In a letter to attendees of IDWeek, the annual convention held by the Infectious Diseases Society of America (IDSA), IDSA President Stephen Calderwood, MD alerted conference attendees that the IDSA had learned about potential protests by organized groups who disagree with the recommendations made by the IDSAs clinical practice guidelines on Lyme disease.



Demonstrators gathered in San Diego gave Dr. Calderwood an A+ for learning about the protests; but say he and members of the IDSA earn an F when it comes to understanding and treating those suffering from Lyme disease and its co-infections.



Throughout the protest, a large billboard truck displaying the message IDSA Lyme guidelines destroy lives circled the convention center. Friday evening, a candlelight vigil was held to honor those who have died from Lyme disease. The traveling Lyme Quiltwhich has green squares to commemorate chronic Lyme patients who lost their lives, and red ones for those who are still with uswas displayed for the first time on the west coast. The event was co-sponsored by LymeDisease.org, the Mayday Project, and the San Diego Lyme Disease Support Group.



Dorothy Leland of LymeDisease.org says Lyme denialism starts with Lyme treatment guidelines put forth by the Infectious Diseases Society of America. The guidelines of this private medical association define Lyme disease so narrowly that many people are denied treatment altogether. Based on these guidelines, even people in the early stages of the diseasewhen they can be most easily curedare often told they dont have Lyme and are refused proper medical care.



While Dr. Calderwoods letter told attendees the IDSA was deeply sympathetic to all patients, including those who experience illness that they attribute to Lyme disease, demonstrators say they dont want IDSA sympathy. What they want is for the IDSA to learn from patient suffering.



According to Allison Caruana of the Mayday Project, Dr. Calderwoods words about people attributing continued illness to something other than Lyme disease shows he and his colleagues still refuse to see the epidemic of tick-borne diseases unfolding before their eyes. Hundreds of peer-reviewed studies document the persistence of Lyme disease in humans and animals after IDSA recommended treatment, with many providing confirmation by culture.



Caruana also expressed concerns about an organized misinformation campaign by IDSA guidelines panelists. She said Good science is ignored and suppressed by IDSA researchers who have staked their reputations on the premise that chronic Lyme does not exist. Wed prefer not to protest, but until IDSA keeps its promise and publishes an acceptable standard of care, we will be back.