Re: NEWSGROUP FAQ'S FOR NEWBIES - Political Aspects of Lyme

LYME AND ALS

Arch Neurol. 1990 May;47(5):586-94.


Immunologic reactivity against Borrelia burgdorferi in patients with
motor neuron disease.

Halperin JJ, Kaplan GP, Brazinsky S, Tsai TF, Cheng T, Ironside A, Wu
P, Delfiner J, Golightly M, Brown RH, et al.

Department of Neurology, State University of New York, Stony Brook
11794.

Of 19 unselected patients with the diagnosis of amyotrophic lateral
sclerosis (ALS) living in Suffolk County, New York (an area of high
Lyme disease prevalence), 9 had serologic evidence of exposure to
Borrelia burgdorferi; 4 of 38 matched controls were seropositive. Eight
of 9 seropositive patients were male (8 of 12 male patients vs 2 of 24
controls). Rates of seropositivity were lower among patients with ALS
from nonendemic areas. All patients had typical ALS; none had typical
Lyme disease. Cerebrospinal fluid was examined in 24 ALS patients--3
(all with severe bulbar involvement) appeared to have intrathecal
synthesis of anti-B burgdorferi antibody. Following therapy with
antibiotics, 3 patients with predominantly lower motor neuron
abnormalities appeared to improve, 3 with severe bulbar dysfunction
deteriorated rapidly, and all others appeared unaffected. There appears
to be a statistically significant association between ALS and
immunoreactivity to B burgdorferi, at least among men living in
hyperendemic areas.


Chuck wrote:
> Political Aspects
>
> The fact that Lyme disease is usually curable has not discouraged the
> formation of over a hundred support groups and nonprofit foundations,
> some with financial backing from intravenous services hoping to
promote
> further long-term antibiotic therapies [27]. These groups and their
> ardent followers have used the Internet and other media to barrage
> politicians and the general public with misinformation, dire personal
> stories, rumors, and exaggerated claims about thousands of people
being
> maimed, killed and bankrupted each year by Lyme disease. The core
> message is that Lyme is a deadly chronic disease that requires
> long-term antibiotic therapy paid for by insurance companies. Despite
> its alleged frequency, NIH-funded clinical trials in Boston and
> Bethesda were hampered by a lack of patients who met science-based
> criteria for chronic Lyme disease. A third trial underway at Columbia
> University has had to modify its patient entry criteria in order to
> find enough patients to carry out the study.
>
> Support groups and individual patients have created many Web sites
that
> contain unsubstantiated assertions, inaccurate medical information,
and
> personal testimonies for the dubious treatments described above.
> Indeed, the Internet has provided a powerful mechanism for organizing
> patients and presenting poorly documented information to the public
and
> the press.
>
> Internet newsgroups have posted wild criticisms of physicians and
> researchers who disagree with their claims and concerns. Research
> reports that run counter to the claims of Lyme activists are
denounced
> and their authors accused of incompetence and financial conflicts of
> interest. Magazines and news organizations whose stories on Lyme
> disease are not sufficiently hysterical are barraged with e-mail
> complaints and urged to contact certain organizations for "the
truth."
> Protests have been organized to denounce Yale University's research
> meetings and Lyme clinic because, according to the protesters, Yale
> "ridicules people with Lyme disease, presents misleading information,
> minimizes the severity of the illness, endorses inadequate, outdated
> treatment protocols, excludes opposing viewpoints, and ignores
> conflicts of interest." Researchers have been harassed, threatened,
and
> stalked [28]. A petition circulated on the Web called for changes in
> the way the disease is routinely treated and the way insurance
> companies cover those treatments. Less radical groups have had their
> meetings invaded and disrupted by militant Lyme protesters.
>
> Some Lyme organizations have tried to raise funds for their own
> research on hyperbaric oxygen treatments, pregnancy-related Lyme, and
a
> clinical trial of chronic Lyme patients. Others have organized
> "scientific" meetings that include anecdotal reports by physicians
> friendly to their cause, and one group has launched a journal that
> reflects its leaders' beliefs.
>
> The Lyme Disease Buyers Club markets vitamin and nutrient supplements
> (e.g., flax seed oil, evening primrose oil, coenzyme Q10, garlic,
> B-complex) to Lyme patients. Its web site states that these nutrients
> are not a cure but "provide daily support for the body's natural
> metabolic activities." The club offers "a 10 percent discount off Pro
> Health's already low, every day catalog prices." and states that "10
> percent of each sale will go to Lyme disease research and advocacy
> projects." However, the initial proceeds went to the Lyme Alliance,
of
> Concord, Michigan, an advocacy group that filed an amicus brief
> supporting a court appeal by a Joseph Natole, Jr., M.D., whose state
> medical board had sanctioned him for inappropriately managing
patients
> with actual or suspected Lyme disease. According to a report on the
> Alliance's Web site: the court ruled against the doctor; his license
> was suspended for three months; he was fined $50,000; and he was
> subsequently indicted on federal charges of overbilling insurance
> companies. The Alliance later circulated a petition stating that,
"Lyme
> disease can and does exist as a chronic illness with persisting
> infection, and that the disease is greatly underdiagnosed and
> undertreated." The petition demanded that, "Physicians who are on the
> front lines of Lyme disease patient care not be harassed, persecuted
or
> made to fear for their medical practices because they do not adhere
to
> the conservative "short term" care for Lyme disease."

.