‘Closer to death than being alive’
Man worried about lack of Lyme disease awareness in Nova Scotia
“You just think of the very worst flu that you’ve ever had and multiply it by 10.” Gary Trevors
Go ahead. Try to convince Gary Trevors there’s no such thing as Lyme disease.
The Lakeville resident has heard it all before. And he begs to differ.
Trevors believes he first contracted the tick-borne illness while working as a provincial forestry technician in the late 1980s to early 90s.
“I had so many on me each and every day when I worked in Annapolis County,” the 60-yearold said in a recent interview.
Health care providers repeatedly overlooked Lyme disease — a bacterial infection cause by Borrelia burgdorferi — as the root of his ailments, Trevors said.
“It was totally ignored. A lot of doctors didn’t even believe Lyme disease even existed.”
Trevors, on the other hand, kept insisting that Lyme was the most likely explanation behind his symptoms based on what he’d read. His nervous system was under attack, with the right side of his face, arms and hands going numb. He endured memory loss, extreme fatigue and relentless pain.
“I was forcing myself every day to put one foot ahead of the other to go to work because nobody was doing anything for me,” he said, noting that he eventually had to stop working.
“You just think of the very worst flu that you’ve ever had and multiply it by 10.”
Around 2010 or 2011 — Trevors can’t quite recall the year — he heard Dr. Ben Boucher in Port Hawkesbury was treating patients suffering from the long-term effects of Lyme disease. And he didn’t hesitate to reach out.
“I was closer to death than being alive,” he said.
Trevors firmly believes the 32 months of treatment from Boucher, coupled with advice he received in a long phone conversation with Dr. Ernie Murakami from the British Columbia-based Dr. E Murakami Centre for Lyme, saved his life.
“My body was so depleted. I didn’t even look like myself. There’s people in my community that didn’t even recognize me (because) I was in such bad shape and I’ve lived here my whole life,” Trevors recalled.
With Dr. Boucher closing his practice in 2013, Trevors said he now uses whatever antibiotics he managed to save sparingly. But he lives in fear of the day he runs out.
“That’s the only thing that’s keeping me alive right now,” he said, noting that he has not found another doctor in Nova Scotia to offer a long-term treatment for the symptoms he suspects are a result of Lyme disease.
“If you’ve got to treat a person with long-term antibiotics, you treat them until they’re cured,” he added.
Trevors believes Boucher’s approach with Lyme disease patients should be reviewed, and used to develop a protocol that can be followed by frontline physicians throughout the province.
“We need people with experience… he saved my life,” said Trevors.
“If you’re system’s working, why are so many people going to the States to be treated for Lyme disease?”
Dr. Todd Hatchette, chief of service for microbiology in the Nova Scotia Health Authority’s central zone, said it is critical that people become well versed on how to prevent tick bites.
“We’re getting a lot more calls this year of Lyme disease, so the awareness is certainly much higher,” he said.
“Lyme disease is here to stay. The ticks have taken hold in many places in the province and we know that the degree of infection of these ticks has increased with time and we can expect that that is going to remain.”
The Infectious Disease Expert Group (IDEG) continually works to educate the medical community about Lyme disease by sharing information regarding prevention and management, he added.
“If you’re an area at-risk for Lyme disease, the recommendation is if you present with early localized infection like the… [bullseye] rash that’s characteristic, that you get treated and not tested, because we know that the test would be likely negative in about half of the cases,” said Hatchette, who added that the rash can vary or not appear at all in some cases.
Hatchette said it is harder to detect a Lyme infection in the early stages if there is no rash, as the typical symptoms — influenza, non-specific fatigue, myalgias and fevers — can be attributed to a number of things.
As an individual believed to have been infected with both Lyme disease and Bartonella from tick bites, Trevors hopes there will be continued efforts to educate health professionals and the general public about the array of infections that can be spread through insects — and how they are spread.
The father of two, and proud grandfather, wants readers to view his story as a cautionary tale.
“It’s completely ruined my life,” said Trevors, noting that his income has been reduced to a disability pension that does not grant him the option of travelling out of province to pay out-of-pocket fees for medications he can’t acquire in Nova Scotia.
“I live off $900 a month. It costs upwards of probably $3,000 to go to the States.”
He’s encouraged to see more people talking about Lyme disease in 2017, but says there’s still a long way to go before the patients left in limbo can breathe a sigh of relief.
“We need change here.”