Lyme Disease Guidelines: is your site for guideline response. Devoted to transparency in Lyme diagnosis and treatment Guidelines

IDSA Online Draft in Protected Format

The IDSA has made review difficult by only offering the draft online in protected format. It cannot be searched by keyword nor can it be printed. Requests for a pdf that can be annotated were met with refusal. If you really want feedback, why did you make the process so difficult?

The IDSA has admitted in its own publication that the two-tiered testing method needs improvement. There is an abundance of research that supports the concept of seronegativity and research shows the two-tiered test to be about 50% accurate and not just in the first few days to weeks following infection. The IDSA fails to acknowledge that but many others do to the point at which laws have been passed in several states requiring physicians to notify patients that a negative test does not mean that they do not have Lyme disease. The diagnosis of Lyme disease should be a CLINICAL one until a better test is developed yet the IDSA does nothing to educate physicians in this regard and offers nothing to the unlucky patients who test falsely negative and go on to develop debilitating symptoms.

Research shows that an EM rash is present in about 50% of cases. Requiring patients in endemic areas to present with an EM rash in order to be tested/treated will result in missing many cases. The ability to define certain areas as “endemic” is limited due to the fact that funding for surveillance has been cut and due to the fact that reported cases lags way behind insurance claims.

Members of the committee that established these guidelines have financial conflicts of interest as noted by Senator Blumenthal in 2008 and as alleged in the ongoing lawsuit Torrey vs. IDSA. Committees charged with the task of establishing medical guidelines should be free of all conflicts of interest. Allowing these conflicts of interest to continue cannot be justified.

Many of the guidelines in this document are based on low levels of evidence and, in some cases, opinion only. There is no research, for example, to support the contention that the tick must remain attached for 36 hours in order to transmit disease. The minimum attachment time has never been established. Some models have shown that 5-7% of the nymph form of ticks transmitted Lyme in less than 24 hours, with one study finding it occurred in as little as 6 hours.

There is no research to support the 3 week treatment recommendation. In fact, there is research that shows that this recommendation fails in about 50% of cases.

Objective manifestations of Lyme disease (such as EM) are often absent. It is inappropriate and incorrect to ignore subjective symptoms when conducting research. It is not done elsewhere in medicine and should not be done in the case of Lyme disease.

There is much evidence to support persistent infection as at least one of the reasons why patients continue to experience symptoms following treatment. The IDSA needs to discontinue the harmful practice of ignoring valid scientific evidence that does not support the opinion that persistent infection does not exist. The IDSA also needs to discontinue the harmful practice of interpreting research findings with confirmation and anchor bias. The only way to achieve better outcomes is remain dedicated to truth and science.

Offering patients with persistent symptoms immunosuppressive drugs in the setting of possible persistent infection violates the promise to first do no harm.

It does not make sense to recommend against tick testing. Even if there is a low risk of transmission from a single tick bite, it is useful for the patient and physician should the patient develop symptoms later. It can also save a money should the patient require diagnostic testing.

There is no evidence to show that a single dose of doxycycline is effective it terms of eradicating Lyme disease. There is considerable evidence to show that it is not sufficient. This recommendation provides patients with a false sense of security and runs the risk of contributing to antibiotic resistant strains of Bb.

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