Manitoba researchers warn of rare but deadly complication of Lyme disease

The case of a 37-year-old Manitoba father who died from Lyme carditis has been shared in a Canadian medical journal.

A Manitoba family hopes that sharing the story of Samuel Brandt, an otherwise healthy 37-year-old father who died from complications of Lyme disease, will help raise awareness about a rare but deadly consequence of the tick-borne illness.

In the summer of 2018, Brandt was swimming in a river with his family when they noticed circular rashes on his chest and back. A few weeks later, he was diagnosed with a condition called Lyme carditis, but it was too late.

"I don't think we were even aware how long it had been going on because he was such a fun-loving, exuberant guy. He never let on that there was something really wrong," said his younger sister Jeannine Brandt.

"Thinking back, all of the symptoms he was having it should have been red light, red light for doctors."

Samuel's story was featured in a research article published Monday in the Canadian Medical Association Journal written by three Manitoba-based researchers.

Lyme carditis, which happens when the bacteria that causes Lyme disease attacks the heart, isn't very well known or well reported, says one of the co-authors, Dr. Richard Rusk with Manitoba Health, Seniors and Active Living.

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That's part of the reason the researchers took a closer look at it.

"The number of cases in Manitoba of Lyme in general have been increasing over the years so we really have to stop and think about those cases," he said.

Canada-wide, the reported numbers of Lyme disease increased from 144 in 2009 to 2025 in 2017. But according to the report, Lyme carditis is underrecognized even in areas where there's a high prevalence of the disease.

It's especially important to determine if someone has been bitten by or exposed to ticks if they're experiencing heart problems this time of year. If that's the case, clinicians need to act fast, Rusk said.

Lyme carditis can cause dizziness, fainting and slowing heartbeat, which can cause heart damage.

Before it gets to that point, clinicians need to act fast.

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"The most important thing is to start treatment. Don't wait for the test to start the treatment. Administer antibiotics."

In Samuel Brandt's case, his heart had already sustained too much damage for antibiotics to help. He died 48 hours later.

"We think it's important for clinicians to be able to see what happened to Samuel, so that they'll think about Lyme carditis when they see patients who present in a similar fashion," said co-author Milena Semproni.

"We want to make sure this type of tragedy doesn't strike another young man or woman or another family."

Jeannine Brandt says her family got involved in the research project to raise awareness and put pressure on Canadian health care systems to take the disease more seriously.

"We really want to entreat those medical systems to start having more reliable and more comprehensive testing for Lyme disease and it should be available quickly," she said.

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VIDEO: PROTECTING YOUR PETS FROM TICKS

SCIENCE 'FAR BEHIND'

These strides are what many people impacted by Lyme disease want, says Marnie La Page, who is a part of the support group Manitoba Lyme and Tick-Borne Illnesses.

"It can be very debilitating fatigue where you can't get through the day. It's brain fog where you can't function as you normally would," said La Page.

"It can affect your joints where you're very achy and it's hard to move and then the heart is a big one, where your heart is really affected."

Why patients are caught in the battle over treating chronic Lyme disease Even so, sometimes the proof of the disease doesn't present in test results, and most of the time, people don't notice being bitten by a tick.

She wants Lyme disease to be considered earlier by physicians, recognizing that not every patient has classic symptoms.

"From our standpoint we would like to see everybody get treated right away because science is so far behind but the people are getting so sick," she said.

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'BE AWARE'

Rusk says it's also key for people to know they can prevent tick-borne illnesses.

"If you're going to Bird's Hill or out into the forest or even some of the parks here in the city, you need to be aware to check for ticks that day," he said.

In addition, Health Canada recommends using trails whenever possible, wearing long pants, using tick repellant and washing clothes after going out in the woods.

Rusk added that if you do find a tick or get bitten by one, you should remove it properly and take note of the day you find it. For the next month, monitor symptoms in case you need to report it to a health care provider.

This article was written for the CBC by Rachel Bergen.