We all know there has always been great controversy around the diagnosis and treatment of Lyme Disease. This controversy was between the IDSA-Infectious Disease Society of America– and the general community of health care clinicians out in the field, seeing tens of thousands of patients. ILADS was formed by these clinicians to further the dissemination of information and research on Lyme Disease as it affects the patients we see across the country.
The National Guidelines Clearinghouse–a federal database that provides treatment information to health care professionals and insurance companies–for a long time contained only the IDSA Lyme guidelines. But ILADS wrote guidelines, and the National Guidelines Clearinghouse posted them in 2014, so the government was posting two conflicting sets of guidelines.
But the NGC HAS REMOVED THE IDSA GUIDELINES!
This means that the only Lyme disease guidelines listed on the NGC are those that ILADS submitted in 2014, and which were accepted for publication. This is terrific for the Lyme community.
So what is this all about? How did this happen and what does it mean for you?
In 2006, shortly after the IDSA published its most recent guidelines on the treatment of Lyme disease, an antitrust investigation was filed by then-Connecticut Attorney General Richard Blumenthal. (Blumenthal is now a U.S. senator.)
The IDSA settled the antitrust investigation by agreeing to review its guidelines in a public hearing—which provided essentially equal time for the IDSA and patients, clinicians, and scientists who held opposing views.
The hearing panel released its finding in 2010. But the panel was made up essentially of the same people who wrote the original guidelines, so no wonder they found it acceptable. IDSA advised the NGC that the IDSA had reviewed its guidelines and that no change was necessary. (Actually, the panel recommended 25 changes)
The NGC decided IDSA could post its guidelines until 2015 without further review and update.
However, in 2014, the NGC revised its rules for writing guidelines to conform to some of the standards adopted by the Institute of Medicine in 2011 for creating trustworthy guidelines. These standards included using a rigorous evidence review system.
ILADS guidelines took the new standards very seriously, and carefully conformed to the high evidentiary standards of the IOM. Although the IDSA guidelines did not conform, because they were filed before the NGC adopted the IOM standards, they were given a “free pass” on compliance.
But not anymore. They’ve been removed, without comment, but presumably for not meeting the scientific standards of the Institute of Medicine.
The IDSA guidelines are currently undergoing revision. The IDSA’s guideline revision process was publicly posted for comment in May 2015. The new process which did not have a patient on its review panel, as required by the Institute of Medicine was met with an outpouring of protest from the Lyme Community. We don’t know what their final conclusions will be, but for now, IDSA guidelines are gone.
What does that mean for you? It means that in the controversy over what kind of treatment should be given to people who are ill with Lyme and associated diseases, we are free to use antibiotics as we believe indicated by the clinical picture, and not to arbitrarily stop because IDSA insists Lyme is hard to catch and easy to treat! Chronic and late-stage Lyme are recognized, and the need for IV antibiotics for some people who are very sick is recognized.