Family shares man's story in hopes of raising awareness of fatal heart effects of Lyme disease

TORONTO -- A Manitoba family is sharing the story of Samuel, a healthy 37-year-old father who died from complications of Lyme disease, in the hopes of raising awareness of the rare severe cardiac outcomes that can result from the tick-borne illness.

It’s a timely message, as Canadians sick of being cooped up due to COVID-19 head outside, and as the black-legged tick expands to new areas of the country.

Lyme disease is an infectious illness caused by the bacteria Borrelia burgdorferi when it is transmitted to humans by an infected black-legged or deer tick. Although the main sign to look for is a bull’s-eye rash, doctors are warning that there are other symptoms that can be missed if people aren’t paying attention.

When the bacteria attacks the heart, it’s called Lyme carditis. That can result in abnormalities to the heart’s rhythm in a small group of people, according to the authors of an article published Monday in the Canadian Medical Association Journal.

That was the case with Samuel, whose story was outlined in the journal.Though his family lives in a remote and wooded area of Manitoba and he had spent time outdoors, he didn’t believe he had been bitten by a tick.

In a video posted to YouTube, Samuel’s family and doctors reflect on his life and his death.

About three weeks before Samuel’s death in late July 2018, the family gathered on their parents’ farm and went swimming in a river.

One of Samuel’s four sisters, Leah, worried about a rash she saw on him. She says he was quiet and withdrawn.

“That was really odd for him because he’s usually the life of our parties,” she says in the video.

Leah mentioned Lyme disease that day, but Samuel dismissed it, attributing his symptoms to the flu and saying he hadn’t removed a tick. He believed the rash on his back and chest were from getting scratched while picking raspberries.

Weeks after Samuel’s initial symptoms had abated, he developed heart palpitations, shortness of breath and chest discomfort. He drove himself to a Winnipeg hospital.

“I could tell right away he was very sick and in trouble,” said Dr. Terence Wuerz, an infectious disease specialist at St. Boniface Hospital.

His heart rate was low and an ECG showed a complete heart block. Taken together with the history of rash and flu-like symptoms, along with an exposure to ticks in a rural area, Wuerz suspected Lyme carditis.

Doctors initiated antibiotic treatment to fight the bacteria that causes Lyme disease but about 12 hours after admission, Samuel became sweaty and his blood pressure dropped dangerously low, says Wuerz, a co-author on the CMAJ article.

The resuscitation team was called and administered CPR and defibrillation but they could not restart his heart. He was taken to the ICU and put on life support.

Samuel died within hours of arriving at the hospital, before tests confirmed the diagnosis of Lyme disease.

Cases like Samuel’s are rare.

“[It] was surprising to the doctors and nurses who looked after him, because we are not accustomed to seeing such severe, fulminant Lyme carditis cases which deteriorate so rapidly, really within hours of presenting,” Wuerz says in the video.

According to the CMAJ article, there are only 10 other North American cases of sudden cardiac death attributed to Lyme carditis in the literature, with victims ranging in age from 17 to 66. The authors warn that rashes don’t always follow the typical bull’s-eye pattern.

Recently doctors documented a case of a woman who developed an atypical large red rash on her neck and shoulder. She also became dizzy and developed an irregular heart rhythm. Recalling a recent tick bite, she sought medical help and tested positive for Lyme carditis.

Some patients have such severe cardiac problems that they require pacemakers and, in rare cases, heart transplants. Adrian Baranchuck – the woman's physician and a professor of medicine at Queen's University in Kingston, Ont. – said the patient in this case was able to recover following antibiotic treatment.

As the weather gets warmer, Baranchuck is warning doctors and patients to watch out for unusual symptoms.

"If you notice any unexpected alteration in the electricity of the heart, please contact a specialist, because a course of antibiotics may prevent the need (for an) implanted pacemaker for the rest of the life of these patients that are otherwise healthy," Branchuck told CTV News.

Black-legged ticks have spread across Manitoba over the last few years, says Dr. Richard Rusk, a public health physician with the provincial government, a co-author on the article. He warns that climate change will bring with it the emergence of new diseases in the coming years.

When a tick carrying Lyme infection bites a human, the bacteria can spread quickly through the blood stream, triggering rashes, fatigue and sore throats. And unchecked, it can attack the brain and heart, and prove fatal.

Samuel’s sister Jeannine says growing up in a wooded remote area meant wood ticks were a part of life.

“As a child, I had wood ticks all the time that we were never freaked out about. But I would have to say that in the last five years, there has been a huge boom in the amount of deer ticks we see.”

Samuel, who was described by his sisters as wild, adventurous and always healthy, was also a loving, kind-hearted, understanding and sweet husband, says his wife Grema. Their son was just four months old when Samuel died.

His family is sharing his story in the hopes that it can raise awareness about the danger of Lyme disease and the need for speedy testing. 

If the disease is diagnosed quickly, a full recovery is possible.

But Samuel’s story ended tragically because he downplayed his symptoms. His family say Samuel didn’t go to the hospital in time, and they hope his story will convince others to seek out faster treatment.

“For me, the most striking thing about Samuel’s story is how fast everything progressed,” Dr. Milena Semproni, an infectious disease fellow at the University of Manitoba and the article’s co-author, said in the video about his case.

Telling Samuel’s story is an opportunity to educate clinicians about the possibility of Lyme carditis and the need to start antibiotics even before testing can confirm Lyme disease.

“We want to make sure this type of tragedy doesn’t strike another young man or woman or another family.”