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With summer upon us and everyone getting outdoors, naturally we'll all be stocking up on sunscreen, bug spray, and citronella candles, right? As for me, I'll be doing head-to-toe tick checks after spending time outside at my fiancé's parents' home near the NJ-PA border. The area is heavily wooded and crawling with ticks; after a recent trip out there I found one inching its way up my back, and two that had already dug into my dog's neck. Unfortunately, finding a tick before it takes a bite isn't always possible, and when you miss the little bugger the so-called telltale symptoms—bulls-eye rash and joint pain—don't always present themselves. While Lyme, caught early, is treatable, chronic Lyme disease is something entirely different—harder to diagnosis, with different, sometimes controversial treatment protocols, and often a very long recovery time. A new film currently making the festival circuit, Under Our Skin: The Untold Story of Lyme Disease, delves deeper into it. (And May is Lyme Awareness Month.) I have a special interest in all of this because one of my closest friends was sick for years—alternately diagnosed as having chronic fatigue syndrome, as being a nutjob, or simply a mystery case—until she got a Lyme diagnosis and proper treatment a few years ago. It's a complicated topic, and there's been more controversy lately about treatments and guidelines; for more info on prevention go to the International Lyme and Associated Disease Society (ILADS), or visit the non-profit Turn the Corner. What's amazing is despite the confusion and lack of attention, nearly everyone knows someone who has a Lyme story. Do you have one?
Posted by: Deniz| May 23, 2008 at 11:59 AM Hi, I'm Liz's friend who was sick and recovered, and she asked me to address your post. I'm SO sorry to hear about your friend. While every case of Lyme is different, I can tell you how mine was treated. I started out on oral antibiotics, which I took for about a year, with some but not total improvement. Ultimately, it took 3 months of IV antibiotics (Rocephin and Claphoran) and an additional several months of Ceftin (a broad-spectrum, oral antibiotic) for me to kick the Lyme. And I still have minor relapses, although they're nothing like what I was dealing with before. I"m able to come out of them in a week or so. In fact, my doctor isn't sure that the Lyme is still in my body--it could just be that my immune system was permanently damaged from the Lyme, so when i get run down those symptoms flare. Other people I know who are still struggling with chronic Lyme undergo intra-muscular shots of Bicillin (I tried those for a few months--painful, and didn't help me at all). Also, let your friend know that she could have a negative blood test and STILL have LYme. The current tests for Lyme (especially when you've had it for years) are not always accurate. The Lyme bacteria is a "smart" bacteria and has found ways to hide in the body and avoid detection--that's also why it's so hard to wipe out. She should find a Lyme-literate doctor who can interpret her symptoms along with any tests. A good place to get a doc referral is turnthecorner.org. Good luck! Tula - Thank you SO much for the detail. I will pass this along to my friend. |
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What type of treatment did your friend receive? A friend of mine has had recurring bouts of Lyme disease over the last 8 years. She is currently experiencing a particularly rough couple months with extreme pain and swelling in her knees - to the point that she always has to be on crutches. She's currently waiting on blood test results to confirm that this is in fact a Lyme recurrence, but, like you said, treatment options are varied and controversial. Her current specialist indicated that it is very possible prior treatments were incorrect. It would be great if you could pass along detail related to your friend's proper treatment. I appreciate it!