I encourage you to read the survey results and let me know your thoughts.  We included a link to them in our initial post to the IDSA, which we made in conjunction with the LDA and 67 other patient groups.

READ THE SURVEY RESULTS.

We have compiled not only the quantitative picture, but also selected some of the comments. One of my favorites is:

“I’m the one devastated by this disease, and the truth is, you don’t know for certain how to treat it. With a condition fraught with so much uncertainty and unknown, the most we can be offered is the state of all available knowledge (even if they oppose each other), access to (and insurance that covers) all treatment approaches, and the freedom to make our own choices.”

Female, 51, OR

This survey is part of a series of surveys of Lyme disease patients conducted by LymeDisease.org. Two of the previous surveys were published in peer review journals and can be access here and here.  Find out more about LymeDisease.org surveys.  Contact the lead author, Lorraine Johnson, JD, MBA at lbjohnson@lymedisease.org.

The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org.You can contact her at lbjohnson@lymedisease.org. On Twitter, follow her @lymepolicywonk.