TOUCHED BY LYME: The "take-aways" from WBUR's Lyme panel

Like the illness itself, Lyme disease awareness is spreading. Here in Boston where I live, the local NPR station, WBUR 90.9, is wrapping up a week-long series called “Living With Lyme.” Daily broadcasts on the program “All Things Considered” have included a heart- wrenching personal tale, discussion about the former Lyme disease vaccine and why it was pulled off the market, the complexities of diagnosing tick-borne illnesses and, of course, the debate over whether chronic Lyme disease exists.

In an effort to avoid this last controversy, WBUR’s Commonhealth blog co-host Carey Goldberg purposely chose not to include a medical doctor on Thursday’s live panel discussion, which was hosted by the station and held at Fenway Health. Panelists were Representative David Linsky, a self-described “legislator, lawyer and suburban dad” who sponsored a bill that created a state commission on Lyme disease; Dr. Thomas Mather, director of the University of Rhode Island’s Center for Vector-Borne Disease and its Tick Encounter Resource Center;  and Dr. Sheila Statlender, a clinical psychologist and advocate for Lyme disease patients.

As the panelists answered questions about Lyme disease prevention, testing of tick-borne illnesses, and the struggle to find adequate medical help, it became obvious that it’s nearly impossible to ignore the political aspect of the disease. Goldberg said that she’d never researched a disease with such a disconnect between the human side and medical politics. Dr. Statlender, whose eldest child went six years without a proper Lyme diagnosis, concurred that once we get personally involved with tick-borne illnesses, we become mired in their politics, not by choice, but because it’s a necessary means to acquiring appropriate medical care.

The discussion proved that time and again, true understanding of Lyme disease only comes with personal experience. Each of the panelists had one or more close family members who had dealt with the disease, and it was those battles that led them to become experts on or advocates for Lyme prevention and Lyme literacy. Though the three speakers were looking at the issue from different angles: legislative, biological and psychological, they all agreed that awareness efforts need to be increased, people need to understand basic steps of prevention, and medical doctors on both sides of the political divide need to come together to change the way Lyme disease is approached and treated.

For me, there were four important take-aways from the event:

1. Do your research. Fielding questions about the effectiveness of the former vaccine, the validity of certain labs and the confusion of conflicting diagnoses, Dr. Statlender stressed over and over that patients must take the time to read studies and articles and seek information from many doctors and/or other resources in order to make an informed decision about diagnosis and treatment. Until the medical controversy surround Lyme improves, we patients must be our own best advocates.
2. Use permethrin. This synthetic pesticide is a known tick-repellent. It can be sprayed on shoes and clothing, which will last through six washes. Stores like LL Bean and REI also carry clothing that has already been treated with permethrin, and those items can maintain their efficacy through 70 wash cycles. Dr. Mather also suggested sending clothes directly to a company that will treat them for you (see his website for more information). Mather insists that permethrin is safer and more effective than DEET, stating that a person would have to wear one thousand pairs of permethrin-treated clothes at once to be in any sort of toxic danger.
3. Trust your instincts. You know your own body. If you know you are sick and are not getting taken seriously by your doctor, or if your doctor is not Lyme literate, move on to one who is. I spoke with one audience member whose son died tragically, after a long series of events that spiraled out of their struggle to get him properly diagnosed with and treated for tick-borne illnesses. No parent should have to go through what this woman has, but unfortunately, her story is all too common.
4. Connect with other Lymies. The last take-away is perhaps the most basic, but also the most critical. The best thing I got out of Thursday’s event was a new friend, who runs the Boston Lyme Group. She’s my age, with a similar medical background, and we quickly connected. It’s imperative not to go through this fight alone. Join a support group. Share your story. Share resources. These connections make living with Lyme more bearable, and make the fight seem possible.

Click here to watch the video of the panel discussion.

Click here for WBUR’s entire series “Living with Lyme.”

Jennifer Crystal, a Lyme survivor, is working towards her Masters in Creative Writing at Emerson College, in Boston. Her website is jennifercrystal.com. Email her at jencrystal5678@gmail.com.