Crisis of tick-spread disease crushes London teen – The London Free Press

A day after Canadians celebrate a civic holiday, a London couple will go on their only trip of the summer, driving more than 800 kilometres to Maryland to seek care for a 15-year-old son — care they can’t find in their own country.

Brandan Barnett was once a 12-year-old boy who excelled in school, played AAA hockey for the London Knights and whose can-do attitude inspired his firefighting father Dan and his mom Lisa, an education assistant who helps special needs kids.

Four years later, his body has been ravaged by disease, his parents’ faith in our health care system has been obliterated, and they have placed all their hope on an American doctor who specializes in tick-borne illness like Lyme Disease.

“Brandan had his life stolen from him in an instant, and at every turn, we had absolutely no help from our current medical system at all,” Lisa Barnett told The Free Press. “We were passed from one specialist to another, none knowing what to do (and) had to watch our child become suddenly bedridden.”

The Barnett’s experience is all too typical in a country in which Lyme disease has grown to epic proportions, a crisis that neither doctors nor public health officials have adequately addressed, say a registered nurse and lawyer who have made headway pressing their cause to politicians in Ottawa.

“We have heard similar stories time and time again all across Canada,” said Sue Faber, a registered nurse who battled Lyme for 14 years before co-founding an advocacy group called LymeHope that’s made its presence felt in Ottawa. “It’s just a huge crisis.”

Among with lawyer Jennifer Kravis, the group has swum upstream against the current of conventional practice and belief in Canada, whose doctors and public health officials have resisted the notion that Lyme disease is spreading quickly, can create chronic and debilitating symptoms that last for years, and can be passed through childbirth from mothers to children.

In the last year alone, Faber and Kravis have met with Federal Health Minister Jane Philpott, hosted an Ottawa event that drew more than 40 MPs, testified before a senate committee on health, enlisted the support of one of the Canada’s most influential advocacy groups — the Registered Nurses Association of Ontario —  and persuaded The Public Health Agency of Canada to list on its website aggressive treatment guidelines created last year by the International Lyme and Associated Diseases Society.

Their efforts have also resonated with everyday Canadians, of whom more than 65,000 have signed a petition pushing for change.

But even doctors who have adopted the changes are reluctant to speak out for fear of being ostracized by their peers. “This is a very controversial disease. (Some doctors) are hesitant to get their names out there,” Faber said.

That resistance to change has crushed Brandan Barnett, who for more than four years has been so sick he has been too weak to even attend school — at 5 feet 11, he weighs only 110 lbs.

“He’s gone from a 24/7 never-stop kid to a kid who couldn’t get out of bed,” Lisa Barnett said. “It’s the fight of his life.”

The descent was rapid. After a camping trip to Pinery Provincial Park, a hot spot for Lyme disease, Barnett was playing hockey at Nichols Arena in February, 2014 when he was suddenly overwhelmed with flu-like symptoms. Doctors were stumped, and when a rash developed on his back, a dermatologist prescribed steroids, which only made him worse.

What followed was a parade of specialists: a pediatrician, gastroenterologist, an infectious disease expert, and even a psychiatrist after one doctor suggested the problems might all be in his head.

The notion that a tick might be the source of his ills came from a family friend whose child had Lyme disease.

That led to the family’s first trip to Maryland to the first specialist who seemed to have any idea about what was plaguing Brandan — Dr. Bobak Mozayeni specialized in tick-borne illness.

While tests didn’t show Lyme disease, they did confirm another tick-spread illness, Bartonella. Mozayeni prescribed a lengthy course of antibiotics, and for the first nine months of 2017, Brandan improved.

But in November, the bottom dropped out — Brandan lost 20 pounds in four weeks.

While his parents hope their coming trip to Maryland will help Brandan turn things around, they are devastated their son lost three years to what they believe were missteps by Canadian doctors.

“Brandan might have been able to avoid years of unbelievable suffering (in) pain as his body was attacked by this illness. It shouldn’t be this way. When your child gets really sick, there should be support in Canada,” Lisa Barnett said.

“He had hopes, dreams and a future (and ) I need to do everything I can to mend and heal what this illness has destroyed and taken from him already. He is strong and resilient, and if there is a way to get his health back we will persevere and achieve it. Thank God for his positive attitude.”

Public health agencies in Canada already do one thing well, say Faber and Kravis — the agencies publicize how to lessen the risk of being bitten by a tick, and what to do if they find a tick

But while prevention is a worthy goal, the two advocates say Canadian doctors must learn how to properly diagnose and treat Lyme and other tick-borne illness. Many current practices are concerning, they said:

Doctors test for one strain of Lyme disease when evidence suggests there may be as many as 300.
Doctors won’t use a test well-established in the United States and Europe, a Western Blot test, unless patients first test positive using a method that is known to miss many cases, an Elisa test.
Public health rely on 12-year-old American standards that are no longer used by leading American tick-borne disease specialists
Doctors don’t search for other illness such as Bartonella that are carried by ticks whose population is growing as the climate warms.

The lack of vigilance has created a chasm between the numbers of confirmed cases of Lyme disease and the numbers that LymeHope uses based on surveys of Canadians.

According to public health officials, fewer than 1,000 people were diagnosed last year with Lyme disease. But a survey found that one in 10 Canadians said either they had the disease or knew someone who did.

Despite that disagreement, local public health officials say the number of ticks in the London region is on the rise and the map of affected areas growing across Ontario.

This year and last year, those concerned about tick bites have sent two to three times as many ticks to be tested at the Middlesex-London Health Unit as in previous years, said Jeremy Hogeveen, the health unit’s vector borne disease co-ordinator.

“It’s growing. Climate change is altering the landscape,” he said. “The map of affected areas is growing every year.”

Only one lab in Canada tests ticks, the turn-around time for results is six months, so if someone has been in an area known to have black-legged deer ticks, the type that can carry Lyme disease, and shows symptoms of the disease, the health unit recommends seeing a doctor who can start antibiotics right away, Hogeveen said.

At the same health unit, the Associate Medical Officer of Health, Dr. Barry Pakes, is skeptical of some American practices that specialize in Lyme testing because he believes the tests are prone to show a positive match even when that’s not the case. That someone in London was diagnosed with Bartonella surprises him, as that is a disease that is more typically found in much tropical climates; Pakes said he saw cases when he worked in South America.