A room full of people who care about Lyme disease

Over the weekend, I had the privilege of attending the LDA and ILADS sponsored  conferences on Lyme Disease.  I left Pittsburgh worried that I would find the three days of talks I planned to intend incomprehensible, boring, or simply overwhelming. I returned having soaked up hour after hour of information. The material engaged me in so many ways. As a person with Lyme Disease I found myself learning to understand my own condition, hearing about how doctors actually make treatment decisions, discovering with scientists new knowledge and promising possibilities for tackling the beast inside me. As a researcher studying Lyme disease I was delighted to discover other social scientists studying its effects in the schools and in the workplace, and to make contact with possible collaborators in the activist and scientific communities. Perhaps most surprising was the power I felt from being in a room full of other people who all understood, cared about, and had been forever changed by their encounters with Lyme Disease.

Hearing the story behind the story of so many was one of the most touching and fascinating aspects of attending the conference. Other attendees included patients, healthcare professionals (of every type from OD to MD to ND), activists, researchers, funders, and probably others as well. But one thing tied us all together — a personal connection to Lyme disease. Everyone attending seemed to have a parent, brother, child, spouse or self who inspired a passion to make Lyme disease less burdensome. We told stories about how Lyme had touched us. The path through treatment. The hope for a cure that each recovered person encountered represented.

The room was also full of characters who it seemed had walked right out of the book and movie that had helped me on my own path through lyme (Cure Unknown and Under Our Skin) — Here was Dr. Martz talking about the prevalence of Lyme in Colorado, there was “that beautiful girl Mandy from the movie!” (as a friend I met at the conference said) walking around with no visible signs of her ordeal. I didn’t even want to ask her how she felt — it was nicer to put her on a pedestal and just pretend she represented full recovery, later I found myself listening to Dr. Burrascano talking about co-infections.

One of my favorite presentations was by Maloney on Clinical Judgement. Maloney stepped through every study in the 2006 IDSA guidelines, explaining carefully and clearly why the studies referenced did not support the guidelines. Thus, she used the IDSA guideline authors’ own references to shoot them in the foot. Her talk is available online, and if you are doubting whether to trust the IDSA’s recommendations I strongly recommend you watch it. Another great talk was Sarah Chissell’s discussion of what’s known about Lyme and pregnancy/breastfeeding (any expectant mom with Lyme should consider the sobering statistics she presented on congenital lyme disease). Her initial results on this (from 2008) are already available online, and I hope her newer results, along with the treatment guidelines she proposed, will be available soon. ILADS intends to incorporate them into the next revision of its guidelines, I believe.

I want to close by mentioning a quote from the incoming head of ILADS (Dr. Cameron is stepping down, to be replaced by Dr. Robert Bransfield). He said, at the close of the conference:

Evidence over Ego
Data over Dogma
Patients over Politics

I couldn’t agree more!

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