Lyme patients say they're losing the one who will treat them

Nurse practitioner said no Austin doctor willing to practice with her

By Mary Ann Roser
Thursday, March 30, 2006

Originally published by the Austin-American Statesman

Patients with chronic Lyme disease say that after Friday, the one medical professional in Austin who has understood their misery and helped them heal is leaving the state, another victim of a medical establishment that scorns those who treat people like them.

Nurse practitioner Ginger Savely said she is moving her practice to San Francisco because she could no longer find a doctor in Austin willing to supervise her practice.

Ralph Barrera

Nurse practitioner Ginger Savely, left, is moving to San Francisco because no Austin doctor will supervise her practice. Patient Alfred Stanley must either travel to see her or find a new practitioner.

She expects about 75 of her 400 Lyme patients to follow her, but the rest will be left with scarce treatment options because few practitioners in Texas — Savely said she knows of two — treat patients the way she does for the tick-borne bacterial disease.

She gives chronic Lyme patients oral antibiotics, and sometimes injections, for many months, and sometimes several years, until their symptoms — which can include extreme fatigue, muscle pain and even heart trouble — are gone.

That protocol, supported by the International Lyme and Associated Diseases Society and followed by some other practitioners nationally, is, however, controversial. The traditional treatment for Lyme disease, which affects about 20,000 Americans a year, is to give no more than 30 days worth of antibiotics.

"You can't believe how much it hurts and distresses me to turn people away," said Savely, 55, a University of Texas nursing school graduate who once had Lyme disease.

Savely said she doesn't blame her upcoming move on her supervising physician. She knows that many traditional doctors consider her a quack, she said.

But she and other practitioners like her say their patients need ongoing antibiotics to wipe out the infection raging inside them. They contend the therapy is safe and often is the only hope for the constellation of debilitating problems their patients face.

"In all the practice years of doing this, I haven't seen the (ill) effects" of long-term antibiotics, said Savely, who thinks she developed Lyme after camping in Maryland in 1987 and recovered after a year of antibiotics. Tuberculosis "gets treated with antibiotics for 18 months, and no one says a peep about that."

Lyme disease is tricky to diagnose because there is no test that is always right. It's also tough to treat because the multiple symptoms can come and go, and the longer a person has it, the harder it is to attack.

But critics of Savely and practitioners like her across the country say that if antibiotics are going to work, they will work within 30 days.

"There's no value in giving prolonged antibiotics," said Dr. Lisa Ellis, who works in an infectious disease practice group in Austin.

Antibiotics can cause stomach trouble and other physical problems in addition to promoting resistance to bacterial strains.

If symptoms persist, something else could be wrong, Ellis said, such as rheumatoid arthritis or fibromyalgia, a syndrome with some of the same muscular and fatigue symptoms as Lyme.

"I'm aware some people feel better after they've been listened to or after they got a long course of antibiotics," Ellis said. "That doesn't prove the antibiotic did anything. That's not science."

Savely's patients who went to mainstream doctors and received 30 days of antibiotics said they got sick again when the drugs stopped. Some were told they were depressed or needed a psychiatrist.

P.J. Bailey of Kingsland said she did without antibiotics for a month during an insurance change, and her joint pain, memory problems and a sensation of bugs crawling on her quickly returned. She is taking antibiotics again, but with her husband disabled by a stroke, she can't afford trips to California.

"It's really scary, and I'm really worried about what I'm going to do," said Bailey, a 52-year-old bank loan processor. "I don't know who's going to want to treat me. Who's going to want to treat all of us?"

Dr. John Frederick, who has supervised Savely and her patients since 2000, said he could no longer bear the political pressure, which echoes years of Lyme disease dramas played out before medical boards and legislatures in Texas and other states.

He said he highly respects Savely, who was named Texas Nurse Practitioner of the Year by her peers in 2004, but realized he could not continue with her after a call from his friend Dr. Donald Patrick, executive director of the Texas Medical Board.

"It was not a threatening call," Frederick said. "It was not a call to stop treating. He said we had to be real careful treating chronically ill patients in a way that was not standard in the community."

Patrick said the board has not disciplined doctors in recent years for treating Lyme disease.

Savely was disciplined last year by the state Board of Nurse of Examiners for not following certain protocols and record-keeping requirements in treating a Lyme patient.

Some of her patients are mobilizing in hopes of changing the treatment environment in Texas.

Karen Bolin, 40, who has Lyme and is president of the Texas Lyme Disease Association, said no one in Texas knows the disease like Savely. Bolin recently wrote a letter to Gov. Rick Perry decrying the lack of medical care in Texas for Lyme patients.

Patients, including Suzanne Shaps, 47, of Austin, and David Kocurek, 57, of the Fort Worth suburb of Colleyville, in February formed Stand Up for Lyme when Savely announced she was leaving. Their goal is to educate the medical community, legislators and anyone who will listen about chronic Lyme disease.

"We hope to create an environment where doctors feel safe treating Lyme disease," Shaps said.

Legislation might be needed.

Ellis said she knows Savely has a lot of satisfied patients. But she said she has seen several patients Savely had diagnosed with Lyme who did not have it.

The reason they relapse when taken off antibiotics, Ellis said, is that the antibiotics overstimulate their immune response, causing the symptoms to reappear even though the infection is gone.

A 2003 study of 129 Lyme patients, co-authored by Dr. Mark Klempner at Boston University School of Medicine, concluded that a long course of antibiotics was no more useful in treating cognitive symptoms, such as memory and attention problems, than a placebo.

But Dr. Raphael Stricker, who supervises Savely's San Francisco practice, said the research was flawed because it considered "long-term" treatment to be three months, and the dose for two of those months was too low to be effective.

Even so, Stricker said, the paper "had a chilling effect on everyone."

New research by Dr. Brian Fallon of Columbia University could change that, said Stricker, president of the International Lyme and Associated Diseases Society. Fallon tested long-term antibiotic use in Lyme patients and found it indeed improved cognitive functioning in adults with chronic Lyme.

Alfred Stanley a 51-year-old Austin political consultant who summers in Nantucket, said he was bitten there in July and got a bull's-eye rash, a classic sign of Lyme disease.

He was diagnosed with Lyme there and prescribed three weeks of antibiotics. Afterward, Stanley developed twitching in his feet. He got back on antibiotics, and the twitching went away. After he got off again, the twitching returned and, eventually, moved to his arms.

Back in Austin, he went to Savely and has been on antibiotics for six months. He doesn't enjoy taking them, he said, but believes he won't get better without them.

"Patients should be allowed to choose," he said. "That's what patients are being denied."