‘Closer to death than be­ing alive’

Man wor­ried about lack of Lyme dis­ease aware­ness in Nova Sco­tia

The Guardian (Charlottetown) - - ATLANTIC - BY ASH­LEY THOMP­SON

“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.”

ASH­LEY THOMP­SON

Lakeville res­i­dent Gary Trevors says Lyme dis­ease ru­ined his life.

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