Issues → July/August 2007 → Feature Stories →
Lyme Disease: One Woman's Journey
Resources and tips to protect yourself and pets
by Edie Clark
In July 2002, having spent an idyllic week's vacation on one of the Elizabeth Islands off Cape Cod, I came home to New Hampshire. The island -- a glorious, wild place marked by ancient beech forests, kettle ponds, and open grasslands -- is also crawling with ticks, which at the time seemed only a minor obstacle to enjoying the abundant gifts it offers.
Within a month of my return, however, I would begin to learn a bitter lesson -- in the history, ethics, and politics of a debilitating disease, and the mystery that has surrounded it for more than 50 years.
Like many others who visit New England's islands, I was bitten by ticks, more than once. Ten days after getting home, on a very hot day, I felt cold. I put on sweaters and heavy socks and lay down under a pile of blankets. I shivered and shook. My head pounded. More than anything, I craved sleep. I lay in bed, shivering and sweating. I finally found the strength to call my doctor, who waved away my suggestion that I might have Lyme disease.
Some days later, bruises appeared on my legs, first one and then another, and within another day, my entire body was covered in them. A friend, a nurse, saw the deep blue marks and said, "You have Lyme disease! Get to a doctor right away!" How she knew I have no idea -- because they didn't look like the pictures of the bull's-eye rash I'd seen in books.
My doctor ordered blood tests. Indeed, I had Lyme. Soon my doctor was talking with specialists at the Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia. I was a rare case. I had all four of the identifying factors: a verified tick bite, flulike symptoms, a positive blood test, and a bruiselike rash, known medically as erythema migrans, or EM. My doctor prescribed four weeks of a powerful antibiotic, doxycycline, and when the symptoms hadn't completely subsided in that time, an additional two weeks.
The antibiotics cleared the rash immediately. The fever was subdued, but not my fear. I Googled "Lyme disease" on my computer. More than a million results came up, and to my dismay, many of them were in remarkable disagreement about almost everything. There were scores of "Lyme disease associations" to consult. Which ones were useful? I had no way to tell. I read dozens of personal stories -- all with the same theme. The treatment was as perplexing as its cause.
I read about Allen C. Steere, M.D., the physician who first gave the disease its name -- and who later received death threats and refused to make public appearances without security guards. I read about doctors who had been hauled before their state medical boards for prescribing long-term antibiotics, risking suspension of their licenses. I was mystified. This was beginning to sound like a John le Carre novel. My journey down the information highway had left me with more questions than ever.
Some of the Web sites I visited, such as lyme-rage.info, appeared to be outlets for fury against the medical establishment and the insurance companies. I could relate to that. My health insurance had expired just two weeks before I was diagnosed. A cancer survivor, I was in the midst of applying to insurance companies when I received the Lyme diagnosis. And so, on the next application, I dutifully reported my past history -- not only with cancer but now with Lyme. That application was denied. The reason stated? Lyme disease. I thought, "How could Lyme" -- which I thought of then as merely an achy, flulike illness -- "be worse than cancer?"
Reader Comments
Comment from Donna Zuk on June 6, 2008
I have Yankee magazine emailed to me every month, but in June last year I moved back to Connecticut after spending 2 years in North Carolina near my grandchildren and missed this article until now. I have been having weird ripping pains in my hands that heal in about 4 days only to return. I could hardly hold a pen today with sharp pains shooting in my hand whenever I tried to do normal activities. After a year of this, and it not getting better today after my usual 4 days or so of healing, I decided to go to the walk-in. I have lab work that I have to get done, and I noticed a Lymes disease test.
Funny thing I thought. Many years ago (16) a doctor tested me for hypothyroidism, Lymes, and Epstein Barr/mono. The Lymes and thyroid tests were negative. The Epstein Barr titer test was positive. I was diagnosed with Chronic Epstein Barr.
Years later after getting a tetanus shot, weird things began happening. Pain, severe pain, muscle spasms and muscle jerks spread all over my body, then 2 months later burning, boiling pain. Tender pain I used to call "it feels like raw hamburg pain." Then if I did some sit ups, I would have serious tender pain between my muscles and rib bones. I'd say, it feels like someone hit me with a baseball bat multiple times. My exhaustion for years continued. I would wish for death. I would cry from the pain and exhaustion. I didn't want to be in a relationship so they wouldn't have to deal with my limited life.
After seeing multiple doctors, I was diagnosed with fibromyalgia. I always feel sick. I have a hard time getting up in the morning and a hard time falling asleep, or staying asleep. I always hurt.
I came home tonight with thoughts of the meaning of my painful hand symptoms and what they might have to do with Lymes disease? I began my internet search again. Again I was reminded of another search I had done, and the tell-tale sign of the bulls eye rash. It's a funny thing because I had that once... (27 years ago) more than one on the same leg, so I counted it out. It was more than one area so it can't be Lymes. The Lymes test was negative, and there was also more than one bulls eye area at the same time (and it didn't get better). Then I read on the net, you can have more than one even if there's only one bite.
Ok, so now I continue searching trying to find any type of bite that might have the look of my bulls eye. My bulls eye was not the red rash. I distinctly remembered mine were bruises. You can imagine after all these years of never mentioning it to a doctor. I am now a nurse, (and after 19 years of nursing at 50 years old going back to college because my repetitive 'injuries' and exhaustion is making life miserable if not impossible at times) I was not a nurse when I had these bulls eyes but niether was I taught about lymes disease in nursing... never mind atypical BRUISE-type bulls eyes! Thank you so much for this article, and please, please thank that nurse!
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