TOUCHED BY LYME: The "take-aways" from WBUR's Lyme panel
Boston NPR radio station WBUR included a panel discussion of Lyme disease as part of its week-long series “Living with Lyme.” Guest blogger Jennifer Crystal attended the event, and writes this report.
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:
- 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.
- 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.
- 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.
- 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 email@example.com.
- July 24, 2012 at 10:36 am
, still would not prescribe aocibntits because the test for Lymes came back negative. I proceeded to blow through pain & NSAID prescriptions for about a year going back every 3 months for more Lyme’s & other bloodwork, still nothing.Here’s the kicker, my husband thought He had been bitten by a tick about 5 years into this. The same doctor that I had gone to initially saw Him. Wrote out the script for doxy on the spot before the test even came back positive. Hmmmmm double standard here .I think so. My husband couldn’t take the prescription because he couldn’t tolerate it. By this time I was desperate for some relief. I thought it really couldn’t hurt to try His perscription. I did & 3 days later all my symptoms were gone. After taking the meds for 2 weeks I went back into the Dr that I’d been seeing & demanded another Lyme’s test after telling Him what had happened. He still gaffed me off by saying it was just because the doxy was reducing the joint swelling. Well guess what the Lyme’s test came back positive this time. He explained that it was probably because my body had stopped fighting the Lyme’s so the test that was used to identify antibodies couldn’t see them because they weren’t there to detect. When I started taking the antibiotic it gave my body a boost so that it started producing antibodies again. It took almost a year on antibiotics to have the test start to come back negative again. It’s been 3 years since treatment ended & while I feel a lot better there are what seem to be permanent damage to some joints & while I know that some say that it can be cured, I don’t believe so. I think it actually goes into sort of a remission of sorts because every so often I end up with the same, although not usually as severe, symptoms that I’ve had since 6 months after the bite. I am looking at both knee and ankle replacement because the joints are toast. Most of the issues are on the side that the bit occurred except for arthritis like symptoms & swelling in both hands. Even the gray hair that I am getting is more pronounced on that side. I tell this story for three reasons. 1) Don’t take no for an answer & put up with a double standard if you are a woman. Stand up for yourself right away. 2) Which goes along with #1 is that inist on the $27 antibotic that can save you from permanent damage right away! 3) It can come from a spider. (within 6 months of my Lyme’s test coming back positive I knew of 4 more people with spider bites that end up positive for Lyme’s.) No1f43w several doctors around here finally believe that for some reason there are a number of spiders that carry it. We are in a area where ticks carrying Lyme’s are very common.So now what! I’m in my early 40 s will end up having to deal with this forever. It makes me wonder if it’s shortened my life. It pops up almost every summer when it starts to get hot. It’s uncomfortable to say the least. When I tell the Dr that it interferes with my job, he says well you could just work less or find a different job. Wonder if he’s hiring (snark). I did change how I do my job so that I am not on my feet as much, but why don’t Dr.s think & apply practical solutions like the $27 month long prescription instead of solutions that obviously come from their ivory tower perspective? They need to get real.
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