Bull's-eye.

Constance Dickey, RN, would have been right on if she had seen the trademark bull's-eye rash of Lyme disease. But she had a different rash, knew little about the disease, and was not overly concerned about it despite two tick bites.

Showering after a three-day fall cleanup of her family's rustic summer camp near Bar Harbor, Maine, she found two deer ticks on herself, one on each shoulder. "It kind of grossed me out," Dickey said. But she thought: No bull's-eye rash, no problem.

"Unfortunately, that was my big mistake," she said.

What she's learned since then as a voting member of the International Lyme and Associated Diseases Society and in establishing support groups in eastern and southern Maine from her home in Hampden, is that not every Lyme case shows the distinct rash. Recovery through antibiotics is excellent when it is diagnosed early, but for those untreated-as Dickey was for five years-it is about 80 percent.

"Some people say 'Oh, that's wonderful,' " she said. "And I say 'No, it isn't. It's not good enough to do acute care nursing.' "
Dickey was at the height of a 25-year career at Eastern Maine Medical Center in Bangor. She had 15 years as an operating room nurse and nine in emergency when her physical and mental stamina began to flag.

The diagnosis: chronic fatigue syndrome and fibromyalgia. The remedy: a transfer from being an emergency room nurse to the less-demanding role of nurse triage operator. Talented physicians, Dickey said, "wanted to put me on morphine and disability" as she deteriorated to about 20 percent of her former self.

"This has got to be more," she told herself and began studying Lyme disease. As she researched symptoms and cases, it dawned on her: "This is me exactly. I had to know why they didn't think I had Lyme disease. I didn't know that I did, but I needed to rule it out."

An infectious disease specialist at Boston University pulled together seemingly incongruous symptoms-too many of them, anyway, to easily fit any single diagnosis-and began treating Dickey for Lyme. She is three years into an antibiotic regimen that she said has brought her back to 65 percent normal.

Lyme is a spirochetal disease, like syphilis, Dickey said. It's multisystemic, affecting vision, cognitive thinking, the cardiac system, every organ in the body. She likened the bodywide nerve pain and fatigue to what a severely ill cancer patient might feel. "It's a pretty profound fatigue," she said. "It's not like you can take a nap for half an hour and get up and do something."

Dickey is 50 years old and said she feels 80 most of the time. Although nursing as a profession is still out of the question, treatment has restored important aspects of her life.

She is quilting again, a milestone, considering that at the worst, she couldn't fathom a 2-inch square. "I couldn't quilt, I couldn't write checks, I couldn't add and subtract," she said.

As a professional quilter, Dickey said she is most proud of "Pali Snails," published in Greatest American Quilts magazine. It was the last quilt she made before she fell ill. The snails' trails pattern is traditional; what made "Pali Snails" special was its vividly colored, hand-dyed and hand-painted material.

"I made quilts when my children were little and I just had this burning desire to carry on what our foremothers had done," Dickey said. "I decided to stick to bed quilts because they didn't make wall quilts or art quilts."

To a degree, nursing is back in her life, too, although she's still trying to figure out how to get paid for raising awareness of Lyme disease.

Dickey spends much of the three to five hours a day that she is able to work at the computer, sometimes camping at www.lyme.org, virtual home of the Lyme Disease Foundation. She answers e-mail and questions from online participants in the support groups, steers people toward treatment and keeps physicians focused on the disease.

The tick population is exploding across the United States and, with it, cases of Lyme, Dickey said.

After her experience as a medical professional, from ignoring the possibility of the disease to accepting it for too long as chronic fatigue and fibromyalgia, "I can't turn my back on the people who aren't nurses," she said.