‘Every time, the test came back negative’: Why Canadian Lyme disease cases continue to be missed

WATCH: Lyme disease is an infection Canadians will likely start hearing about more and more thanks to climate change. Warmer temperatures allow ticks — that carry the disease — to survive, but the medical system may not be ready to cope.

For six years, Barry Philpott has suffered from unexplained symptoms.

“I started getting a really stiff neck and flu-like symptoms, visual disturbances, ringing in the ears,” Philpott said from a relative’s house in Armstrong, B.C. “The following week, the pain became so intense I actually paid cash for an MRI in my neck to learn nothing was wrong. ”

Since 2013, Philpott says he’s spent more than 50 days in hospital and has been tested for everything cancer to HIV. With no other explanation, the Calgary man began to suspect he was suffering from Lyme disease, an infection caused by bacteria spread by ticks.

He was tested for the illness four times in Canada, but each time the test came back negative.

In the last decade, cases of Lyme disease have risen dramatically in Canada, from 144 cases in 2005 to 2,025 cases in 2017.

Dr. Kieran Moore, a researcher with the Canadian Lyme Disease Research Network, believes the numbers are actually much higher.

“For those 2,025 cases, the vast majority are going to be lab-positive cases, and I would think the number of clinical cases is much higher than that,” Moore said.

Moore points to problems with current diagnostic testing for Lyme disease in Canada. His team is hoping to help find a better test as it begins a four-year, $4-million research project funded by the Canadian Institutes of Health Research.

Researchers have begun recruiting patients with acute Lyme disease to provide biological samples to help in the development of new diagnostic tools.

“We know that the current diagnostic tests for Lyme disease are insensitive very early on [in] the disease,” said Moore.

“Our ability to create a bio bank [would] enable specialists who are experts in diagnosis of Lyme disease through blood testing or urine testing [to] have the samples by which we could come up with a better test.”

Cases of Lyme disease often misdiagnosed

In the acute or early stages of the infection, symptoms of Lyme disease are flu-like and include fever, chills, muscle and joint aches. There may also be an expanding red rash that is usually more than five centimetres in size.

However, if a Lyme disease infection is left untreated, the bacteria can spread to other parts of the body and cause nerve tissue damage, neurological problems or issues with a patient’s heart.

“Those three major end organs that the bacteria targets can cause various signs and symptoms that physicians could misdiagnose or provide an alternative diagnosis if they don’t think Lyme,” said Moore.

Moore says these mistaken diagnoses can include meningitis, arthritis, stroke, heart disease, Bell’s palsy and multiple sclerosis.

“We have to educate physicians and health-care workers regarding Lyme disease because it’s a very complex disease and it can present with multiple unusual symptoms that physicians traditionally aren’t used to,” he explained.

Back in B.C., Philpott believes strongly that he is suffering from Lyme disease.

After testing negative for the disease in Canada, he tested positive for the disease in clinics in Germany and the United States. Still, he has been unable to find a doctor in Canada willing to treat him for the condition, which typically responds to a prolonged course of antibiotics.

“I’m not sure where I’m going to turn to now,” he said.