Author of new book on Lyme disease says there are lessons in COVID-19 pandemic

When science writer and journalist Brian Owens was approached by a publisher to write a book about Lyme disease, he was soon struck by how the history of the disease had some parallels to the COVID-19 pandemic.

The St. Stephen resident set out to write a resource guide to the tick-borne disease, but writing the book in the midst of the global outbreak brought a new perspective on his subject.

"There kept being reasons to mention COVID, beyond just marketing," Owens said in an interview from his home.

And while the COVID-19 pandemic isn't the focus of the book Lyme Disease in Canada, Owens said there are lessons from the past 18 months that could help people battling Lyme disease.

Lyme disease has been on the medical radar for about 30 years in this part of Canada.

You get it by being bitten by an infected tick. If the disease is treated early with antibiotics, it is generally easy to stop, avoiding long-term health effects.

But getting diagnosed early has often been the problem.

Owens said many people don't get the telltale bull's-eye rash in the days after being bitten.

So unless you actually find the tick on you and remove it and have it tested, it's hard to know you've even been infected.

And the symptoms are wide-ranging and varied, and different from patient to patient. You could have any number of them in the first 30 days: fever, chills, muscle aches, fatigue, headache and swollen glands.

If you're not diagnosed and treated early, the long-term effects can be devastating.

Patients have complained of arthritis, severe headaches, debilitating fatigue, heart palpitations, shortness of breath, brain and nervous system issues, and general pain.

Owens said they have also complained about ineffective diagnostic tests and doctors reluctant to take those long-term symptoms seriously. In the early days, public health officials even refused to admit the disease was present in New Brunswick. 

"It seems to happen a lot — it reminds me a lot of chronic fatigue syndrome," he said of the frustration he heard from people who struggled to get the medical profession onside.

Owens said that's changing, but the relationship between patients and doctors has been damaged.

"It's become a real entrenched position. Doctors are starting to come around, but long-haulers have had such a bad experience, they no longer trust the system."

That's a different experience from people who developed long-term symptoms after having COVID-19. Those people seem to have been taken seriously from the very beginning.

"There's hope that [COVID] long-haulers could lead to changes in attitude [among health-care professionals]," Owens said.

Vett Lloyd agrees. The biologist at Mount Allison University has been studying Lyme disease for years and became interested in the disease after contracting it herself.

She also struggled to get a diagnosis and went from specialist to specialist trying to convince doctors her symptoms were the result of Lyme disease.

"Very quickly, long COVID patients went from not recognized to recognized," Lloyd said.

"With COVID long-haulers, initially there was a thought if you were desperately ill and on a respirator, it would take time to get better."

But Lloyd said it didn't take long for medical science to accept the combination of symptoms long-haulers were experiencing was a continuation of the illness.

"There's been a different attitude towards COVID by the public health community. It was all hands on board. 'Let's solve it rather than dismiss it,'" she said.

"And very early on with long COVID, patients were seen as partners."

Lloyd thinks that's an important lesson for the health-care system when dealing with Lyme disease.

"The patient's lived experience provides the clues."

Owens said that's where medicine failed Lyme disease patients, an issue that led many to try alternative treatments, which often had little scientific evidence of effectiveness.

He said having a provider who took the time to listen and who took their concerns seriously mattered.

Both Owens and Lloyd think the effectiveness of the COVID vaccines could create more interest in a Lyme vaccine, too.

One was on the market, developed 20 years ago, but Owens said it was a victim of strong anti-vaccine reaction.

The company pulled it off the market because it never became profitable.

Clinical trials are now going on with a new vaccine developed in France.

Lloyd said that with tick populations continuing to grow, mostly because of climate change, the focus could shift to preventing Lyme disease through vaccination.

"As more people get sick, as we get to, say, a one per cent, or a two per cent, or a 10 per cent infection rate, that could happen. That's unfortunate that that's the argument. More people have to get sick, but that's the reality."

Brian Owens book, Lyme Disease in Canada, is available from Formac Publishing.