Neurologist worried about cheated ALS patients

Yadollah Harati, M.D. is a neurologist and professor at Baylor College of Medicine. In 2009, he wrote the following as part of a larger column “What’s in the Literature?“:


I came across an alarming news item in the NERVECENTER section of the August 2009 issue of Annals of Neurology, which may have profound and adverse implications for the way we practice and care for our patients with ALS. It pertains to Lyme wars.

As many of you know, there are many unsubstantiated claims that ALS is caused by Lyme agent, Borrelia burgdorferi, and treatment with long courses of antibiotics will cure it or stop the progression of the disease.

I know of 2 patients of mine who had traveled for many months to a Midwestern state to receive such a therapy from a person who claims that he was a sufferer of the disease himself and was cured by the antibiotics. Unfortunately, these 2 patients’ condition has continued to progress and their disease have followed the usual and the expected course of ALS.

It is now alarming to learn that several State legislatures, the most recent one being Connecticut, have passed laws designed to protect physicians who treat ‘‘chronic Lyme disease’’ with long courses of intravenous antibiotics from disciplinary actions.

These laws clearly contradict the established clinical guidelines by both the American Academy of Neurology and the Infectious Disease Society of America and are another example of politicization of scientific information and clinical guidelines.

As a member of Infectious Disease Society of America puts it ‘‘if people like attorney general and state legislatures can start deciding what constitute good science and what doesn’t, that’s a very dangerous slope we’re on.’’

Therefore, when I read a recent article by Qureshi et al5 on Lyme disease serology in ALS, I was wondered how the politicians will interpret the results or whether they care at all.

The authors of this article report on 414 individuals with ALS evaluated in Massachusetts General Hospital who were tested for Lyme disease. Of these, 24 (5.8%) had serological evidence of past exposure to B. burgdorferi with a positive enzyme-linked immunosorbent assay.

However, only 4 patients had positive Western blot testing for immunoglobulin G antibodies to B. burgdorferi, specific proteins in blood confirming a past infection with Lyme disease. Two of these 4 patients received 4–5 weeks of intravenous ceftriaxone without any benefit, and all 4 patients died of ALS.

This study confirms that the prevalence of a past infection of Lyme disease in ALS is, in fact, very low and is comparable with the occurrence of Lyme disease in the endemic area of the United States. The authors conclude that Lyme disease is not likely to be an etiological factor or of significance in the differential diagnosis of motor neuron disease. I agree with them, but I am not sure of the politicians!

  1. Qureshi M, et al. Lyme disease serology in amyotrophic lateral sclerosis. Muscle Nerve. 2009. [paper mirror]

Brief excerpt from: Harati Y. What’s in the Literature? J Clin Neuromuscul Dis. 2009.

This brief excerpt has been reformatted for internet display as part of the LymeScience document repository.

See also: