Speaking from experience: Pamela Weintraub on Lyme disease
Although Lyme disease has been identified in every state, Martha's Vineyard is a major hot spot of the disease, according to Pamela Weintraub, author of "Cure Unknown: Inside the Lyme Epidemic." Published in 2008 by St. Martin's Press, "Cure Unknown" has been called "The definitive book about Lyme disease."
A journalist by training and currently a senior editor at Discover magazine, Ms. Weintraub has covered science and biomedicine for the national media for more than 25 years. She was editor in chief of OMNI and consulting editor at Psychology Today.
Ms. Weintraub will speak about her book and the disease at the Harbor View Hotel on Monday, May 18, at 6:30 pm. The event is sponsored by the Martha's Vineyard Lyme Disease Association.
She became aware of the seriousness of Lyme disease after she moved to a house adjacent to a deer-filled forest in Chappaqua, N.Y., in the early 1990s. She, her husband, and their two young sons began to have vague headaches, joint pains, and weariness, which they attributed at first to stress. Over the next few years, their elder son, Jason, an athletic child and teen, became increasingly ill. Eventually, he became so sick he was unable to attend school and spent much of his time easing his pain by soaking in a hot bath. Various doctors ascribed his illness to everything from a psychological desire to get out of school (in fact, one high school counselor advised his mother to get his hair cut) to parvo virus.
After seeking an answer for years, Jason finally tested positive for Lyme disease. It was only with antibiotic treatment for tick-borne bacterial infection that he finally began to get well.
Looking around, Ms. Weintraub realized that there were many missed diagnoses in her Lyme-endemic community, and as a science journalist she began to research what was going on. That was the start of a six-year investigation into the medical and political disease of Lyme.
She discovered a controversy unlike any other in modern medical annals. Even the definition of the disease, its cause, and its treatment is controversial.
Recently, researchers have come to an agreement of sorts that what is identified in a patient as Lyme disease may sometimes be more than one tick-borne disease. A victim may be suffering from babesiosis, anaplasmosis, or other as yet unidentified illnesses caused by tick-borne infections.
In her foreword to "Cure Unknown," Hillary Johnson, author of "Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic," writes, "The tragedy of contested diseases stems not from any conspiracy on the ground as Weintraub, who has had years to contemplate the matter, points out. Instead these tragedies result from a 'perfect storm,' as she describes it, of flawed science, medical hubris, and moneyed interests."