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Why patients are caught in the battle over treating chronic Lyme disease

Lyme disease is on the rise. Despite this, it's not well-understood and the chronic version of the tick-borne disease remains a controversial diagnosis, making it difficult for patients to get treatment. Dr. Brian Goldman examines how the so-called "Lyme Wars" developed and how patients have been caught in the crossfire.

Medical experts and guidelines divided over chronic or post-treatment Lyme disease syndrome

Jane Bailey, a Nova Scotia woman who had to leave Canada to get treatment in the U.S., is part of a vocal patient movement that's demanding more recognition of chronic Lyme disease. (Submitted by Jane Bailey)

For much of her life, Jane Bailey was in peak physical condition. But that all changed in the summer of 2013, when a tick made a temporary home inside her ear canal.

"It was in there for three-and-a-half days," she recalled. By the time she got it removed, "it was the size of a kidney bean."

The 48-year-old Nova Scotian biology teacher with a military background is convinced she's been suffering from persistent symptoms of Lyme disease ever since.

A month after her vacation, she began to experience fatigue, joint pains and heart palpitations. She couldn't sleep and had trouble remembering names.

I was skeletal ... and all my muscles were atrophying.- Jane Bailey


She didn't see a doctor until nine months after the tick bite. Both her doctor and later an infectious disease specialist told her they didn't suspect Lyme disease. But because of the tick bite, she was given a three-week course of antibiotics.

Still, the symptoms persisted — and her weight began to plummet.

"I was below 95 pounds. I was skeletal. It was just falling off me, and all my muscles were atrophying," she told White Coat, Black Art host Dr. Brian Goldman.

Left: Jane Bailey in Sept. 2013, during her trip to the Grand Canyon. 'I weighted 159 pounds and was very fit, healthy and strong.' Right: Bailey in March 2015, shortly after being treated with antibiotics for Lyme disease. 'I was very weak and gravely ill,' she said. (Submitted by Jane Bailey)

"If I did manage to walk, I looked like an 80-, 90-year-old woman stooped over, trying to shuffle along in extreme pain. It was the worst time of my life."

By that time, Bailey began to do some research herself. It turns out she's one of a number of patients caught up in a contentious debate in the medical community about how to treat long-term or chronic cases of Lyme disease — or even whether the condition exists at all.

Johns Hopkins University's Dr. John Aucott hopes to develop a blood test that would diagnose Lyme disease at any stage. ( Johns Hopkins University)

Dr. John Aucott, associate professor in the school of medicine at Johns Hopkins University in Baltimore, believes chronic Lyme disease (or post-treatment Lyme disease syndrome) exists, but says that currently, it can only be identified by symptoms that can also be indicators of other diseases.

"There's some people that don't really believe that this chronic illness is very significant. Maybe they might even think it doesn't exist — or if it exists, it's mild and not clinically that important," said Aucott, who is also director of Johns Hopkins University's Lyme Disease Research Center.

"And then there's other groups of patients and physicians that have a different opinion: that it's more common and much more significant and really demands a more aggressive approach."

Dr. John Aucott, director of Lyme Disease Clinical Research Centre, Johns Hopkins University, Baltimore


Doctors and medical experts agree that patients with new cases of Lyme disease should get one course of antibiotics — two, if necessary.

But the consensus is thrown out the window when it comes to patients like Bailey whose symptoms have gone on for months and even years.

Some infectious disease experts worry that the additional rounds of antibiotics for a confirmed case of chronic or post-treatment Lyme disease syndrome might contribute to antimicrobial resistance that has given rise to so-called superbugs in recent years.

In its 2006 guidelines for Lyme disease, the Infectious Diseases Society of America (IDSA) denies the existence of chronic or post-treatment Lyme disease syndrome altogether.

In a 2019 draft of the new guidelines, it acknowledged that some patients have "persisting or recurrent fatigue, musculoskeletal pain, neurocognitive and other non-specific subjective symptoms."

But in the absence of laboratory confirmation, the IDSA is highly sceptical that those symptoms are caused by a chronic Lyme disease infection.

Deer ticks are smaller than the common brown dog tick and can be vectors for Lyme disease.
Tick-borne Lyme disease is not well-understood by many physicians and the chronic version remains a controversial diagnosis, making it difficult for patients to get treatment. (Ben Garver/The Berkshire Eagle/The Associated Press)

The International Lyme and Associated Diseases Society (ILADS), however, recommends antibiotics when a chronic Lyme disease infection is judged to be a possible cause of the ongoing symptoms that affect the patient's quality of life.

Most doctors, including those in Canada, rely on the IDSA guidelines. That's led some patients to form vocal advocacy groups that demand more aggressive treatment based on the ILADS guidelines.

When Bailey asked about the ILADS​​​ guidelines, her infectious disease specialist instead severed their patient-doctor relationship.

"I wanted to discuss the pros and cons. It wasn't anything that [the doctor] particularly wanted to talk about with me. She shot me down with regards to anything to do with the ILADS guidelines," she said.

Jane Bailey has had serious health issues since being bitten by a tick while vacationing at the Grand Canyon back in August 2013.

In 2015, at her wit's end, Bailey sought treatment from a doctor in Maine, who diagnosed her with chronic Lyme disease and prescribed multiple antibiotics.

She's now on a slow road to recovery, though she is not back to her previous state of health.

"The best part, apart from knowing that I had something that could be treated, was the validation that a doctor was willing to listen and discuss with me what was going on," she said.

An uptick of Lyme disease cases in Canada

According to the Public Health Agency of Canada, there were 2025 cases of Lyme disease in 2017, up from 992 in 2016 and only 144 in 2009.

According to the Public Health Agency of Canada, there were 2025 reported cases of Lyme disease in Canada in 2017. That's up from 992 in 2016, and 144 in 2009. (Ruby Buiza/CBC)

*The 2016 and 2017 Lyme disease cases are reported based on the updated Lyme disease case definition | Public Health Agency of Canada 

According to Dr. Isaac Bogoch at Toronto's University Health Network, the current numbers may be lowballing it.

"We know that there is the northern migration of ticks that are responsible for causing Lyme disease … there probably are under-diagnosed cases of Lyme and undiagnosed cases of Lyme," he said.

Dr. Isaac Bogoch, infectious disease specialist at the University Health Network, says there are probably under-diagnosed cases and undiagnosed cases of Lyme disease. (Craig Chivers/CBC)

To diagnose Lyme disease in the early stage, doctors look for antibodies — evidence that your body is fighting or has fought the Borrelia infection. 

Critics say early on, those antibody tests can produce false negatives, leading to missed cases. 

"Luckily, the vast majority of patients that have an infection that's from Lyme disease get diagnosed appropriately with the existing diagnostic tests," said Bogoch.

Dr. Isaac Bogoch is an infectious disease specialist at University Health Network in Toronto.

But others believe the tests miss many more cases. Just how many is up for debate.

One Canadian study from 2018, co-written by biology professor Vett Lloyd and Dr. Ralph Hawkins, suggested only 3.6 to 9.8 per cent of Lyme disease cases were being detected in New Brunswick.

Dr. Ralph Hawkins is one of the few doctors in Canada who treats chronic Lyme disease outside of the IDSA guidelines. He’s an internist and site Lead at Calgary’s South Health Campus Hospital.

'The wait and see … is the worst part'

For Mandy Green's five-year-old son Chase, the wait for a definitive diagnosis was literally excruciating.

Chase first began experiencing flu-like symptoms and a rash on his shoulder in July. An emergency doctor at their local hospital in Kemptville, Ont., as well as their family doctor, were not prepared to prescribe antibiotics without a blood test confirming it was Lyme disease.

Mother warns about Lyme disease after son's diagnosis

4 years ago
Duration 1:22
Mandy Green alerts parents to include tick inspections in daily routine for children.

While they were waiting for the test results, he was sent home with an antihistamine because doctors thought he might be having an allergic reaction.

In the meantime, Chase's condition worsened.

"He crawled across the floor onto the couch screaming that he didn't feel well and that he had a really bad headache. He had a stiff neck the entire time," Green recalled.

This time, she took Chase to the Children's Hospital of Eastern Ontario in Ottawa. It took two hospital admissions, two spinal taps and 12 days of IV antibiotics to put Chase on the mend. Still, his mother worries about the future.

"Without enough knowledge and without enough research, nobody can tell me definitively that there is going to be no symptoms. The wait and see, I think, is the worst part."

Empathy matters

Back at Johns Hopkins, Aucott is working at one of a handful of labs collecting blood samples from patients with Lyme disease. He hopes to develop a blood test that measures biomarkers that would diagnose the disease at any stage, leaving no room for debate.

"It would be transformational, because a) you could take this broad umbrella group of chronic Lyme disease patients and figure out who actually has post-treatment Lyme disease illness … and b) then you could start testing therapies better, because right now when you test a therapy, you don't have a biomarker to know if your therapy is working," he said.

Dr. Ralph Hawkins, internist and site lead at Calgary’s South Health Campus Hospital, is one of the few doctors in Canada who treats Chronic Lyme disease outside of the IDSA guidelines. He’s also a Clinical Associate Professor of Medicine at the University of Calgary. (Submitted by Ralph Hawkins)

Experts on both sides of the debate can, however, agree on one thing: they can treat patients with an extra dose of empathy.

"We need to respect our patients, and this is a group of patients who are being systematically disrespected," said Hawkins.

Written by Jonathan Ore. Produced by Dawna Dingwall.