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IssuesJuly/August 2007Feature Stories

Lyme Disease: One Woman's Journey

(page 4 of 8)

The mustachioed Stafford has a calm, precise demeanor, and with pens and eyeglasses case stuffed into his shirt pocket, is the very picture of a dedicated scientist. He continues: "At that time, the only place in the country you could be tested for Lyme was right here. Dr. Louis Magnarelli developed the test."

Even as we talk, researchers in a lab near Stafford's office are opening up envelopes and removing ticks mailed to them for analysis. Some 6,000 ticks arrive here each year. Scientists grind them up and test them for the spirochete bacterium that has bored its way into hundreds of thousands of Americans to date, and even deeper into their consciousness.

Stafford is the author of the Tick Management Handbook, a booklet that is distributed throughout southern Connecticut. (It's also available online at caes.state.ct.us.) In it, he discusses tick biology, tick-borne illnesses (Rocky Mountain spotted fever, ehrlichiosis, babesiosis, encephalitis, tularemia, Lyme disease), prevention, chemical control, and landscaping methods to reduce the Ixodes population -- in part by managing the numbers of deer, white-footed mice, and chipmunks (all principal hosts of disease-bearing ticks) on one's property.

"It's not going away," he says confidently. He shows me the CDC's incidence map, noting how the disease has spread from those early days in Lyme -- the concentrations now radiating like a dark stain all the way out into the Northeast. Indeed, 49 states in the Union have now reported cases. There are a number of places where Stafford and his researchers have been collecting ticks for many years, including Polly Murray's backyard.

"How does Lyme spread?" I ask.

He shrugs: "Migrating birds. There's no sure way to know. The movement of deer and the way people travel to tick-infested areas with their pets -- all can be factors. But it's widely believed that birds played a role in a lot of this." He shows me the tick's life cycle, which involves at least four critical stages. "It's like a mechanism that needs all the parts to function," he explains.

Having thought of the tick as an indestructible machine, I suddenly think it's a miracle that any tick survives with so many bridges to cross until it reaches the final stage on the back of a moving deer. "What about reducing the number of deer?" I ask.

"We've been wrestling with that for a number of years," Stafford replies. "We've done studies, and we've found that it can help substantially. But people get kind of exercised about hunting deer."

"Imagine virtually eliminating Lyme in five years! I've been living in the epicenter of the Lyme world for four years already. We could be almost done by now."

In her clipped British accent, Georgina Scholl, M.D., is talking about her passion: killing deer to save people. Slender, auburn-haired, dressed in linen, she's the vice chair of the Fairfield County Municipal Deer Management Alliance, a group that provides residents with a "deer hotline" and information on hired hunters. These towns, which suffer the highest incidence of Lyme disease, are trying everything they can to contain this epidemic.

Outside the French doors of her kitchen in Redding, Georgina looks out on a wildflower meadow that slopes gently toward the woods. The turquoise waters of the family's pool ripple in the breeze. This bucolic scene, once their paradise, is now a kind of no-man's-land for her family -- what she calls "no child left outside."

Reader CommentsRSS

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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