And finally, the most important roles for the physicians seeing patients who carry a “chronic Lyme” diagnosis are (1) to perform a complete and unbiased evaluation to assess for other causes of the patient’s very real suffering, and (2) to educate in order to protect patients from unproven therapy that will place them at risk for serious infection and death.
Iowa recently passed a law that allows physicians to “expand upon the traditional standards of care for Lyme patients”, provided they get informed consent from the patient and provided that “in the opinion of the licensee, [the treatment] will not result in the direct and proximate death of or serious bodily injury to the patient”. If you don’t believe me, check it out for yourself!
Thanks to the CDC and others (MMWR June 16, 2017) for reminding us that the opinion of a provider, no matter how well-meaning he or she may be, is no guarantee that a protracted course of antibiotics or immunotherapy will not, in fact, lead to “death or serious bodily injury”.
As more states pass laws that protect health care providers from sanctions (or ensure insurance companies must reimburse) for the use of unproven and dangerous therapy for “chronic Lyme disease”, this will become an increasingly important patient safety issue. Publishing periodic case reports or case series of the unintended but devastating consequences of these treatments isn’t enough—we should establish a registry to track these adverse outcomes.