Esther12
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shows that 65% of the chronic Lyme patients who tested negative on the ELISA also tested positive on one or more of the Borrelia-specific bands on the Western Blot. These are bands which are not known to cross-react with any other infections.
What do you think of that paper? It didn't look great to me. And it's from 1997 when testing was less good (although I'm still not confident in the paper's findings, even then - again, post XMRV I think we were all shown how important it is to get independent validation of claims about testing).
At http://www.cdc.gov/lyme/faq/ the CDC (sort-of) implies that false-negative rates are under 35%: But a correct (true) positive of 65%+ only suggests that false positives are 35% or less, and says absolutely nothing about true or false negative results. They also do not say what the accuracy numbers actually are, and do not cite to any source for their claims. They also do not specify the rates for the first step of the test in isolation, which is where testing usually stops.
Additionally, the CDC has recently increased the estimated number of new cases of Lyme per year by a factor of ten, from 30,000 to 300,000: http://www.cdc.gov/media/releases/2013/p0819-lyme-disease.html
This would seem to suggest that even some at the CDC believe that there is a major problem with testing and/or reporting.
There have been problems with how Lyme has been treated, and I think that some 'mainstream' approaches have become politicised and affected by a desire to 'reassure' people and discredit 'alternative' approaches rather than just speak honestly to patients. I also think that has affected how people with symptoms following treatment for Lyme have been treated. This is bad, but doesn't legitimise 'alternative' approaches (or at least, not much). I'm not starting from a position of faith in authority (given my concerns about other areas around CFS, I reckon you realise that), but a concern that the problems with 'mainstream' approaches to CFS and Lyme is making room for ,and encouraging patients to pursue, dodgy alternative approaches.