by Mary Budinger

Columnist Jane Brody wrote a revealing piece about Lyme in the July 15th edition of the New York Times. 

Brody said, “I have encountered enough previously healthy people who have suffered for months or years after initial treatment to suggest that there is often more to this disease than ‘official’ diagnostic and treatment guidelines suggest.”

Because Lyme has become so widespread, just about every large editorial office now has people with Lyme disease, or friends with Lyme disease, and many of these people did not respond to standard protocols.

Late or severe disease requires intravenous antibiotics, Brody wrote. “Although two studies, neither of which was long-term, found that repeated antibiotic treatment did not reverse the pain and altered cognition associated with Lyme disease, the experience of thousands of patients, including Ms. Bean, contradict these findings.” Brody was referring to Constance A. Bean, co-author of the new book “Beating Lyme.

The Infectious Disease Society of America, IDSA, to date has refused to recognize chronic cases of Lyme, cases that persist many months and years after the first onset of symptoms. Brody pointed out that the antitrust lawsuit in Connecticut found some of the IDSA experts had financial interests that could bias their judgment.

Brody revealed that in Minnesota one summer, her own dog got more than 30 deer ticks on his face. “Cases have been reported in every state, with residents of the Northeast, the Great Lakes region, northwestern Washington and parts of California the most frequent victims,” she wrote.

She quoted from the May issue of “Mayo Clinic Proceedings” which concluded doctors everywhere must be alert when dealing with patients who live or travel in areas where Lyme disease is prevalent, and they must be willing to use appropriate antibiotics based on a clinical assessment rather than laboratory findings.

Brody also gave a thumbs up to Pamela Weintraub, a senior editor at Discover magazine, who has produced “a thoroughly researched and well-written account of the disease’s controversial history” in her new book “Cure Unknown: Inside the Lyme Epidemic.”

Weintraub says the public perception of Lyme is changing. “Until recently, coverage of Lyme disease has been flawed because it has been presented as a ‘he said – she said’ kind of fight and the patients have been painted as sick and beleaguered but not knowledgeable,” said Weintraub. “I wanted to reframe that. My book, which included interviews with many mainstream scientists, showed a diversity of viewpoints across academia. Through these documented, journalistic interviews, it becomes apparent that IDSA represents the right wing of mainstream thought, and not its center, and that most mainstream scientists view Lyme disease and its co-infections as complicated and in need of more research – not simple and irrefutably solved as IDSA says. The straightforward nature of the journalism may have helped others in the press to see things differently than in the past.”

It also helps that Weintraub’s book carries the imprimatur of mainstream publishers and can be found in mainstream bookstores like Borders and Barnes & Noble.

Weintraub said two other recent events have also shifted the public perception: the movie “Under Our Skin”, and the antirust lawsuit against IDSA. “You have the Connecticut Attorney General’s investigation and IDSA’s subsequent agreement to unseat their hand-picked panel that writes Lyme treatment guidelines,” added Weintraub. “That was a very big thing. IDSA had said the idea of conflicts was ‘preposterous,’ but people see through that now; they are aware these conflicts of interests do exist. IDSA is just not passing the 'smell test’ on the street anymore.”

IDSA and ILADS, the International Lyme and Associated Diseases Society, have been virtually at war with each other over the recognition of long-term chronic Lyme and long-term treatment with antibiotics. Much of the mainstream reporting to date has been as if covering a ping-pong match, each move and counter move noted, but little recognition of the extent to which Lyme is spreading throughout the United States and the debilitation left in its wake.