Originally published by the Austin-American Statesman

Report calls for greater awareness of Lyme disease dangers in Texas

By Mary Ann Roser
November 16, 2000

Lyme disease — the illness that gets no respect — is on the verge of being taken seriously in Texas. A recent report by a legislative committee says Texans are at risk of getting the disease from blood-sucking ticks, and those who do catch it are not receiving adequate care. Too many doctors think Lyme, more prominent in the Northeast, can't happen here, and many patients are forced to search elsewhere for treatment.

The report recommends that Lyme disease and other tick-borne illnesses be the target of massive education and prevention efforts, some of which already are under way. Those recommendations were unveiled at the Capitol on Wednesday during a forum on tick-borne diseases.

For years, patients in Texas have complained they were misdiagnosed, mistreated and turned away by doctors who know little about Lyme. Few doctors in Texas and elsewhere have been willing to treat long-term sufferers because of criticism and even ostracism by medical boards and other physicians. They are responding to critics who contend two or three weeks of antibiotics are sufficient. But many Lyme disease patients find they get more sick as soon as the drugs stop.

Some doctors say insurance companies discourage long-term treatment because of the cost. About 50 physicians nationally have been investigated or disciplined, mainly because of long-term prescriptions of antibiotics.

“It's become more of a political discussion than a medical discussion,” said Dr. Audrey Stein Goldings of Dallas. “It's hard to believe something the size of the head of a pin can cause so much trouble and so much controversy.”

Stein Goldings spoke on a panel Wednesday at the invitation of the Senate Administration Committee, which produced the report.

“Doctors don't like dealing with something they're not familiar with,” Stein Goldings told an audience of 35.

Dr. Joseph Burrascano of East Hampton, N.Y., who treated some Lyme patients from Texas, is now fighting misconduct charges. Dr. Hamid Moayad of Fort Worth was disciplined in 1997 for his treatment of Lyme disease patients, and although the restrictions on his medical license were lifted a year later, he no longer will treat Lyme patients with chronic pain, he said.

Lt. Gov. Rick Perry directed the Senate Administration Committee to review Lyme and other tick-transmitted diseases, including Rocky Mountain spotted fever, because of complaints from Lyme disease patients. The committee is chaired by state Sen. Chris Harris, an Arlington Republican whose Lyme disease went undiagnosed for years because doctors, including those at the Mayo Clinic, did not know what was causing his severe pain and the damage to his heart. It wasn't until Harris' dog died of Lyme that the vet figured out what was ailing the senator.

Harris' committee is recommending that the state beef up education efforts, encourage medical schools to teach about Lyme and develop a research and diagnostic center at the University of North Texas Health Science Center.

“The rate of occurrence of tick-borne illnesses in the U.S. has increased dramatically over the last few years,” the report said. “This growth is second only to AIDS/HIV among infectious diseases.”

Between 1990 and 1999, the state received reports of 2,039 possible cases of Lyme disease, said Julie Rawlings, an official with the Texas Department of Health. That could be the tip of the iceberg because many doctors don't know they are required to report it.

Pat Ricks, an Austin novelist who got Lyme disease in Mexico in 1996 along with her husband and their two children, said the family has lived a nightmare.

The Ricks' could not find anyone in Austin to treat them for their long-term ailments and ultimately traveled to Dallas to get help from Stein Goldings.

Virginia Ricks, who was 15 at the time, was hit hardest and had to drop out of high school for 1½ years. She lost her friends and was on antibiotics for three years. She's now well and in college.

Her brother, Ian, had headaches and memory problems. Pat Ricks and her husband, Tom, had severe aches and fatigue.

“There were times when I would be in the bathtub and I would be afraid I wouldn't be able to get out,” Pat Ricks said. “You're sick throughout your whole body.… It completely consumes your life.”

Early diagnosis is critical, Stein Goldings said, but no test is 100 percent reliable. Harris' committee hopes the North Texas center will be able to develop a foolproof test.

If not treated early, the disease is hard to manage and can cause permanent damage.

“Generally, by the time I see people,” Stein Goldings said, “they're in a heap of trouble.”

“It's hard to believe something the size of the head of a pin can cause so much trouble and so much controversy.” Dr. Audrey Stein Goldings of Dallas