California Advocate Blasts IDSA Lyme Guidelines
From Seven Men with Conflicts of Interest
IDSA, ILADS - similar letters; a world of difference.
Seven men with financial ties to the insurance industry, developers of Lyme test kits and holders of patents related to Lyme disease, are currently putting the final touches on treatment guidelines that we expect the Infectious Disease Society of America (IDSA) to approve soon. These men refused to meet with patient leaders to hear our concerns. The IDSA Lyme guidelines are the most influential in the U.S., dictating short, two-week treatments for the majority of cases, and denying that "chronic Lyme" even exists. The guidelines of the International Lyme and Associated Diseases Society (www.ILADS.org) on the other hand, recommend that patients be treated until they are well.
Many of us were treated according to IDSA guidelines and either failed to respond or relapsed. Many of us, including 75 percent of Dr. Jones' pediatric patients, are well after being treated according to ILADS guidelines. Several scientific studies document continuing ill health in people treated by IDSA guidelines. The IDSA calls this "post-Lyme syndrome." ILADS calls it "chronic Lyme disease" and ILADS doctors often treat us with more antibiotics, which are quite safe. Many of us pay out of pocket for our treatments, having been denied by insurance companies who quote IDSA guidelines. Meanwhile, ILADS doctors, like Dr. Jones, are threatened and sometimes prosecuted by their state medical boards for "overdiagnosis and overtreatment" based on IDSA guidelines.
Nearly 100 patient groups unsatisfied with the status quo represented by IDSA support two federal bills (S1479 and HR 3427) calling for more research, more education, better testing, and a committee that represents both sides of the treatment spectrum. IDSA is on record opposing this patient-sponsored legislation. ILADS supports it. So does the entire Connecticut congressional delegation and two Connecticut senators.
Lyme disease is a serious, chronic, under-recognized, under-treated worldwide epidemic and Dr. Jones is our hero. Until IDSA makes amends to the patients who suffer under the Society's restrictive guidelines, patient groups like CALDA will continue to champion Dr. Jones' cause and to recommend the ILADS standard of care.
Phyllis Mervine, president
California Lyme Disease Association
