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From a Patient

In 2006 the previous Lyme disease guidelines were issued; then in 2009, the IDSA did a review and concluded they were fine as is and made no changes, despite all the objections from patients and doctors.  In 2016, the guidelines were reviewed again by the IDSA and in 2019 a draft of new guidelines was issued.  They are essentially the same as in 2006.  The patients said to be involved this time are not identified, presumably because their credentials to represent the patient community were not good.  Patient representatives should be selected by the patient community not those who are preparing the guidelines.  And their names made public.  The doctors who have vast experience with later stage cases were totally excluded, in the most egregious failing.

Therefore, IDSA attempts to show that these new Lyme guidelines comply with standards for fairness and objectivity are window dressing only.  Does the IDSA think that no useful scientific information has been produced since 2006 that would require changes?  This is static science that learns nothing new.  But in fact, there have been new developments that were ignored. Your literature review included papers that go back as far as 1985 yet left out many important papers that were published since 1985.  This is even more anti-science to say that nothing useful has been learned in 35 years that alters our understanding!  What would you say about any scientific field where there has been no improvement in thirty-five years?  The bottom line is that you conducted an arbitrary and biased survey in 2006 and it is still arbitrary now, with papers chosen to support a predetermined result.

That Lyme disease can persist has been demonstrated in peer reviewed papers that were ignored by IDSA.  This would require different treatment than what works for many cases of acute disease and shows that chronic Lyme has a microbiological explanation.  Added to that is the evidence of a great number of patients who are still sick from the same symptoms.  To refuse to recognize this and insist that no further treatment for an infectious disease is necessary is truly malpractice on a national scale.  It dooms patients and interferes with practitioners who help them.  Better treatments are surely needed for these patients, and there are hundreds of thousands of them now.  This will only increase in the future, adding to the public health burden.

Medical guidelines that exclude those who are forced to use them are bad medicine. A medical society that ignores the most experienced practitioners has failed. A literature survey that is cherry picked to demonstrate no changes are necessary in old guidelines is dishonest.  A 25-year-old testing procedure that is required to get treatment but misses many cases ensures sick people will get no treatment.  The 2019 draft of the Lyme disease guideline by IDSA is a travesty and a public health disaster.  It is unscientific.

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