Fredericton Lyme disease support group wants better testing

​Joy Pitre says New Brunswick clinicians failed to diagnose Lyme disease when she was struggling to determine what the cause of her rapidly deteriorating health was after a tick bite in 2003.

She says she has since spent more than 10 years and $10,000 trying to get treatment for the disease, and is calling for federal and provincial health departments to improve their testing practices.

"It was never offered, it was never even considered that it could be Lyme, or discussed with us at the very least," said Pitre.

The province uses two-tiered testing, following current Canadian and international guidelines. Current guidelines however, are being called insufficient in a federal bill assented to in December 2014. The bill is causing the federal government to work on a new federal framework on the identification and treatment of the disease.

Pitre says she received a diagnosis for Lyme disease from a lab in California. She says she experiences crippling joint pain, shakes and numbness, temporary paralysis in her face, slurred speech, and has difficulty communicating. She didn't seek diagnosis in the US until after multiple MRIs, CT scans and blood screenings in New Brunswick.

"They run all of these tests, they come up negative and say that's it, there's nothing wrong with you," said Pitre.

Pitre and her husband, Pat, sought treatment for Joy in New York, but after nine months, the bills amounted to over $10,000, a rate they could no longer afford. Joy says her condition has since deteriorated.

"On bad days I have a hard time even getting out of bed. There are times I can't walk, I have to crawl."

Louise Billings, co-founder of the Lyme Support Group, says the number of confirmed cases in New Brunswick is far too low compared to the actual number. The province says there were ten confirmed cases of Lyme over 2013-14. Billings says the numbers are only that low because current testing is producing false negatives.

"Everyone here in this group has had Lyme tests done and they come back negative. So they're told, 'Well, you don't have Lyme,'" said Billings.

"People are still having to get tested and treated in the U.S. The public health agencies of Canada and New Brunswick have to change the guidelines."

The province is weary of tests done by private clinics. Department of Health spokesman Bruce MacFarlane said some laboratories might not be using properly ​validated tests or criteria for interpreting test results.

"There is a lot of debate about testing. There are people with chronic illness that do not have positive two-tiered testing results, but do have positive tests from private laboratories," he said. 

Health Canada told CBC News it is working towards a new federal framework on diagnosis and treatment of Lyme disease.