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The Lyme Times
LymeDisease.org launched as a patient advocacy group in Northern California
By Nancy Brown
The sidebar box on the 7” x 8 ½” newsprint eight-page booklet
read:
The Lyme Times is the publication of the Lyme Disease Network,
founded in 1989 for the purpose of education and patient support.
The newsletter was launched on a shoestring budget from do-
nations received from a few individuals. Members of that initial
group, including Phyllis Mervine, Linda Hildebrand and Thora
Graves, were personally fighting their own battle against Lyme
disease. Phyllis, still a champion and activist to this day, was the
original editor. Some of the authors for those first editions were Isis
Coble, Vicky Womack, James Katzel, MD, Ray Wiser, MD, Valerie
Novak, MD, and Richard Williams.
Soon after, the Lyme Disease Resource Center (LDRC) was of-
ficially organized and received nonprofit status from the IRS.
The
Lyme Times
continued to be published under its banner. Board
meetings were held in private homes, in hospital meeting rooms,
or restaurants – anywhere someone had a network that could be
Pharmacist Mitch Hoggard and Ray Stricker, MD, share a joke at the
2003 conference in Ukiah. Both currently serve on the LDo board of
directors.
The Early Days
Ukiah volunteers were once the only source of patient support
By Thora Graves
I first met Phyllis
Mervine in late 1988.
Someone wrote to me
about a Lyme disease
support group at the
Mendocino
Com-
munity Hospital in
Ukiah. In those days
there was no Internet,
cell phones, facebook,
etc. All of us had to
search hard to find
others suffering from
this new mysterious
disease.
Phyllis was working
at the hospital clinic
when she started a
newsletter called the
Lyme Times in 1989.
We could not wait for
the next edition. It
was our only means
of getting the latest information. The local libraries did not have
information back then like they have now.
Once I met Phyllis and saw her strength and determination
to get the word out about this new disease, I decided to join the
mission to help educate the public, medical professionals, poli-
ticians, etc., about this mysterious new disease.
In 1989 some of us helped Phyllis form the Lyme Disease Re-
source Center (LDRC). It was greatly needed. So many people were
desperate for information and support. After a while, groups were
formed so patients could support each other. It has never been an
easy time. We all thought for sure there would be a cure for us. For
some, maybe there has but for so many others there has not.
For many years
The Lyme Times
has been the most valued in-
formation available for the Lyme community. The LDRC became
CALDA (California Lyme Disease Association) and eventually
Ly-
meDisease.org
. A lot has happened in the past 25 years, and without
Phyllis and her continued devotion to fighting for the cause we
would not be as far along as we are. We must keep up the fight.
Thora Graves, a volunteer at Lyme events,
was one of LDRC’s original board members
in 1989.
Thora Graves, second from left, attended the book signing event LDRC
held for author Polly Murray (seated left) with Rene Landis and IGeneX
president Nick Harris (right) during the International Conference for
Lyme Borreliosis in San Francisco in 1996.