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Creativity punished in Lyme disease treatment

Posted by plosmedicine on 30 Mar 2009 at 23:40 GMT

Author: Lou Overman
Position: Retired field biologist
Institution: No affiliation was given
Submitted Date: February 15, 2005
Published Date: February 23, 2005
This comment was originally posted as a “Reader Response” on the publication date indicated above. All Reader Responses are now available as comments.

I am commenting on two articles: a??A free community approach to classifying diseasea?? and a??Preserving creativity in medicine.a?? These were in the Nov. and Dec. issues.

It is interesting to me that one of the founders of this journal was formerly head of NIH, which has done neither of these things when it comes to Lyme disease (and associated tick-borne diseases).

The doctors who end up with large numbers of late stage lyme cases are being persecuted, instead of encouraged. They are the creative ones, having to deal with failures of other doctors in not diagnosing and treating so many cases at the early stage. They get the worst cases and no support whatsoever from federal health agencies in coping with this disaster. Testing is a mess. Treatment, as defined in conventional circles, fails in late cases and even in some early cases. This has been going on for years now, with no improvement in the approach taken to this disease.

If you want to see what is happening to the doctors who try to innovate in treating the disease, read the article about Medical McCarthyism in the Medical Economics journal.

I am especially disappointed, outraged, by the failings of NIH with lyme because if they were getting it right, insurance companies, medical boards, and everyone else would no longer have any ground to stand on and would come around. Instead, the current and former heads of the NIH lyme program have both taken the position at the outset of research that chronic lyme/persistent infection do not exist. So, this is the kind of research that gets funded and printed in journals, leaving the poor practitioners in the lurch and with no support.

The NIH intramural study has collected plenty of evidence that long term treatment works for Lyme patients, but has not published any of it.

I would also like to point out that Lyme has been characterized primarily as a disease involving joints and a rash, when it is multisystemic. If the free community approach (from your article) were taken in Lyme, you would find a great difference in how this disease is defined. Late stage syphilis is considered a serious disease, while late stage Lyme gets no respect. Both are spirochetal diseases. Has the medical establishment learned nothing from syphilis?

It is a mystery to me why the medical establishment (including most medical journals) would take the position that a disease is not prevalent or serious. One would think that the more diseases there are, the more job security and research money results. Why is this?

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No competing interests declared.