Re: [DIYbio] Re: Anybody working on Lyme Disease?


On Monday, 16 July 2012 16:52:28 UTC-4, Gavin Scott wrote:

My understanding of the Lyme testing issue is that if you've been infected and then treated with appropriate antibiotics, then the spirochetes are supposed to be dead but apparently leave PCR-detectable bits of themselves laying around indefinitely, meaning that the PCR test can tell you that you did have an infection, but if they've put you through the 2-4 weeks of antibiotics then the PCR test is pretty much useless except as a confirmation that at one point you did have it. A positive PCR test after treatment will not convince anyone that you still have an active infection.

The regular (two-step) tests are supposed to have very good accuracy once you're past the first few weeks of an infection (IIRC).

About 10-20% of patients, and especially those who have experienced symptoms for a period longer than six weeks before treatment, have some degree of lingering symptoms known generally as "Post-Treatment Lyme Disease Syndrome" which behaves rather like an auto-immune response. Most people seem to get better (or at least improve) over time, but some have ongoing problems, which has lead to people who think they have "chronic lyme disease", something that isn't recognized by the medical community generally, but which prompted the movie "Under our Skin" (http://www.underourskin.com/) which is worth watching if you're interested in the subject.

Okay, let me try to respond to this in a non-angry way.

There is scientifically little question that there is persistent Lyme disease.
There are many thousands of patients being treated by many Lyme specialists
who have persistent Lyme disease.  You can show they have Lyme antibodies;
you can detect the spirochete with PCR; you can examine their tissue
and find spirochetes (if you are very patient);
you can show that these reduce in number during antibiotic treatment
and then return when you stop treatment.
Most importantly, these patients degenerate terribly when taken off
antibiotics, but do well as long as they stay on antibiotics.

There are a small number of doctors, primarily Eugene Shapiro, Gary Wormser,
and John Halperin, who, for whatever reason, have devoted their careers
to denying that persistent Lyme exists.  These three doctors were authors on the
NEJM study "A critical appraisal of chronic lyme disease", and also on the IDSA report
on the subject, and also on the American Academy of Neurology (AAN) report.
Everything on the Wikipedia page claiming that persistent Lyme disease
does not exist can be traced back to these three doctors.
These same doctors also claim that Lyme disease is rarely found
in the United States, which is complete bullshit.

You could make subtle arguments that the patients who are labeled
as chronic Lyme patients do not all have B. burgdorferi infections,
or that they are suffering some kind of bizarre auto-immune disorder
resulting from a prior infection that for some reason responds to
antibiotic treatments.  But the bottom line is that Shapiro and Wormser
insist that patients should be taken off antibiotics after a month,
and the reality is that these patients need continued antibiotics,
whatever the etiology of their disease.

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