Photo by By NIAID – Engorged Adult Deer Tick, CC BY 2.0

‘She had nothing left to give’: Ontario parents take daughter to U.S. to treat Lyme disease

When Cheryl Wucher’s daughter, Thea, was diagnosed with Lyme disease, she was ecstatic.

Thea had suffered through debilitating illness for years, without much idea of what was wrong with her. The Wuchers finally found the answer they were looking for when her tests came back positive for Lyme disease.  

“We thought we know what we’re dealing with. Now we can fix her,” said Wucher.

But doctors at Sick Kids Hospital in Toronto refused to accept the diagnosis, which the family had gotten from a private lab in the United States. 

Canadian doctors had already diagnosed Thea with juvenile fibromyalgia, a disorder that results in widespread pain and fatigue, and they stood by their diagnosis. The lab in the U.S. used a test that has not been scientifically validated, according to experts. 

The family couldn’t believe doctors at the Canadian hospital would not treat Thea for Lyme disease and turned to a private American clinic.

The Wuchers, who were originally from Timmins, Ont. but have since moved to London, first realized something was wrong with Thea in January 2010, when the family returned from a vacation in Cuba.  

Two weeks after the trip, Thea, who was 10-years-old at the time, developed a bad whooping cough that persisted for 10 months. This was the first of a whole list of issues Thea endured as the years went on, which limited her ability to eat and walk. 

The Wuchers took Thea to special clinics in search of answers, but couldn’t find anyone that could figure out what was wrong with her.

“There were times when I actually wished they would find cancer in my daughter because I knew we would then get the support we needed. How sad is that?” she said. 

In 2013, Sick Kids doctors made their diagnosis of juvenile fibromyalgia. Wucher said that at first she was relieved that her daughter finally had a diagnosis, but as time went on, it didn’t make sense to her. 

Thea continued to get worse and by 2014, she was bed bound and could not go to school. Thea, who previously was an active kid, had trouble standing on her own for more than two minutes before collapsing to the floor. 

“Little by little, she had to give up parts of that normal life she had lived until she had nothing left to give,” Wucher said. 

In 2016, the family took her to Women’s College Hospital in Toronto, where a doctor requested different blood tests for Bartonella and murine typhus — infections that commonly accompany Lyme disease. When those tests came back positive, Wucher said the doctor suggested sending Thea’s blood samples to a lab in the U.S. for testing. 

By the time Thea received that diagnosis, Wucher said her condition was chronic. But as the doctors at Sick Kids Hospital would not recognize the new diagnosis, the Wuchers decided to take matters into their own hands.  

“We knew she was dying. We knew she wasn’t going to live, in our opinion, much longer,” Wucher said. 

A spokeswoman for the hospital did not provide comment before deadline. 

The Wuchers then spent around $240,000 on treating Thea in the United States, where she was given antibiotics for 22 weeks. 

Since treatment, Wucher said her daughter has had a full recovery, and went to university on her own this past year. She went from being completely reliant on her family for every need to living on her own and becoming active again — even running on her university’s cross country team. 

“If we had not taken her away for treatment, and gained the knowledge we had…. she would not be here today. I guarantee that,” said Wucher.

Two-tier testing 

Wucher said her daughter’s story is far from unique, as an increasing number of Canadians desperate to cure their sick loved ones have been travelling to the United States to seek diagnosis and treatment for Lyme disease. Thea was tested for Lyme disease in Canada, but the results came back negative.

Experts say that there are definitely Canadians suffering from Lyme disease that are slipping through the cracks, as there are limitations of the existing diagnostic test and a lot of physicians aren’t familiar with the emerging disease. 

In Canada, doctors use what is called a two-tiered test to diagnoses Lyme disease. This is the only validated way to diagnose the disease, and is the method accepted by western health authorities, including the Centre for Disease Control and Prevention in the United States. 

The limitation of the method is that it does not work well early on in infection. Tara Moriarty, an infectious disease expert at the University of Toronto, said Canadian physicians do not always understand these limitations and how they can affect diagnosis.

“It takes a while for our bodies to develop an immune response to whatever we’ve been exposed to,” she said. “And so, one of the problems in Canada is that if a physician doesn’t understand that the test may not work immediately, they may see someone…, send them for testing, the test comes back negative because it’s too early, and even though the person has a hallmark presentation like a bull’s eye rash, some physicians will not treat because the test is negative.”

Moriarty said this is a fairly common problem in Canada and will require physician education to ensure healthcare providers know how to diagnose the disease properly. After the initial month of infection, the testing protocol accurately identifies 98.5 per cent of people who are infected, Moriarty said. 

While the test is not perfect, experts say Canadians are turning to private clinics in the United States that are using unvalidated methods with high false-positive rates. Moriarty said a number of those private clinics market themselves very aggressively and can be fairly predatory.

 “It’s actually fairly common for people who get diagnosed with something else, particularly if it’s a really challenging condition for which there’s no good treatment,” said Moriarty.

“It’s not uncommon for people to try to explore other alternatives and Lyme disease is highly treatable.”

Moriarty is one of the leaders of a Lyme disease research network that has received funding to develop novel diagnostic tests that may be more sensitive to detecting the disease, especially early in infection. Moriarty said it will likely take years to develop. The network is planning to collect blood samples at centres it will set up across Canada to create a biobank. Researchers will then follow the people it took those samples from for at least two years.

“It can take a very long time for these tests to improve and they usually improve small step by small step,” she said.

She said there have been some promising academic research developments in the United States that could lead to tests that might be 15 to 20 per cent more sensitive in detecting the infection early. 

Underlying cause

The Wuchers still do not know when Thea contracted the disease. Wucher believes she may have passed it on to her daughter, as she also suffered from Lyme disease. 

A growing number of Canadians have had Lyme disease in recent years, which researchers have blamed on spreading populations of backlegged ticks. These ticks pick up the bacteria that causes Lyme disease — Borrelia burgdorferi — from infected animals before spreading it to humans. When bitten, people will often get a bull’s eye-shaped rash. Not everyone gets such a rash, and common symptoms can include fatigue, headache, fever and chills.

In 2009, there were just 144 reported cases in Canada, according to Statistics Canada. There were 992 cases in 2016 and 2,025 the following year. Statistics for 2018 are not available yet.

The number of reported Lyme disease cases in Canada. Courtesy Statistics Canada

Researchers say warming climate is a significant driver in the spread of these ticks. Andrew Peregrine, a parasitologist at the University of Guelph, said when he first started at the university 21 years ago, he asked his predecessor what they taught about tick-borne diseases. He was told not to bother teaching anything on the subject, because there were such minimal issues concerning ticks in Ontario at that time. 

Until the mid 1990s he said the only place in Canada where the blacklegged tick existed was was Long Point, Ont., on the north shore of Lake Erie. He said it has since spread across southern Ontario, in much of the Maritime provinces, southern Quebec, and manitoba. Preregrine added that they are starting to show up further west in Saskatchewan as well. 

“It’s extraordinary how quickly those changes have been happening,” he said.