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12

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.