Lyme disease is real
Lyme disease is an infection caused by Borrelia burgdorferi bacteria. It is transmitted to humans through the bite of infected blacklegged ticks. According to the CDC, “typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system.” A short course of antibiotics is usually curative.
Some patients continue to have symptoms; this is recognized as post-treatment Lyme disease syndrome. It is not thought to be due to an active infection, and there is no effective treatment.
Chronic Lyme disease (CLD) is not real
CLD is a made-up diagnosis. So-called Lyme literate medical doctors (LLMDs) blame it for all kinds of vague, unexplained symptoms. Their list of symptoms is so extensive that they could justify diagnosing CLD in pretty much anyone. According to an article in Huffpost by Suzy Cohen, CLD can cause
“fatigue, stiff neck, headaches, light and sound sensitivity, tinnitus (ringing in the ears), anemia, dizziness, joint and muscle pain, brain fog, tingling, numbness and burning sensations of the extremities, memory and concentration problems, difficulties with sleep (both falling asleep and frequent awakening), chest pain and palpitations and/or psychiatric symptoms like depression and anxiety.”
Some LLMDs are licensed medical doctors; some are unlicensed alternative practitioners. They trust non-validated, unreliable tests from questionable labs. Accepting a bogus CLD diagnosis may keep patients from seeking a true diagnosis for a treatable disease. That’s bad enough, but it gets worse. Most LLMDs prescribe prolonged courses of antibiotics. A study published in the prestigious New England Journal of Medicine in 2016 confirmed other studies showing no advantage to long-term antibiotics. An accompanying editorial said that long courses of antibiotics were not the answer, and that future research should pursue other strategies. But some 500 LLMDs continue to offer unproven and even disproven treatments including long-term antibiotics, ozone, and vitamins. They are killing patients, and they have been protected from prosecution by misguided legislation.
LLMDs have formed an association called the International Lyme and Associated Diseases Society (ILADS) claiming that “Most cases of chronic Lyme disease require an extended course of antibiotic therapy to achieve symptomatic relief” and “many patients with chronic Lyme disease require prolonged treatment until the patient is symptom-free.”
Harms, malpractice, and deaths
LLMDs are convinced they are helping patients; but in reality, they are killing some of them. Their thinking is akin to that of early doctors who practiced bloodletting to balance the humors; they were convinced they were helping their patients when in reality they were harming them and even killing some of them. That’s why science is so important.
“Internal government documents obtained by Bloomberg Businessweek through a Freedom of Information Act request show that physicians at the CDC are aware of malpractice allegations at a constellation of private clinics. Since around 2013 they’ve tracked dozens of reports of significant harm, including several deaths, that were the direct consequence of procedures ordered or administered by LLMDs.”
LLMDs offer intravenous treatments and frequently install central line catheters (venous ports) to avoid the pain and inconvenience of multiple venipunctures (several treatments per week are often recommended). The ports can become infected. The Bloomberg story describes how one patient died of MRSA, an aggressive staph infection resistant to most antibiotics. In 2017 the CDC published a collection of reports of patients who had required hospitalization and/or had died from complications of unproven treatments given by LLMDs.
Steven Salzberg doubts that LLMDs will listen to the evidence. They have gone too far down the rabbit hole. They enjoy the positive feedback from patients who are grateful to finally have a diagnosis, albeit a bogus one. Reports of subjective improvement are impressive to doctors and patients alike, even when it is temporary and when there is no objective evidence of improvement.
Major science-based medical groups have spoken out against diagnosing CLD and against prolonged antibiotic therapy. These include the Infectious Diseases Society of America (IDSA), the American Academy of Neurology, the Centers for Disease Control and Prevention (CDC), and the National Institutes of Health (NIH).
Legislation has protected LLMDs from disciplinary action, as documented by Jann Bellamy on the Science-Based Medicine blog. She calls it “legislative alchemy.” Legitimate researchers who refused to support the diagnosis of CLD have been harassed, stalked, and even received death threats from patients and patient advocacy groups.
Conclusion: CLD is bogus
As I concluded in my SBM article, “The belief that chronic Lyme disease exists is not supported by the evidence. It is a disservice to patients with unexplained symptoms to paste that label on them and treat them with potentially harmful long-term antibiotics. They are suffering, and they deserve our compassion and the best that science-based medicine has to offer, not bogus treatments by charlatans or well-meaning but misguided LLMDs.”
As Jann Bellamy’s article on legislative alchemy shows, LLMDs in many jurisdictions have essentially been given a get-out-of-jail-free card allowing them to kill patients without repercussions. Misguided legislation has been allowed to subvert good science-based medicine. That was a terrible mistake, but it will be next to impossible to put that genie back in the bottle. We need more science-based medical providers and more citizens trained in critical thinking skills. Don’t hold your breath!
This article was originally published as a SkepDoc’s Corner column on the CSI website.