Lyme disease: spurious cures

Harvard Health Letter, August, 1991 by Patricia Thomas

Public education campaigns aimed at preventing Lyme disease have given this summer scourge a high profile indeed. And scientists studying its distribution say that an increasing number of people are being exposed to this illness each year, in more and more states. As the disease has spread and become better known, it has spawned both an entire subculture and a small flurry of entrepreneurial activity.

Linked by local support groups and newsletters with such names as the ticked-off tract and Lyme Disease Update, people who call themselves "Lymeys" share experiences, complaints, and beliefs about cures with each other. Whether all Lymeys truly have chronic Lyme disease is not clear. Some of their symptoms, such as fatigue, weakness, and aches, are non-specific and may be associated with other conditions -- chronic fatigue syndrome or fibromyalgia, for example -- or may have no clear basis in physical illness.

Lymeys are unified by their blief that infection with the Lyme agent is the cause of their symptoms and by a general mistrust of standard medicine and its limitations. Many of them shun treatment at major medical centers known for research on Lyme disease. Instead, following what they read in the newsletters, some Lymeys travel great distances to consult self-appointed specialists with dubious credentials.

These doctors often prescribe intravenous antibiotic regimens lasting for months or, in extreme cases, years, at a cost of literally hundreds of thousands of dollars. Acting on physicians' orders, private companies will administer intravenous drugs in patients' homes. Some of these companies advertise their services in Lymey newsletters, help pay the publications' costs, and publicize support groups.

The "cure" can, however, be worse than the illness. Long-term dosage with intravenous antibiotics often leads to severe diarrhea, allergic reactions, or colonization by drug-resistant organisms, points out Leonard H. Sigal, who is the director of the Lyme Disease Center at Robert Wood Johnson Medical School in New Brunswick, New Jersey. Dr. Sigal adds that fibromyalgia (see the HMS Health Letter, July 1990) may develop after Lyme disease is cured and may be misinterpreted as ongoing Lyme arthritis. Fibromyalgia is not an active infection and does not respond to antibiotics. If it is misdiagnosed as Lyme arthritis, unnecessary and very prolonged antibiotic therapy may be given.

Fighting fire with...

Yet more troubling is malaria therapy for chronic Lyme disease. Some entrepreneurs, among them a few physicians, take groups of Lymeys to Mexico or Panama for injections of human blood containing malaria parasites. The basis for this practice as a treatment for Lyme disease was a thought-provoking but speculative letter to the editor of the New England Journal of Medicine, published on April 26, 1990. It was written by Henry J. Heimlich, a physician best known for the antichoking maneuver that bears his name. Dr. Heimlich pointed out that many features of chronic Lyme disease resemble those of late-stage syphilis, an illness caused bya spirochete distantly related to the Lyme organism. As he observed, infection with malaria (made temporary by subsequent antimalaria medication) was used from 1917 to 1975 to treat resistant cases of syphilis affecting the nervous system. He speculated that the same approach might relieve chronic neurological symptoms in patients with Lyme disease. A year later, Dr. Heimlich also made the case for malaria therapy in Lyme Disease Update, a newsletter based in Mill Shoals, Illinois.

Did malaria therapy work for syphilis? Dr. Heimlich writes that "tens of thousands of patients with neurosyphilis were cured" and adds that the treatment is still recommended for chronic syphilis affecting the nervous system when repeated courses of antibiotics have failed. But the Centers for Disease Control has issued a statement that "the effectiveness of malaria therapy for neurosyphilis was variable and unpredictable. Therapeutic trials were not carried out following strict scientific guidelines," and thus the effect of treatment cannot be adequately evaluated. The CDC also terms malaria therapy "obsolete" for neurosyphilis.

Exposure to human blood is required to transmit the malaria parasite--an ironic twist in an era when people store their own blood prior to surgery, rather than run the risk of contracting AIDS or hepatitis from even rigorously tested donor blood. According to David T. Dennis, coordinator of the Centers for Disease Control's research program on Lyme disease in Fort Collins, Colorado, "We just don't know how carefully the blood used for malaria therapy outside the United States is screened."

Desperate patients are willing to pay dearly for special trips to places where malaria therapy is legal. For example, at a center in Panama, Lymeys can be injected with malaria-containing blood for $10,000. In addition, the patients must pay for transportation, meals, and hotel accommodations for up to 30 days during the period of treatment.