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The Lyme Times
Patients and groups started to connect as
never before. The Stolows set up an inter-
active site – LymeNet – that has thousands
of users today. Soon websites were added
to the mix – first the LDF and then LDRC.
The first efforts were primitive but ad-
vocates quickly learned how to use the new
tools.
Congress gets involved
In 1993, the year JAMA published Lyme
guru Allen Steere’s notorious over-di-
agnosis paper, Lynch’s idea of a Congres-
sional hearing materialized. Unfortunately,
Lyme advocates at the LDNNJ didn’t find
out about it until the last minute. To their
horror, Steere was to be keynote speaker
with no opposing view. Patient advocates
frantically conducted an intense telephone
campaign.
Within two days over 2,000 calls, letters
and faxes from support groups across the
country flooded congressional offices.
As a result, committee chairman Edward
Kennedy agreed to include speakers who
believed in the existence of chronic, per-
sistent infection, and personally invited
Lyme disease patient advocate Dr. Joe
Burrascano.
Senator Kennedy asked the LDF to
submit a proposal to the hearing. In their
submission they elaborated on issues
such as insurance company denials; the
“narrow, falsely restrictive and misleading
surveillance case definition;” under-re-
porting; and conflicts of interest. We pub-
lished the full text in
The Lyme Times
#11.
It is sobering and sad to see how many of
the points they made then remain current
today.
At this hearing Burrascano gave his
famous speech suggesting that the gov-
ernment was carrying out another
Tuskegee experiment on Lyme patients. He
accused a “core group of university-based
Lyme disease researchers and physicians
… of adhering to outdated, self-serving
views and attempting to personally dis-
credit those whose opinions differ from
their own.”
Evan White, a teenager disabled by
Lyme, testified (his mother interpreting
because he could barely speak). Steere told
a reporter that he had never seen a case
like it. A legislator was heard to remark, “It
seems that our two speakers [Burrascano
and Steere] don’t agree.” Soon after,
the N.Y. Office of Professional Medical
Conduct (OPMC) launched an attack on
Burrascano that cost him thousands of
hours and tens of thousands of dollars to
defend. The Lyme Wars had begun.
Existing groups didn’t seem to be
winning. The battle had become personal,
and some people were still trying to create
a more perfect patient organization. The
Lyme Disease Association of the United
States (LDAUS) was Ohio attorney Janice
Beers’ attempt to bring unity to the many
diverse groups springing up across the
country. Beers set up a democratically rep-
resentative infrastructure with state groups
combining into districts, and each district
electing a member to the board of trustees.
LDAUS started a newsletter in 1994 and
planned the first general assembly in 1995.
By 1996 LDAUS was doomed to failure as
Beers became too ill to run it.
Our adversaries were not sitting idly by.
Vaccine trials were under way. A group
of academicians and researchers formed
the American Lyme Disease Foundation
(ALDF), an IDSA front group. Patients be-
lieved they chose their name to deliberately
deflect attention from the Forschner’s “real”
Lyme Disease Foundation. ALDF was pro-
vaccine and had the support of the Centers
for Disease Control (CDC).
Gaining ground
At the same time there were hopeful
signs. The New Jersey Lyme Disease Co-
alition was raising thousand of dollars
for research, Ohio had a Lyme Disease
Association. The Greater Cleveland LD
Support Group appeared on an educa-
tional TV show and arranged a forum for
legislators. In what would have been the
first doctor protection bill, the Georgia
Lyme Disease Association tried to pass the
“Access to Medical Treatment Act,” per-
mitting healthcare practitioners to provide
any method of treatment that fell within
their scope of practice, as long as it would
not endanger the patient. The bill sought
to restrict medical boards from prose-
cuting providers solely because of un-
approved treatment protocols; it did not
pass. In Minnesota, the Dept. of Health
Services asked advocates to develop and
disseminate clinical guidelines for di-
agnosis and treatment, and the Minnesota
Coalition stepped up to the plate.
Increasingly, however, Lyme practi-
tioners were being targeted by medical
boards. By 1995, Michigan support groups
were organized enough to rally to support
one of their doctors who had been targeted
Pat Smith, third from left, was chair of the NJ Lyme Committee, a political action group, when
she participated in a Lyme candlelight vigil in Trenton, NJ, in 1992.
Ken Fordyce photo