Lori

Pam Weintraub asks an important question over at Aeon discussion board: Why do doctors keep fighting about Lyme disease? Dr. Elizabeth Maloney kicked off with opening thoughts, Pam Weintraub joined in, Dr. Sheila Statlender and Dr. Lee as well as many patient voices have created a lively debate. Is you haven’t contributed yet, I encourage you to do so.

Over 6,100 responded to our IDSA survey within one month! That’s YOU being engaged. Everyone who has worked on this project has been deeply touched by your responses. In addition to answering our survey questions, over 1,700 patients offered their thoughts in a tiny comment box. I have to say, I was unprepared for the depth of responses offered. I know that those of us who reviewed the comments teared up. You may too.

In March, the Infectious Diseases Society of America provided a 30-day window for the public to comment on its plan to revise the Lyme disease guidelines. The deadline was April 9. However, the IDSA has just extended the time to file comments. If you have not yet done so, you now have until April 24th.

LymeDisease.org and the national Lyme Disease Association filed comments on behalf of 67 patient groups across the nation. LymeDisease.org also launched a patient survey on March 28 to solicit patient views. It drew more than 5,500 responses. We included findings from the survey in the formal comments we filed with the IDSA.

Raise your voice with ours–and let’s be heard as a community! The IDSA guideline revision process is very important to patients. The guidelines panel is required to consider outcomes that are important to Lyme patients. But it has excluded them. This survey is your opportunity to tell the panel what outcomes are important to you.

For the past 11 years, the IDSA has refused to include patients (as well as researchers and physicians who are not like-minded) on its Lyme guidelines panels. The group has also fought against patient representation on federal and state advisory boards. On March 9th, they announced a new guideline development process. This time, they have included a patient representative. Why the sudden change? And, more to the point, should patients rejoice or weep?

Lyme disease is a controversial illness—as anyone with the disease knows. The controversy arises because there is medical uncertainty about the best way to diagnose and treat the disease, poor quality diagnostic tests, and very little treatment research. Out of this uncertainty, two approaches to treating the disease have emerged: one advanced by the Infectious Diseases Society of America (IDSA) and the other advanced by the International Lyme and Associated Diseases Society (ILADS). But both of the approaches are not equal in the eyes of patients. One leaves patients without treatment options when short term therapy fails, as it does all too often. The other provides patients with the option of receiving additional care.

In the final days waiting for Governor Cuomo to sign the Lyme bill in New York that would ensure Lyme patients access to diagnosis and care, Slate magazine ran what can only be called a Lyme bashing piece designed to kill the legislation. LymeDisease.org responded with this letter to the editor.

One reason that many patients suffering from Lyme disease can’t get properly treated is because they can’t get properly diagnosed in the first place. Often, that’s because of the sorry state of laboratory tests for Lyme disease.