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The Lyme doctor

By Joanne Laucius, OTTAWA CITIZEN May 9, 2013

Read more: http://www.ottawacitizen.com/health/Lyme+doctor/8363919/story.html#ixzz2Tb0Tiw9w

Dr. Ernie Murakami says denying chronic Lyme is ‘a big, major lie.’ Photograph by: Jenelle Schneider , Vancouver Sun

Dr. Ernie Murakami says he treated 3,000 patients for Lyme disease before he was forced into retirement.

The B.C. physician can no longer prescribe the long-term antibiotics he believes are necessary to treat chronic Lyme. But retirement hasn’t stopped him for directing people to physicians in the U.S. and Europe who diagnose and treat Lyme disease.

By his own count. Murakami has offered free advice to more than 7,000 people looking for help. He will be in Ottawa May 13 for a speaking engagement.

Murakami was the subject of a College of Physicians and Surgeons of B.C. investigation that began in 2005 and agreed to retire in 2008. He says his story has frightened physicians from treating chronic Lyme with long-term antibiotics.

In the world of conventional medicine, few agree that chronic Lyme exists. They maintain that Lyme is a convenient explanation for chronic fatigue and mysterious pain that is hard to diagnose, backed up by conspiracy theories and an increasingly powerful Lyme advocacy lobby.

In September 2011, the influential medial journal The Lancet published an essay authored by 13 medical experts from institutions like Harvard Medical School and Yale University who argued that people searching for information on the Internet see the websites of Lyme advocates and doctors as reliable sources, drawing attention away from evidence-based medicine.

Long-term antibiotic treatment is profitable for “Lyme-literate” doctors, they wrote. And it can be falsely reassuring to patients to believe they have a chronic infection so they don’t seek diagnosis and treatment for something else.

But Murakami says denying chronic Lyme is “a big, major lie.”

And he’s not backing down.

Murakami says diagnosing Lyme is a matter of a clinical diagnosis — that is, observations and reports from the patient about the symptoms, not just lab tests.

“I wouldn’t have wasted the past five years without some credibility,” says Murakami, who had studied bacteriology and immunology and got interested in Lyme when he treated a patient, a student who had been planting trees, in his practice in Hope B.C., about 160 kilometres east of Vancouver.

He had studied syphilis and says Lyme is similar in that it is also caused by a spiral bacteria called a spirochete.

According to Murakami, there are a couple of problems in the system: First, many people who are bitten by an infected tick don’t notice it and only go to see a doctor if they develop the telltale bull’s-eye rash. He says fewer than half of those who go on to develop Lyme actually get the rash.

Secondly, the approved test for diagnosing Lyme is the enzyme-linked immunosorbent assay, known as the ELISA test. This is a two-step process. Only those who test positive in the first part of the test go on to the second part of the test, known as the Western blot test.

Murakami says the ELISA test often produces false negatives so many people who have Lyme are not being diagnosed — and those who are diagnosed get only a 30-day course of treatment as recommended by the guidelines.

He maintains that months and even years of antibiotic treatment are often necessary to kill all the pathogens. Conventional medicine frowns on long-term antibiotics to treat Lyme — although this is sometimes done for decades at a time to treat acne, according to Murakami.

The other issue is that the magnitude of the problem is hidden because people are not getting diagnosed, he says.

Lyme diagnoses are much higher in Washington state just across the border from B.C., while multiple sclerosis diagnoses are much higher in B.C. Murakami believes some people are being mistakenly and unnecessarily treated for MS when chronic Lyme disease is behind the symptoms.

There is also a big differences on both sides of the border in terms of the proportion of ticks carrying the infection, with officials in states bordering Canada claiming a higher rate of infection for their ticks than neighbouring Canadian jurisdictions, says Murakami, who is skeptical that American ticks are more likely to be infected than their Canadian counterparts.

B.C.’s health ministry has extended the right to prescribe antibiotics to naturopaths and some patients are turning to this option, says Murakami. Ontario naturopaths can’t prescribe antibiotics, and there is currently no indication this is likely to happen in the foreseeable future, according to the College of Naturopaths of Ontario.

Murakami says he knows of five people who have committed suicide because they are overwhelmed and depressed by chronic Lyme.

“The medical world has a big divide. We owe it to the public to sit down and talk.”

© Copyright (c) The Ottawa Citizen

Read more: http://www.ottawacitizen.com/health/Lyme+doctor/8363919/story.html#ixzz2Tb1FxVCq

A tiny Lyme-bearing Pacific black-legged tick on a person's arm.

By Sean McIntyre – Gulf Islands Driftwood
Published: July 04, 2012 9:00 AM
Updated: July 04, 2012 10:07 AM
When Salt Spring’s Terri Bibby noticed a bite that developed a red rash after a hike in 2009, she never imagined that she would find herself becoming part of a major medical controversy, requiring years of expensive medical treatment and having to cope with the life-altering symptoms of Lyme disease.

As in the case of many other Canadians in her situation, Bibby was unable to receive a proper diagnosis because of the medical community’s ongoing discord about the disease’s prevalence, diagnosis and treatment. “There is no Lyme in B.C.,” she recalls being told at the Victoria hospital where she was taken by ambulance.

The introduction of a private member’s bill by Saanich-Gulf Islands MP Elizabeth May on June 21 has offered some hope that others faced with potential infection won’t have to undergo the same sense of isolation and frustration experienced by Bibby and countless others.

“This is the ultimate of non-partisan issues. This is the ultimate of non-geographically limited issues,” said the Green Party of Canada leader, while introducing Bill C-442 in the House of Commons. “We are, in each of our ridings, facing an increasing threat to our constituents and their families from a very tiny threat: a tiny tick that is spreading and spreading and can bring debilitating illness to any one of us at any time.”

Lyme disease is caused by a bacteria that is transmitted to humans by ticks, insects that can often be as small as a poppy seed.

May wants to implement a nationwide discussion and subsequent strategy to address the affects of Lyme disease. The proposal, she said, would serve to promote awareness, better diagnosis, offer treatments and examine best practices used in other parts of the world. If the bacteria isn’t detected and treated at the correct moment, the disease’s symptoms can include fever, severe headaches and joint pain, along with other cognitive and neurological debilitations.

“With climate change anticipated to change the number of vector-borne diseases like Lyme disease, development of a formal federal strategy will become a high priority.

“At a time when many U.S. states have tackled this urgent issue head on, it is ironic that Canada still downplays Lyme disease and clings to outdated standards for diagnosis and care,” reads part of a statement released in conjunction with May’s announcement.

“This means that every year hundreds, even thousands, of Canadians either go untreated or are required to go to the United States for treatment where they are prescribed heavy doses of antibiotics not covered by our provincial healthcare plans,” May said.

In Bibby’s case, several trips were made to Seattle and New York state to see specialists and undergo a definitive test that shows she still has Lyme disease after three years of various treatments.

This personal experience encouraged Bibby’s husband, an award-wining documentary filmmaker, to begin work on a film titled A New Lens on Lyme that looks at the latest research on Lyme and associated diseases that are transmitted by ticks.

“The film is science-based,” said Alan Bibby. “It will contain information about the debate in the medical community, but we want to go beyond the rhetoric. The biggest questions involve the reliability of tests, the safety and efficacy of antibiotic treatments and whether the disease-causing organisms can be permanently eliminated. We want to document success stories — those chronic Lyme patients that have achieved a quality of life: what worked for them? We would like something positive to come out of this.”

Bibby has taped local stories and interviewed “Lyme-literate” doctors, specialists and scientists in the United States, where reported cases of Lyme infections are between 20,000 and 30,000 individuals per year. Given that ticks can be found anywhere in the Gulf Islands and Vancouver Island, Bibby urges people who spend any amount of time outdoors to inspect themselves for possible bites on a regular basis.

Ticks are best removed by a slow and gentle pull with fingers or tweezers. Specialized tick removers are available through local retailers and people with any concerns can always visit Lady Minto Hospital.

The best way to lower the odds of contracting Lyme disease is through prevention. In addition to regular tick checks, the Vancouver Island Health Authority recommends people walk on cleared trails wherever possible, wear light coloured clothing, tuck shirts into pants and tuck pants into boots or socks, use a DEET-based insect repellant on all uncovered skin, inspect clothing and scalp when leaving tick-prone areas like grassy fields of forests, and regularly check household pets.

Should symptoms like a bull’s-eye rash develop around the bitten area, Bibby recommends people consult a physician and insist upon immediate antibiotic treatment. “Don’t wait for unreliable testing,” he said.

Bibby said anyone who wants to share their experience with Lyme disease is encouraged to reach him at 250-537-8813 or bibby@media-group.com.

Article Link here:
http://www.gulfislandsdriftwood.com/news/161347775.html

frustration: Doctors refusing to diagnose Lyme disease, says Lee Ryder, people forced to seek treatment across border

Lexi Bainas, Citizen

Published: Wednesday, September 01, 2010

Cowichan Valley resident Lee Ryder is calling on provincial health authorities to admit there is a significant Lyme disease problem on Vancouver Island.

Ryder, who is suffering from third-stage Lyme disease, has to go to the United States for treatment and said last week that the pain, the financial hardship and the sheer frustration that has come from years of butting his head against the wall are almost more than he can bear.

Read Story here:

http://www2.canada.com/cowichanvalleycitizen/news/story.html?id=703bea11-524d-4b79-a152-8b2b4355fd12&k=76889&p=1

Vancouver Sun August 23, 2010
 

 

Re: Controversy with a bite; People with Lyme disease say they can’t get treatment. Health officials say they don’t need it, Aug. 13

Stories like Erin Ellis’s have the possibility to change lives, as it was only a newspaper article that eventually led to my young daughter’s undiagnosed, degenerative illness being correctly diagnosed as neurological Lyme disease. Of course, like many of the individuals in the article, she had to go to the U.S. to be diagnosed and properly treated. My daughter became ill after a visit to Vancouver Island, in 2007.

Read more: http://www.vancouversun.com/health/Canadians+with+Lyme+disease+left+fend+themselves/3430585/story.html#ixzz0xiK7ZwD7

Tuesday, July 6, 2010

By David Cubberly, Special to Times Colonist
 

 

It’s astounding that a single Victoria veterinarian sees more Lyme disease in dogs yearly than are “confirmed” by the Centre for Disease Control for humans across B.C. (“Tests spot tick-borne disease in retriever,” June 26).

How can it be that we see only four to six cases a year of Lyme in humans if one vet sees a case a month of tick-borne disease in dogs (and most often Lyme)?

I hope the standard of care given Annie the retriever will one day be available to people in B.C. Right now it’s not. Annie’s vet suspected tick-borne illness, recognized the need to test for Lyme disease and knew enough to also test for other tick-borne illnesses.

Humans come to doctors with known symptoms of tick-borne illness, yet often face incomprehension or worse.