Justin Trudeau challenged to suck on a lime for Lyme disease awareness

A volunteer group dedicated toLyme disease awareness, prevention and support in Manitoba is challenging Canada's government to participate in what they're calling "TheLymeSucks Challenge."

Specifically, the Manitoba Lyme Disease Groupis challenging Prime Minister Justin Trudeauand Health Minister Jane Philpottto complete the challenge. Itinvolves declaring, "Lyme sucks"before sucking on a lime, posting a video of the challenge tosocial media and donating to the Canadian Lyme Disease Foundation.

A similar campaign called The Ice Bucket Challenge, where participants videotape themselves dumping a bucket of ice water over their heads, has raised millions for ALS research and support.

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The group's challenge for theTrudeaugovernment comes days before the Federal Framework onLymeDisease Conference in Ottawa, which is scheduled to run from Sunday to Tuesday.

MarnieLe Page, 40, will be there.

Le Page's 13-year-old daughter, Brooke, has been diagnosed withLymedisease,but the diagnosis came months after Le Page believes she contracted it.

'In bed all the time'

According to Le Page, Brooke was infected at a corn maze in Manitoba at the end of October 2014. While Le Page says shedoes not remember seeing a tick bite, her daughterstarted exhibiting flu-like symptoms including excruciating headaches, joint and muscle pain and debilitating fatigue by December.

Before becoming ill, Brooke was a competitive swimmer, spending 20 hours per week training at the pool.

"By March, she was in bed all the time.She couldn't even watch television or read a book. All tests from the emergency room came back [normal]. The one thing they never tested for isLymedisease," Le Page said.

"I requested [the test] from several different places. They said it wasn't possible to getLymedisease at that time of year and they wouldn't run the test."

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Lyme disease, aserious illness spread through ticks, can cause a wide range of symptoms, including arthritis, neurological problems, numbness and paralysis,some of which can last months or years. In rare cases, it can prove fatal.

The LePage familyflew to California, where Brooke was formally diagnosed with Lyme disease at a laboratory calledIGeneX, Inc.

'Our system here isn't adequate'

"Everything is at our expense handling her treatment," Le Page said."Any doctor appointments we've had at the lab since;every treatment, antibiotics, travel costs. Everything is out of pocket for us."

Le Page has since left work to care for Brooke full-time. Still, she saidit was a, "blessing in disguise"to have her daughter diagnosed out of province.

"Our system here isn't adequate for that," she said.

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Some common responses to her requests that her daughter be tested were, "Lyme isn't [in Manitoba],"or, "It's not very common,"Le Page said.

"We could afford the testing. There are many people who can't," she said.

"I met a man [in Manitobaon Friday]who had hadLymedisease for 19 years. He struggles with it and he was in rough shape."

New hope

Le Page saidthe Federal Framework on LymeDisease Conference in Ottawa has renewed her sense of hope for adequate treatment in Canada, so long as planning and development involves input from patients and caregivers.

"Thefact that there is a conference and they're inviting people all across Canada they're either patients or caregivers is they're recognizing there is a problem that has to be addressed," she said.

"SoI am hopeful that there is going to be changes made and hope that they're going to allow us to be part of that change."

As for Brooke, Le Page said despite having to travel to obtain a diagnosis, doctors caught the disease earlyand it has not affected her mobility. Still, the consequences have been devastating.

"She's in junior high. That's a huge part of your social development,and Lyme disease has ups and downs. She was seeing friends last summer. We were hiking. Then, in the fall time somethinghappened and she went down again. She's still trying to pick up again," she said.

"It's a daily battle."