Living with Lyme

Taryn Hafner Hullsiek cuddles with her dog Zoe. Hullsiek suffers from Lyme disease.

Taryn Hafner Hullsiek cuddles with her dog Zoe. Hullsiek suffers from Lyme disease.

— You’d never know Taryn Hafner Hullsiek has a debilitating disease.

The former Cicero-North Syracuse High School athlete could once swim five miles. Now there are days she can’t get out of bed.

Hullsiek, who now lives in Madison, Wis., has chronic Lyme disease, a diagnosis she finally received after seeing more than 30 doctors over five and a half years.

“It’s changed my life in every way possible,” Hullsiek said. “Living day to day, your expectations of what your live was going to be, everything across the board — having a family, having a career, all those things. It’s a tough pill to swallow.”

Lyme disease is transmitted by the bite of the tick. Reported in 49 U.S. states, it’s most prevalent in the Northeast, North-central and Pacific coastal regions. Lyme disease is most commonly associated with a bulls-eye rash on the skin, but such a rash is not always found with the illness; a significant number of sufferers don’t recall either a rash or being bitten by a tick. Hullsiek doesn’t.

Since Lyme is a multisystem disease, the list of symptoms is long, and it is common to see symptoms affecting multiple systems. Early in the illness Lyme disease can be confused with the flu, but as the disease progresses it can lead to cardiac, musculoskeletal, neurological, and/or other system involvement. Patients with chronic Lyme disease often experience severe headaches, fatigue, pain, insomnia, and memory problems. Chronic Lyme disease can render people completely disabled. It’s often confused with illnesses like MS, Lou Gherig’s disease, fibromyalgia, chronic fatigue syndrome, Parkinson’s disease, arthritis and other neurological disorders.

Hullsiek first started getting sick in the winter of 2006 while living in Jackson Hole, Wy., with her husband, John, who is in the military.

“It started so slowly for me. For some people, it’s a little more obvious,” she said. “For me, it started with a loss of sleep. I wasn’t sleeping as well. I wasn’t able to handle as much activity as I was doing. I was 23 years old. At first, I thought maybe I was just getting older. I was having hard time keeping up. I just pushed through it. The thought of illness never crossed my mind.”

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