Canadians are travelling to Mexico for Lyme disease treatments. That worries health experts

Medical tourism has drawn foreigners to Mexico for decades, but the attraction is no longer limited to breast augmentations, porcelain veneers and rhinoplasties.

Clinics are now specializing in alternative treatments for chronic and life-altering diseases such as cancer, diabetes and, increasingly, Lyme disease.

In the case of Lyme, the interventions include things such as hyperthermia (which induces a fever meant to kill bacteria associated with Lyme), stem cell therapy, extended antibiotic use and plasmapheresis treatment (plasma exchange).

Marnie Freeman from Vancouver says she was diagnosed with Lyme disease in 2019 through a German lab after her Canadian tests came back negative. Her symptoms, which included facial numbness and chronic pain, prompted her to seek treatment in Mexico.

The 56-year-old travelled to Sanoviv Medical Institute in Rosarito, south of Tijuana, where she spent two weeks and paid $29,000 Cdn for treatment (hyperthermia and intravenous antibiotics) as well as food and board.

Her symptoms improved, and the clinic's personnel urged her to continue treatments for another six months, but she declined.

"One of the reasons I chose that facility was their overall, full-body approach to healing," Freeman said. "It represented something in health care that we don't see in our country, as far as looking after the full mind, body, spirit and that resonated with me."

Lyme disease is caused by the bacterium Borrelia burgdorferi, which is transmitted by infected nymphs and adult females of a small number of species of Ixodes ticks. The ticks mainly responsible for Lyme disease are blacklegged ticks.

The Canadian protocol for Lyme disease includes a preliminary test that determines whether the individual is infected, followed by a round of antibiotics for up to three weeks.

Health Canada does not track the number of people who choose to seek medical treatment out of the country, but CBC spoke with two Lyme disease clinics south of the border that say the majority of their patients are Canadians.

In a statement, Omar Morales, founder of Lyme Mexico, a clinic in Puerto Vallarta that specifically treats Lyme disease, says most of his patients are from B.C, Ontario and Alberta.

"Sadly, there is a significant gap in addressing tick-related disorders worldwide, particularly in Canada," Morales said in his statement. "Many doctors there, as in Australia, fail to recognize or pay attention to this disease."

Infectious diseases doctor Lynora Saxinger says in Canada, tick epidemiology is tracked by surveillance for infected ticks and human cases using appropriate, validated tests.

Saxinger says that if alternative medical practitioners are diagnosing Lyme "with vague symptoms, no clear exposure risk, using non-validated tests," then it's not surprising that they would say Canada is missing cases.

"But I think they are labelling a lot of non-Lyme conditions as Lyme," she said.

Disease on the rise

Saxinger says the Canadian protocol for treating Lyme disease is scientifically supported, and although some individuals may suffer from ongoing symptoms following antibiotics, the alternative treatments offered abroad may not address their symptoms and could even have adverse reactions.

"This makes me feel very sad, because I think about how terrible the situation must be that these peoples' whole lives are getting wrapped up in this process," said Saxinger, who is also an associate professor in the faculty of medicine and dentistry at the University of Alberta.

Sanoviv Medical Institute did not respond to CBC's request for comment.

There were 17,080 reported cases of Lyme disease across Canada between 2009 and 2022. While those numbers are likely an underestimate, they have grown dramatically in recent years, according to data from the Public Health Agency of Canada (PHAC).

In 2009, there were just 144 reported Lyme cases in Canada. By 2021, the number shot up to 3,147 for the year.

Nick Ogden, a senior research scientist with PHAC and director of the Public Health Risk Sciences Division, which conducts Lyme disease surveillance, said the single most important factor for the growth in tick populations across Canada is warmer temperatures due to climate change.

The U.S. Centers for Disease Control and Prevention list the most common symptoms as fever, headache, fatigue and a characteristic skin rash called erythema migrans. If left untreated, the infection can spread to joints, the heart and the nervous system.

Antibiotics are the universal doctor-recommended treatment for Lyme disease, yet while they kill the bacteria, some symptoms can become chronic, leading people to seek alternative treatments.

A study published in the U.S. Center for Disease Control and Prevention's Emerging Infectious Diseases journal in June found an immune system biomarker in the blood was higher in people with chronic Lyme disease symptoms, even after they were treated with antibiotics. This means long-term symptoms in patients with high levels of the biomarker (called interferon-alpha) may not be due to an ongoing infection, but rather to the body's immune response causing chronic inflammation even after the infection is gone.

Concern about longer antibiotic courses

Clinics south of the border, such as Sanoviv Medical Institute, Lyme Mexico and Renue Medical Clinic also located in Puerto Vallarta offer what they call additional ways of treating the disease.

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But Saxinger says these are often costly and ineffective.

"I've never seen any good evidence that there would be any role for any of these treatments in treating Lyme disease," Saxinger said. "They are getting pretty far away from what we're recommending."

She says one of the most troubling interventions being offered is the extended use of antibiotics, in which patients are being prescribed the Health Canada-approved treatment of doxycycline, cefuroxime axetil and amoxicillin for use beyond the three-week suggested maximum.

A new vaccine for Lyme disease is currently in development in early clinical trials in the U.S. A previous vaccine, called LYMERix, was discontinued in 2002 due to insufficient consumer demand, waning protection over time and reports of side effects, such as arthritis, although the FDAlater found there was no evidence of a harm to people who received the vaccine.

'She was constantly in pain'

Julie Bentz's 14-year-old daughter, Jordan, was diagnosed with Lyme disease through standard Canadian testing when she was 12. The family lives in Calgary but went to Lyme Mexico to seek further relief when prolonged symptoms began affecting Jordan's daily life.

Bentz says her daughter was experiencing seizures, memory loss, palsy, paralysis and became wheelchair-bound.

"She was constantly in pain; she could not walk. I thought she was going to die," Bentz told CBC.

Seven weeks of treatment at Lyme Mexico in 2022 cost the family $50,000. Bentz says over the years, the family has spent upward of $200,000 on alternative treatments abroad.

"This disease has bankrupted us. But she is worth every penny," Bentz said.

Over the course of those seven weeks, Jordan underwent various interventions, including hyperthermia. Bentz says the teen still experiences symptoms but says her seizures have stopped and that she is walking with the help of mobility aids.

Saxinger says she understands people's frustrations with prolonged symptoms but says seeking treatment beyond Health Canada's protocol or doing so without a positive Lyme test may induce adverse effects and prevent medical providers from addressing the underlying health issue.

"Some of [the treatments] can actually be fairly invasive, a lot of the products are given intravenously and there are many case reports of harms related to such things," she said. "Of course, some people will get treatments, and they will feel better, but there can be many different reasons that people feel better after receiving treatments."

'A bit of a failure on the medical system side'

When asked about Lyme disease protocol and treatments, some provincial health authorities, including B.C. and Alberta, referred CBC to Health Canada guidelines.

In a statement to CBC, a spokesperson for Quebec's Ministry of Health and Social Services said it is concerned about Lyme disease medical tourism and that its scientists do not evaluate diagnoses and treatments offered in other countries.

"Interpretation of the results of laboratory analysis carried out abroad, particularly if they were carried out in private, for-profit laboratories not using standardized analysis methods, must be done with caution," the statement said.

The ministry said it is also working to develop treatments within the framework of long COVID and Lyme disease clinics from a research perspective.

Saxinger said she hopes people with prolonged Lyme symptoms can find relief without getting into a cycle of "complex, expensive and potentially dangerous regimens."

"I actually feel like at some level, there's also a bit of a failure on the medical system side, because frequently, where people have non-specific symptoms and the initial panels of tests are negative, people end up feeling dismissed."