Eosinophilia-Myalgia Syndrome: A Tragic Novel Disease

How I Got EMS

In 1987 I began taking L-tryptophan, a popular dietary supplement that was promoted for a variety of complaints including PMS, weight control, chronic pain, depression, sleep disorders, and others. I believed I was a smart consumer because I had not bought LT on a whim. I studied brochures at the health food store, asked several doctors their opinions of using it, and researched it at the library. All of the books said it was safe. All of the doctors said it was safe. All of the brochures at the store said it was safe. All of the labels on all of the brands I purchased said it was “pure” and “natural” - therefore, as far as I could determine - it was safe.

When I was researching the uses and safety of LT, I was concerned about unwelcome side effects like headaches or nausea; however, it never occurred to me I might be poisoned. Furthermore, I could never have conceived a scenario in which by using the supplement, I would be sickened and become one of several thousand (or more) persons to develop a "novel disease" that would have its own diagnostic code (710.5). And, I certainly could never have imagined that at least 37 persons would die of the new illness within the first 18 months, and that countless others would become disabled for life, myself among them. Of course, I now realize more than 37 persons died of EMS in the first few years; in fact, I don't think we will ever know for sure how many have died of EMS.

But I did get sick, starting in the late summer of 1989 with symptoms as diverse as rashes that itched and burned incessantly; forceful, shock-like, shooting pains all over my body; increasing fatigue and inability to walk, stand, or rise from a sitting position; muscle spasms; hair loss; edema; cough; and many others too numerous to list. From August until November I went from doctor to doctor and received worsening diagnoses, beginning with hives in August and ending with a diagnosis of scleroderma in early November of 1989.

On November 17, 1989, I read in the newspaper about a strange new illness called Eosinophilia-Myalgia Syndrome (EMS). I recognized myself at once. Worse, I knew I had EMS.

The Status of EMS Now; Similarities with FMS and CFS; Safety of Dietary Supplements Today

EMS afflicted a probable five to ten thousand persons; however, a large number of those persons likely have never known what happened to them. (Some may have recovered, others might have died and the cause of their sickness was never diagnosed correctly, and others may have been misdiagnosed with other diseases or may have gone undiagnosed.) The Centers for Disease Control stopped counting cases at just over 1,500, so the real toll may never be known. The vast majority of people with EMS live in the United States where LT was sold over the counter, unlike most nations where it was available. (For example, in Canada, tryptophan was a prescription drug in 1989.) In foreign countries, fewer than several hundred cases of EMS are likely to exist, over 100 of those in Germany.

As you can see, EMS is an extremely rare disease. This makes it hard for patients to get good care and to find doctors who are knowledgeable about EMS, not to mention making it quite difficult to connect with other patients. (An EMS patient might be the only person in their area or city with EMS. Some states have only a few people who I know of who acknowledge having the disease.)

This is one reason it is important for support groups of diseases that are similar to EMS, such as Fibromyalgia, to welcome those with EMS who choose to join FM support groups. There may not be another support group for persons with EMS to affiliate with locally. Those who use computers, of course, can “plug in” to several online support groups and the one national organization (NEMSN). People with EMS live all over our nation, just like persons with most diseases live in all states. But only a few locations (cities, towns) are lucky enough to have enough EMS persons there to have local support groups just for EMS. [Update: As of this revision in 2007, I don't know of any local support groups for EMS that remain active.]

Besides being rare, EMS is a multi-systemic immune-mediated disease capable of causing harm to multiple body organs. Effects range from mild in some people to so severe that a person, at some point, might be said to be terminal because of EMS and other complications. Because no specific treatment exists for EMS, doctors treat symptoms of the illness as they arise. This means that treatment regimens vary a lot from person to person.

On a day-to-day basis, patients with EMS suffer from many of the same complaints as people with Chronic Fatigue Syndrome or Fibromyalgia. Among the disorders in common are sleeping problems; daily pain over a wide area of the body; headaches; morning stiffness; cognitive dysfunction; debilitating fatigue; depression and/or anxiety; TMJ or TMD disorders (jaws and face); sensitivity to drugs; allergies; and many others. Some people with EMS run fevers at times and have clear evidence of overactive immune systems. These patients may require treatment still with agents such as prednisone, plaquenil, methotrexate, imuran, or other drugs.

We with EMS have learned over the years that many people who used LT in the late 1980s (even earlier in some cases) could have EMS as their underlying primary disorder, but may not have been diagnosed, or were misdiagnosed with similar conditions like Fibromyalgia as their primary disease. Also, many persons with EMS have indeed developed a secondary Fibromyalgia to EMS - or FM and CFS secondary to EMS.

Among other long-term complications of EMS according to a 1999 article by Dr. Luis Espinoza published in the national organization's newsletter are: tremor and myoclonus; chronic liver disease; neurocognitive dysfunction; axonal neuropathy; cardiomyopathy; interstitial fibrosis; pulmonary hypertension; joint contractures; myofascial pain syndrome; chronic myalgias and arthralgias; scleroderma-like syndrome; desmoid tumor; and malignant fibrous histiocytoma (quite rare). [You can read Dr. Espinoza's article online at NEMSN's Web site. See the Medical Articles page.]

Finally, what about the safety of dietary supplements today? One concern of many with EMS and others in the medical community is that patients are taking diverse supplements, combining them with prescription medications, and often are not informing any of their doctors about the supplements they use. Some supplements, such as 5-HTP, melatonin, and St. John’s Wort (and maybe others) can interact with antidepressants or other drugs designed to boost serotonin. It's possible to get too much serotonin.

Moreover, there is the worry over possible contaminants in products bought over the counter. At various times different researchers and writers have expressed a growing concern that contaminants may exist in some dietary supplements at various times. Nobody knows who may be sensitive to these contaminants or if they are harmful or not when they do occur.

Surely, the recent scares in early 2007 with contaminated peanut butter and even pet foods should have taught consumers that foods are not immune to contamination via various means, domestic or foreign in origin.

All of us must be watchful and exercise care in what we consume. Government should be more accountable as well.

**revised from an article written in 1999 and published in a Nevada FM support newsletter

Questions? Please email Faith Rumph at faith_rumph@yahoo.com

Return to Home Page
Information Page
Support Page