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On Chronic Lyme

Some patients diagnosed with Lyme do not feel better after standard antibiotic treatment
By
Editorial

After nearly two decades of debate there is no resolution about whether long-term Lyme disease exists. What is clear is that some patients diagnosed with Lyme do not feel better after standard antibiotic treatment. This has led some physicians to prescribe exceedingly long courses of medication, which has led, in a few cases, to investigations for misconduct by the New York State Department of Health. A bill that would help protect doctors under these circumstances has been passed by the State Legislature and awaits Gov. Andrew M. Cuomo’s signature.

On first look, the bill appears to make sense. It would free doctors from the threat of investigation solely on the grounds that they might have treated patients in a way not “universally accepted” by the medical profession. However, as written, the legislation gives individual medical practitioners too much latitude to, in effect, experiment with unproven treatments without safeguards, control groups, or adequate disclosure.

Related legislation that seeks to make insurers cover more of the cost of long-term tick-borne illness is said to be nearing completion in Albany. This is something that ought to happen, provided it does not provide a carve-out for those who would try untested treatments on patients without their informed consent or outside of a clinical research setting.

It is becoming evident, as recent scientific studies have suggested, that New York’s ticks are likely to be carriers of several pathogens, not just the one that causes Lyme disease. Researchers have begun to suspect that other bacteria or viruses carried by ticks may actually be why many of those treated for Lyme disease feel chronically ill long after their antibiotics run out. It is also being reported that the drugs used against Lyme are not necessarily effective against these co-infections. As a result, well-meaning doctors could well be ordering the wrong drugs or prescribing them for lengths of time that carry their own risks.

One of the new bill’s sponsors, Assemblywoman Didi Barrett, told Northeast Public Radio recently that the specter of multiple diseases in a single tick was a good reason why the governor should sign the bill. “It’s more important in legislation like ours that just passed that doctors have the ability and the opportunity without risk of someone looking over their shoulder to make the best decisions possible for their patients,” she said. That may make a good sound bite, but it is bad science.

Looking over one’s doctor’s shoulder with regard to standard practices and in the form of peer review is precisely how modern medicine is supposed to work. Cowboys may have a place on the range but not in your primary provider’s office. The bill, though honorable in intent, is too broad and not yet ready for the governor’s signature.

 

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