U.S. lab says this 7-year-old has Lyme disease — Canadian MDs won't even test him

At only 18-months-old, Trent Nimeth's eyes were rolling to the back of his head. Now, at 7-years-old, he complains because he feels his brain is on fire.

He has been tested for Lyme disease in a private lab in the United States. His results came back positive. He has not been tested in Canada.

Trent and his family are caught in the uncertain place Lyme disease now holds in Canadian medicine. Front-line physicians are responsible for recognizing patients that need to be tested, but experts say Lyme, as an emerging disease, is still unfamiliar territory for many of them.

At the same time, public health agencies are issuing more warnings about Lyme disease and the spread of the ticks that carry it. So more and more people are concerned about the disease and some see it as the answer to unexplained symptoms.

But then they find they have to look elsewhere to get tested.

From the very beginning Trent's parents, Danielle and Matt from St. Catharines, made the regular family doctor appointment. "We were told it was quite normal for toddlers and that he'd grow out of it," says Danielle.

Over the years Trent developed a severe intolerance to one food after another. Then to his own environment.

"It was like he was becoming the bubble child," says Danielle.

Over the last two years things reached a critically low point. Instead of his eyes flicking back, Trent was throwing his head back, and that later turned into a full body contraction.

"I can only describe it as a seizure," says Danielle. "His whole body would go into a sort of tightness, his arms would come up to his chest, his head would get flung back and his whole body would shake for like a minute."

Trent was taken to pediatricians, family physicians, specialists and emergency rooms. "In the last two years I have taken him to more than 13 doctors," Danielle says.

The Nimeth's were told different things about their son's condition. "It was allergies, Tourette's syndrome, ADD, OCD," says Matt.

The couple refused to accept it. They were convinced there was something else. After months of on-line research and connecting with on-line forums, they came to believe he might have Lyme disease.

Danielle requested a Lyme test from more than one of those doctors. "Nobody went through with doing it," she says.

Samir Patel, microbiologist with Public Health Ontario explains why. "This would be a decision by a clinician who would look at the signs and symptoms, [and] whether or not there's any exposure history to these ticks."

For Trent that meant never getting the test done, since there was no record of exposure. "We've never taken a tick off of him. He's never had that classic bullseye rash that they always talk about", says Danielle.

Tara Moriarty, an infectious disease expert at the University of Toronto says their experience is not a surprise to her, nor is the medical response they have encountered.

"That's not an uncommon story with Lyme disease," she told CBC.

"It is a common explanation or solution that's often suggested or sought as an explanation for medically unexplained symptoms that can't be explained by other diagnostic, testing or specialists."

"We're in Canada where [Lyme] disease is emerging," she says. "Where, also, there is a reasonable possibility many physicians may not have experience seeing it or recognizing it, so there's some uncertainty about diagnosis."

Looking elsewhere

Danielle says the hunt for answers has been all consuming.

"For the last two years my husband and I have put Trent to bed at around 8 p.m. Then we research feverishly until two or three in the morning," Danielle says.

Through her research Danielle found an online forum of parents whose children have neurological and central nervous system issues.

She joined and submitted a synopsis of her son's medical history.

"The community responded overwhelmingly," she says. "They said it seemed like Trent had late stage Lyme disease."

Through the same forum the Nimeths were referred to a Naturopathic doctor with prescribing rights in British Columbia. She recommended that the family test Trent for Lyme disease in a private lab in California.

According to that test Trent has Lyme disease.

The problem is that the way the U.S. lab does the test is not accepted in Canada.

"In Ontario, and pretty much across the country as well, we use the serological testing which means that we're looking for antibodies that a patient would produce if he or she was infected with Lyme disease," says Patel.

This happens as a two-tier test. Patel explains that the first test looks for total antibodies produced by a person in response to an infection. The second test looks for a specific type of antibodies associated with Lyme disease.

According to Patel, what the private lab does is administer the second test without using the first test as a screen.

A complex diagnosis

Patel recognizes that diagnosing Lyme disease is not just about the tests. "It's based on clinical signs and symptoms, epidemiological risk factors and laboratory testing," he says. "Laboratory testing is not the be all and end all."

That's something that echoes among advocacy groups as well.

"[Understanding] Lyme disease is anchored in the patient's voice and the patient narrative because if we can't listen to what patients are going through then we can't properly understand and properly figure out solutions," says Sue Faber, co-founder of LymeHope and registered nurse.

She believes the gaps start at the base level. "There needs to be education of medical professionals because they can't act on what they don't know about," she says.

"I think public health has a leadership role to play in terms of facilitating that type of education and discussion," says Faber.

Patel agrees. "We can always do better with education [of physicians] and in bringing this to the forefront with physicians," he says.

The Nimeths believe in the test results they got.

"I feel very blessed to have a diagnosis, as horrible as Lyme disease is," says Danielle.

"This April was a breaking point for me. I felt like I couldn't go on anymore. I didn't know how to save my child," says Danielle. "We are middle class earners, you know. To pay $2,000 just to rule something out was difficult for us."

Trent will be seeing an infectious disease expert at McMaster University in November. They have hopes that this time the Lyme test will be done.

For now, Trent and his parents stay positive. The 7-year-old told his mom: "When I'm all healed mommy we're going to help the other kids."