THE LYME TIMES: Looking back, looking forward
24th August 2012
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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.
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