BILL NO. 46 (as introduced) 1st Session, 62nd General Assembly Nova Scotia 63 Elizabeth II, 2014 Private Member’s Bill Lyme Disease Strategy Act Tim Houston Pictou East First Reading: April 10, 2014 Second Reading: Third Reading:
An Act Respecting a Lyme Disease Strategy for Nova Scotia Be it enacted by the Governor and Assembly as follows: 1 This Act may be cited as the Lyme Disease Strategy Act. 2 In this Act, (a) “district health authority” means a district health authority within the meaning of the Health Authorities Act; (b) “Minister” means the Minister of Health and Wellness; (c) “Provincial strategy” means a Provincial strategy to address the challenges of the recognition and timely diagnosis and treatment of Lyme disease. 3 The Minister shall, within six months after this Act comes into force, convene a conference with stakeholders, including representatives of the medical community and patients’ groups, for the purpose of developing a comprehensive Provincial strategy that includes (a) the establishment of a Provincial medical surveillance program to use data collected by the Department of Health and Wellness and district health authorities to properly track incidence rates and the associated economic costs of Lyme disease; (b) the establishment of guidelines regarding the prevention, identification, treatment and management of Lyme disease, including a recommended Provincial standard of care that reflects current best practices for the treatment of Lyme disease; and (c) the creation and distribution of standardized educational materials related to Lyme disease, for use by any public health care provider within the Province, designed to increase Provincial awareness about the disease and enhance its prevention, identification, treatment and management. 4 The Minister shall prepare a report that sets out the Provincial strategy and publish the report on the Departmental website within one year after the conclusion of the conference referred to in Section 3. 5 The Minister shall, within 10 days of the publication of the report referred to in Section 4, table the report in the Assembly if the Assembly is then sitting or, where it is not then sitting, file the report with the Clerk of the Assembly. 6 The Minister shall (a) complete a review of the effectiveness of the Provincial strategy no later than five years after the day on which the report referred to in Section 4 is published on the Departmental website; and (b) within 10 days of the completion of the review, table a report on its findings in the Assembly if the Assembly is then sitting or, where it is not then sitting, file the report with the Clerk of the Assembly. 7 (1) The Governor in Council may make regulations respecting any matter or thing the Governor in Council considers necessary or advisable to effectively carry out the intent and purpose of this Act. (2) The exercise by the Governor in Council of the authority contained in subsection (1) is a regulation within the meaning of the Regulations Act. This page and its contents published by the Office of the Legislative Counsel, Nova Scotia House of Assembly, and © 2014 Cr
Thankyou so much for all your posts, very heart warming. I hope you all had a great Christmas and looking forward to a healthy and happy New Year. Thankyou Derek for this website and all the work you do to keep this going, I am very grateful. I never say Thankyou enough and you usually only hear me shrieking about all the spam viagra posts l0l.
I was very sick over Christmas and have been lacking in new posts. I thought I wouldn’t make it through Christmas day I was feeling so bad but today I’m feeling like Christmas 2011 was a rebirth for me. So much so I think I’m going to buy a Baby’s first Christmas 2011 ball~its significant. I’m deciding if I will do a blog on this, I would have to be so honest with it and not sure if that’s fair to the other Lymies. You know how bad with memory I am all the conversation came back to me at the time and I did take a moment to chuckle. :~] Looking forward to 2012 !!
Peace n Love, healing n whole … love ing XO
Recent press release from CDC who’s motto is “24/7 saving lives and protecting people” !!
…and it’s getting considerable attention…
I blogged last week about the unprecedented wave of recent media coverage about Lyme disease. Turns out, we hadn’t seen nothin’ yet.
On Monday, August 19, the CDC announced that it had raised its official estimate of how many cases of Lyme disease are diagnosed each year, from 30,000 to 300,000. (No matter that way back in 2004, the CDC stated on the record that official numbers were likely underreported by a factor of 10. Suddenly, putting that big number—300,000—in an official government press release made the news media sit up and take notice.)
All the major news outlets carried the story, some of them going into deeper detail than others. Here are links to a sampling if you want to check them out yourself.
In addition to a news story, the Poughkeepsie Journal (in New York state) ran an editorial entitled “Lyme fight must go beyond change in numbers.” In addition to having more accurate reporting of cases, the newspaper suggests a number of changes:
That would include providing doctors with more protections if they are treating long-term cases of Lyme. It also would include establishing a federal advisory committee to ensure that all medical points of view are being represented before public health policy decisions are reached in relation to Lyme.
Sound proposals have been offered for years, but little action has been taken. Armed with new numbers, advocates must continue the fight for a better and broader fight against Lyme.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at email@example.com.
- See more at: http://lymedisease.org/news/touchedbylyme/cdc-lyme-number-coverage.html#sthash.VBV9I5Gl.dpuf
LYME DISEASE IN QUEBEC – A TICKING TIMEBOMB
For The Gazette by Robert J. Galbraith
Montreal-Quebec’s leading authority in the science of tick biology says that the southern part of Quebec has become ground zero in the spread of the debilitating disease commonly known as Lyme’s disease, and that little is being done by the provincial or federal health officials to notify the public and physicians of this very real and increasing health threat.
“We could have a real problem on our hands if things keep going the way they are,” explained Dr. Alain Villeneuve, a Professor of Parasitology at the Faculty of Veterinary Medicine of the Université de Montréal, in St-Hyacinthe. “The public should be made more aware of the reality of Lyme disease (LD) and its spread and know how to take precautions to prevent infection.”
Meanwhile, Lyme’s disease (LD) cases are skyrocketing along the Vermont, New York and Maine borders with Quebec, where as of last year, close to 20,000 cases of LD infection were reported in humans. Ontario reported 102 cases in 2008 (though this number may actually be much greater due to misdiagnosis of the symptoms and infection) and the numbers of infection are growing as the infected tick numbers spread through this neighbouring province.
LD is a bacterial infection caused by the bite of the black-legged tick (also referred to as the deer tick). If untreated, it can cause serious health symptoms that affect many systems of the body, but it can be effectively treated if caught in the early stages of infection. The longer the disease remains undetected, the more serious and debilitating the symptoms become and the more difficult they can be to treat.
A second tick, more common to Quebec, is the brown or dog tick. Unlike the deer tick, this tick does not carry the Lyme bacteria, though its bite can cause a number of different sicknesses.
As the deer populations in Quebec increase, so does the tick population. Climate change is also a contributing factor to the spread of ticks. The warmer our winters become, means the more ticks that will survive to cause problems.
Dr. François Milord, a medical consultant with the Institut national de santé publique du Québec, agrees that more must be done to reach the medical workers and the public living in Quebec, particularly in the Montérégie and southern regions of the province. “If we look at what has happened in other areas, the numbers will probably increase in coming years. This is the time to inform all parties about this potential growing problem.”
He explained that, “last year we sent some information (a brochure) to all physicians in private clinics and CLSC’s, by mail, on various subjects including LD. We may need to do more, but at this time, we have done nothing to notify the public, though there is information on LD on the Ministère de la Santé (INSPQ) web site.
When Milord was asked if there was a chance that the brochure sent to the medical workers might have been put aside, not read, or discarded as junk mail, he responded. “It’s true they (medical workers) receive a lot of information on many different subjects and many may have not seen the article on LD because they chose not to look at this specific brochure.” Milord explained that, “we have been working with Health Canada in collaboration of our field studies. The ticks found on humans and animals are sent to the Health Canada office in Winnipeg for analysis. Humans showing symptoms of LD are studied here.”
He explained hat the first reported case of LD in Quebec was in 2004. “What I know is that from 2004 to 2007, cases that were reported in the province were all instances of LD that were acquired outside of Quebec, in the United States, (LD is also widespread in Europe and Asia).
It was in 2008 that the first confirmed case was acquired inside Quebec, in the Montérégie. “If we look at what has. From 2004 till 2009 we have had between 8-15 cases per year, with most of these cases caught outside the province. We had 13 cases in 2008. Of these, 10 were caught outside the province and 3 in the province. In 2009 there were 14 cases, and of these, 4 were acquired in Quebec.”
The same concern about the spread of LD in Quebec is being voiced by Jim Wilson, the president of the Canadian Lyme Disease Foundation (CanLyme), formed in 2004. He holds no punches when strongly emphasized; “the situation in Quebec is ridiculous! Research in Quebec has been very limited and very much under reported. Rather than be pro-active, they (health officials) swept it under the carpet and hoped it would all go away,” he stated. “In the next five years LD will rear its ugly head and be a huge problem in that province. Then the authorities will be forced to acknowledge they should have taken this threat seriously twenty-years ago, when the writing was on the wall.”
Wilson says it is appalling and the public should be angry and demanding answers from the government. They should be doing much more investigation, not in the field, but on human pathology. We already know it (the deer tick) is here and widespread. “Its time to start doing human research and stop doing it on ticks”
Wilson himself was an LD victim. He contracted it after being bit by a tick in 1991, in Dartmouth NS, where he lived at the time. Shortly after being bit, he noticed a bull’s-eye-type rash around his navel, but the local doctors didn’t know what it was. Shortly after it appeared, the rash went a way. Months later he became very sick. “At this time we moved to British Columbia where I visited a whole series of doctors, going from specialist to specialist,” he explained. “But it was misdiagnosed, the physicians were unable to find what was going on.”
At this time he found a book on LD and mentioned the possibility of himself having LD, but the doctors were sceptical. “It was finally a doctor in BC that confirmed it was LD, in 1994. Once the treatment kicked in, it was absolutely amazing. I didn’t feel like I wasn’t dying anymore.”
He says present testing is completely inadequate and using 1980’s technology. They should be running multiple tests.”
Deer ticks in all stages of reproduction are now well established in the province, whereas studies initiated in 2004 indicated that only adult deer ticks were being found in Quebec. “They were probably the result of adult ticks attaching themselves to migratory birds in contaminated regions of the United States. Then when the birds migrate to Quebec, the ticks would drop off looking for a host to feed on their blood,” he said.
Then in 2007, during field work, Milord and his associates found that the full tick breeding cycle (larva, nymph and adult) in Quebec had become a reality and, “they seemed to be well adapted and growing in numbers.” He also acknowledged that Lyme carrying ticks, “are widespread in the province because of the ticks hitchhicking on migratory birds.” He admits research could have started a few years earlier but it began in 2007.
Lyme disease was first identified in Lyme, Connecticut in 1975. They didn’t understand what it was until 1982. It was believed to have come into the US from Europe or Asia on someone’s pet and spread from there.
The disease is difficult to diagnose as its symptoms are not consistent. It has been often called the ‘great imitator’ by medical researchers and physicians as it is very illusive and can impersonate a number of different diseases and neurological disorders at the same time. It can be first recognized as a rash near the bite area, but even the rash is not present in all cases. It can affect the brain, joints, the lungs, central nervous system; every organ of the body. Each case can be different and the great majority of cases in Canada are misdiagnosed due to a lack of knowledge of the symptoms by physicians. “We don’t know how many are suffering because of misdiagnosis,” says Wilson.
“Advanced stages of Lyme’s are very similar to the symptoms of Multiple Sclerosis. But because of the ignorance in the medical field, Lyme sufferers can be misdiagnosed as suffering from something else, such as multiple sclerosis, Alzheimer’s disease, chronic fatigue, ALS, Crohn’s disease, Parkinson’s, advanced arthritis, respiratory and a variety of psychiatric and psychological disorders,” he explained.
“We should be giving those sufferers of MS symptoms the LD antibiotics, and if they don’t improve, then they actually have MS, but if they do improve, then we know it was Lyme’s. We really have to catch up to speed on the analysis as so many can be misdiagnosed and be suffering unnecessarily.”
He states that it is a misconception that deer ticks only live on deer. They are just as likely to live on shrews, white footed mice, squirrels, as well as our pets. If your dog sleeps on your bed, you’d better damn well make sure it doesn’t have ticks, otherwise they may end up feeding off you.”
Wilson recommends that pet owners use latex gloves to examine their pets for ticks, paying close attention to the ears, around the face, eyes, legs and belly, looking for unusual lumps. Ticks will range in size from the size of a poppy seed to the size of a fingernail (when it has drawn blood and ready to drop off).
When a tick is found embedded in the skin, use fine pointed tweezers at the point of attachment, and grasp firmly. Using slow, steady, pressure, pull the tick straight out from the skin, and then cleanse the skin with mild soap and water. Do not twist or jerk the tick. Place the tick in a jar of alcohol or a jar with a dampened cotton swab, so it doesn’t dry out and contact Santé Quebec or Health Canada as to where to send the tick for analysis. Do not grasp and squeeze the tick’s body as it will regurgitate its body juices into the human body. Also, do not coat the tick in Vaseline, or alcohol or burn it off with a hot match as this will aggravate the tick and it may release more bacteria into the bloodstream. The only safe way to remove them is what is described above. You can also bring your pet to the vets and have them remove it.
Ticks prefer to live in or near wood piles, wooded and bushy areas with high grass where it is moist and cool. When visiting areas where ticks are known to inhabit, wear light coloured clothing so you can see any tricks on your clothing and wear long pants and shirts and tuck your pants into your socks. You can also apply the insect repellent DEET on skin and clothing but not on skin under clothing. DEET dissuades ticks from attaching to you. When you come home (or while still outside is recommended), check yourself, your pet, or your children all over for ticks, especially anywhere hair grows on the body.
Wilson explained that the message that, “no tick is a good tick, must get out to the public. These organisms are very, very dangerous and its not just deer ticks but other diseases passed on by all ticks. And why is there no massive education going on where these creatures are known to occur. There should be bilingual poster campaigns advising the public what to watch out for and how to safely remove ticks from themselves and their pets. There should also be TV ads and most importantly, physician awareness.”
Websites of interest; www.canlyme.org, http://www.phac-aspc.gc.ca/id-mi/lyme-eng.php , http://www.inspq.qc.ca/english/default.asp?A=7
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Lyme disease specialist pleads for more medical awareness
Posted on May 22, 2013 Steve Goodwin
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.”
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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
Ottawa Lyme disease sufferers say they aren’t getting the help they need
But medical establishment says controversial antibiotic treatment endangers patients, others
By Joanne Laucius, OTTAWA CITIZEN May 10, 2013
Read more: http://www.ottawacitizen.com/health/Ottawa+Lyme+disease+sufferers+they+aren+getting+help+they+need/8363913/story.html#ixzz2SuDHas00
LYME DISEASE: PAINT THE TOWN GREEN
Among the events scheduled this week to raise awareness of Lyme disease:
On Saturday, the heritage portion of Ottawa City Hall will be lit up in green from dusk to dawn and volunteers will be handing out information and “tick keys,” pocket gadgets used to remove ticks.
The CN Tower in Toronto will be lit up in green on Saturday. On May 17, a portion of Niagara Falls will also be illuminated in green.
Dr. Ernie Murakami, a B.C. physician and Lyme advocate, speaks in Ottawa on Monday at 7 p.m. at Saint John Lutheran Church, 270 Crichton St.
OTTAWA — Photographer Heather King says she knows where she got Lyme disease. It was taking photos at the Bruce Pit in 2009, where she also picked up pieces of wood and bark for a future project and left them in her closet.
People who are bitten by a Lyme tick often develop a telltale bull’s-eye rash alarming enough to warrant a trip to the doctor. King, 39, didn’t get the rash, but in the weeks and months that followed, she developed mysterious and debilitating symptoms: chronic fatigue, swollen, aching joints, nausea, headaches, neck pain, heart palpitations and “air hunger.”
“It feels like your lungs are filling up with sand and there’s nothing you can do to breathe,” she says.
King felt so anxious that she was terrified to go to the grocery store or to check the mailbox. She says once in 2010 her hand was so swollen, it looked like a baseball glove. She hasn’t worked since.
Physicians and Ottawa Public Health officials take Lyme disease very seriously. People who find a tick attached to their body are urged to remove it carefully, put it in a baggie and bring it to public health for analysis.
Those who have the rash or test positive for the disease are prescribed a round of antibiotics. That usually does the job, although some studies have found that in a minority of cases, the symptoms linger for up to two years.
However, more than 50 people in the Ottawa area, like King, say they were not diagnosed in the early stages of the disease.
They say they are being treated for illnesses like multiple sclerosis and depression when they should be treated for Lyme — and they are forced to find their own treatments through alternative practitioners and “Lyme-literate” physicians in the U.S. who are willing to prescribe long-term antibiotics because the Canadian medical establishment is doing nothing to help.
Hope, B.C.-based Dr. Ernie Murakami, who will be in Ottawa Monday for a speaking engagement, says he was forced into retirement in 2008 for treating patients with long-term antibiotics.
“There is a tremendous fear factor in the medical community because of what happened to me,” says Murakami, who was the subject of a College of Physicians and Surgeons of B.C. investigation starting in 2005.
“A lot of medical doctors will work under the radar. But they are absolutely petrified.”
Treatments in the U.S. can cost well over $1,000 a month, but infectious diseases experts say long-term antibiotics endanger not just patients, but other people as well. The medical establishment is standing firm. Acute Lyme exists. Chronic Lyme does not.
Dr. Paul Auwaerter, a professor of infectious diseases at Johns Hopkins in Baltimore, calls chronic Lyme the same kind of dangerous anti-science as the anti-vaccine movement.
“There are some people who have persistent conditions. There is no disagreement. But it is a small number of people,” says Auwaerter, who is on the board of the Infectious Diseases Society of America, which represents about 9,000 specialists in the U.S. and Canada.
Auwaerter says people are being labelled with chronic Lyme and are put on a treatment path that can be life-threatening or even deadly. Patients on long-term antibiotics in the U.S. have died after developing a strain of antibiotic-resistant bacteria.
Others expose themselves to the risk of C. difficile colitis, which is caused when antibiotics kill “good” bacteria, allowing C. difficile to proliferate and cause burns in the colon, says Auwaerter.
On a societal level, doctors are concerned about antibiotic-resistant bacteria, which are becoming more common and difficult to treat. He says 14 other medical bodies in North America and Europe also subscribe to guidelines that deny long-term antibiotics.
What is the explanation for these mysterious symptoms? Auwaerter says there are many, including sleep disorders, Parkinson’s, multiple sclerosis, anxiety, depression and low testosterone in men.
“There are people who are looking for help. I understand that. But chronic Lyme is a false-paved road.”
At various times in the past two and a half years, Heather King has been diagnosed with anxiety and fibromyalgia. She saw an infectious diseases specialist and a rheumatologist. After she tested negative for Lyme in Canada, King went to the U.S.
Last September, armed with her test results and rebuffed by her doctor in Ottawa, she went to see a “Lyme-literate” doctor in New York who put her on a course of antibiotics that could last as long as three years.
King estimates that she paid $7,000 for alternative treatments before her diagnosis, and since then has spent $1,000 a month on supplements and antibiotics.
“There is a denial that chronic Lyme exists,” says Erin Bidlake, who traces her Lyme to 1999. She was a 20-year-old camp counsellor in Morin Heights, Que. that summer and moved to St. Andrew’s, N.B., as a student in the fall. She had to return home after she woke up with intense back pain one morning in November.
The pain travelled to her knees, feet, arms and neck. It got so bad, she had a hard time brushing her teeth. She made the rounds of medical specialists for years. She was prescribed Prozac because the mysterious illness was believed to be a manifestation of depression.
“If you go to a doctor with acute Lyme disease, you’ll get treated. They don’t seem to have an answer for missed Lyme disease,” says Bidlake, who has taken antibiotics for 18 months and says she’s about 90 per cent better.
Ottawa environmental physician Dr. Jennifer Armstrong considers Lyme when treating a patient who presents with chronic fatigue. But she also looks at other factors, including diet and exposure to moulds and pollen.
She sometimes uses tests from labs in the U.S. and Germany because she believes doctors in Ontario don’t have the tools they need to diagnose.
The Lyme debate is very polarized, says Armstrong. She knows physicians who are afraid to talk about the possibility of chronic Lyme with patients for fear of reprisals from medical bodies.
“You have to ask yourself: ‘What is the politics here?’ ” she says.
“We all have to work together and see what we can do to make these people better.”
The Lyme advocacy movement is now more than 20 years old in the U.S. and has moved into Canada.
Last June, Green Party Leader Elizabeth May introduced a private-member’s bill urging a national Lyme disease strategy. Warming climate means more than 80 per cent of the population of Eastern and Central Canada will be living in areas at risk of Lyme disease by 2020, she says.
May got involved after she met a neighbour in Nova Scotia with a disabling illness in 2005. When she moved to B.C. four years later, she met more people who were depressed, frustrated and desperate to get treatment.
“This office has heard from hundreds of people with Lyme disease,” she says. “It is vastly underestimated. Once I tabled my bill, I had people come up to me on the street.”
Denying the existence of continued infection abandons sick people with a treatable illness, she says.
“I’m an MP, not a doctor. I just want to shine a light on this.”
In the U.S., eight states have enacted legislation to protect “Lyme-literate” physicians from investigation by medical bodies and forcing insurance companies to pay for treatment.
That’s about politics, not medicine, says Auwaerter.
“Go to a Lyme-literate doctor and you will be told you have Lyme.”
And what about going into the woods? Auwaerter, who runs a Lyme clinic in Baltimore, loves camping.
“I don’t live in fear. And I treat a lot of boy scouts.”
We detected Bartonella quintana in 48.6% of captive rhesus macaques from an animal facility in Beijing, China. Prevalence of infection increased over the period of observation. Our findings suggest that macaques may serve as reservoir hosts for B. quintana and thatPedicinus obtusus lice might act as efficient vectors.
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Created by Luba Williams on January 16, 2013
About This Page
Unfortunately two years ago my father passed away, and just prior to his death he was taken by a professional con-artist woman. She stole nearly $200,000 from our family and fled the country with all the funds, plus more. She was never criminally charged by police and our family has to now pay all of this money back to the bank or we lose our home . Otherwise , we could have remortgaged the house for my treatment. I want to get well to pay all of this off for my mom who takes care of me, she’s now 75 years old and I need to do this for her as much as for me.
In supporting me, I guarantee you I will use my funds to help me get well, and for some medical aids or devices I need like a bath chair/walker and such. The rest will go to medications and treatment for my illness. I want to be well again and I need to get well to help others. I thank you for reading my story and I appreciate from my heart any offerings of assistance. If you too are struggling in life, please hold on and never give up hope. Stay focused on bringing positive things to you and they will come, in time and the right way. We must always believe! Have hope, have life, have love for life !
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Published on September 14, 2011
Lyme disease is difficult to detect, dangerous if left untreated and commonly misdiagnosed.
It’s also striking close to home.
Heather Carter knew little about Lyme disease until she realized she was experiencing the same symptoms as a friend being treated for the bacterial infection that is transmitted to humans through blacklegged tick bites.
Both women, middle-aged Ardoise residents, have been battling extreme fatigue, dizziness, confusion, aching muscles and joints, and a variety of flu-like symptoms this summer.
“It’s not day to day; it’s hour to hour,” said Carter, who no longer drives because she finds it is too difficult to stay alert for an extended period of time.
Carter began taking antibiotics to treat the infection July 28. She did not receive the bulls-eye rash that may appear once someone has been bitten by an infected tick, which makes it easier for doctors to diagnose the disease that has such insidious symptoms it often gets misdiagnosed and left untreated for far too long.
“It’s really quite frightening what can happen if it gets to the chronic stage,” Carter said.
“There are people out there that may have it and not realize it.”
Carter says it is important for people to realize infected ticks are in Nova Scotia. She personally knows of four people in Hants County being treated for Lyme disease.
But, as of Aug. 31, Capital Health Authority spokesman John Gillis said there have been no new cases of Lyme disease reported in Hants County in 2010 or 2011.
Doctor finds statistics misleading
A British Columbia-based Lyme expert, Dr. Ernie Murakami, says relying on reported cases of Lyme disease as an indication of the prevalence of the infection in a Canadian province, or county, can be misleading.
Murakami says there are noteworthy discrepancies between the low quantity of Lyme disease cases reported in Canadian provinces, and the significantly higher number of cases recorded in neighbouring American states.
According to the Communicable Disease Prevention and Control section of the Government of Nova Scotia’s website, 67 cases of Lyme disease have been reported in Nova Scotia since 2002.
Statistics released by the Maine Center for Disease Control and Prevention reveal that Maine, the closest American state to Nova Scotia, had 734 confirmed or probable cases of Lyme disease reported in 2010 alone.
Murakami said a comparison of the number of reported cases in Canadian provinces and bordering American states should act as a wake-up call for many Canadian doctors.
“How can you compare single figures versus thousands across the border? I don’t see how the border could make much of a difference,” he said during a phone interview Sept. 7.
Ticks, which are typically found in wooded areas and long grass, have the ability to travel long distances by latching on to larger species, such as birds, deer or mice.
In Canada, Murakami says, patients must test positive for Lyme disease according to an ELISA test — a detection method that he describes as inadequate — before a case is reported to a public health agency.
“We, as Canadian doctors, are doing a great injustice perpetuating a lie that this ELISA test is the golden standard for the diagnosis of Lyme disease.”
Difficult to diagnose
Murakami says the ELISA test periodically produces false negatives, leading medical professionals to misdiagnose patients with Lyme disease and, in doing so, inadvertently prolonging a patient’s suffering.
“The Western blot test is more specific for Lyme disease, but unless the ELISA is positive, it’s not done in Canada,” explained Murakami, noting that he has sent samples to labs in the United States for advanced testing, only to realize the ELISA tests interpreted in Canada produced inaccurate results.
“We, as Canadian doctors, are doing a great injustice perpetuating a lie that this ELISA test is the golden standard for the diagnosis of Lyme disease.”- Dr. Ernie Murakami
“It’s so frustrating for me to see some people sort of slipping through the cracks as far as the diagnosis of Lyme goes, and this is why I’m dedicating my whole life just to try and educate,” he said.
Murakami, a retired family physician who was awarded Clinical Associate Professor Emeritus status at the University of British Columbia, travels throughout the country lecturing at group functions designed to inform the general public, and any health professionals who will listen.
In his presentations, Murakami discusses the importance of treating Lyme disease on a clinical basis upon identifying the symptoms, rather than waiting for the results of an ELISA test to return from the National Microbiology Lab (NML) in Winnipeg.
A directive released by the Public Health Agency of Canada Feb. 25 stated that 24 false-negative results had been returned from the NML, out of about 1,557 samples tested. The misdiagnosed patients were spread throughout five provinces.
“When someone shows symptoms of Lyme disease and might have been exposed to the ticks that carry it, guidelines recommend that physicians treat the illness, even if it has not been confirmed with laboratory testing,” the release stated.
“All laboratory tests have a margin of error, which is why physicians are encouraged to follow the recommended treatment guidelines and treat patients they suspect may have Lyme disease with antibiotics, even without the results of lab tests.”
Living life Lyme literate
Murakami says general practitioners must treat severe cases of Lyme disease with high levels of antibiotics for longer periods of time than the standard two to four weeks that is recommended for infections identified in the early stages.
“We, as professionals, have to get together… and talk about Lyme disease, and learn,” he said.
“It’s really a struggle to try to get people on board.”
Murakami, founder of the Dr. E. Murakami Centre for Lyme, says he has a better understanding of Lyme disease than most people, but he is often hastily dismissed by medical professionals that are hesitant to change how they diagnose and treat it.
“I’ve treated over 3,000 directly, and about 4,000 indirectly through other doctors and specialists,” he said, adding that some physicians still consult him for advice.
If left untreated, Murakami says, Lyme disease can attack every organ in a person’s body. It is commonly misdiagnosed as heart or mood disorders, arthritis, multiple sclerosis, fibromyalgia, Irritable Bowel Syndrome, ALS or lupus.
Murakami says he has cured people who have been left disabled for years by the debilitating disease, and restored their bodies to good health.
“I have so many happy people telling me what I’ve done for them,” he said.
Murakami will be visiting the Basinview Drive Community School in Bedford at 7 p.m., Sept. 19, to speak about Lyme disease prevention, the proper way to remove a tick, diagnosis methods and treatment options.
The visit to Nova Scotia, Murakami says, is part of his endeavour to promote Lyme literacy from coast to coast.
“I won’t stop.”
It’s alarming to read that the person in charge of infectious disease control in Nova Scotia is asserting that doctors should be relying on blood tests for a diagnosis of Lyme disease (re: “Doctors blamed for mishandling Lyme disease,” Sept. 22).
The Public Health Agency of Canada quite clearly recommends: “When someone shows symptoms of Lyme disease and might have been exposed to the ticks that carry it … physicians [should] treat the illness, even if it has not been confirmed with laboratory testing.”
Furthermore, the ELISA test used here is notoriously unreliable, and at least one Lyme disease specialist has publicly urged that it be banned.
The number of Lyme cases officially recognized by the province (67) remains laughably small by comparison with the actual cases.
It’s high time that the Health Department records the number of people being treated, rather than the number of positive results on a discredited test.
Gillian Thomas, Ardoise
In your Sept. 22 article “Doctors blamed for mishandling Lyme disease,” Elaine Holmes, the province’s director of communicable disease prevention control, is reported as saying, “Nova Scotia uses blood tests to confirm Lyme disease” and “any clinical diagnoses in Nova Scotia must be followed up by a blood test.”
I draw to your attention an article in The Chronicle Herald in February, titled “Lyme disease tests gave false all-clear to 13 Nova Scotians — health officer.”
In this article, Dr. Robert Strang, Nova Scotia’s chief public health officer, is quoted as saying, “Often our recommendation to physicans is if somebody has been in an area of high risk or has a likely or known tick bite and then also has clinical symptoms, to go ahead and … treat the person. And we’ll continue to call them a Lyme disease case and everything regardless of what the lab tests show.”
Elaine Holmes’ statements are in direct opposition to Dr. Strang’s.
Both of these individuals are employed by the Health Department of Nova Scotia. Does the right hand not know what the left hand is doing?
With the mishandling, underdiagnosis and misdiagnosis of Lyme disease in this province, it is not the health professionals who are suffering. It is the Lyme disease victims.
We deserve better.
Paula Isenor, Bedford
One was a 44-day-old baby with malformed lungs, another an 11-year-old boy on chemotherapy for a brain tumor. A third was a heart transplant recipient, 54, and three more were premature infants.
All received blood tainted with a rapidly spreading tick-borne parasite that infected four times as many New Yorkers last year as in 2002. The state ranked first nationwide in 2011 for the malaria-like malady, called babesiosis, and Dutchess County ranked first in the state, according to state and federal data obtained by the Poughkeepsie Journal. As the number of cases rises, babesiosis is poised to become a tick-borne scourge akin to Lyme disease, but with an especially vicious twist. The sometimes-fatal disease can pass from blood donors who do not know they are infected into a blood supply that has no test to screen for it. That’s why transfusion-transmitted babesiosis tripled from 26 cases nationwide in the first half of the 2000s to 83 in the latter half, according to a 2011 study in the Annals of Internal Medicine, a medical journal. There were 60 cases in New York since 1979 — with nearly half, 28, from 2005 to 2011. Of the six transfusion cases above, reported by physicians at two New York City hospitals, the heart recipient and two of the babies became ill, according to medical articles. They recovered, usually with treatment involving antibiotics and anti-malarial drugs. But at least 26 people have died since 1979 after receiving blood tainted with the Babesia pathogen — 10 since 2007, federal research shows. They include a 43-year-old woman with hepatitis C; a woman, 47, with diabetes and kidney disease; and a 76-year-old man with leukemia. Indeed, the elderly and sick are most vulnerable to babesiosis — and most likely to need transfused blood. Babesiosis is caused by a parasite, usually Babesia microti but other Babesia strains as well, that invades red blood cells; symptoms include fever, drenching sweats, muscle pain and anemia that may lead to internal bleeding and organ failure, according to the U.S. Centers for Disease Control and Prevention. The first national figures show 1,124 cases in 2011 from 17 reporting states. Nearly half of cases for which information was available resulted in hospitalization, while 6 percent to 9 percent of patients hospitalized for babesiosis died, according to one small study from the Lower Hudson Valley and two others from Long Island. “The situation with rising risk and incidence of babesiosis is alarming,” said Richard Ostfeld, a senior scientist at Cary Institute for Ecosystem Studies in Millbrook who this month reported nearly 1 in 5 ticks infected with Babesia on lands near the institute. That’s likely the highest reported rate in nymphal, or juvenile, black-legged ticks, the most dangerous stage when barely visible to the people they bite.
Lyme disease test kits are class II (IV
being the highest risk class) in vitro
diagnostic devices. The devices are
intended for the detection of antibodies
to Borrelia burgdorferi in human serum,
plasma or cerebrospinal fluid.1 They are
used to provide serologic evidence of
B. burgdorferi exposure.1 Infection can
result in dermatologic, neurologic,
cardiac and musculoskeletal disorders.2
Serologic testing is the only
standardized type of laboratory
investigation available to support the
clinical diagnosis of Lyme disease in
North America.3 The public health
agencies of Canada and the United
States recommend a two-tiered
approach for blood testing when Lyme
disease is suspected.3–7 The first tier
consists of an enzyme immunoassay,
such as an enzyme-linked
immunosorbent assay (ELISA), or an
indirect immunofluorescent assay. If the
result of first-tier testing is negative, the
sample is reported to be negative for
antibodies to B. burgdorferi and is not
tested further. If the result is positive or
indeterminate, second-tier testing with
a standardized Western blot is then
As of June 2012, Health Canada
received one incident report of
false-negative serologic test results for
24 patients that may have delayed
treatment. Timely recognition of Lyme
disease and treatment are imperative to
facilitate recovery and prevent longterm
The currently available Lyme disease
test kits have been found to have
limitations of sensitivity and specificity,
particularly when used on patients with
acute infection, which is usually easily
treated with antibiotics.7,9 Even when
the conventional two-tiered testing
approach is used, the sensitivity and
specificity of the combined test results
can be less than optimal.9–11 In a
comprehensive study of 280 serum
samples from well-characterized Lyme
disease patients, the sensitivity of the
two-tiered approach was as low as 38%
for the sera of patients who had
erythema migrans during the acute
phase and 67% during their
convalescence after antimicrobial
treatment.10 In late Lyme disease, the
sensitivity increased to 87% for the
sera of patients with early
neuroborreliosis and to 97% for the
sera of patients with Lyme arthritis.10
Many factors contribute to falsenegative
or false-positive serologic test
results for Lyme disease.1,7,9,11–14 In
general, false-negative results have
been attributed to (a) a slow antibody
response early in the course of the
disease, (b) genetic diversity of
B. burgdorferi and (c) treatment with
antibiotics. False-positive results have
been attributed to (a) cross-reacting
antibodies due to other conditions or
infections and (b) the persistence of
antibodies after disease resolution.
Variability in serologic test results for
Lyme disease may also be related to
interlaboratory differences and lack of
interassay standardization. 9,13,14
In contrast to the known HIV
serologic testing using the two-tiered
algorithm to confirm diagnosis, the
Lyme disease test kits are not designed
to screen patients or to establish a
clinical diagnosis.9,12 A positive test
result does not necessarily indicate
current infection with B. burgdorferi,
and a negative result, especially early
in the course of infection, does not
exclude B. burgdorferi infection as
the cause of illness.9–12 Serologic test
results should be used to support a
clinical diagnosis of Lyme disease and
should not be the primary basis for
making diagnostic or treatment
decisions.1,11 Diagnosis should be based
on patient history, which includes
symptoms and exposure to the tick
vector, and physical findings.4,11,15
Health care professionals should be
aware of the limitations of Lyme
disease test kits and are encouraged to
report suspected incidents, including
false-positive and false-negative results,
to Health Canada (www.hc-sc.gc.ca
Rana Filfil, PhD, Health Canada
See full Article here:
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 firstname.lastname@example.org.
Article Link here:
Elizabeth May calls for Lyme disease strategy
Green Party leader says Lyme disease is no longer rare
CBC News Posted: Jul 9, 2012 8:00 AM ET Last Updated: Jul 9, 2012 10:46 AM ET
Federal Green Party Leader Elizabeth May says the federal government needs to develop a national strategy to combat Lyme disease that includes ways to improve prevention and diagnosis of the disease.
The British Columbia MP’s comments come on the heels of several people speaking out about the presence of Lyme disease in the Fredericton area.
May introduced a private member’s bill in June that calls on federal Health Minister Leona Aglukkaq to hold a conference to draft a national plan for dealing with Lyme disease.
May said the disease is becoming more common in Canada and the federal government needs to craft a cohesive strategy to address it.
“The scope of the problem is number one, that more people are getting Lyme disease than the medical community has expected,” May said.
“A lot of doctors still operate under the assumption that this disease is very, very rare — that’s no longer the case. And we also have the problem that it’s hard to diagnose.”
May said the national strategy would help various health districts across the country share their experiences on dealing with the disease.
“We’re looking at putting together a strategy to deal with the need for better awareness, for prevention, the need for better tools for diagnosis and of course, the need for better tools for treatment,” she said.
The state of Maine recently issued warnings for residents there to take precautions because of an increase in ticks carrying Lyme disease.
Lyme disease is caused by the bite of two species of ticks: blacklegged ticks, which are also called deer ticks, and western blacklegged ticks.
The first sign a person who has contracted Lyme disease may have is a circular rash surrounding the spot where the bite happened.
The rash normally appears between three and 30 days after the bite. The rash may be followed by symptoms like fatigue, chills, fever, headache, muscle and joint pain and swollen lymph nodes.
If left untreated, the disease can progress to a second phase, which can last several months. Symptoms in the second phase include migraines, weakness, multiple skin rashes, painful or stiff joints, abnormal heartbeat and extreme fatigue.
FREDERICTON RESIDENTS SPEAK OUT
Another Fredericton-area resident has come forward to talk about Lyme disease being in the area.
Brian McEwing told CBC News he was bitten by an infected tick last fall at the University of New Brunswick’s woodlot.
McEwing said he was wearing a wool sweater and a fleece jacket while geocaching, but a tick still managed to burrow into his arm.
He removed the tick and it tested positive for Lyme disease.
“I did have some anxiety for a while, but I knew I’d caught it early,” said McEwing, whose doctor gave him antibiotics.
“I was comfortable with the treatment I received and, like I say, so far, everything’s fine.”
McEwing said there have been at least four cases among members of the congregation at his church.
Public health officials say they have been no confirmed cases of Lyme disease in the Fredericton area in the past five years.
A Fredericton-area woman said in an interview on Friday that it’s time for the New Brunswick government to take Lyme disease more seriously.
Lorraine Bird, a resident of Charters Settlement, said she spent six years trying to get a proper diagnosis of why she was suffering numbness in her face and constant fatigue.
She said doctors kept telling her she was sick but they didn’t know how to treat her.
“So it’s very complex and it mimics a lot of other diseases and it’s very frustrating for people,” she said.
“We need to have that reviewed. That’s the bottom line. If our testing was more intricate or different, it would certainly help more people.”
Bird eventually had her blood sent to California for testing and a doctor in Maine began treating her with antibiotics.
Page 1 of 3
November 28th, 2012
Dear Nova Scotia MLA/MP:
RE: Lyme Disease in Nova Scotia
Lyme Disease (LD) is an emerging disease in Nova Scotia and Canada that is generating considerable attention from the media, advocacy groups and communities. Given this situation, I felt it important that you had accurate and up-to-date information on LD in Nova Scotia and the provincial response plan.
LD is a bacterial illness that can be transmitted to humans through the bite of a blacklegged tick (deer tick). There are a number of tick species in Nova Scotia, but only the blacklegged tick can carry the bacteria that can cause LD. Not all blacklegged ticks carry the bacteria and the risk of acquiring LD remains low in the province. LD is readily treatable with appropriate antibiotics.
The Department of Health and Wellness (DHW) has an active LD response plan which includes an interdisciplinary committee (public health, veterinary medicine, wildlife biology) that provides evidence-based advice and guidance to the provincial government on the control of LD. Nova Scotia has multiple infectious disease and medical microbiologist experts in the province who deal with treatment and diagnosis of LD. DHW has a close working relationship with these clinical experts through an Infectious Disease Expert Group, which meets regularly to advise DHW on public health and infection control issues. We also work closely with our partners at the Public Health Agency of Canada and the National Microbiology Laboratory who provide evidence based recommendations for the prevention and surveillance of LD and ticks.
Tick and Lyme Disease Surveillance
Lyme disease is a notifiable disease under the National Microbiology Laboratory. Health care professionals are required to report cases of Lyme disease to Public Health when they diagnose clients clinically or with laboratory confirmation. In 2011, there were 54 confirmed cases of LD reported to Public Health, corresponding to an incidence rate of 5.8 cases per 100,000 population. Surveillance of both human cases and blacklegged ticks in the province enables DHW to keep abreast of the current state of Lyme disease in Nova Scotia.
Over the past few years, DHW together with the Department of Natural Resources and the Public Health Agency of Canada have been identifying and testing ticks collected in Nova Scotia. Analysis of this data has identified six areas where blacklegged ticks carrying the bacteria that can cause LD are known to be endemic (i.e. have become established as part of the local ecology). These endemic locations are areas in Yarmouth County, Shelburne County, Lunenburg County, Halifax County, Pictou County and most recently Queens County. These known endemic areas can be found on the Department of Health and Wellness website at http://www.gov.ns.ca/hpp/cdpc/lyme.asp
DHW has had a tick surveillance program in place since 2002, which included both passive (ticks being submitted by the public) and active plans. In the fall of 2011, DHW restructured its tick surveillance program to place an emphasis on active surveillance. Active surveillance involves ‘in the field’ work including small mammal testing and dragging vegetation to collect
Page 2 of 3
ticks. We will continue with focused active surveillance to determine additional areas where ticks may be establishing.
It is expected the number of LD cases will increase over time as ticks become more densely populated and expand their geographical range when conditions permit. Climate change related to global warming is expected to contribute to the increase of LD in Nova Scotia and Canada.
DHW regularly provides consistent, evidence based information about LD and its prevention to the public. Strategies are implemented each year to provide Nova Scotians with information about the prevention of tick bites and to ensure health care providers have the most up to date clinical information. The DHW website is regularly updated plus we work closely with partners to disseminate information regarding LD to the public and stakeholders via various methods (letters via schools, residential letters, media releases, websites, signs in parks/campgrounds). DHW has also provided an advertorial for newspapers as well as news release each year. DHW regularly responds to multiple media requests and letters to government regarding LD.
Nova Scotians and visitors to the province can help prevent exposure to blacklegged ticks and LD by taking some simple precautions. This is especially important when in areas where there may be increased risk. Prevention messages can be found on the DHW website at: http://www.gov.ns.ca/hpp/cdpc/lyme.asp
Information to Clinicians
Webinars have been provided to health care providers in the last few years, addressing prevention, surveillance, diagnosis and treatment of LD. In addition, the DHW provides updates to physicians in the province via Doctors Nova Scotia. The Infectious Disease Expert Group has developed a document entitled “Statement for Managing Lyme Disease in Nova Scotia” which has been widely circulated to physicians in the province. This document is based on current evidence and follows the guidelines endorsed by the Infectious Disease Society of America.
Laboratory testing for LD in Nova Scotia follows the guidelines established by the Public Health Agency of Canada and the Centre for Disease Control and Prevention in the United States. These guidelines have been endorsed by the Canadian Public Health Laboratories Network and the Infectious Diseases Society of America.
We are aware of the Canadian Lyme disease advocacy group, Can Lyme, who claim that the testing and treatment of LD is inadequate. However, the testing methods they promote, and the ones used by many private labs in the US, are not endorsed by infectious disease and laboratory experts.
DHW supports and partners with many researchers in the field of LD and tick surveillance. Research that DHW is aware of and supports includes the Public Health Agency of Canada’s study on identification of emerging endemic areas for the blacklegged tick and prediction of the further spread of LD. Two other research initiatives that DHW supports include the human seroprevalence study on LD and the Deer Treatment Study. We are aware that other
Page 3 of 3
researchers initiate studies within the province with or without consultation or consideration of experts on the interdisciplinary committee.
If you have additional questions regarding LD, or if you would like to involve a regional Medical Officer of Health in any meetings with community or advocacy groups, please contact your local Public Health office which can be found through the following website: http://novascotia.ca/DHW/about/phs-offices.asp
We appreciate your ongoing support and cooperation to help ensure Nova Scotians receive evidence-based information on LD.
Robert Strang MD, MHSc., FRCPC
Chief Medical Officer of Health
c. Dr. Frank Atherton – Deputy Chief Medical Officer of Health, Health and Wellness
Elaine Holmes, Director – Communicable Disease Prevention and Control, Health and Wellness
Regional Medical Officers of Health
Misinformation sent to all Nova Scotia MLA’s and MP’s by Chief Medical Officer of Nova Scotia, Robert Strang.
POSTED ON DECEMBER 12, 2012 BY CANLYME
Here you can read the letter from Dr. Strang, followed below by a copy of our reply that was also sent to all Nova Scotia politicians.
Dr. Strang acted in a manner that is contrary to the principles of open science in that he deliberately did not mention the reams of “peer reviewed”, “evidence based” research papers that prove the Infectious Disease Society of America (IDSA) guidelines are full of misinformation, “Laboratory testing for LD in Nova Scotia follows the guidelines established by the Public Health Agency of Canada and the Centre for Disease Control and Prevention in the United States. These guidelines have been endorsed by the Canadian Public Health Laboratories Network and the Infectious Diseases Society of America”. Endorsement by these lobby groups is not something to brag about.
He failed to acknowledge that Health Canada had published a letter in Canadian Adverse Reaction Newsletter, Volume 22 – Issue 4 – October 2012 showing that the Infectious Disease Society of America societies and their Canadian puppet groups got it wrong, testing produces too many false negative results, the most harmful to the patient just as the Lyme disease advocates and scientists around the world have said for almost 20 years. These Canadian puppets adopted a testing protocol knowing that the United states Center for Disease Control clearly stated it was and is only for surveillance, not accurate enough for human diagnostics, another fact his beloved IDSA simply ignored.
What does this say for the thousands of Canadians who had the puppet endorsed testing over the past 20 years, only to be given false negative results many orders of magnitude more than the few positive tests? How many are permanently disabled now? How many are deceased? How many lost their homes, their families through divorce? What does this say about the cost to taxpayers who support these thousands of people and continue to pay for revolving door medical visits and expensive tests (chronic patients are the largest user gorup of the medical system). No one knows, or do they? The Medical disability insurers save a fortune by accepting only the IDSA guidelines using them to deny patients across Canada. This has been shown in United states Congressional hearings.
One must wonder why Dr. Strang went to such great lengths to misinform every politician in the Province of Nova Scotia. There is little expertise and professionalism in his alleged experts. Clearly his agenda is to enforce dognmatic, behind closed door decisions while refusing to allow victims and their experts into the policy making process. CanLyme has experts in many related fields of expertise on four continents who don’t buy what Dr. Strang is selling.
Some Canadian “evidence based”, “peer reviewed” research papers that have been ignored are;
Widespread dispersal of Borrelia burgdorferi-infected ticks collected from songbirds across Canada.
Evolving Perspectives on Lyme Borreliosis in Canada
Lyme borreliosis in Canada: biological diversity and diagnostic complexity from an entomological perspective
Detection of Lyme disease spirochete, Borrelia burgdorferi sensu lato, including three novel genotypes in ticks …
This is unacceptable behaviour of a non-elected bureaucrat.
This quote is only one problem area with his letter, He stated,
December 11, 2012
Dear Nova Scotia MLA/MP:
RE: Lyme Disease in Nova Scotia
A concerned citizen has brought to the attention of the Canadian Lyme Disease Foundation some serious misinformation being distributed by the Nova Scotia Chief Medical Officer of Health. Dr. Robert Strang sent his letter to all MLAs and MPs in Nova Scotia, and this letter is dated November 28, 2012.
I am a board member of the Canadian Lyme Disease Foundation and would like to respond to this letter. Specifically, Dr. Strang stated that: “We are aware of the Canadian Lyme disease advocacy group, CanLyme, who claim that the testing and treatment of LD is inadequate. However, the testing methods they promote, and the ones used by many private labs in the US, are not endorsed by infectious disease and laboratory experts.“
The Canadian Lyme Disease Foundation (CanLyme) has never promoted specific lab testing methods with the exception of PCR testing of human biopsy and autopsy samples. CanLyme has always maintained that Lyme disease is a clinical diagnosis that may be supported by serology but is not reliant on serological support by the current two-tier testing protocol used in Nova Scotia.
Lyme disease remains a clinical diagnosis since available evidence is too conflicted to codify the diagnosis and treatment of this complex disease. After nearly a decade of hard work by dedicated CanLyme volunteers who provide broader and international perspectives on this disease, Health Canada, in the Adverse Reaction Newsletter 22(4) October 2012 (http://www.hc-sc.gc.ca/dhp-mps/medeff/bulletin/carn-bcei_v22n4-eng.php) admitted that there are serious limitations in the current serological testing algorithm and that both false negative and false positive results mean that Lyme disease remains a clinical diagnosis. Nowhere does Dr. Strang reference this important addition to the debate.
It is also important to note that in February of this year, Dr. Alan Ronald, an infectious diseases specialist at the University of Manitoba was forced to publish a retraction in the Winnipeg Free Press where he made unfounded statements about false positives from healthy people issued by a California lab known for issuing positive Lyme results (http://www.winnipegfreepress.com/opinion/letters_to_the_editor/have-your-say-140534633.html?device=mobile).
However, we are pleased that Dr. Strang has acknowledged that Lyme disease has received a considerable amount of attention from the media. The Canadian Lyme Disease Foundation continues to work in the public sphere and encourages you to maintain awareness of Lyme disease and the responsibility of public health officials to consider the full spectrum of evidence, unhindered by historical biases.
In addition, we emphasize that the current best evidence firmly demonstrates that the genetic diversity and ecological complexity of the causative agent of Lyme disease confounds the diagnostic situation in Canada. This evidence is reviewed in the following peer-reviewed publications, available as open access at:
Sperling and Sperling 2009. The Canadian Entomologist http://canlyme.com/2012/07/21/lyme-borreliosis-in-canada-biological-diversity-and
Sperling et al. 2012. Open Neurology Journal. http://www.benthamscience.com/open/toneuj/articles/V006/SI0078TONEUJ/94TONEUJ.pdf
Transparent and respectful discussions between CanLyme representatives and the Chief Medical Officer of Novas Scotia would be a positive step in a debate that has been hostile towards minority opinions, even when those opinions are based on substantial numbers of peer-reviewed research papers.
Lyme disease research is progressing rapidly and doctors should be alerted to the fact that current serological tests are inadequate. Meanwhile, I appreciate your attention as we set the record straight about the role of CanLyme, and I would be pleased to provide further information or discussion if you would like to follow up.
Board Member, Canadian Lyme Disease Foundation
All credit for this Article goes to Canlyme: