Photo by Kristi Nelson
Lyme disease patient Claire Culver is shown in
her "office" with four months' worth of empty pill bottles last week at
her Gatlinburg home. These bottles are just for her prescriptions; her
husband, Michael, also has been diagnosed with the tick-transmitted
illness. (Kristi Nelson/News Sentinel)
Editor-in-chief Phyllis Mervine reflects on topics covered in the current issue of The Lyme Times.
It’s exciting to be on the national stage. The big question is whether any good will result.
In April, TV show host Dr. Phil did a segment on Lyme disease,
covered in this issue. Although he asked Stephanie once too often
whether she was “faking it,” we have to credit him for bringing Lyme
disease sympathetically to his huge national audience. We are grateful
to the young women – Kathy, Stephanie and Brooke – and to Dr. Bhakta,
for sharing exclusive details for our story.
In May, ABC’s 20/20 featured a teenager with Lyme. Then came
Congressman Chris Gibson’s hearing in New York and a subcommittee
hearing in Washington, DC, on the global impact of Lyme disease, hosted
by Congressman Chris Smith. We will devote the next issue of
The Lyme Times to the hearings.
In this issue, Dr. Joe Burrascano takes us back in a retrospective
view of Lyme, abridged from a talk he gave at last year’s ILADS
conference. Calling himself an “old timer,” he recalls the beginnings of
the epidemic, before Willy Burgdorfer’s remarkable discovery, when the
Connecticut Health Department sent a young rheumatologist named Allen
Steere to investigate a cluster of juvenile rheumatoid arthritis in Old
Lyme. A fateful moment and one that has shaped history.
As another old-timer, I’ll never forget a humorous moment at
Kennedy’s 1993 hearing when a light bulb seemed to go off in one
senator’s brain. Expecting the “experts” to agree, and after listening
to Dr. Steere and Dr. Burrascano expound their opposing views on Lyme
disease, he remarked with a puzzled expression, “It seems you two are
not saying the same thing.”
Being informed of the hearing at the last minute, patients bombarded
Kennedy’s office with letters and phone calls to bring more than one
monolithic view to the table. In response, Kennedy invited Burrascano,
Lyme Disease Foundation’s Karen Forschner, patient Carl Brenner, and a
terribly sick teenager, Evan White, who had to use hand signs because he
could not speak. We again saw White – now thankfully recovered – at
Congressman Smith’s hearing, where he described his former self as a
“vegetable.” Steere admitted he had never seen a case like his.
Birthdays, especially advanced ones, have a way of making us look
back. So do certain other events – like my Jefferson Award for public
service for my Lyme work. It was hard to believe I had put in 25 years
of patient advocacy – a career that before Lyme I had never envisioned
for myself.
Sometimes I look through stacks of old Lyme Times and am amazed. I
remember what a bootstrap operation we had. How my colleague Linda and I
used to put our heads down on our desks, we felt so ill. But at the
same time we were driven by the enormous need people had for information
and for a connection.
This was before the Internet. People depended on
The Lyme Times as their link to the wider community, and we tried to provide that.
I never dreamed I would be doing this 25 years later, or indeed, that
it would still be so sorely needed. When will the NIH and CDC step up
to their responsibility as guardians of the public health? Soon, I hope.
The Lyme Times is published four time a year and is mailed free to members of LymeDisease.org. Click here for information about joining.