Lyme disease treatment stopped suddenly

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Elizabeth Wood received antibiotics daily for as long as three months at a time to help ease her suffering. The intravenous process is controversial in the treatment of Lyme disease patients. (MIKE DEAL / WINNIPEG FREE PRESS) Photo Store

An Emerson woman is raising privacy concerns after she said her doctor was ordered by a rural regional health authority to stop treating her with intravenous antibiotics for Lyme disease.

Elizabeth Wood, who contracted the disease in the late 1980s and still suffers from its effects, said her Altona doctor was told this week to halt prolonged antibiotic treatment until Wood sees an infectious disease specialist. That could take months to arrange.

Extended periods of antibiotic treatment are controversial in the treatment of Lyme disease patients. Medical authorities frown on the practice, saying it can do more harm than good.

Wood, though, said without the treatments, she would be unable to live a normal life.

"You can't walk. I was bedridden for years," said the 64-year-old, who suffers from several other debilitating symptoms in the absence of treatment, including an irregular heart beat.

Wood said she was receiving intravenous treatments at an Altona clinic this week when she was told by her doctor the Southern Regional Health Authority (also known as Southern Health) had put a stop to them. In the past, she's received the daily treatments for as long as three months at a time, she said.

She wonders how Southern Health learned of the treatments and is upset it intervened. "They've got their fingers on my private information. I feel that my privacy was invaded when they called my doctor."

Dr. Denis Fortier, associate vice-president of medical services for Southern Health, said while he could not speak about a specific case, he would never order a doctor to stop treatment of a patient.

"We give recommendations and the doctor takes it or leaves it, basically," he said.

Pressed on whether there is an expectation that accompanies a regional health authority recommendation to a doctor, he said: "There is an expectation, sure. But I'm at arm's length."

Asked how the health authority may learn of a particular treatment a doctor is providing to a patient, Fortier said authorities are sometimes tipped off by other professionals, including pharmacists, if someone is breaking with established protocols.

"If someone is not following that procedure, we might hear about it," he said.

As for prolonged antibiotic treatments for Lyme disease, Fortier said medical literature suggests it may be harmful.

"We very much want to be treating all of our patients with the best evidence-based care possible to cause the least harm," Fortier said. Prolonged antibiotic treatment can cause potentially life-threatening effects as well as the development of super bugs, he added.

Fortier was asked about the ethical considerations in removing a patient from a controversial treatment that may, in fact, improve the patient's health and well-being. He said that's why regional authorities would want to seek an outside opinion.

"That's where we absolutely want to say, 'Listen, we're OK with this kind of treatment providing we have expert opinion. We don't want to be the only ones making that determination,' " he said.

Wood has become an activist in the treatment of Lyme disease in Manitoba. The disease is spread to humans through tick bites.

Infectious disease experts say that all stages of Lyme disease, no matter when it is diagnosed, can be cured with three or four weeks of antibiotics. While some symptoms can persist, the disease is gone, they say. That notion is being challenged by some who believe the disease can persist -- they believe diagnostic tests for the disease are too narrow.

The Free Press chronicled Wood's battle for treatment in 2011. Other chronic Lyme patients contacted her for help after the story appeared. Several were also being treated by the same rural doctor Wood has been seeing.

Wood's doctor could not be reached for comment. He left the Altona clinic this week and is setting up practice in Winnipeg.

larry.kusch@freepress.mb.ca

Republished from the Winnipeg Free Press print edition February 16, 2013 A7