Effective treatment: Unusual controlled study tests entire protocol

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Jacob Teitelbaum, MD, who has been specializing in the treatment of CFIDS and fibromyalgia for about 14 years in basic treatment protocol in a randomized, double-blind, placebo-controlled study. He has presented the results at a number of conferences, including the Myopain ’98 World Congress in August, and he hopes to have the full report published in a prominent peer-reviewed journal.

“The point is these are treatable conditions,” he said in a telephone interview with the Chronicle before leaving for the Myopain ’98 conference. “We don’t have a cure, and it’s not 100 percent, but we can help people recover.

“It used to bug me that doctors believed they couldn’t effectively treat this illness, but now there are a number of people who treat this effectively, and people need to know this. The nice thing is that now we have a good solid double blind placebo-controlled study that really documents this.”

Testing the whole package

Rather than testing a single medication or supplement, Dr. Teitelbaum gave patients his full course of treatment involving as many as two dozen drugs and supplements, individualized based on lab testing and symptoms, for an average of just over three months. About half the study subjects received a placebo treatment of identical or nearly identical-looking versions of the same tablets. All the patients in the study eventually received active treatments.

All patients received a daily multi-vitamin and magnesium with malic acid (Fibrocare) for nutritional support and melatonin, a combination of the herbs valerian and melissa (Valerian Rest), and some combination of low doses of the following medications for sleep: zolpidem (Ambien), trazodone (Desyrel), cyclobenzaprine (Flexeril), carisprodol (Soma), amitryptyline (Elavil) and clonazepam (Klonopin).

Individualized treatment

Depending on individual test results or clinical history, patients received varying doses of iron and vitamin B-12 supplements, as well as support for low thyroid function (Synthroid), adrenal insufficiency (cortisol and DHEA) and either testosterone in males or estrogen replacement in females. Patients were also treated for suspected neurally mediated hypotension (fludrocortisone) and for opportunistic infections of fungal overgrowth, parasites or clostridia difficile. As needed, some patients also received an antibiotic and antidepressants.

Dr. Teitelbaum said he is constantly adapting his strategies to incorporate new understandings about neurotransmitters, essential fatty acids and hormones. “There are so many different things, and the work is blossoming, I just integrate whatever works best. The nice thing about having a practice where I treat this one disease is that you know after five or six patients what is working. And when you have some patients who are not responsive, they get to try to the new stuff, so it’s constantly evolving.”

He said he was eager to have the study published, “because I think it will encourage people. But I don’t see any reason for people to wait; their doctors can start to use these treatments now.” Dr. Teitelbaum previously published an open trial (without randomization or a placebo group) in the Journal of Musculoskeletal Pain (1995, issue 4). His treatment strategies are also detailed in his book, From Fatigued to Fantastic, (1996 Avery), which is available from the Association (see pages 47–48).

Dr. Teitelbaum said he tells patients to expect to wait 3-4 months to start feeling better, but once they’re feeling well for about six months, they can be weaned off most of the treatments.

“Long term, I want them to be on a single, very good multivitamin daily and two Fibrocare (magnesium with malic acid) tablets a day. Those they should take forever. With the sleep medications, you usually need a little bit of something for about 18 months. And if a woman is in menopause, I think she should be on estrogen replacement.”

Lifestyle changes

He also feels that patients need to make long-term lifestyle changes. “Not everybody who gets well is able to go back to the situations that made them sick in the first place. In fact I recommend that most people not go back to those situations. For some of them, (the trigger) was a viral syndrome or an accident, so it’s not an issue, but other people were in toxic jobs, in toxic relationships, and they need to be aware if they go back to a 66-hour-a-week job or a spouse that was abusive, their body will call them in on it.”

That’s the voice of experience talking. Dr. Teitelbaum suffered from CFIDS himself and recovered before beginning his medical practice, but he has to keep listening to his body for signs of overdoing it. “If I overcook my body, it will let me know, and that’s a good thing. Typically, people with this disease are mega type A overachievers, and it’s good to have a biofeedback tool in your body that warns you when your life isn’t healthy. In that way, the disease isn’t an enemy, it becomes a teaching tool.”

“Encouraging” results

Dr. Teitelbaum believes the results of his study should give encouragement to patients who may be contemplating suicide because of severe CFIDS or fibromyalgia. Aware that Dr. Jack Kevorkian had assisted at least one CFIDS sufferer in committing suicide, Dr. Teitelbaum sent a copy of his study and a letter to Dr. Kevorkian urging him to inform CFIDS and fibromyalgia patients who come to him that these diseases are treatable. Dr. Teitelbaum said he already has received one referral from Dr. Kevorkian.

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