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Here's the link to the article...

One victim's two views of Lyme disease

The deer ticks that cause Lyme disease thrive in forests that abut cleared suburban yards.

(Josh Reynolds for The Boston Globe/file 2007)

By Michael Kenney

September 4, 2008

Cure Unknown: Inside the Lyme Epidemic

By Pamela Weintraub

St. Martin's, 408 pp., $27.95

Head north along the Connecticut River on Route 156, and after crossing into Lyme, Conn., you'll see the deep woods of the Nehantic State Forest shadowing the road.

A few miles ahead is the general store.

A sharp left puts you onto Joshuatown Road, climbing and winding through brooding hills that press against the road.

It is there that the story of Lyme disease began - on Joshuatown Road, where some of the earliest cases were reported in the mid 1970s, and in Nehantic State Forest, where researchers identified the deer ticks that spread the disease.

And it is that crippling, enigmatic disease that science writer Pamela Weintraub explores, with the insight and the passion of a victim - and the wife and mother of victims - in "Cure Unknown."

The "clustering" of cases in that rural area led Yale researcher Allen Steere to suspect that the disease was transmitted by ticks.

The early markers were swollen knees and a red bull's-eye rash.

Researchers also found symptoms that would lead to confusion with chronic fatigue syndrome and fibromyalgia: malaise, fatigue, fever, headache, stiff neck, backache, muscle aches, vomiting, and sore throat.

By the time Weintraub became involved, some 15 years after the initial discoveries, Lyme disease had moved into the controversy mode.

Scientific conferences erupted into shouting matches.

The "heightened emotional pitch" at one, Weintraub writes, made it feel more like "an antiwar protest from the sixties than a forum for research."

"Because I was sick myself," Weintraub writes, "my job as a journalist was complex.

Some of the experts I interviewed would have deemed me suspect had they known my status, so I strived to draw the line between my life and my job."

The professional account is an unending tale of medical infighting and clinical dead ends; the personal story is a compelling one.

Weintraub and her family moved from an apartment in Queens, N.Y., to a house in Chappaqua, N.Y., surrounded by "a fairy-tale forest."

Within months all four family members began to experience early, but unrecognized, symptoms of Lyme disease.

Weintraub describes her son Jason, the most seriously afflicted, as "a young man sick of being sick" after years of remission and relapses.

An underlying problem with Lyme disease is that the spirochetes introduced into the bloodstream by the tick do not remain there but migrate into other tissues where they can remain dormant and undetectable while the original infection is treated, only to reemerge after treatment.

Early diagnosis and treatment are essential, as they are with any disease.

But, writes Weintraub, tests appear to miss a high percentage of cases at that important early state.

By the time the disease has reached an advanced stage, treatment costs can reach $100,000, leading to efforts by insurers to limit or stop coverage.

Lyme disease, as its name suggests, is a disease linked to the environment - thriving in the forests that abut suburban yards.

"A disaster of our own design," as Weintraub puts it.

"Cure Unknown" is a comprehensive account of the present state of Lyme research, but there are several noticeable lapses.

The confusion of rural Lyme with its shoreline neighbor, Old Lyme, may annoy only someone who has tramped the Joshuatown hills and the Nehantic woods.

Of more concern to the interested reader is the lack of even one photograph of the culprit tick.

And some statistics would have been helpful.

For the record, the Centers for Disease Control and Prevention report that Connecticut recorded 51,428 cases between 1993 and 2006, with an incidence of 51 cases per 100,000 in 2006.

In that same year, Massachusetts had an incidence rate of 22.2, New Hampshire 46.9, Rhode Island 28.8, and New York 23.1.

Michael Kenney is a freelance writer who lives in Cambridge.

Copyright 2008 Globe Newspaper Company.

Love, Light, & Health,

My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

Posts: 701 | From Owensboro, KY | Registered: Sep 2005  |  IP: Logged | Report this post to a Moderator

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You must read Pamela's book to get the full impact of everything that has been going on! Ecellent read, which anyone with lyme or anyone they know with it...should read. Thank you, so much Pam and family!
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