Health Through Knowledge

The Serano Group

Sunday, May 03, 2009

Lyme Disease Secrets

The IDSA acts like they know things they don’t want to tell.

Bill Moyers said, “Secrecy is the freedom tyrants dream of”.  Unless there is a really good reason, decisions should not be made behind closed doors. For a published medical study, it is particularly hard to think of a good reason for secrets. Certainly, when it comes to an infectious disease, like, say, borreliosis, everyone should be telling everyone everything they know. When they don’t, something else is going on.  So, let’s ignore the merits and minutiae of the what the authors and supporters of the onerous IDSA guidelines for Lyme disease say. We are not going argue about their illogical statements and their dubious research. Instead, let’s just take a look at how many secrets they have. And, maybe ask why, if they are on the up-and-up, they need so many.  So, in no particular order, here goes…

Nothing But Tests

Steven J. Dumler did a 2-year evaluation of Lyme disease tests. He divided subjects into three classes based on symptoms and history: probable, possible, and unlikely for Lyme disease. The Journal of Clinical Microbiology let him publish without disclosing the test results of the three groups. Through a convoluted scheme, he obscured the fact that he threw out all the subjects with negative results and only analyzed subjects having positive tests, completely disassociated from any real-world phenomena other than the fact they produced a positive test. He has refused numerous requests to disclose who tested positive and who tested negative in his study. The journal editor, Andrew Onderdonk, supportive of the IDSA ideology, has refused to ask Dumler for his results.  Dumler’s study would classify a person bitten during the summer outside of Old Lyme, Connecticut by an identified Ixodes scapularis tick having DNA evidence of Bb, who left the tick attached three days, who had a flu-like episode and a physician-observed a 20 cm EM rash, followed by a swollen knee, as having NO EVIDENCE OF LYME DISEASE, just because the person had a single test and it was negative. He does not hide this detail,  but does not bother to mention it, either.

The Most Famous Lyme Study Ever

Mark Klempner was chief investigator on one of the most quoted (particularly by insurance companies) studies on persisting Lyme disease. He made numerous measurements pre-treatment and, if he made these measurements post-treatment, he has never reported them. The only result he analyzed came from a general questionnaire where each patient self-rates their physical and mental health. This questionnaire, the SF-36, generates eight scores, each on a scale from 0 to 100. Klempner has refused to disclose these scores for the groups studied. Instead, he used mathematically derived summary scores that one of the principals of the company who licenses the SF-36, Mark Kosinski, has stated never to use without disclosing the eight underlying scales. Maybe Kosinski decided to quiet his objections when Klempner made him a co-author of the paper in the prestigious New England Journal of Medicine.

Results Held Hostage

Eugene Shapiro is quoted in a letter to a journal that he cannot provide the results from one of his papers because the results were “in storage”. Doesn’t Yale University use computers? Maybe the results were “in storage” in a far corner of a disk drive, too far away for Shapiro to get to. And, don’t you put your results in storage so you can get them out to answer challenges and questions?

Behind Closed Doors

In 1991, organizers of a Lyme disease conference had to be ordered to allow submission of papers whose views and research contradicted IDSA ideology. Durland Fish was unhappy. (No link because the journal Science still wants $15 to display the article, Science 5 June 1992: 1384-1385) Since 1992, the IDSA faithful convene regularly at private Gordon conferences where dissenting opinions and research are not permitted.

Noncommercial Humanitarian

Gary Wormser has disclosed his financial interest in Diaspex, which he describes, in entirety, as a company having no products or services. We applaud Dr. Wormser for providing full disclosure. But, in April, 2009, Dun & Bradstreet gives the same address for Diaspex as for Cenogenics, listed as a manufacturer of medical diagnostic products including “syphylis (sic) serology reagents”. Gary Wormser’s company that, remember, has no products or services is listed as providing Noncommercial Research and Development in the Social Sciences and Humanities.

Who Makes Up Rules?

In 2005, Justin Radolf attacked the innovative and perceptive treating physician Dr. William Harvey in The Dallas Morning News saying Harvey was “making up his own rules”. In 2003, Radolf had been found guilty of falsifying data to get research grants. After that, he repeatedly sued the University of Connecticut for using his admitted fraud as a reason not to allow him to receive grants. (In this case, the legal system got it right. Radolf’s suits were unsuccessful.) He’s back to getting NIH grants and being quoted as a Lyme disease authority.

Don’t Write

In the mid-1980s, Lyme borreliosis researchers began finding their research routinely censored. The Lyme Disease Foundation created their own journal in 1994 to provide an uncensored forum for research. The LDF received some NIH funding support and has been vehemently attacked by IDSA ideologues ever since. The journal ceased publication in 2002.

Don’t Read

The fifth edition of the textbook Infectious Diseases of the Fetus & Newborn Infant, edited by Jack S. Remington, Philadelphia : Saunders, 2001, had a balanced and comprehensive 100-page chapter on congenital Lyme borreliosis. This chapter was excised and replaced with a few pages of Eugene Shapiro dumbing down the whole subject to a few pages non-scientific IDSA ideology in the 2006 edition. (Thank you to Dr. David Martz for finding this.)


Alan Steere has so many secrets, it is hard to pick just a few. Writing up his version of what citizens explained to him was going on in Old Lyme, Connecticut, he cited at least 15 literature references on EM rash in June, 1977. Why didn’t he stress that EM rashes respond to antibiotics? Why did he try so hard in 1977, and for the next 30 years to turn borreliosis into a new disease, preferably a rheumatologist’s disease?  Secrecy was the standard operating procedure for Steere’s clinical trial for the Lymerix borreliosis vaccine failure which had 10,936 participants in 1995. Participants were informed of symptoms of borreliosis and asked to look for signs during the trial. They were told to call their doctor if they observed symptoms. Of the 1,917 that called in and were evaluated, 269 were determined to have borreliosis. What was wrong with the other 1,648? How many of them were infected? Remember: if you are conducting a vaccine trial, you want nobody to have the disease going in and certainly nobody to have the disease after the shot. Would a vaccine manufacturer want over-diagnosis or under-diagnosis? (Online access to the paper costs $31.50. Systemic symptoms without erythema migrans as the presenting picture of early Lyme disease, Am J Med. 2003 Jan;114(1):58-62.)

Poor Sales

The reason IDSA supporters repeatedly cite for the failure of the Lymerix vaccine is “poor sales”, which is a little like a football coach saying his team lost because the other team scored more points. Perhaps the failure of the vaccine was due to its inability to protect against borreliosis and its tendency to make well recipients sick or crippled, something rarely reported but fairly well-known to the participants. We do not think this was patient hysteria.  Class-action lawyers became involved not when contacted by patients, but when a group of doctors, worried they would be sued for malpractice after giving people the vaccine, went to the lawyers seeking protection.

Summing Up

Just perhaps, the IDSA Lyme disease guideline authors are completely accurate and ethical. Maybe they have nothing to hide. Perhaps they just have personality quirks that compel them to behave furtively, acting almost like criminals.  Another explanation is they might have some facts in hand that contradict their religious-like dogma. You can decide. It might help if you talk to any of the hundreds of thousands of citizens and their doctors who have experienced something completely different from what the IDSA says is true.

Posted by Joel Spinhirne
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