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Lyme disease specialist pleads for more medical awareness
Posted on May 22, 2013 Steve Goodwin

Chelsey Livingstone-Rector, left, and her mother Angela discuss Lyme disease with Dr. Ernie Murakami at a presentation on Lyme last week. (Goodwin photo

People need to rally so that the medical community hears their calls for a serious discussion and treatment of Lyme disease, Dr. Ernie Murakami says.
The retired medical doctor from Hope, B.C., who has gained a rising profile in his quest to educate people and doctors about the disease, says it’s the only way – short of legal action – that will turn the discussion to benefit those who suffer from the debilitating disease.
“The bigger the body, the better the response,” he told about 150 people who attended his address last Wednesday at the Pictou County Wellness Centre. “You can’t do it alone. There’s power in numbers. We as Canadians have to say, ‘Enough of this crap.’”
Many doctors throughout Canada who want to treat Lyme patients are refusing to, over the risk of having their medical licences pulled by various provincial bodies like the College of Physicians and Surgeons of Nova Scotia, Murakami said.
Now 82, Murakami is among many who gave up their practices to avoid harassment and persecution by authorities.
“A lot of doctors want to treat, but they’re afraid to treat because of our colleges,” he said. “This is Canada. There is a constant fear factor. They do not want to lose their licences, so don’t blame the doctors directly. (The colleges) have the power, the intimidation. It’s up to you. It’s your tax dollars.”
Murakami has been treating Lyme patients for years and recognizes how global warming is allowing the ticks that carry the bacteria that cause the disease to proliferate around the world, especially in temperature climates between the 20th and 70th northern latitudes.
He argues with any medical authorities who defend faulty lab testing.
“You only need a clinical diagnosis,” he said. “Doctors are at times viciously denying there is a problem.”
Among those who attended were Angela Livingstone-Rector, who has raised nearly $5,000 for initial and ongoing treatment so her daughter, Chelsey, can see a Lyme doctor who lives in Montreal but practices in update New York because she’s prohibited from treating Lyme patients in Canada.
Chelsey has symptoms consistent with Lyme disease, has no energy to attend school and sleeps a lot, Angela said.
“I had to get her out of bed to come here,” she said. “We’ve been told it isn’t Lyme disease, that it’s all in her head.”

See full story:

http://www.pictouadvocate.com/2013/05/22/lyme-disease-specialist-pleads-for-more-medical-awareness/

ngnews.ca/News/Local/2011-12-05/article-2826047/Girl-with-Lyme-disease-needs-more-intense-treatment/1y

Girl with Lyme disease needs more intense treatment

Published on
December 5, 2011

SUTHERLANDS RIVER – Angela Rector started to cry when she looked at an assignment her daughter, Chelsey Livingstone-Rector, brought home from school. Chelsey, 11, had been asked to write a letter to Santa in French for a class. The only thing she wanted for Christmas, she wrote, was to get better.
“She didn’t ask for any toys. She just wants to get better. It’s enough to break your heart,” Rector said.
Chelsey has Lyme disease, which she contracted when she was just two years old after being bit by a tick in Ontario. She lives with intense pain daily and barely has energy to do things she once loved to do. Just waking up and getting out of bed in the morning is an ordeal. Her short-term memory is shot – she sometimes forgets where she’s going and has to have a helper with her at school and her grades are starting to drop because of her health. She pops more pills in the run of a day than an addict.
“Sometimes it seems like all I do is take pills,” said Chelsey with a sigh, adding that at least they’ve managed to juggle her medications so she doesn’t have to take them at school. “People stare at me, when I take the medicine at school.”
But she’s still not getting better, says her mom, and they’ve recently added two more medications to her daily routine. The new pills are so strong that Chelsey needs blood work every few weeks to test her liver function because the medication could cause damage to it.
“It’s a risk we’re willing to take at this point,” Rector says.
Chelsey has to fight to keep her weight up – she just hit 80 pounds, a major achievement, since it dropped to 58 pounds at one point – and has no appetite for her favourite foods.
It’s reached the point, Rector says, that Chelsey’s doctor has decided to send her to see an expert on Lyme disease in children based in Connecticut. It’s hoped they’ll be able to secure an appointment before the spring.
That’s going to be pricey for the family, who already shells out between $800 and $1,000 a month for Chelsey’s various medications.
Her insurance will only cover prescriptions and won’t pay for the vitamins and supplements she needs and they have told the family that they will not pay travel costs to the U.S. or for any hospitalization Chelsey may need while there.
It’s possible, Rector said, that Chelsey may have to do an IV therapy, which could be as intensive as a 24-hour-a-day, seven-day-a-week regime.
“I don’t know where we’ll get the money to go, but we have to,” Rector said. “I’ll find somebody, somewhere, to fix her. I have to. That’s my child.”
The only thing she has going for her right now it her age, her mother adds.
“The doctor told us to be glad she’s so young,” Rector said, her voice breaking. “She has her youth on her side. Her heart beats between 140 and 160 beats per minute at rest, and has ever since she was bitten. If she’s older, there would’ve been more wear and tear on her heart.”
Chelsey, who has been living with the disease for nine years now, has reached the point where she’s considered to have chronic Lyme disease – and that means that there may be little hope for a cure in her case.
“They’re saying that once you reach the chronic level, you can get treated, go in remission, and every once in a while it could flare up. It could be 30 years down the road or three years,” Rector said.
But still, the family hasn’t given up hope for a Christmas miracle.
“We’re hoping against hope she doesn’t go into remission and that she’s cured,” Rector said.