Jeanna Duerscherl | The Roanoke Times

Joe LeBlanc of Amherst talks about his wife's battle with Lyme disease during a Governor's Lyme Disease Task Force meeting held Tuesday evening in Roanoke.

• Explore our interactive series on the debate over chronic Lyme disease

An octogenarian flower gardener from Fincastle. A Bedford County dairy farmer. A Roanoke nurse and former triathlete.

About 50 people waited to share a five-minute version of their battle with Lyme disease with the Governor's Lyme Disease Task Force on Tuesday night in Roanoke.

Chartered with making recommendations on the diagnosis and treatment of the controversial disease, the task force listened for three hours as patients told their stories, many of them choking back tears as they read from prepared remarks.

In some cases, relatives testified on behalf of loved ones who were too sick to speak. In Wayne Sowder's case, he read for his wife, Johnette, who died last fall of complications he connects to chronic Lyme.

The story became familiar as the three-hour meeting marched on -- a tick bite, followed by flulike symptoms, followed by debilitating pain and neurological issues that stretched on for years in many cases.

Nearly all of those testifying spoke of being dismissed by area doctors, of being told "there is no Lyme in Virginia," despite more than 1,000 confirmed cases by the Virginia Department of Health last year.

Halfway through the meeting, task force Chairman Michael Farris became so frustrated by repeated stories of doctor disbelief that he broke out of listening mode to interject: "There's controversy, and to some degree people are entitled to their own opinion. But they're not entitled to their own facts.

"And the facts are: There is Lyme disease in Virginia," citing some 200 confirmed cases of Lyme in Loudoun County alone, where he lives. "My own doctor diagnoses about eight cases of Lyme per week, so it's shocking to hear stories like these time and time again."

The only physician who testified was Lexington's Dr. Cathryn Harbor, who is sought out by Lyme patients across the region. She said she's made clinical diagnoses of 150 Lyme cases in the past year. "I find that patients often become remarkably and sustainably better on antibiotics," she said.

She asked the task force to recommend county-by-county testing of ticks in Western Virginia, which has never been done, and to seek advice from veterinarians, who tend to test for and treat the disease more aggressively than physicians.

"The doctors aren't getting the message that there's a problem," she said. "They don't see it because you can't really see what you don't believe exists."

Mark Pace of Roanoke said his family has spent $180,000 on out-of-pocket expenses for the treatment of wife Amy's chronic Lyme, including IV antibiotics, travel to see Lyme specialists in five states and treatment for multiple co-infections such as Babesiosis, a malarialike illness.

"We couldn't get a home-health aide to install the needle in her port because it wasn't covered by insurance, so I had to learn to do it myself," he said.

Maude Steinberg, a former nurse, described losing her house and her career to the illness. "I've lost it all," she said, clutching a sheaf of papers containing the narrative of her 11-year illness.

Her main message for Roanoke-area doctors: "I'd like to see more compassion and understanding. To be treated with such humiliation has been horrible."

Although studies cited by the Infectious Diseases Society of America cast doubt on the effectiveness of long-term antibiotic treatment, patient after patient shared stories of it being the only thing to bring them relief.

Joe Rowell, a livestock farmer in Bedford County, said he'd been too sick to work until Harbor put him on oral antibiotics. "I'm a new man today just in a month," he said. "I don't lay in the bed all day like I used to. I'm out working again, and I appreciate it."

In an earlier interview, Farris said he hopes the task force recommendations will result in legislative change, including the possible reintroduction of a shelved bill to protect doctors who prescribe long-term antibiotics. Farris' wife, Vickie, and seven of their 10 children have all been diagnosed with Lyme disease -- leading some in the medical establishment to question whether he can be unbiased given the heated nature of the debate.

The task force report is due to be compiled and passed on to Gov. Bob McDonnell in the spring. "The biggest thing we want is more focus on Lyme disease," Farris said.

"This is a disease that's going to cause a whole lot of people a lot of pain and grief, and we need to intervene so we can prevent and, I hope, eventually cure it.

"What kind of America are we if we don't try to make something better if we can?"

Virginia residents unable to attend the task force meeting are invited to share their testimonies via e-mail with the task force by writing to lyme@phc.edu.