Lyme carditis: Family warns of rare Lyme disease complication after 37-year-old Manitoba man dies

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In July of 2018, Samuel, age 37, died from complications of Lyme disease (Via YouTube)

Now that many Canadians are spending more time outside with warmer weather, they need to be aware of ticks. 

They also need to know that Lyme disease, the illness caused by bacteria that some ticks carry, can cause rare but deadly heart-related symptoms.

When Lyme disease bacteria enter the tissues of the heart, Lyme carditis occurs. The term refers to a range of cardiac complications that can affect three to four percent of people with Lyme disease, according to a new study published in the Canadian Medical Association Journal.

The most recognized form of cardiac involvement in Lyme disease is “AV block”, the study found. Also called heart block, it can be fluctuating and intermittent or can lead to sudden cardiac death. 

The latter describes the fate of an otherwise healthy 37-year-old Manitoba father named Samuel. 

His family is sharing his story to raise awareness of the uncommon but potentially fatal outcome of Lyme disease. 

In a CMAJ video posted to YouTube, Samuel’s sisters, parents, and wife recall that Samuel hadn’t been feeling well prior to his death in July 2018. 

That month, the family had gathered at his parents’ farm in a remote area of Manitoba and went for a swim in a nearby river. 

One of Samuel’s four siblings, Leah, noticed a rash on his back and chest. He was quiet and withdrawn—unusual for her adventurous, fun-loving big brother who was always the life of the party. 

Samuel, whose son was just four months old when he died, went on to experience a high fever and sore joints. 

However, he because he didn’t notice or remember being bitten by a tick, he discounted suggestions that he could be experiencing symptoms of Lyme disease. He figured he had the flu and that he’d gotten the rash from picking raspberries. 

Three weeks after those initial symptoms, Samuel developed chest pain, heart palpitations, and shortness of breath. He drove himself to a Winnipeg hospital. 

He died within 12 hours of being admitted. 

“I didn’t really know anything was that wrong until we got the phone call in the middle of the night that his heart had stopped,” Leah says. 

Dr. Terence Wuerz, an infectious disease specialist at St. Boniface Hospital and a study coauthor, says he could tell right away Samuel was “very sick and in trouble.”

With Samuel’s history of rash and flu-like symptoms, along with time spent in a remote area where ticks are known to live, Wuerz suspected Lyme carditis.

Doctors started antibiotic treatment to fight the bacteria that causes Lyme disease. However, Samuel became sweaty and his heart rate and blood pressure plummeted low.  An ECG showed a complete heart block. 

The resuscitation team was called, but CPR and defibrillation could not restart his heart. 

Samuel perished before tests confirmed the diagnosis of Lyme disease.

“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 said in the video.

According to the CMAJ study, only 10 other cases of sudden cardiac death attributed to Lyme carditis have been reported in North America. Victims have ranged in age from 17 to 66.

Doctors documented a case of a woman who developed an atypical large red rash on her neck and shoulder. After becoming dizzy and developing an irregular heart rhythm, and having been bitten by a tick, she sought medical attention. She tested positive for Lyme carditis and recovered with antibiotic treatment. 

In other cases, patients have such severe cardiac complications that they require pacemakers or even heart transplants. 

Early detection and treatment of Lyme carditis is crucial for recovery. Tragically, Samuel waited too long to get medical care.

“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 article coauthor, said in the video. 

She said sharing Samuel’s story is an opportunity to educate clinicians about the possibility of Lyme carditis and the need to start antibiotics even before testing confirms Lyme disease.

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

While ticks are often thought of as being in areas of dense bush, they can be found many other, more common places. 

In many parts of the country, we’re seeing an increase in the number of black-legged (or deer) ticks not only in wooded areas but also in local parks and backyards, according to microbiologist Jason Tetro.

“The reason they are showing up in these areas is due to the increased presence of wildlife including migratory birds and rodents,” Tetro tells Yahoo Canada. “Based on research, we know that bird feeders, wood piles, ornamental gardens including barberry bushes, and unkempt lawns with leaf waste have been known to harbor ticks.”

Black-legged ticks can range in size from a poppy seed to a sesame seed and may be very difficult to see on dark clothing. Wearing lighter colours can help to spot them. 

“As for the skin, make sure to check the entire body but pay closer attention to hidden areas such as under the arms, the ears, belly button, back of the knee, and the hairline,” Tetro says. 

There are two ways to prevent ticks from getting onto your skin:  wearing long clothing that is tucked in to prevent any exposed skin, and using insect repellent that disguises you from the tick, such as products with a DEET concentration between 20 and 30 percent.

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