Lyme patients want reporting rules changed

Detroit Free Press - Detroit,MI,USA
There was a point when Connie Siese, 57, of Wayne could not remember whether the number five was greater than seven. She would just trust cashiers to give her the right amount of change when she went shopping.

"I could not count. I could not recognize money," she said.

It was a symptom of Lyme disease, which Siese got from a tick 12 years ago in the classroom where she worked. The disease showed up on her face with the characteristic bulls-eye rash around her bite, and Siese went on to experience temporary paralysis, pain, exhaustion and memory loss.

These days, with the help of antibiotics, her symptoms have eased and Siese is able to make it through her days by resting and surrounding herself with reminder lists.

Siese and nearly 200 others attended the Michigan Lyme Disease Association's fourth educational event Sunday in Pontiac and called for broader recognition of the disease.

Linda Lobes, association president, said doctors are unfamiliar with Lyme disease and interpret symptoms as psychological problems. Because of the range of symptoms, patients, advocates and doctors say the disease is routinely misdiagnosed, often as multiple sclerosis, and undercounted in Michigan.

Michael Ledtke, 54, a doctor in Saginaw who primarily treats patients with Lyme disease, said he has about 500 active patients.

Ledtke said the disease is undercounted because the state reports only positive lab test results -- not doctors' diagnoses based on symptoms.

"I think that Lyme" disease "is pretty much epidemic in the state," Ledtke said.

The daughter of Oakland County Executive L. Brooks Patterson, Mary Patterson-Warner, got Lyme disease when she was in high school. Patterson, who attended Sunday's event, said health officials need to recognize the disease as a credible public health threat.

State health officials "need to be more accepting of the data that's out there," Patterson said. "It's the front-line doctors whose information should be given more weight."

T.J. Bucholz, spokesman for the Michigan Department of Community Health, said Lyme disease in the state is concentrated in southwest Michigan and the Upper Peninsula. He said health officials are treating Lyme as an emerging disease.

"I'm certain that we follow the CDC guideline in terms of the reporting of the disease," Bucholz said, referring to the federal Centers for Disease Control.