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2014 Volume 26 Number 1
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months without a board meeting, but we managed to put on
annual medical conferences and patient forums around California.
We also produced
The Lyme Times
fairly regularly and it soon had a
national following. People told us they read it from cover to cover
as soon as it arrived. One patient wrote us, “
The Lyme Times
is my
bible.”
We were a bootstrap organization. We educated ourselves and
met other movers and shakers by attending the LDF’s annual
medical conferences. Our own first symposium was held at a
winery, a beautiful garden setting used for weddings. The tiny
white folding chairs were more suitable for an hour-long wedding
than for an all-day medical meeting, but the weather was perfect,
the food exceptional and people were good sports. Our faculty in-
cluded Joe Burrascano and John Drulle, who flew out from the
East Coast on their own dime. Other speakers were CDPH Senior
Public Health Biologist Jim Clover who liked to travel around Cal-
ifornia collecting ticks; UC Berkeley entomologist Robert Lane,
who was studying ticks and wildlife in my back yard; Ross Ritter,
a Physician’s Assistant and Jim Katzel, MD, who treated Lyme in
a nearby rural clinic. My own physician, Paul Lavoie, chaired the
meeting.
Soon U.C. Berkeley graduate Jeannie Salmon joined our cause
and guided us through the application for IRS non-profit status.
Linda became what we called my “partner in Lyme,” and together
we ran the organization. By 1990
The Lyme Times
reported there
were eight support groups in Wisconsin, seven in California,
and a few in several other states, including Maryland, Missouri,
Michigan, Nebraska, and Pennsylvania. We published a list of six
newsletters besides
The Lyme Times
, which by then we had trans-
formed into a 32-page newsprint journal. Betty Gross, founder of
one of the nation’s first support groups in Westchester, NY, called
The Lyme Times
the “Tiffany’s” of Lyme newsletters.
NJ and NY mobilize
Lyme hit New Jersey hard, and patients there organized early. In
1991, 40 members of the NJ Lyme Disease Coalition (NJLDC) met
with the NJ governor and helped pass legislation to put warning
signs in parks, among other things. This was another first. The Co-
alition was also instrumental in obtaining an hour-long special on
television. In New York, the National Lyme Community Research
Initiative (NLCRI), dedicated itself to finding a cure. Their initial
plan was to conduct clinical trials. In 1992,
The Lyme Times
listed
62 support groups in 18 states.
The spectrum of Lyme disease was enlarging, and if doctors
didn’t know it, patients did. Recognizing this gap, our LDRC
group held another medical conference in Ukiah, CA. The newly
formed Lyme Disease Coalition of Minnesota organized a meeting
at which Columbia University researcher Brian Fallon told more
than 170 medical professionals that 47% of 193 seropositive pa-
tients had been misdiagnosed as having psychiatric problems
before being diagnosed with Lyme disease. Seventy-five percent
had symptoms of major depression. For people who believed
Lyme consisted mainly of a rash and a swollen knee, this was eye-
opening. Six other physicians and researchers, including Willy
Burgdorfer, gave talks. Patient groups were taking the lead in edu-
cating healthcare providers.
State legislative action
Politically, we were all growing. With help from an assem-
blywoman, the Lyme Disease Association of New Jersey (LDANJ)
pushed their legislature to pass a bill requiring Lyme education for
teachers and health professionals in endemic areas. LDANJ started
to organize professional seminars to allow school districts to meet
the requirements of the law.
All this activity was encouraging, but as New York patient
Richard Lynch, a director of NLCRI, reminded the patient com-
munity, “We are no nearer to a cure for chronic Lyme than we were
five years ago.”
“Although these research efforts are unquestionably of great im-
portance, we must keep in mind that they have nothing to do with
what we already-infected Lyme patients need most: research into
the etiology of chronic Lyme, and ultimately a silver bullet cure.”
Lynch called on patients to up the ante, to prompt Congress to
convene hearings on the issue of persistent infection after “appro-
priate” treatment. He urged people to write to the National In-
stitutes of Health (NIH) demanding that they commit more re-
sources to finding a cure. He proposed a nationwide committee
to address the problem that “no coherent message is being put
forward by those of us in contact with the media.”
The Internet
The Lyme world changed dramatically when Lehigh University
student Marc Gabriel created the Lyme Disease Electronic Mail
Network, working with others at the Lyme Disease Network of
New Jersey (LDNNJ), especially Bill and Carol Stolow. “I did it
because I'm tired of seeing people suffer the consequences of ig-
norance,” Marc said. He was overwhelmed by the huge response
to his free, periodic electronic newsletter. Another group lobbied
to create a public “usenet” site where people could talk with each
other.
Linda Hildebrand, Phyllis Mervine, and Jeannie Salmon, a recent
business school graduate, worked together to achieve nonprofit
status for LDRC.
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