SACO — Lisa Lawlor couldn’t find a doctor in Maine willing to treat her chronic Lyme disease, so she traveled to Portsmouth, New Hampshire, to see a physician who prescribed her six months of antibiotics – a much longer treatment than typically recommended.
Lawlor’s experience is becoming more common as the disease spreads and its victims seek relief from the often debilitating illness, according to advocates for Lyme patients.
A bill before the Legislature would prohibit the Maine Board of Licensure in Medicine from suspending or revoking the licenses of doctors who prescribe such long-term antibiotic treatments. If the measure passes, Maine would become the last state in New England to take such a step.
Legislative involvement in the treatment of Lyme disease reflects divisions in the medical community over the nature of the long-term affliction suffered by some Lyme patients, and how to balance giving those people relief with the broader social and public health concerns related to long-term antibiotic therapy. In some states, doctors have been disciplined for prescribing long-term antibiotics in Lyme cases.
Lyme disease has ballooned in Maine in recent years, as habitat has expanded for the ticks that carry the disease. The Maine Center for Disease Control and Prevention reported a record 1,388 confirmed cases in 2014, up from 1,376 in 2013. In the early 2000s, there were only a few hundred cases of Lyme per year in Maine.
RELIEF FROM LONG-TERM ANTIBIOTICS
Lawlor, of Saco, said she suffered from severe fatigue and chronic pain and could barely walk. Lawlor saw three Maine doctors in 2013 and early 2014, she said, but none would prescribe her more than three months of antibiotics because they feared sanctions by the medical board if they did so.
So she went to New Hampshire for treatment, and she says it worked.
“Nine months ago I was having a good day if I could get out of bed and use the bathroom independently,” Lawlor, 43, said with a wry smile. “I went a really long time without looking at myself in the mirror.”
Since last summer, she has become less frail, gained weight and no longer uses a wheelchair.
Lawlor, who finished her treatments in December, still walks with a cane, but said she now can live close to a normal life. She cooks meals, can walk around the grocery store and can finish her morning chores.
In the next few months, she hopes to completely recover and find a job in health administration, the field that she worked in before she fell ill. She said her symptoms became progressively worse in 2013 until she could no longer work in January 2014.
CONFLICT IN MEDICAL COMMUNITY
Stories like Lawlor’s have become commonplace for Lyme sufferers, advocates say.
“We hear cases like that all the time,” said Angela Coulombe, who recovered from Lyme disease and operates the Maine lymebuddies.com support group. “This is a fantastic bill.”
But whether long-term antibiotics offer real treatment is hotly debated in the medical community.
There’s even disagreement over what to call the disease – some refer to chronic Lyme as post-treatment Lyme disease syndrome, reflecting the view that long-term symptoms persist only after the Lyme bacterium has been eradicated. But other researchers say the Lyme bacterium can be present in the body longer than originally believed. The U.S. Centers for Disease Control and Prevention website notes that most scientists believe long-term symptoms can persist after the bacteria have been purged from the body. But the federal CDC does not discredit the minority view that in some cases the bacteria hide in deep tissue, and says more research is needed.
Medical experts agree that if the Lyme infection is discovered within a few months after the tick bite, a few weeks of antibiotic treatment is effective. But when it’s not diagnosed – as is often the case among people who don’t know they’ve been bitten by a Lyme-carrying tick – symptoms can persist for years, and the disease is often misdiagnosed.
A DISBELIEVER ON LONG-TERM USE
Dr. Phillip Baker, executive director of the American Lyme Disease Foundation in Lyme, Connecticut, said antibiotics are ineffective for patients after the first few weeks.
“After a few weeks of antibiotics, the infection is cured. Additional antibiotics are not going to do anything and could be harmful,” he said.
Research indicates that Lyme symptoms may persist long after the bacteria are gone, Baker said. The symptoms – such as inflammation, joint pain and fatigue – often resolve themselves over time, but recovery may take months or years, he said.
Patients taking long-term antibiotics may think it’s the medicine that’s helping when it’s really because the symptoms are slowly dissipating, Baker said.
“Antibiotics are not going to make the symptoms go away any faster,” he said, adding that long-term antibiotic use can “alter the microbial flora in the intestinal tract,” making people more susceptible to intestinal infections.
Others dispute Baker’s view, with some physicians saying the long-term antibiotics could be beneficial.
DECISION BETWEEN PATIENT, DOCTOR
Dr. Bea Szantyr, a retired Lincoln County doctor who has been studying Lyme disease for many years, said National Institutes of Health clinical trials of antibiotics treating Lyme disease stopped after three months of treatment. So she said there’s no data on whether six or nine months of antibiotics or longer would be helpful. But she said some research has pointed to the Lyme bacterium “hiding out” in deep tissue or within cells, which makes it difficult to treat.
“What we’re left with is patient experience, which is not as good as a double-blind, placebo-controlled trial, but it’s all we have,” Szantyr said. “Are we not going to treat people who are ill today while we’re waiting for the research to be done years from now?”
Szantyr said long-term antibiotics are prescribed to treat other infections, such as tuberculosis and leprosy, so such months-long treatments are not unheard of.
Lawlor, the Lyme patient in Saco, received her antibiotics intravenously, which she believes helped her recover. Lawlor wouldn’t reveal the name of her New Hampshire physician because of the stigma attached to the treatment, and when she contacted her physician at the request of the Press Herald, the doctor declined to be interviewed.
In some cases, intravenously administered antibiotics can reach bacteria embedded in deep tissue when orally ingested antibiotics are ineffective, Szantyr said. Lawlor took antibiotic pills for nine months, but said she only began to feel better after she started receiving the medicine through an IV in May.
“Even if it was a coincidence, I’m better, so I don’t care what people think one way or another,” said Lawlor, whose rose-colored cheeks now complement her red hair, in contrast to her pale complexion last summer. “These are decisions that should be made between patients and their doctors.”
BILL TO PROTECT DOCTOR LICENSES
The patient-doctor relationship is at the heart of the Lyme legislation sponsored by Rep. Deborah Sanderson, R-Chelsea.
Sanderson said the bill simply allows doctors to prescribe such antibiotics if they believe the treatment will work, without being concerned about the impact on their licenses.
“We are seeing families having to seek care out of state,” Sanderson said.
In other states, some doctors who prescribed long-term antibiotic treatments ran into trouble with state medical boards before laws similar to Sanderson’s bill were approved. In 2010, a Connecticut doctor was fined $10,000 and had his license placed on probation after prescribing long-term antibiotics for a Lyme patient, according to the Hartford Courant.
Andrew MacLean, deputy executive vice president of the Maine Medical Association, a group that lobbies state government on behalf of physicians, said the MMA has not yet taken a position on the bill. He said it is sympathetic to the differing views on the disease.
While the debate will continue in the Maine Legislature this spring, Madison Lawlor, 18, Lisa’s daughter, said she’s just happy her mom is back.
“She was very ill and not herself at all, and it’s very hard to see someone you love go through that,” Madison Lawlor said. “She used to be very outgoing and outspoken, and she’s getting that back now. We’re happy the medications worked.”
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