Celebrity Claims of “Chronic Lyme” Fuel Controversial Medical Industry

American supermodel Bella Hadid periodically shares glimpses of her health struggles on Instagram, posting images of herself receiving various medical treatments. In a September 2025 slideshow, she’s seen at a boutique medical facility, while an August 2023 post shows her connected to an intravenous catheter.

In the latter post, which garnered approximately three million likes and 19,000 comments, Hadid claimed to have suffered from Lyme disease for more than 100 days and referenced “almost 15 years of invisible suffering.” Many followers expressed support, with some asking about treatments for chronic Lyme.

While Lyme disease is a medically recognized infection that can cause pain, fatigue and muscle aches, many celebrities who claim to have Lyme—including Hadid, Justin Timberlake and Justin Bieber—appear to be describing “chronic Lyme disease,” a condition not recognized by conventional medicine.

Dr. Paul Auwaerter, a professor at Johns Hopkins University School of Medicine, told CBC News that patients often turn to chronic Lyme diagnoses when seeking answers for unexplained symptoms. “They are looking for answers to something that many times they get short shrift from their regular physicians or from consultants.”

However, medical experts warn that the world of private testing and treatment for chronic Lyme is largely unregulated and potentially dangerous.

Understanding Lyme Disease

Legitimate Lyme disease is caused by the bacterium Borrelia burgdorferi, transmitted through infected blacklegged tick bites. Symptoms include rash, fever, fatigue and joint pain.

The disease is increasing globally, including in Canada, where 5,809 cases were reported in 2024, according to the Public Health Agency of Canada. This upward trend, ongoing since 2009, is attributed partly to climate change and increased awareness among healthcare providers and the public.

Most people who contract Lyme disease are successfully treated with early antibiotic intervention. If left untreated, the infection can spread to joints, heart and the nervous system.

Some patients experience ongoing symptoms after treatment for confirmed Lyme disease, including fatigue, cognitive difficulties, and muscle and joint pain—a condition doctors call post-treatment Lyme disease syndrome (PTLDS). The causes remain unclear, and treatment approaches are still being researched.

“As you might detect from the name, ‘syndrome’ means we don’t quite understand why it occurs in people,” Auwaerter explained. “That’s still a very significant area of research, much like long COVID.”

It’s important to distinguish between actual Lyme disease, PTLDS, and what some call “chronic Lyme.” The latter is based on the unproven theory that Lyme bacteria persist in the body despite antibiotic treatment.

“Many of us that study Lyme disease don’t think after initial antibiotic treatment that there is still bacteria harboured there that would respond to antibiotics,” said Auwaerter.

Andrea Love, an immunologist and executive director of the American Lyme Disease Foundation, warns that promoting chronic Lyme can be harmful: “There is a very lucrative wellness industry that centres around Lyme disease and this idea of persistent infection…. They get really rich off of exploiting vulnerable people.”

Questionable Testing and Treatments

In Canada, legitimate Lyme testing involves a two-step process screening for antibodies plus confirmatory testing. While Health Canada-approved tests are important for diagnosis, they aren’t perfect. They cannot detect the infection during an initial period before antibodies develop, and they may show positive results years after infection, even when it’s no longer active.

Meanwhile, alternative practitioners offer private tests through out-of-country laboratories, claiming superior accuracy. Some clinics offer urine-based tests, which Love calls “wholly inappropriate” for detecting the bacteria.

Private clinics also promote unproven treatments ranging from hyperthermia therapy to stem cell therapy and plasma exchanges. These interventions haven’t been proven effective for Lyme disease and may carry unnecessary risks. Similarly, long-term antibiotic use—often recommended for “chronic Lyme”—can be dangerous.

The chronic Lyme diagnosis may also prevent patients from receiving proper treatment for conditions they actually have. A 2021 study co-authored by Auwaerter examined 1,261 people referred for suspected Lyme disease and found 84 percent had no evidence of the actual infection. Most had other conditions causing their symptoms, including anxiety, depression, fibromyalgia, and in rare cases, multiple sclerosis or cancer.

A Dangerous Path

Feile O’Connell, a 30-year-old from Tofino, B.C., shared her harrowing experience seeking treatment for what she believed was chronic Lyme disease. After years of struggling with severe fatigue and pain without satisfactory answers from the medical system, she turned to alternative practitioners. Despite testing negative for Lyme through conventional methods, private testing gave her a positive result.

“I felt validated for the first time,” O’Connell said.

After trying alternative treatments in Canada, she spent over $40,000 at Lyme Mexico, a clinic run by Omar Morales. “He’s selling hope,” she said. “All we want is to get better and he has the path.”

At the clinic, O’Connell received intravenous immunoglobulin (IVIg) treatment, which made her severely ill. She ended up in intensive care with life-threatening sepsis. Later investigation revealed the treatment product may have been falsified or manipulated, according to the pharmaceutical company CSL Behring.

“If I could take it all back, I would, 100 percent. I would never recommend for anybody to go there,” O’Connell said.

Lyme Mexico declined to comment on specific cases, stating only that it is a “licensed medical facility” with “qualified physicians.” The clinic wouldn’t provide proof of these qualifications when requested.

Systemic Issues

Dr. Lynora Saxinger, an infectious diseases specialist at the University of Alberta, points to systemic healthcare issues driving patients toward unproven treatments: “The thinner the medical system gets stretched, the less likely someone is going to be able to get significant time from the routine medical system.”

Auwaerter adds that chronic illnesses need more research funding: “This has been quite an underfunded area for many years.”

O’Connell, who continues to have symptoms and is still pursuing treatment with a naturopath, believes the healthcare system needs to show more empathy toward those with unexplained chronic conditions.

“People are really cast aside when they have these mysterious chronic illnesses,” she said, “and they’re just left to fend for themselves.”