TOUCHED BY LYME: Repeating incorrect information doesn’t cause it to become correct
In November 2021, a commentary promoting the Infectious Diseases Society of America’s newly updated Lyme disease guidelines was published in the American Journal of Medicine.
(Unfortunately, those new guidelines have made it even harder for Lyme patients to get properly diagnosed and treated than the previous ones from 2006.)
This month, the AJM published two letters from ILADS-affiliated doctors who are pushing back against the IDSA.
One is from Dr. Betty Maloney, a co-author of the ILADS guidelines and a member of the current federal Tick-Borne Disease Working Group. She takes IDSA authors to task for recommending 10 days of doxycycline for a Lyme-related rash.
Inadequately sourced, potentially dangerous
“If the primary treatment goal for managing patients with erythema migrans (EM) rashes is to restore patients to their pre-Lyme health status, then the guidelines endorsed by Auwaerter et al are both inadequately sourced and potentially dangerous,” Dr. Maloney writes.
She notes that of the two trials cited in support of that advice, only one applies to patients in the United States. And in that study, almost half of the subjects failed to complete the 30-month trial.
Results at the 12-month observation point, she points out, suggest that “this regimen is not highly effective and puts many at risk for post-treatment sequalae that adversely impact quality of life.”
She says that the other study, conducted in Europe, is not generalizable to US patients, due to differences between the US and European Lyme-inducing Borrelia species.
According to Dr. Maloney, the IDSA authors ignored other studies showing a high clinical failure rate of the 10-day treatment. She concludes by saying:
“It is challenging to provide evidence-based medical care when there is little or no high-quality evidence to rely on. It is harder still when influential authors promote inadequate guidelines without meaningfully disclosing their shortcomings. Clinicians and their patients deserve better.”
Erroneous statement about single-dose doxy
A second letter, from Dr. Bea Szantyr, focuses on the IDSA’s recommendation to give a single dose of doxycycline after a tick bite.
“Repeating incorrect information does not cause it to become correct,” Dr. Szantyr writes. “The erroneous statement by Auwaerter et al, that taking single-dose doxycycline after an Ixodes tick bite prevents Lyme disease, has not been demonstrated by any North American study to date.
“Although repeatedly cited as demonstrating this, the 2001 Nadelman study did not follow its subjects long enough to demonstrate this point. It is well known that later manifestations of Lyme disease may develop beyond the 6-week follow-up period used by the investigators.”
Dr. Szantyr proposes that it would be more valid to say that the optimum dosage and duration of antibiotic prophylaxis for preventing Lyme disease after an Ixodes tick bite remains unknown.
In some quarters—including those of government health officials, many practitioners, and most insurance companies—the IDSA Lyme guidelines are viewed as truth handed down from the mountaintop.
When those guidelines keep repeating such false—or incomplete—information, Lyme patients suffer.
Bravo to Drs. Maloney and Szantyr for calling the IDSA authors on their errors. We need more of this.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at firstname.lastname@example.org.