien), trazodone (Desyrel), cyclobenzaprine (Flexeril), carispordol (Soma), amitriptyline (Elavil), and clonazepam (Klonopin).
Individualized treatments may include the following as warranted by laboratory exams or symptomology:
— sugar craving;
— shakiness relieved by eating, dizziness, moodiness, recurrent infection, high stress at illness onset, and low blood pressure.
"There is no lack of scientific basis for treat-ment, just a lack of awareness of the treatment," Teitelbaum wrote in his book From Fatigued to Fantastic (New York City: Avery; 2001).
Teitelbaum admits he was surprised by the results of his study. "We expected some improvement, and we have seen it in practice, but we were stunned to see that such a large percentage of symptoms could be relieved in such a short period of time, and they almost completely disappeared with two years of treatment in the active group."
Of the 33-member active group, 16 reported they were greatly improved, 14 said they were better, two said they were the same, and only one reported being worse. In the 33-member placebo group, only three reported great improvement, nine said they were better, 11 said they were the same, six were worse, and four were much worse. Nearly 50% of the active group reported a 133% increase in energy and a 58% reduction of pain after three months.
"This is 25 to 30 times more effective than any treatment previously shown to be effective in long-term, placebo-controlled studies," he says. Teitelbaum concedes that some doctors may be uncomfortable with a study that uses multiple interventions adjusted for each patient and that treats patients on symptoms despite lab values being within normal range, yet he contends that "Neither of these concerns has any significant impact on the scientific or clinical validity of the study data."
He argues that alterations in the patient’s regulatory system "can cause multiple marginal deficiencies, which, in the aggregate, may cause severe dysfunction." He notes that recent data show that normal thyroid values often are found when hypothyroidism actually exists. "Because this is a complex syndrome, there is no magic bullet cure. Treatment is most effective if you address the whole process instead of individual symptoms."
(Editor’s note: The Centers for Disease Control and Prevention has a web site with specific information on CFS: http://www. cdc.gov/ncidod/diseases/cfs/index.htm. The site provides diagnostic criteria and a wealth of other information for health care professionals and for patients.)
1. Teitelbaum J, et al. Effective treatment of chronic fatigue syndrome and fibromyalgia a randomized double-blind, placebo-controlled, intent to treat study. J Chronic Fat Syn 2001; 8:3-28.