A polemic on Lyme Disease
Before Wednesday's radio show, I watched on DVD Under Our Skin, the film about Lyme disease by Andy Abrahams Wilson, the brother of a woman who has the disease. Wilson was a guest on Midday today by telephone from California. (You can listen to a podcast of the show by visiting the WYPR web site.)
Wilson's film will be screened at The Senator Theater in Baltimore, starting Friday. You can get information about screenings on the film's web site.
Wilson has made a compelling and disturbing film, and it is beautifully shot, with a strong musical score -- and no narration, and the lack of narration is not a plus. Without the voice of a story-teller, Wilson moves the camera from Lyme sufferer to Lyme sufferer, from doctor to doctor (including one researching Lyme in the basement of his house) to the occasional (dismissively quoted in brief) expert at Yale or UConn -- no one from Johns Hopkins -- back to the sufferers, and then there are collages of people -- never identified -- who claim they suffer from "chronic Lyme disease" and that their doctors either refused to treat them for it or told them they needed to see a psychiatrist.
This is not a documentary. A documentary suggests journalism. There's not much in the way of journalism here, nothing you might call objective, detached, skeptical inquisition. The New York Times refered to Under Our Skin as a polemic, and that's exactly it. Wilson's targets are the doctors and research scientists who say there is no evidence that Lyme disease is chronic and who believe that long-course antibiotic treatments have not been proven effective in arresting the disease and making its victims healthy again. The film sets out to discredit the Infectious Diseases Society of America, which has declared that chronic Lyme disease does not exist. Wilson's claim that the doctors who wrote the IDSA's treatment guidelines for Lyme have conflicts of interest is just that -- a claim, and the charge is not effectively supported. Under Our Skin is full of suspicions, assertions and anecdotes; it's low on science and objectivity. That doesn't work -- in fact, borders on irresponsible -- when you're telling a medical story.
This is the kind of media "coverage" of Lyme disease that the New England Journal of Medicine criticized in a 2008 article: "The media frequently disregard complex scientific data in favor of testimonials about patients suffering from purported chronic Lyme disease and may even question the competence of clinicians who are reluctant to diagnose chronic Lyme disease. All these factors have contributed to a great deal of public confusion with little appreciation of the serious harm caused to many patients who have received a misdiagnosis and have been inappropriately treated."
Had Wilson presented the controversy over whether Lyme is chronic and whether long-term use of antibiotics is effective -- had he explored that and presented both sides -- then I would call his film a public service. In that it draws attention to Lyme disease, the most common vector-borne disease in the nation and spreading each year as ticks bite into humans, Under Our Skin deserves props. But it takes a long detour to defend what current credible science dismisses and in the process pretty much goes off a cliff.
If you see the film, make sure you read the following excerpts of letters I received early today in preparation for the radio show. The first is from Dr. Paul G. Auwaerter, clinical director of the Division of Infectious Diseases at Johns Hopkins University School of Medicine, and the second is from Diana Olson, vice president of communications for the IDSA.
Dr. Auwaerter, of Hopkins:
"I see the effects of misdiagnosed Lyme disease frequently (as patients actually have conditions such as fibromyalgia, multiple sclerosis, Parkinson's Disease, and many others) who are not well served by taking antibiotics for months and years for fears of persistent infection that are not substantiated by any good evidence. Well-controlled scientific studies have not shown any durable benefit from long-term antibiotics compared to placebo, and importantly these studies show rates of improvement in the placebo arm of 30 percent or higher. therefore, ask for proof from these people that they are doing better than 30 percent with their treatments. They may say so from a testimonial basis, but they have no evidence published in quality medical journals."
Ms. Olson, quoting from a recent letter on Lyme disease from IDSA:
"The concept of Lyme disease as a chronic condition requiring long-term antibiotic therapy is not shared by the vast majority of the medical community and relies on questionable scientific evidence. Furthermore, long-term antibiotic therapy poses substantial risks to the community and the patient and can even be fatal.
Lyme disease is a real and growing public health threat. Patients with Lyme disease are frequently misdiagnosed. However, IDSA’s concern is with the concept of chronic Lyme disease.Self-described “Lyme-literate” clinicians believe that the Lyme disease bacteria, Borrelia burgdorferi, can survive conventional antibiotic therapy (usually 10 to 28 days of oral antibiotics) and become a chronic infection. Therefore, they claim, patients must take antibiotics for months or even years in order to fully eradicate the infection.
The vast majority of scientific evidence does not support this view. Not a single well designed, reproducible study to date has found B. burgdorferi in human patients following conventional antibiotic therapy. This casts doubt on the basic premise of long-term antibiotic therapy. (The National Institute of Allergy and Infectious Diseases has a review of several studies on its web site: http://www3.niaid.nih.gov/topics/lymeDisease/research/antibiotic.htm.)Some patients do improve while taking long-term antibiotics. But in studies sponsored by the National Institutes of Health, patients receiving placebo improved at about the same rate as those receiving antibiotics. Also, some antibiotics have anti-inflammatory or neuroprotective “feel-good” side effects. These properties are likely responsible for the improvements some patients experienced in some studies.
In addition to providing no proven benefit, the risks of exposing patients to long courses of antibiotics are substantial. Patients often experience adverse reactions to the drugs. In fact, some of the symptoms that the “Lyme-literate” community attributes to chronic Lyme disease, such as fatigue and mood swings, may be adverse reactions to the antibiotics. In addition, infections in the catheter used to deliver intravenous antibiotics are common and have led to life-threatening bloodstream infections. There are many anecdotal accounts of serious adverse reactions. In addition, according to one report published in the peer-reviewed literature, a 30-year-old woman died from an infected catheter after undergoing inappropriate intravenous antibiotic therapy for more than two years.
The risks of inappropriate antibiotic therapy go beyond the individual patient. Antibiotic-resistant “superbugs” such as methicillin-resistant Staphylococcus aureus (MRSA) are on the rise in part because of the inappropriate use of antibiotics. Long-term antibiotic therapy for Lyme disease only makes the problem worse, without any evidence of benefit.
Many patients credit long-term antibiotic therapy for their miraculous recoveries from debilitating fatigue, pain, headaches, concentration problems, and other symptoms. There is no doubt these patients were suffering. But the question is whether Lyme disease was responsible for their suffering. Several studies from Lyme disease clinics at major universities have found that most patients who came to these clinics with a previous diagnosis of chronic Lyme disease did not have Lyme disease at all, but actually had something else, such as rheumatoid arthritis or other autoimmune disorders, fibromyalgia, or depression—conditions that need treatment with something other than antibiotics.
Diagnosing patients with subjective, nonspecific symptoms such as fatigue, pain, and difficulty concentrating can be a difficult and frustrating experience for both the patient and the clinician. Most frustrating are the cases that don’t have a clear cause after a thorough examination and an exhaustive battery of tests. IDSA does not have all the answers for why some patients are suffering. Even in the 21st century, medicine is sometimes an inexact and imperfect science.When patients are left seeking answers, a window of opportunity opens for unscrupulous clinicians. These clinicians can earn substantial amounts of money administering long-term antibiotic therapy. Many “Lyme-literate” clinicians back up their diagnosis with tests that are unproven or have not been approved by the Food and Drug Administration for that purpose—a practice that has drawn a warning from the Centers for Disease Control and Prevention. (See http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5405a6.htm.)
For vulnerable patients, the diagnosis feels like deliverance from their suffering. For far too many patients, the diagnosis is false.
If sound evidence emerges that Lyme disease is a chronic condition that can be successfully treated with long-term antibiotics, IDSA would gladly accept it, if it would help physicians treat their patients. The burden of proof rests with those who make this claim. Until more reliable evidence emerges, IDSA regards the theory of chronic Lyme disease infection as speculative at best, and we consider long-term antibiotic therapy to be more harmful than beneficial. Lyme and other tick-borne diseases are a serious and growing public health threat, and we support efforts to improve prevention and education and foster appropriate research. However, news coverage that support the theory of chronic Lyme disease and long-term antibiotic therapy is not in the best interest of patients or public health.






