THUNDER BAY -- The mother of a Thunder Bay youth says her son tested positive for Lyme disease in U.S. and German laboratories, but the family has faced challenges getting the support it needs from Ontario's health-care system.
Jennifer Bourgeois says her son Brody—who turns 14 on Friday, May 5—has suffered immensely since he woke up one morning in November, 2015 feeling unwell. At first she felt he had the flu, but "It's just gone from there. He's never been the same...It completely changed his life," she said.
According to Bourgeois, the once-active teen can't stand up straight, can't lift his head, and is in constant pain. He is unable to talk out loud because the volume of his own voice causes his head to hurt so badly. "So he either mouths words or uses hand gestures or whispers to communicate."
The youth wears noise-cancelling headsets to minimize the pain.
Bourgeois said local doctors decided Brody had Conversion Disorder, in which a person has nervous system symptoms that cannot be explained by medical evaluation.
No doctors here would diagnose Lyme diseases, but after doing extensive research she was convinced her son had been infected. She said subsequent tests in foreign labs that were arranged for by the family eventually showed the infection was present.
Bourgeois is frustrated that in Ontario the results of the U.S. and German lab tests were discounted. She said she was been told they can't be considered reliable because the labs are making a profit and "'What do they care if they're accurate? They could be false-positive results.'"
Through the first half of last year, her son had numerous doctors' appointments and she heard "many interesting comments from doctors, interesting stories about what they thought" he might be suffering from. "I was told these were not the symptoms of Lyme disease. I didn't recall ever seeing a tick and I never saw a bullseye rash (one symptom of the disease), so in the beginning, I believed that," she said.
But in her research she learned that only 50% of adults with Lyme disease will develop a rash, and children rarely do.
"It's important for people to know that there are no set symptoms of Lyme disease...everybody's body is different and everybody will get different symptoms," whether neurologic, arthritis-like symptoms or chronic fatigue, she said.
Symptoms may also be similar to other medical conditions, Bourgeois noted.
According to Bourgeois, Brody has co-infections of Lyme including auto-immune encephalitis and bartonellosis.
A doctor in Connecticut, she said, is treating him for Lyme disease and the co-infections, and a Thunder Bay doctor is prescribing a portion of the medication, "based on the information from the States," she said.
Part of the medication is covered by OHIP, but the boy also remains under the care of the U.S. doctor, which has created a financial burden because of medical and travel expenses there.
A benefit for the family is scheduled for Saturday, May 6 at 8:00 at the Elks Hall. Tickets cost three dollars.
Bourgeois is trying to be optimistic. "I know we're gonna beat this. My baby's gonna be back. I just don't know when it's going to happen."
He's not going to school, but "is a bright boy, he genuinely loves to learn" and gets help from a tutor six hours a week." But his health challenges leave him "failing miserably in social activities," she said.
In the meantime she has some advice for other parents. "Protect yourself and your children, Thunder Bay. Watch out, and trust your gut."
Bourgeois believes there is a shortage of doctors in Canada who have adequate experience or knowledge of Lyme disease, and that the standard Canadian test for it is unreliable.
She sums up the situation for victims of the disease as "truly alarming."
