The Tick and the Tilt: Bengtsson’s battle back to health

Photo: KDP Studio

by Nick Hart | AHL On The Beat

Lukas Bengtsson is a lot of things. He’s a goofball, the first one to get behind a camera when his teammate is in front of it to try and make him crack. He’s a video game enthusiast, often passing on League of Legends and welcoming all challengers at Call of Duty.

He’s also one heck of a hockey player.

Last season, Bengtsson quickly acclimated himself to the smaller ice surface in North America and started budding into the defense prospect the Penguins’ European scouts knew he could become. Playing on a pairing with Wilkes-Barre/Scranton’s then-top defenseman, David Warsofsky, the two were an automatic breakout from their own end and a nightmare for opponents.

As 16 games swept by, Bengtsson looked like a stud. The coaches loved the way he was playing. His teammates loved watching him work. There was just one problem.

“I didn’t actually know what I was doing out there,” he said. “I felt lost.”

Bengtsson’s final game with the Penguins last season was Jan. 6, 2017, in which he posted a career-best plus-four rating in a 5-1 trouncing of the Hershey Bears. But he didn’t feel like a player who had a career night. He was trapped in a haze brought on by a feeling of exhaustion and helplessness.

“It was pretty scary,” Bengtsson said. “I was so fatigued and you have a feeling that you had no idea how you should play the puck. Too many passes that you could do with closed eyes, you can’t even hit, and it’s just miserable.”

This miserable state was the result of a condition that had been puzzling the Penguins training staff and outside medical experts for months. After that game against Hershey, the Penguins shut Bengtsson down for the season.

At the time, it seemed like he might have a persistent case of Lyme disease.

What Bengtsson eventually learned was that the disease he was battling wasn’t Lyme disease at all. He was about to become a poster boy for a condition he had never heard of before: Postural Orthostatic Tachycardia Syndrome, also known as POTS.

The Tick

Bengtsson played a bevy of different sports while growing up in Stockholm, Sweden, and like most hockey players, he usually spends some time in his offseason golfing.

While golfing with friends in Sweden during the summer of 2016, Bengtsson drove one into the rough not far from the fairway and went on a hunt for his ball. After he recovered it and finished the hole, he looked down and saw a new, uninvited member had joined their group.

It was a tick.

Though he safely removed the bug when he got home, that tick set off a chain of events that he would have a hard time brushing off for close to a year.

It wasn’t long after this that Bengtsson started feeling tired, a constant, ever-present malaise. His parents simply wrote it off as a young adult being lazy. His trainer thought he might be working too hard. After a few days of non-stop fatigue, Bengtsson sought the advice of a doctor.

Given his run in with the tick on the golf course, the diagnosis was swift.

“They said I was positive for Lyme disease after one test,” Bengtsson said. “I took some antibiotics and thought, ‘Move on,’ so I started practicing right away. Then I went over here to the States in late August.”

Things seemed to be looking up, but that didn’t last. When he came to Pittsburgh’s training camp, he immediately hit a wall.

“I did a bike test in Pittsburgh… and the same [symptoms] happened, but worse,” he said. “I was out cold. After the test I remember my legs were in so much pain and it took like 40 minutes to get back to normal.”

At this point, Bengtsson alerted the team doctors, and they started working on a solution. More tests came back positive for Lyme disease again. He was prescribed 21 days of antibiotic treatment and sentenced to limited physical activity until things cleared up.

Following a minor setback, Bengtsson started practice with Wilkes-Barre/Scranton in the late fall and was playing games for the AHL club by winter.

Which brings us to Jan. 9. To the casual observer, his play hadn’t regressed at all. But to Bengtsson, the overwhelming fatigue was near-debilitating.

“It was almost like a concussion,” he said. “You don’t really know what’s happening. You are two steps behind a situation instead of ahead of the situation. It was scary.”

Just like that, Bengtsson was back to square one. At this point, Penguins brass decided to bring in the heavy artillery and shipped Bengtsson up to Boston to see a Lyme specialist. It was there that the doctor theorized that what was ailing the defenseman wasn’t Lyme disease at all. In fact, he probably never had Lyme in the first place.

“I’m sitting there thinking, ‘What now?’” Bengtsson said. 

The Tilt

Bengtsson was sent to the Mayo Clinic in Minnesota for researchers to determine his next course of action.

Photo: KDP Studio

Eventually, after nearly two weeks of examinations, they came to something known as “the tilt test”. For 20 minutes, Bengtsson laid flat on a hospital table and doctors took his blood pressure and pulse multiple times to get a base reading. Then, the table tilted roughly 70 degrees upwards.

After just three and a half minutes in the tilted position, Bengtsson’s blood pressure significantly decreased. His pulse skyrocketed from 63 to 140 heartbeats per minute.

“If they kept me one more minute, I would have just fainted,” Bengtsson said. “There they started to know that I probably have POTS disease.”

POTS is a condition that is defined by The POTS & Dysautonomia Treatment Center as a heart rate increase of 30 or more beats per minute from a lying down to standing position within 10 minutes or less caused by a dysfunction of the autonomic nervous system.

Essentially, if Bengtsson is lying down for too long and stands up, blood returns more slowly to his heart and the organ goes into overdrive trying to pump it back. This can be particularly exacerbated during or after extraneous physical exertion – like a bike test during an NHL training camp, for example.

The cause of POTS is hard to nail down, but scientists believe it can be brought on by some sort of unrelated trauma or viral illness. Bengtsson had a bout with mononucleosis when he was 17 and caught shingles the year prior. While there is no way to be certain, one of those two instances could have triggered the emergence of POTS symptoms.

But if it was POTS all along, why did multiple tests for Lyme disease come back as positive? When Bengtsson was bitten by the tick in Sweden, it likely carried Lyme that his body fought off naturally. When his immune system generated the necessary defense to defeat it, tests detected the mere presence of anti-Lyme antibodies as a sign that the disease was still in his system even though it’s long gone.

POTS is not degenerative, but there is no cure for it, either. The 23-year-old blueliner has had to learn how to adjust his lifestyle so that he can not only live comfortably, but continue to make a career as a high-functioning professional athlete.

Most of the changes are simple. He wears compression socks all day to help maintain a consistent blood flow and compression pants underneath his gear when he plays hockey. He’s had to cut out caffeine; something he says hasn’t been too difficult for him. He will often have a bottle of water within reach, as he’s constantly monitoring his hydration. He now sleeps at a slight reverse incline, so that his feet are positioned above his head. Lastly, he has to stay active. Pretty much all the time.

“I’ve got to move,” he said. “Because if I’m not moving, the blood is not moving and the blood pressure will go down.

“I have to be my own doctor, because the doctors can’t tell how I’m feeling. I know how I’m feeling.”

The Trail Ahead 

Bengtsson’s made the necessary adjustments to his lifestyle and is back on the ice with Wilkes-Barre/Scranton, playing like he never missed a beat. However, his life with POTS has only just begun. Bengtsson is confident he’ll be able to safely monitor his symptoms and that it won’t negatively impact his game play or his overall health away from the rink. Plus, if he’s going to live with this condition, he wants to raise as much awareness for it as possible.

Bengtsson wants to be  an example and support to those who struggle with POTS. He knows firsthand the confused looks people shoot back when he mentions the condition. He knows the confusion he felt before navigating his way to an eventual diagnosis.

“When the news came out in Sweden, I think I got like 20 calls from people that their sons or daughters have it,” he said. “They said thank you and we’re not alone in this now.”

Dysautonomia International says there are anywhere from 500,000 to 1,000,000 people with POTS in the United States alone. Bengtsson believes there are probably even more people worldwide living with the condition but write it off as simply being tired or sleeping funny.

“I want to help as many people I can,” he said. “I’m lucky I don’t have a real bad POTS disease. There are people who have it worse, but I didn’t know what was wrong with my body for so long, it was a relief to get an answer and start to attack the symptoms.

“I wasn’t sure if I was ever going to play hockey again. Now I appreciate the game so much more and have fun every day.”

Bengtsson is a lot of things. He’s a young man with a colorful sense of humor, he’s an exceptional athlete, and now he’s living with POTS.

If there’s someone out there living with POTS, too, he’s someone who wants you to know that you’re not alone.