Tuesday, June 17, 2008
In the war of information on Lyme disease, patient activist groups have started from a marked disadvantage to the medical establishment in terms of visibility and credibility. That may be changing, and science journalist Pamela Weintraub's new book, "Cure Unknown: Inside the Lyme Epidemic" (St. Martin's Press), could be one reason.
Weintraub, a senior editor at Discover magazine, uses her family's protracted Lyme odyssey as the jumping off point for an exploration into the history, politics and, predominantly, the patient experience of the tick-borne disease.
In 1993 Weintraub and her family moved to woodsy Chappaqua, N.Y. Soon after, she writes, she, her husband and their two sons all developed persistent fatigue and joint pain that worsened over time. The hardest hit was her older son, who took a medical leave from high school and saw a slew of specialists before one diagnosed Lyme disease in 2000. An infectious-disease expert confirmed the diagnosis, then challenged it later when the boy failed to respond to standard antibiotic treatment.
Other patients she interviewed described similar frustrations.
Weintraub explains what she considers the failings of commercial tests used to diagnose Lyme and attacks the divisiveness in the medical community that she says interferes with finding better treatment.
-- Susan Morse