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GLOBAL LYME ALLIANCE: GENERAL COMMENTS AND CONCLUSIONS

General comments on entire draft, pages 2-69, lines 45-1605:

Throughout the 2019 draft revised guidelines, an overriding concern is the generation of false positive diagnoses and misattribution of symptoms to Lyme disease. In contrast, there is little, or no concern voiced about the possibility of false negative diagnoses and misattribution of Lyme disease symptoms to other etiologies. Obviously, all patients, whatever their ailment, should be accurately diagnosed in a timely manner.

Testing methods more sensitive and reliable than the CDC standard two-tier test (STTT), as concluded by 40 Lyme disease academic and government specialists attending a Banbury Conference at Cold Spring Harbor Laboratory, and a year later by the Tick-Borne Disease Working Group, are desperately needed to differentiate between those who do and those do not have Lyme disease. Individuals suffering from Lyme and other tick-borne diseases (TBDs) who are not promptly diagnosed are likely contributing, at least in part, to the accumulation of patients suffering from post-treatment Lyme disease syndrome(PTLDS).

Because of the severe consequences of missed or delayed diagnosis of Lyme disease, it is extremely important to minimize false negative diagnoses as well. Specific guidance on how best to avoid false negative diagnoses would be invaluable to medical care providers.

……To conclude, the content and bibliography of the 2019 revised IDSA guidelines fails to acknowledge evidence or reference published scientific and medical studies that could and should convey a more nuanced understanding of the complexities of Lyme disease diagnosis, symptomatology, treatment, and treatment failure. A more inclusive, open-minded, and informed approach to conveying information can only benefit the Lyme disease physician and patient community, as it will better serve to enhance co-operation, reduce controversies that divide the IDSA and ILADS ‘camps’, and ultimately reduce the likelihood of false negative and false positive diagnoses.

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