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."
Pamela Weintraub with her eldest son, Jason, who was infected with Lyme disease as a young teen. Photo courtesy Pamela Weintraub
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."
Ms. Weintraub is critical of the cozy and often financially rewarding relationships among researchers and pharmaceutical companies, and takes issue with the restrictive guidelines from the Infectious Diseases Society of America, supported by the Centers for Disease Control and Prevention (CDC). She implores researchers to work together to solve the many mysteries surrounding Lyme. She urges a move away from the polarization that has surrounded the disagreements and dissension.
Believing that Vineyarders should know the important facts about Lyme disease, Ms. Weintraub wants to make sure Islanders are aware of the complexity of the disease and its diagnoses - especially the fact that you can test negative on the standard tests and still have Lyme disease.
According to the peer-reviewed journal Mayo Clinic Proceedings, "The tests are prone to false-negative and false-positive results and can be misleading, especially early in the course of the disease."
The most comprehensive review of the standard Lyme tests comes from Johns Hopkins University. Working with patients from Pennsylvania and Maryland, the Hopkins scientists studied state-of-the-art serology and DNA tests for Lyme and found serious flaws: Most tellingly, when the standard two-step method recommended by the CDC was used on patients with other laboratory evidence of Lyme disease, it was positive between 45 and 77 percent of the time.
In part, this is because at least 100 strains of the Lyme disease spirochete are found in North America (300 worldwide), and different strains may cause different flavors of disease or react differently on the current Lyme tests.
Researchers are hard at work looking at the diversity of strains, she said. Ms. Weintraub wants the public to know about animal studies by Dr. Stephen Barthold indicating that when treatment is delayed, spirochetes can remain in the body, possibly provoking the autoimmune system. "More study is required to see whether this is the cause of chronic Lyme," she states.
Ms. Weintraub will be speaking at the Harbor View Hotel about her book, which is a six-year long investigation into the science and patient experience of Lyme disease. She will also discuss the need to raise awareness of the disease and its possible long-term consequences, and will talk about what Islanders can do to protect themselves and their families.
Once her son Jason was treated for Lyme disease and its co-infections over a few years, he gradually recovered except for a continuing problem with light sensitivity. He graduated from Brown University in 2008, and will pursue an MFA in screenwriting at Boston University in the fall.
Author's Talk with Pamela Weintraub, "Cure Unknown: Inside the Lyme Epidemic," 6:30 pm, Monday, May 18, Harbor View Hotel, Edgartown. For more information, call 508-696-1976 or visit marthasvineyardlyme.org.
The author, Cynthia Riggs, lives in West Tisbury.
