Friday, March 30, 2012


I just noticed that my last blog was posted almost 2 years ago! It's no wonder I haven't found time to blog, what with managing the MLA website, coordinating various projects, facilitating the Facebook page, creating fliers and other literature for the org., phone conferencing, convincing legislators & reporters to take Lyme seriously, etc., etc.,

But I'm back at it, with a new look and lots of catching up to do.

After 2 years serving as MLA's Communications Coordinator, I became president in January. I still do the CC job but now I'm also the guy who has the last word . . . literally!

Still lovin' it, though. Even though it's a slog, the small successes are plenty rewarding. Just this week I heard back from the dean of the med school that he will be looking into what they teach about Lyme and how the school can help Lyme patients. That response came over 4 months after the U president shared a letter of mine, then I wrote to him directly, and then I followed up with an email this week that included some research papers showing persistence of Bb after the "standard" treatment course.

Naturally, there were also frustrations to balance out that happy day (same day, actually). A WSJ reporter had contacted me to find a source to talk about their experience with Lyme and treatment. We spoke at length about the obstacles getting Lyme disease diagnosed and treated. I shared the same research papers with her that I shared with the dean. Not only did she not refer to them in the article, but she didn't bother asking her infectious disease "expert" about them, either. As usual, the article focused on the disagreement rather than the issue, that people are sick and not getting appropriate care.