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By SUSAN DUNNE | Courant Staff Writer April 30, 2008
Lyme disease was identified and named in Lyme, Conn., in 1975 and has been the focus of political and scientific wrangling, here and nationwide, for years.
A movie that had its premiere during the weekend at the Tribeca Film Festival is sure to reinvigorate the scuffle between the mainstream medical community, which cites the lack of conclusive scientific proof of chronic Lyme disease, and the dissenters, who insist chronic infection exists and treat it with a long-term program of antibiotics.
"Under Our Skin," a documentary by Andy Abrahams Wilson, played Sunday night to a sell-out crowd at the Directors Guild Theater in Manhattan. It was followed by a Q&A with Abrahams Wilson; author Amy Tan, who has been diagnosed with chronic Lyme disease; and Richard Horowitz. Horowitz, a Hyde Park, N.Y., doctor, also appears in the film, which advocates for the existence of chronic Lyme. Horowitz is among those whom Lyme disease activists have dubbed "Lyme-literate" for his belief in and treatment of chronic infection. The discussion was moderated by Robert Bazell of NBC News.
Abrahams Wilson's press kit calls the film "a chilling tale of the pursuit of profit and prestige at the expense of science and very sick patients." In Sunday's audience were Lyme disease activists, who handed out literature and lime-green plastic circle bracelets. The audience gave the film a positive reception. Some cried as they watched and listened to testimony, some of it astonishingly frank, from ill people who have looked outside the medical mainstream for relief from their constant pain and decreased mental and physical functioning after being diagnosed with chronic Lyme.
The mainstream medical viewpoint holds that in almost all cases, Lyme can be treated with a course of antibiotics that usually takes 30 days; that doctors who diagnose chronic Lyme often overlook more likely causes of fatigue, joint pain and neurological deficits; and that long-term antibiotic treatments could be dangerous.
The movie shines a positive light on state Attorney General Richard Blumenthal and two Connecticut doctors, Charles Ray Jones of Hamden and Bernard Raxlen of Stamford, who have been criticized by the mainstream medical community for their views on Lyme. In November 2006, Blumenthal launched an investigation into whether the Infectious Diseases Society of America (IDSA), which supports the mainstream view, had violated antitrust laws in setting new treatment guidelines for Lyme disease by excluding conflicting medical evidence.
Those guidelines have since been adopted by the Centers for Disease Control and Prevention. In the film, Blumenthal tells Abrahams Wilson that the guidelines "may restrict consumer choice, with tremendous implications not only for the patient care but also for the economics of insurance coverage."
The audience liked this segment; a few muted whoops and a smattering of applause greeted Blumenthal's appearance.
Jones, described as "the leading Lyme-literate pediatrician in the U.S.," is a central role in the film. In December, he was sentenced to two years' probation and fined $10,000 for prescribing medicine to two Nevada children by phone, without examining them. On Feb. 20, the probation and fine were delayed while Jones, 81, works through his appeal. In the film, Jones is supported at his hearing by scores of former patients. Another spotlight shines on Elise Brady-Moe, a Newtown Lyme veteran. The film shows Brady-Moe giving birth and praying that her son does not test positive for the Borrelia burgdorferi spyrochete.
In the film, the mainstream view is represented by, among others, Dr. Eugene Shapiro, a Yale pediatrician specializing in infectious diseases, and Dr. Lawrence Zemel, chief of rheumatology at the Connecticut Children's Medical Center in Hartford and professor at the University of Connecticut School of Medicine.
Shapiro said Tuesday that he and Gary Wormser of New York Medical College, whom he knows from their work on the IDSA guidelines, debated among themselves before deciding to participate in the film. "Honestly, it was pretty clear that they were going to do what they were going to do," Shapiro said. "All we could do is try."
In an interview, Zemel said he, too, knew the focus of the film was going to be in favor of chronic Lyme, but he participated because "somebody had to provide some balance."
Zemel said his belief is "there are certainly a number of patients who continue to have chronic symptoms. Their symptoms are real, but that is no indication of chronic infection."
Shapiro said "doctors aren't good at dealing with medically unexplained symptoms. When you say, 'This isn't Lyme disease,' the patient may think you are saying, 'You aren't suffering.'"
People who are suffering make up the soul of the movie. Jordan Fisher Smith, a park ranger and author from California; Dana Walsh, a U2 roadie from Seattle; and former Colorado Rockies up-and-comer Ben Petrick tell heartfelt stories about how their lives were disrupted by chronic disease.
The most graphic narrative comes from Mandy Hughes. The pretty Orlando bride is skilled at hiding the evidence of her physical difficulties, except on bad days, when her hands and whole body curl up like someone in advanced stages of arthritis. In the film, she lets the audience watch as she goes through an intense treatment program prescribed by a controversial doctor.
These patients' philosophy is voiced by Fisher Smith: "The folk myth is that antibiotics are bad for you. They can't be bad for you if you have a fatal infection."
The film is bound to either captivate or annoy audiences, depending on their beliefs. As Abrahams Wilson said at the Q&A: "You also tend to believe what's in your interests."
For details about the film, visit www.underourskin.com. For details about the film festival, visit tribecafilmfestival.org.
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anneke, THANKS FOR POSTING ... OUTSTANDING REVIEW!! very informative; can't wait to write a thank you on this one and my opinion to ISDA comments!
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jamescase20
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I am so mad. thats all I can say, and its NOT at you .
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
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It is about time the Hartford Courant published something that isn't completely skewed against Chronic Lyme.
The fact that they even covered this is amazing, the fact that it wasn't William Hathaway is encouraging, and overall it wasn't too bad!
Thanks so much for posting it.
As I keep saying, and will continue to say, the tide is turning.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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METALLlC BLUE
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Member # 6628
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Holy Jesus, the Hartford Courant actually have written an unbiased article for once. They're such morons down there most of the time. I know because I lived in CT, and now I live in MA. I still follow the courant, and almost every article is "anti-Chronic Lyme" and Pro-IDSA. It's like Dems vs. Reps!
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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Well, we have such low expectations of this newspaper, that anything that is even marginal looks good (or better). But frankly, this is only somewhat less biased than the usual Hathaway baloney. She inaccurately described the Jones situation, for example. She lets Shapiro etc sound like they know what they are talking about. She doesn't even touch the question of why there is any controversy at all with treating infectious diseases with antibiotics, or the real examples of other chronic diseases, including infectious ones.
Not sure a thank you to the reporter is in order. Best I can do is to be somewhat encouraged that the paper has more than one reporter to cover lyme issues. But no one should think this shows a change of heart in Hartford, home of the rapacious insurance industry.
Posts: 8430 | From Not available | Registered: Oct 2000
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Completely agree with lou. Glad to see coverage of the film, but this reporter interviewed only Shapiro and Zemel. Overall slant is that patients in the film and the audience are suffering but deluded, that the film is biased against reason and science. "All we could do is try" says Shapiro.
It's not an honest appraisal imo. But I wouldn't expect anything less (more) from this paper. The exposure is still great though.
Posts: 621 | From US | Registered: Jun 2006
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-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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and my opinion to ISDA comments! ![[cussing]](graemlins/cussing.gif)
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mtree![[Roll Eyes]](rolleyes.gif)
We'll give her credit for spelling Lyme correctly! 
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Hey, and where can I complain to? I'd like to copy and paste/send this to someone.![[Razz]](tongue.gif)
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