FACETIME- Tinsley's tick: Living with Lyme Disease

Emily Tinsley

Even for a healthcare professional like Emily Tinsley, it wasn't easily apparent what was going on with her.

There was the fatigue. "I thought, well, I'm getting older," she recounts. There were the memory slips, the joint pain and muscle soreness. "I worked out five days a week," she says. "I ran marathons. I thought, I need to slow down."

Her symptoms built up for two years. "What brought me to the crisis point were neurological symptoms," she says. Tinsley, a burn nurse, was teaching a class and felt a tingling on her scalp. She felt sedated, and then her words started to slur. "I thought I was having a stroke," she says. "I went to the E.R. and they said I had a strained neck."

While she exhibited some of the 30 or so symptoms of Lyme Disease, Tinsley, 47, never had the bulls-eye rash that can accompany a deer tick bite. But many people don't get the rash. "In my heart, I knew I had it," she says. "I had researched it– and I grew up in New England," she says, where the disease is prevalent.

Tinsley, who's working on a master's degree and is the mother of two and the wife of local violinist/tennis tournamenteur Boyd Tinsley, describes existing with a chronic disease.

"It's something I live with literally on an hourly basis," she says. "It affects my daily life, my daily rhythm. A large part of Lyme is balance. I do too much and it flares up."

Like many of those Dr. Norton Fishman sees, Tinsley is "very competent, sophisticated and a high performer," he says. "They present to me and say, my brain isn't working. I'm having a hard time reading a book. They get dismissed by the medical community as malingerers."

That's why Tinsley wants to raise awareness of the tick-borne disease, particularly in the medical world. "Acupuncturists, chiropractors, physical therapists," she lists. "These people get patients who come in with vague symptoms that haven't been diagnosed– my knee hurts. You have to look at the entire landscape."

Tinsley's diagnosis came after sitting down with Dr. Fishman for two-and-a-half hours. "Health care providers need to look at the big picture– not that one sore shoulder or one memory loss," she advises.

Lynchburg has a Lyme Disease chapter; Charlottesville does not. "It is here," she says. "If not, Tim Kaine wouldn't have declared May Lyme Awareness month."

Tinsley is on her own mission to raise awareness, and she takes a proactive approach to prevention. Her kids, who are outdoors all the time, get daily tick checks at the end of the day. She's distributed information to schools to alert parents to the symptoms. 

"A lot of people, who have way worse stories than mine, end up in wheelchairs unable to walk with memory loss that's very debilitating," she says.  

Tinsley is striving toward a different outcome with her own Lyme Disease: dormancy.