The IDSA hearing results were expected by the year end. Then were delayed—until “after the first of the year”. Perhaps the delay was caused by Dr. Duray’s resignation from the panel due to personal illness. We don’t know because we have not been told the reason for the delay or how long the delay will be. Patients are on tenterhooks awaiting the results and with good cause. Revision of the IDSA Lyme guidelines could make a world of difference for Lyme patients. According to a CALDA survey, 53% of patients with chronic Lyme have been treated according to the IDSA Lyme guidelines and 90% of these were not restored to health under the IDSA protocols. Isn’t the point of treatment guidelines to improve patient outcomes? And, if they don’t, shouldn’t they be revised?

The patients who were not restored to health under the IDSA treatment protocol required additional treatment—treatment which the IDSA protocols prohibit.  Yet when these patients received additional treatment, according to the CALDA survey, they improved significantly.  More than 70% reported feeling much better or somewhat better with respect to fatigue.  Across the board, more than 60% of patients reported feeling much better or somewhat better with respect to headaches, muscle aches, joint pain, neuropathy, and concentration difficulties after receiving additional treatment.  Isn’t the message clear?  When treatment approaches fail, patients need alternatives and medical societies need to ensure that patients are granted treatment options under their guidelines.

You can follow additional comments on Lyme policy at www.lymepolicywonk.org.  You can contact Lorraine Johnson, JD, MBA at lbjohnson@lymedisease.org.