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2014 Volume 26 Number 1
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by the medical board for over-diagnosis and over-treatment. Al-
though the trial judge exonerated the doctor, the medical board
voted to disregard the court’s decision and to impose sanctions
anyway. The groups raised thousands of dollars for the doctor’s
defense fund and submitted an
amicus
brief to the court.
More than 100 physicians came to hear Dr. Burrascano at a
seminar organized by the Cape Cod Lyme Disease Awareness As-
sociation. The same group, led by John Coughlan, later pushed for
important revisions to the state’s Lyme reporting form.
Science and the press
Over the next few years, scientists announced the discovery of
at least four new
Borrelia
genospecies, and the NIH awarded a $4
million grant to Mark Klempner for a clinical treatment trial. I was
invited to serve as a patient representative on the Advisory Panel.
The experience opened my eyes to the deceptive practices of the
academic research community and their allies in government. The
research trial was ended before enrollment was completed, but that
didn’t stop the NIH from trumpeting unsupported conclusions
that would effectively deny extended treatment to Lyme patients.
All the major media outlets ran the NIH Clinical Alert headline,
“Chronic Lyme Disease Symptoms Not Helped by Intensive Anti-
biotic Treatment.”
St. Martin’s Press published Polly Murray’s book,
The Widening
Circle
, in 1996, and attorney Ira Mauer won a medical malpractice
case for a client who was harmed because she was not informed of
a positive Lyme test. New support groups sprang up in Alabama,
Arizona, and Nevada. Recognition of Lyme was spreading along
with the disease.
National efforts build
In spite of all the efforts and impact of support groups and
medical conferences, people still felt the lack of an all-inclusive na-
tional group to unite patients. The Lyme Alliance of South Central
Michigan decided to go national as Lyme Alliance. They called on
patients to vote for their top issues, and recruited board members
from across the country.
By 1998, many groups offered educational videos and tapes. The
Lyme Disease Foundation produced award-winning videos for
children. The LDA of New Jersey videoed IGeneX Labs president
Nick Harris talking about testing. The Ohio LDA sold tapes of its
successful 1997 conference.
Not everyone worked with a group. Dolly Curtis, a Connecticut
entrepreneur, sold videos of her interviews with Lyme experts
and played them on public TV. Steve Nostrum, founder of Lyme
Borrelia
Out-Reach in Massachusetts, had been providing referrals
and counseling since 1987. He hosted and produced a monthly
cable program on Lyme and sold the videotapes to support his
nonprofit.
Eleven groups published newsletters, including one in Australia
and one in Germany. New support groups started up in Con-
necticut, Louisiana and Pennsylvania.
Enter the vaccine
When the FDA approved the LymeRIX vaccine in 1998, it in-
vigorated advocacy efforts by the Lyme community. The LDF and
Ted Kennedy talks to Evan White, who was so disabled by Lyme that
he could barely speak, during the Senate hearing in 2003. Evan’s
mother, Ruchana, interpreted for her son.
R. White photo
Advocate Ken Fordyce and Lyme pediatric neurologist Dorothy
Pietrucha celebrate at an early “Masquerade” fundraiser for New Jersey
Lyme Disease Association, which later became the national LDA. Ken’s
wife, Kerry, was president of the organization before Pat Smith was
invited to take over.
Ken Fordyce photo
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