Lyme disease left state Sen. Chris Harris with rotted-out bones and the realization that treatment wouldn't come easily.
"I'm one of those people who can tell you what it can do," said Harris, whose battle with Lyme disease started in 1990. "I'm a survivor."
Lyme disease also caused a heart attack, Harris, R-Arlington, testified before a recent hearing of the Senate Health and Human Services Committee. After 21/2 years without a diagnosis, he was finally treated with long-term antibiotics.
Others aren't so fortunate.
They travel out of state for treatment because doctors in Texas fear disciplinary action from the state medical board for overprescribing medication and failing to follow the "standard of care." While that protocol calls for antibiotics over less than a month, some physicians believe that treatment should be more intense and can take much longer.
Two proposed bills would use continuing medical education to address the problem faced by the approximately 100 people in Texas each year who get Lyme disease, which is typically spread by a tick bite. In 2009, there were 88 confirmed cases in the state and 30,000 nationwide, according to the Centers for Disease Control and Prevention.
The legislation would increase the opportunities for Texas practitioners to learn more about treating the disease, said Dave Claunch, a Lyme disease advocate. As more doctors become aware of the latest research, they may be more inclined to use long-term antibiotics, he said.
The bills would also allow physicians to defend themselves from disciplinary action by demonstrating a knowledge of the latest science. Both bills could be voted on within the next couple of weeks.
"Basically the bills allow doctors and nurses to treat Lyme disease without the threat of their license being revoked," said Patti Plummer, co-founder of the North Texas Lyme Disease Support Group.
Harris had to find a physician willing to line up 16 or 17 doctors to prescribe medication. Doctors pumped antibiotics into his arms from plastic containers the size of ostrich eggs four times a day for about 17 days, he said. Treatment lasted close to three years.
Plummer, 40, of Arlington, who has struggled with the disease for more than 25 years, said most people don't have that option.
The disease, which can cause flu-like symptoms and a bull's-eye rash, can lead to arthritis, facial paralysis and neurological problems.
In Harris' case, it attacked his bones.
"Both shoulders were replaced with titanium. And it caused me to break my left foot completely off," he testified. "It's all put back together with various steel and screws."
Harris, 63, said that his disease has been in a state of arrest for about a year but that some days, his hands still cramp severely. At times, he said, he must drink from two Styrofoam cups put together because the pressure from cramping would crush a single cup.
There are two schools of thought on treating Lyme disease.
Most doctors tend to follow the protocol established by the Infectious Disease Society of America, which calls for oral antibiotics for 10 to 28 days.
But a few follow a protocol set by the International Lyme and Associated Diseases Society. It calls for "a duration of therapy guided by clinical response rather than an arbitrary treatment course."
The society believes that physicians should consider trying different antibiotics and should be open to longer treatment if the illness is more complicated, said Dr. Daniel Cameron, past president of the society and a Lyme disease expert.
"Not everyone is well at 30 days," he said.
Few doctors in Texas are willing to follow that protocol for fear of disciplinary action by the Texas Medical Board, said Claunch, who is mayor of West Lake Hills. A bias against the society keeps the board from considering the lengthier treatment despite scientific and medical validity, he said.
The Texas Medical Board relies on well-documented standards of care based on expert opinion, said Leigh Hopper, spokeswoman for the board.
"There is no rule that specifically says a physician can't prescribe long-term antibiotics, but physicians are expected to uphold the standard of care," she said. "Medications that have the potential to be harmful, have no benefit and are extremely expensive fall below the standard of care."
The Texas board receives fewer than five complaints a year about Lyme disease treatment, and only one physician has been disciplined in the past two years, Hopper said.
Dr. Ron Wilson, a Denton obstetrician-gynecologist, was disciplined in 2010 for treating a patient with chronic Lyme disease by prescribing inappropriate antibiotics. He was ordered to pay a $2,000 administrative penalty and enroll in continuing-education courses.
Wilson calls Lyme disease "a complex clinical condition" and said physicians need to find solutions together.
"No one has all the answers. However to stop treating at an arbitrary timeframe is ludicrous and does not fit with the microbiological and physiological realities of the infection," he said in a statement e-mailed to the Star-Telegram.
Disciplining physicians makes it harder to get treatment in Texas, Plummer said.
"My memory is going; I'm shaky and going numb," Plummer said. "That's why I'm praying these bills pass; I don't have anyone here who can treat me."
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