Lyme disease is littered with misinformation. Celebrities are part of the problem, experts say

American supermodel Bella Hadid takes to Instagram every few years to share a behind-the-scenes look at living with chronic illness. 

In one slideshow from September 2025, she’s seen getting a variety of treatments at a boutique medical facility. In another from August 2023, Hadid shows herself with an intravenous catheter connected to her arm.

In that post’s caption, she claims to have suffered from Lyme disease for more than 100 days — as well as “almost 15 years of invisible suffering.”

That post has garnered about three million likes and 19,000 comments. Many users expressed support. One commented, “Who of you also suffers from chronic Lyme? What treatments do you do?”

Lyme disease is a medically recognized infection that can cause pain, fatigue and muscle aches. But many celebrities — including Hadid, American singer Justin Timberlake and Canadian singer Justin Bieber — who claim they have Lyme appear, on a closer look, to be describing chronic Lyme disease, a condition that isn’t recognized by conventional medicine. 

It's a controversial term used by some alternative practitioners to describe pain, fatigue and neurological symptoms they attribute to a persistent Lyme infection. Often, patients have never tested positive through a regulator-approved Lyme disease test.

Despite the shaky validity, identifying otherwise-unexplainable symptoms as chronic Lyme can seem like a path toward getting better, Dr. Paul Auwaerter, a professor at the Johns Hopkins University School of Medicine, told CBC News.

“They are looking for answers to something that many times they get short shrift from their regular physicians or from consultants.”

But experts warn that the world of private testing and treatment is largely unregulated — and can carry serious risk. 

Lyme disease is caused by Borrelia burgdorferi, a bacterium that’s transmitted through the bite of infected blacklegged ticks. Symptoms can include a rash, fever, fatigue and joint aches.

The disease is on the rise globally, including in Canada. There were 5,809 reported cases of Lyme disease in this country in 2024, according to the Public Health Agency of Canada. It has been trending upward nationally since 2009, according to Health Canada — in part due to climate change and a greater awareness among the public and doctors.

The majority of people who contract Lyme are cured with early antibiotic treatment, Auwaerter said. If left untreated, the disease can become serious and spread to the joints, heart and nervous system. 

Where some of the confusion may come from, experts say, is that some people continue to have debilitating symptoms after treatment for confirmed Lyme, including fatigue, cognitive difficulties and muscle and joint pain. Doctors call this post-treatment Lyme disease syndrome (PTLDS). They don’t have a clear explanation for what causes it, and as a result, treatment for it isn’t well charted, Auwaerter said.

“As you might detect from the name, ‘syndrome’ means we don’t quite understand why it occurs in people,” he said.