Lorraine Johnson IDSA Review Hearing Speech

One reason that many patients suffering from Lyme disease can’t get properly treated is because they can’t get properly diagnosed in the first place. Often, that’s because of the sorry state of laboratory tests for Lyme disease.

Now that two studies have shown that IDSA guidelines are generally long on opinion and short on evidence, what should the IDSA guideline panel do? The study by Lee, discussed in yesterday's blog, found that IDSA frequently makes strong recommendations, but that these strong recommendations are supported by strong evidence only 15% of the time. Dr. Maloney found that the majority of recommendations in the IDSA Lyme guidelines were based on the weakest level of evidence–expert opinion. Shouldn't clinical judgment only be suppressed when there is strong evidence? That's what the American Academy of Pediatrics says in its guidelines on making guidelines.

Although most people believe that a "good" physician licensure board is a "tough" one that protects people from bad doctors, medical boards that abuse their tremendous power, can persecutes or even destroy good doctors. Those in the Lyme community are aware of the relentless prosecution of Dr. Charles Ray Jones in Connecticut. The case which has dragged on for years and cost an enormous amount of money seems specifically designed to accomplish only one purpose–to put Dr. Jones out of business. The case is particularly disturbing because the Connecticut Department of Public Health had previously said that it recognized two standards of care in the treatment of Lyme disease and would not prosecute physicians solely because they followed a standard of care that provided for longer term treatment of Lyme disease. This is abuse of power by a medical board, pure and simple.

Two weeks ago, I posted a blog regarding the IDSA stealth front organization, the American Lyme Disease Foundation (ALDF). I highlighted the fact that Dr. Phil Baker, who was responsible for overseeing the Lyme clinical trials at the National Institute of Health (NIH) prior to his retirement, is now the Executive Director at the ALDF. I also questioned the handling of two companion studies during his tenure at NIH. One (Klempner), which found no persistent infection, was rushed to publication, while its companion monkey trial (Embers) languished for ten long years. During the interim, the Klempner trial was heavily promoted by the IDSA to deny patients treatment for chronic Lyme disease while no one mentioned that the companion study, the Embers trial, was still pending. Dr. Baker protested that he had nothing to do with the delay. However, I pointed out that he had an ethical obligation to accurately characterize the uncertain state of the science while the Embers companion study was pending. Dr. Baker now goes to great lengths to explain the delay (see below), and I respond.

Drs. Janet and Felix Sperling of the University of Alberta published an entomology study on Lyme disease in Canada that is worth a read, especially if you believe that Lyme stops at the US border. Did you know that Lyme has now been recognized in every province in Canada? And that infection rates of ticks are 12.5%? More fast facts after the jump.