Chelmsford Woman Tells of Battle With Lyme Disease

Lowell Sun - Lowell,MA,USA
Rosalyn Tavanis has to soak her hands to numb her “excruciating pain.”

A violinist who once played with ease and grace, she now has to spend hours preparing to teach violin at a Chelmsford after-school program.

“The children I teach give me so much joy,” said Tavanis. “I try hard not to show them my pain.”

Tavanis' pain is from chronic Lyme disease. In Massachusetts, Lyme disease is spread by deer ticks. If not treated early, it can cause major damage to the central nervous system, the heart and bones and joints, doctors say.

Tavanis' symptoms have been overwhelming. She's been blind in one eye and suffered from extreme nerve and skin pain. Tavanis has trouble walking and has had such severe vertigo that simple trips to the grocery store became too much to handle.

Hundreds of Lyme disease patients and activists rallied at a Statehouse hearing two weeks ago to draw attention to the disease. Some activists complained that doctors aren't doing enough to treat the disease, and insurance companies are afraid of the high costs associated with long-term care.

Tavanis is in the later stages of the disease. Despite some neurological damage, she remains highly competent and ready to fight for her cause. She wants to be a role model for other chronically ill people.

“Everyone should be their own advocate,” said Tavanis.

Tavanis has been an advocate for herself and her daughter, Angela Stone.

Recently, as part of an overview on the rise of Lyme disease cases statewide, The Sun reported on Angela's struggle with Lyme disease. Tavanis didn't know she had Lyme disease, and she passed it to Angela in utero.

“I'm heartbroken that I did this to my child,” she said.

Tavanis said the disease is often “misdiagnosed.” She was bitten by a tick in 1989, and after two weeks of antibiotics, she thought the symptoms went away. Three years later, the symptoms came back, and she said doctors “misdiagnosed” Tavanis with multiple sclerosis. She was put on high doses of steroids, which shut down her immune system.

“I felt like I was being poisoned,” said Tavanis.

She said doctors never “bothered to scratch the surface” and “dismissed her as being emotional.”

When her daughter became seriously ill, Tavanis had to fight with her primary-care physician to test Angela's blood for Lyme disease.

“I said if you draw the blood, I'll drive it down to the lab myself.”

Angela eventually tested positive for Lyme disease.

Tavanis says she's devasted by the physical and emotional impact the disease has had on her daughter and is worried about the future.

She will continue to soak her hands to play the violin, and said, “it takes so much for me to play so little.”