Seeking the Cure Unknown: A Report from the Lymelands by Weintraub Pamela

Author:Weintraub, Pamela [Weintraub, Pamela]
Language: eng
Format: epub
Publisher: St. Martin's Press
Published: 2013-07-09T00:00:00+00:00

Still Doing Hard Time

Reviewing the research, it is possible to feel glimmerings of hope as the big questions are tackled and answers seem closer at hand. Since 2009, a lot has changed—but it also remains the same. For patients on the ground, passing through the Lymelands can still feel like doing hard time. I asked hundreds of Lyme patients who are my Facebook friends or otherwise connected to me on the Web or in real life to describe the day-to-day. A question at the top of my list: Has the environment for Lyme patients improved? Are things better or worse in 2013?

“I think maybe a little better, but only because of patient advocacy,” says Vicki Petsy, a Lyme disease activist from Coxs Creek, Kentucky.

“Worse, because doctors are running scared due to the Dr. Jones situation and the danger of prescribing appropriate treatment for chronic Lyme,” says Peggy Munson, the novelist and poet who is also author of Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome.

Better, says Bonnie Garvin Friedman of Trumbull Connecticut. “I have been on the Lyme disease front for nearly twenty years and worked in three Lyme medical practices. I also co-led a support group. I believe that there is more information and support available now than ever. I am thankful for the wonderful Lyme organizations and the training of new LLMDs.”

Not so good, says Stephen Amsden of Iverness, Florida. “Awareness among the afflicted is improving, but the dogged, dogmatic response of denial from the medical community is becoming, at best, a form of criminal negligence. It seems to always involve the bottom line.”

Psychiatric and emotional “explanations for Lyme have become more entrenched, and the smear tactics against patients and patient advocacy more intense. So that makes things worse,” says Angela Kennedy, a social scientist from Essex, England, who has written a book called Authors of Our Own Misfortune? The Problems with Psychogenic Explanations for Physical Illnesses, published by Village Digital Press.

“More doctors are being forced to close their practices or not to take insurance due to fear of persecution,” says Caryn Jaffe of Columbia, Maryland.

Julie Ridi of Holland, Michigan, sums it up like this: “With the speed of the spread of this disease, and most people believing what their doctors say out of hand, I feel, as the old saying goes, ‘Things are getting better, but they’re getting worse a whole lot faster.’”

Responses went on in this vein. Despite advancements in science, the disease is “really only accepted in the alternate universe we have created,” Elizabeth Phillips, a businesswoman from upstate New York, said, summing it up for most.

Within that subversive space—which itself inhabits the often-edgy integrative medicine world—the best of the Lyme doctors have evolved. My own physician, Richard Horowitz of Hyde Park, New York, focuses on the myriad of reasons that chronic patients stay sick—Lyme, Babesia, and other coinfections are just a few. Long-untreated, late-disseminated infection followed by aggressive antibiotics, he has found, can derail the immune system, destabilize hormones, challenge the well-functioning

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