Lorraine Johnson, JD, MBA

27DEC
2016

It’s hard to believe that our patient-driven big data project, MyLymeData, was launched just last November. In October and November of this year, we presented our first preliminary findings from the survey at the Columbia/LDA conference in Minnesota and at the conference of the International Lyme and Associated Diseases Society in Philadelphia.

Our initial results presented at the conferences highlight the importance of early diagnosis to improve patient response to treatment. 23% more patients who were diagnosed early reported being well compared to those diagnosed late. However, the need for better treatments in both early and late Lyme disease was evident. Over 4,000 patient were included in the study. Of those diagnosed early, 68% remained ill. For those diagnosed late, 91% reported still being ill. Better treatment options are needed to improve these outcomes. Our press release regarding these findings may be found here.

The failure to diagnose early is an avoidable harm to patients. Patients report that diagnostic delays are associated with false negative test results (57%) and with positive test results that are dismissed by their clinicians as “false positives” (13%). Many patients are not evaluated properly because their physicians incorrectly believe that there is “no Lyme here.”

SNIP