Lyme Disease Halifax

Lyme Disease – Information on Lyme Disease- Life stories of Lyme disease

Browsing Posts in Personal Lyme Stories

http://m.capebretonpost.com/News/Local/2014-04-11/article-3685796/Woman-claims-health-protocols-putting-her-sons-health-at-risk/1

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

Ditto…..

20 comments

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

LYME DISEASE IN QUEBEC – A TICKING TIMEBOMB
May, 2013
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

See Link to website:

http://www.robertgalbraith.com/320/

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/

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

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.


Erin Bidlake is one of about 50 people in the Ottawa area who believe they have chronic Lyme disease.

Read more: http://www.ottawacitizen.com/health/Ottawa+Lyme+disease+sufferers+they+aren+getting+help+they+need/8363913/story.html#ixzz2SuFbrUxn

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.”

© Copyright (c) The Ottawa Citizen

Read more: http://www.ottawacitizen.com/health/Ottawa+Lyme+disease+sufferers+they+aren+getting+help+they+need/8363913/story.html#ixzz2SuETEiCM

Luba’s Lyme Disease Treatment Fundraiser…

Created by Luba Williams on January 16, 2013

About This Page

Hello my name is Luba and I live in Toronto Canada.  I have had Lyme Disease for well over 10 years now, but had been misdiagnosed for almost all of that time. Recently diagnosed I now need to fight to get well, to get treatment and get my life back. I have been homebound for years and the worst of it being the last few.  I was young healthy strong, vibrant before, a hard worker and volunteer.  Canada does not recognize my disease and the doctors who have tried to treat us here have received penalty for doing so therefore they are no more.
My only hope is to try to get to the United States to see  a specialist who knows what they are doing.  I am in late stage chronic neurological lyme.  I am so very ill, I can barely move around our small home from room to room now.  My issues are neurological, muscle weakness, trouble swallowing/talking/walking , severe dizziness and lack of coordination, breathing problems and migraine type headaches and pressure that last weeks or months at a time.  I also have problems with my bladder my bowels and I have severe sensory involvement.  Therefore I have to stay in a dark quiet scent free environment 24 hours a day.  It truly is torture.

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 !

Please go to link to donate:

http://www.gofundme.com/1uu80s#description

Our Nova Scotian girl and her mother both have Lyme disease and need help. If you are in a position to assist in any way it would be enormously appreciated. Please and heartfelt Thank-you’s in advance.

My daughter and I have been diagnosed with Chronic Lyme Disease. She is 12 and has it since she was two and a half. I was just recently diagnosed and have had it for almost 17 years without knowing. We are fighting our government to have this terrible disease reconized, and treated in Canada. I am unable to work now and have no income coming in and treatment is hard. We are surviving on my husbands pension. Anyone wishing to help in this fight against Lyme is welcome to do so. Thank you in advance.

TINY TICK, BIG THREAT: Dutchess leads state in babesiosis, another threat, besides Lyme disease, if you’re bitten by a deer tick

Illness can be passed through blood, but no test screens for it

7:22 PM, Dec 23, 2012

Babesiosis, a tick-borne disease that is growing more common, can be passed through blood transfusion from donors who do not know they are infected. This unit of donated red blood cells was seen at a blood bank in 2008. / Darryl Bautista/Poughkeepsie Journal

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.

Little progress

Though the first transfusion-transmitted babesiosis case was reported in Boston in 1979, little has been done to protect the blood supply except to preclude donors who are known to have had babesiosis, according to interviews and a review of scientific literature. But with only 123 out of 23 million donors reporting having babesiosis from 2005 to 2007, that measure has been “largely ineffective,” said David Leiby, top researcher on the disease for the American Red Cross. A case in point is the six New York transfusion cases, involving two donors — from Suffolk and Westchester counties — who had not been sick with an infection that may not emerge for years, if at all. Just why tainted blood is slipping through the system relates to the high cost of developing a test that will have limited use and, therefore, limited earning potential for test manufacturers, scientists say. The test would be used primarily in just seven states — five in the Northeast and two in the upper Midwest — where the disease is considered native, or endemic. That’s a new challenge for a blood supply that operates on a national level, testing all blood for HIV, hepatitis B and C and West Nile virus. “The return on investment is not sufficient,” said Michael Busch, director of Blood Systems Research Institute, a San Francisco-based blood-safety research center. “That’s kind of created a lack of willingness.” Though at least three possible tests are in various stages of development, there was no indication when one might wend its way through the U.S. Food and Drug Administration licensing process, and the FDA said it could not comment on any trials. In the meantime, blood-supply officials sought to reassure the public on blood-supply reliability.
See full Story:

ABOUT THIS SERIES

This is part 7 in a Poughkeepsie Journal series on the prevalence and problems of Lyme disease, the nation’s most common vector-borne disease. Go to www.pough- keepsiej- ournal.com/ lyme to read previous installments, view videos and read reports on Lyme disease and babesiosis.

Seffernsville resident goes undiagnosed for two years

by Paula Levy

After two years of being ill, Shaelene Robar, Seffernsville, has been diagnosed with Lyme disease. The 15 year old's mother, Gail, has been advocating on her daughter's behalf.

It took two years for 15-year-old Shaelene Robar of Seffernsville to get a diagnosis and begin treatment for Lyme disease. The girl’s mother, Gail Robar, would not give up advocating for her daughter until she received answers and treatment.

 In December of 2008, Shaelene suddenly became ill. She and her family thought her illness was simply the flu. But the body aches and fever continued long after a normal flu illness would have cleared.

 ”The doctor kept saying that she would just be better, that it was a virus and it would just go away,” said Gail.

 But the symptoms would not go away and Shaelene began to become more and more ill. Over the coming months her fatigue, nausea, dizziness and now stomach pain intensified. Her mother took her to see doctors and specialists but no one could pinpoint the cause of Shaelene’s illness.

 Gail said during that time Shaelene was misdiagnosed with multiple sclerosis, chronic fatigue syndrome, Crohn’s disease, figbromyalagia and a mental illness. No treatments for these diseases helped and over the course of nearly two years, Shaelene kept getting sicker and sicker. She was also once thought to have anorexia because the teenager had lost over 30 pounds.

Shaelene said she had to drop out of school in Grade 8 because she was unable to cope with the extreme fatigue, dizziness and pain. This year she is supposed to be attending Grade 10 but she was only able to go to school for five days at the beginning of the year.

 ”I’m nauseous and I’m too weak to even move half the time,” said Shaelene.

 Gail said she realized that Shaelene had been bitten by ticks the summer before she became mysteriously ill. Her mother noted since the Robars do not live in an area that has the type of ticks – deer or blacklegged ticks – which are known to carry Lyme disease, at first Lyme didn’t seem possible. Gail said the ticks in their area are dog ticks, but now she is convinced that they too can transmit the bacterium that causes Lyme disease.

 The Public Health Agency of Canada maintains that blacklegged ticks are the only carriers that can transmit the bacterium that causes Lyme disease.

 Research scientist Dr. Robbin Lindsay said in Canada, the blacklegged tick and the western blacklegged tick are the types of ticks known to transmit Lyme disease to humans.

 ”While there have been several scientific research studies demonstrating that on rare occasions other types of ticks including the dog tick and insects like mosquitoes, fleas and certain biting flies can be infected with the bacterium that causes Lyme disease, they are not infectious and cannot transmit the bacteria to humans,” said Dr. Lindsay.

 Despite not having the well-known carriers of Lyme disease in her backyard, Shaelene was clearly ill. And Gail maintained that her daughter had contracted the disease. Her physician screened the young woman for Lyme disease. But that test proved negative. Lyme disease tests are first screened in Nova Scotia. Only those who screen positive are sent for further testing to the national lab in Winnipeg. Gail said the screening test is not reliable.

 ”The test is not reliable whatsoever. Those people that don’t test positive are out of luck,” she said.

The unreliability of the test is also maintained by Jim Wilson, president of the Canadian Lyme Disease Foundation.

 ”The present testing methods used were shown to be faulty,” said Mr. Wilson, quoting a January 2011 study. “It has been misdiagnosed as everything from multiple sclerosis, to chronic fatigue, Parkinsonism, irritable bowel syndrome, various forms of arthritis, psychiatric issues, heart conditions, and on and on. Canada just happens to have the highest rates in the world of these diagnoses but very little Lyme.” The foundation believes that Public Health is underestimating the burden of Lyme disease in Canada.

 Still convinced that Lyme disease was the culprit for her daughter’s illness, Gail continued to advocate on her daughter’s behalf. She took Shaelene to Port Hawkesbury to see a family physician who is known to treat patients suspected of having Lyme disease. He was contacted but did not return calls. However, through this physician, Gail paid $500 to have her daughter’s blood work sent to American laboratory IGene-X Inc.

 That test came back positive. But even though Shaelene has a positive diagnosis, it is not accepted in Canada because the laboratory is not a government-run lab.

 Gail said now that Shaelene finally has a diagnosis after two years, she is currently being treated with antibiotics by the physician in Port Hawkesbury. Shaelene said this course of antibiotics began in December and she has some improvement.

 ”I’ve been able to eat a lot more,” said Shaelene. But the teenager is still weak. Her mother expects it will take some time before Shaelene is able to return to a normal life.

 The Public Health Agency’s website states there are several antibiotics which can treat the illness but the sooner treatment starts, the better. In addition, it states that people with certain neurological or cardiac problems may require intravenous treatment and patients diagnosed in the later stages of the disease can have persistent or recurrent symptoms requiring a longer course of antibiotic treatment

The symptoms of Lyme disease usually happen in three stages. The first sign of infection is usually a circular rash which occurs in about 70 to 80 per cent of infected people. It begins at the site of the tick bite after a delay of three days to one month.

 Other common symptoms include

 * fatigue

 * chills

 * fever

 * headache

 * muscle and joint pain

 * swollen lymph nodes

 If untreated, the second stage of the disease can last up to several months and include

 * central and peripheral nervous system disorders

 * multiple skin rashes

 * arthritis and arthritic symptoms

 * heart palpitations

 * extreme fatigue and general weakness

If the disease remains untreated, the third stage can last months to years with symptoms that can include recurring arthritis and neurological problems.

 -The Public Health Agency of Canada

 

posted on 03/15/11

1 comment

“Courage and cheerfulness will not only carry you over the rough places in life, but will enable you to bring comfort and help to the weak-hearted and will console you in the sad hours”

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

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 come up with a national strategy to deal with Lyme disease. (Sean Kilpatrick/Canadian Press)

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.

Article link here:
http://www.cbc.ca/news/technology/story/2012/07/09/nb-elizabeth-may-lyme-disease-731.html

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.
Sincerely,
Janet Sperling
Board Member, Canadian Lyme Disease Foundation

All credit for this Article goes to Canlyme:

http://canlyme.com/2012/12/12/misinformation-sent-to-all-nova-scotia-mlas-and-mps-by-chief-medical-officer-of-nova-scotia-robert-strang/

“Lyme disease is clearly a very complex disease. When considering a similar spirochete disease, syphilis, it has been said, “To know syphilis is to know medicine.” However, to know Lyme disease is not only to know medicine but also neurology, psychiatry, politics, economics, and law. The complexity of this disease and all that surrounds it challenges our scientific as well as our ethical capabilities”.
(Robert Bransfield, M.D.)

http://www.edmontonjournal.com/opinion/letters/Lyme+disease+songbirds/6944942/story.html

EDMONTON JOURNAL JULY 17, 2012 Re: “Lyme-carrying ticks here, researcher says,” the Journal, July 11.

The presence of the blacklegged tick in Alberta is not a new revelation.

Many years ago, our research team documented the first record of this tick species on a Swainson’s Thrush in Alberta, collected on May 19, 1998. In fact, we have reported blacklegged ticks collected from birds in Alberta in two peer-reviewed scientific journals, in 2001 and 2005 respectively.

In the Journal article on his research, Daniel Fitzgerald at the University of Alberta said it was possible that climate change is a factor for blacklegged ticks in Alberta. But there is no mention that migratory songbirds play an integral role in wide dispersal of bird-feeding ticks.

Weather data for Edmonton listing the mean daily temperatures during the past 50 years show climate change has nil or no effect on blacklegged tick survival in Alberta.

The provincial government and the medical profession have been oblivious to what is happening in nature while songbirds introduce Lyme disease vector ticks into Alberta each year.

John D. Scott, research scientist, Lyme Disease Association of Ontario, Fergus, Ont.

“Tormented” by Lyme Disease
By Luke Hendry
The Intelligencer
Friday, June 1, 2012 8:31:33 EDT PM

“It has completely changed my life and I live with it every day,” Cox, 68, said from her home north of Bancroft.

She was diagnosed in 1990 but believes the infection came from a suspected tick bite in the fall of 1989.

Cox said she was working in a swampy area behind the family home when she felt something on the back of her neck, so she “smucked” it.

“When I took my hand away my hand was completely smeared with blood, more than normal” from swatting a bug, she said.

“I wiped it on my pants and I said, ‘That guy had a good feed.’”

Cox said she never saw what bit her and thought little of it until later that fall, when she was struck by extreme fatigue. It continued that winter, along with flu-like aches and other symptoms.

Next came skin irritation and numb fingers and toes.

By the spring of 1990 blood tests had revealed an unknown infection. Cox was diagnosed with Lyme soon afterward.

She said she “felt great” and thought she was cured after being treated with antibiotics, “but then within a month the symptoms were coming back.”

See story here:

http://www.intelligencer.ca/2012/06/01/tormented-by-lyme-disease

Helke Ferrie
Lyme Disease Goes Under The Microscope
Public Demands Better Testing and Treatment for World’s Fastest Proliferating Disease by Helke Ferrie

LYME PATIENTS KARIN KLOUMAN AND HER HUSBAND. PHOTO COURTESY LYME ACTION GROUP

The ancient Romans, not known for their user-friendly policies, did know when to listen to the “vox populi”; even emperors felt the heat when a lot of people made a noise about the same issue. Rome at its height held about a million people. So, what does it take to get the McGuinty government to face facts about one of the worst infectious diseases in the world? How about 3.5 million Ontarians?

MPP Bob Bailey (Conservative, Sarnia-Lambton) presented a petition on November 23, 2011, requesting that Ontario’s antiquated Lyme disease testing protocol (developed almost 50 years ago and documented to be up to 95% false negative) be replaced by internationally recognized, scientifically validated, reliable, new, FDA-approved tests. This petition also asked that the government direct Ontario doctors to learn to treat the most devastating form, Chronic Lyme Disease, in accordance with up-to-date diagnostic and treatment protocols. The petition emphasizes that this tick-borne illness mimics – and may contribute to –catastrophic diseases like Multiple Sclerosis, Alzheimer’s, arthritic diabetes, Chronic Fatigue and Fibromyalgia, and that these facts were published since the mid-1990’s, and also appear in the Canadian Medical Association Journal (CMAJ). About one hundred Ontario municipalities formally endorsed this petition: that’s 3.5 million Ontarians.

The response from our Minister of Health, the Hon. Deb Matthews, was posted March 19th on the government website. It announced: “This government is committed to protecting the safety of all Ontarians and their families from preventable vector-borne diseases,” and it lists what the government has done since 2010. (Incidentally, in 2010 the book Ending Denial – The Lyme Disease Epidemic: A Canadian Public Health Disaster appeared and was distributed to all federal and provincial politicians, Canada’s medical associations, and our universities.)

On the website, the Minister describes governmental awareness campaigns such as “Let’s Target Lyme,” an information effort for the public and health care providers on tick recognition, symptoms, and protection measures (http://www.ontario.ca/lyme). Matthews wants the millions of petitioners to know that Public Health Ontario is doing everything possible in synch with the federal government. Finally, the Minister’s statement includes what she sees as a confidence-inspiring statistic: over the past three years “the number of cases of Lyme disease has remained fairly stable at approximately 100 per year.” We are to believe that this is due to increased testing and surveillance. (Oddly, right across the border, Lyme cases are increasing exponentially, as new annual infection cases are being documented in the tens of thousands in most Eastern seaboard states; the same is true for Europe.)

In my view, the Minister’s response is appalling: – it does not address the irrefutable, documented, facts outlined in the petition; – it bypasses the core problem of Chronic Lyme disease; – it ignores the key demand for current, scientifically validated and reliable testing which is not available in Ontario, forcing those who can afford it to go to the U.S.; – it simply reaffirms that all is well with that bogus two-tiered ELISA-plus Western-blot test which MPP Bailey’s petition proposes to eliminate in favour of more accurate testing.

How can a government defend a test that is known to be 95% false negative? Even if it is supported by federal guidelines? Truly, Health Canada knows no evil, Public Health hears no evil, and the Ministry of Health speaks no evil.

Healthcare delivery is a provincial responsibility – so, the Lyme bug stops here. This inappropriate testing only serves the appearance of government diligence in the midst of the world’s fastest proliferating infectious disease – faster than tuberculosis and malaria (WHO 2008).

Those 100 cases cited by Matthews must have been identified by that antiquated ELISA testing protocol which unfortunately only recognizes foreign (outside North America) strains of Lyme bacteria; that means they fell into that potential 5% correctly detected group. Actually, given the soaring increase in all those chronic diseases listed in MPP Bailey’s petition, there likely are 95% more undetected Lyme infections happening annually which go untreated and, as the possibility of a treatable infection is simply not part of a differential diagnosis, these patients go on to become the victims of those other catastrophic diseases – the causes of which include Lyme (in theory, that would be at least another 1,700 cases annually).

What is really terrifying is the fact that Lyme is transmissible through the placenta as well as through sexual contact. The first documented case of sexually transmitted Lyme involved former U.S. President George W. Bush, Jr., who transmitted it to the former First Lady. So, despite the huge advances medicine has made in infectious disease prevention, detection, and treatment, here we go back to the 19th century when syphilis was the equivalent of our current Lyme disease epidemic.

The April issue of the Journal of Parasitology reported that “millions of Lyme disease vector ticks are dispersed annually by songbirds across Canada.” According to the report, samples taken from 42 bird species identified Lyme-infected ticks throughout Canada, all the way to the Yukon, causing Canadians to be exposed to this infection “locally without any history of travel” into endemic areas. More than 50 strains of the Lyme-causing Borellia burgdorferi are known to be strictly North American variants, but “Canadian testing laboratories have not yet considered geographic and genome sequence variation,” resulting in “clinicians [being] unaware of the genetic heterogeneity” of these bacteria; thus an accurate diagnosis is impossible.

In December 2010, the Journal of Clinical Microbiology published a severe critique of the testing protocol used by infectious disease specialists at Sick Children’s Hospital in Toronto; this study was funded and co-authored by the Public Health Agency of Canada. In it, the authors discuss the case of a Lyme-infected child whose Canadian test was negative, but the Lyme-specific treatment was undertaken anyway on the basis of symptoms and history and continued regardless of the test result, which saved the child’s life.

My Personal Experience with Lyme In 2010, when I co-authored and published Ending Denial for the Lyme Action Group and the national CanLyme organization, I never dreamed that I myself would become infected with Lyme in 2011 – as did my husband, and two of my granddaughters, and that I would also nurse a Chronic Lyme patient through her pregnancy. Nine months were spent worrying about the high probability of a brain-damaged baby being born, because Lyme spirochetes attack the developing fetal brain.

Astonishingly, the mother obtained three (!) blood tests showing the presence of Lyme over the course of three months in the first trimester, all by that outdated ELISA blood test. Since it only recognizes foreign strains, it appears she had been infected outside Canada.

The Canadian ELISA testing protocol cannot pick up infections contracted within Canada through those species’ variants that are endemic to North America. Our continental variants of Borrelia burgdorferi can be delivered through migratory birds, deer ticks, cats, dogs, moose, mosquitoes, male sperm, placental blood, human tears, and breast milk. Yet, the infectious disease specialist who saw our pregnant patient simply announced that she could not possibly have Lyme, even though the Ontario test results were in his hands. A fair guess would be that he did not know what to do about Lyme.

Any reader will wonder why only testing for foreign bugs qualifies under OHIP. This is because in Canada the two most definitive antibody responses, named bands 31 and 34 which confirm the presence of Borrelia spirochetes, are omitted from the ELISA testing protocol. Our pregnant patient had positive blood test results because she was infected with an Asian variant of Borrelia burgdorferi that the Ontario test does recognize.

In Ontario, a self-satisfied blind government appears to lead a medical profession kept blind too, with a testing protocol that ensures everybody stays purposefully ignorant because that test too is almost totally blind, occasionally able to recognize a few cases and thereby lull us all into a false sense of public health security. How are doctors supposed to know how to recognize Lyme disease when our testing protocol prevents recognition so perfectly? When they do see it, they are unprepared to treat it. All that sophisticated medical research published in the most prestigious international journals is kept out of medical practice by a government policy that ensures complex new scientific discoveries about Lyme do not confuse medical minds with the true facts about this messy disease. A friend of mine summarized current government policy beautifully: “All we need to knock off the human race is a Lyme tick to wreck our immune systems and a cell phone to fry our brains.” (See my April feature in Vitality.)

Fortunately, our family got help fast – through an ILADS-trained physician. As a result, our pregnant friend was treated with daily antibiotic shots during the crucial months of pregnancy when Lyme-mediated potential kidney failure in the mother needed constant monitoring with various antibiotics. During the first six months, ultrasound tests showed that the fetus was abnormally small, but as soon as the appropriate antibiotic protocol commenced, the baby grew fast to a normal size.

Finally, as the result of a homeopathic protocol created by a Lyme-literate homeopath, midwife, and professor of obstetrics, a rare and wonderful outcome was achieved: a baby grown in a Chronic Lyme patient’s body, but born Lyme-free, weighing 7 pounds, 9 ounces. The mother is in equally good health, and blood testing at six weeks post-partum showed negative for Lyme Disease. This success happened despite Ontario’s insupportable policy which misguides Ontario’s infectious disease doctors. All the thanks go to the research of Dr. Charles Ray Jones, an expert on Lyme in pregnancy who presented last October at the annual international ILADS conference, held in Toronto for the first time. And yes, the rest of us are also on the mend, through the use of naturopathy and antibiotics.

Who benefits from this insupportable government policy? Jim Wilson, founder and director of the national patient support group, CanLyme, agrees with Pamela Weintraub, the author of the famous book Cure Unknown; Jim writes that the consistent downplaying of the severity of Lyme disease only “benefits the global medical insurers, who underwrite all of our employee disability coverage and who do not want to incur the cost of this global pandemic, and the workers’ compensation boards across Canada. The pharmaceutical industry benefits greatly by inventing a new drug to treat each of the many symptoms of Lyme Disease, making billions of dollars globally while doing no research to treat the cause of the disease or to find better diagnostic tools.”

Public Activism and Scientific Research Leads to New Developments Under the leadership of Jim Wilson, the Lyme-afflicted residents of B.C. have worked for more than two decades now to get the attention of their provincial government. “Naturopaths in British Columbia,” Jim writes, “who have passed the pharmacology exams have been allowed to prescribe and several have stepped up to the plate by diagnosing and treating patients who require antibiotics. We are hoping the situation is about to improve again in B.C. In 2010, the B.C. government, in response to pressure exerted by the Canadian Lyme Disease Foundation and patients across the province, announced the opening of a Complex Chronic Disease Clinic. The clinic will focus on chronic Lyme Disease, Chronic Fatigue Syndrome, Fibromyalgia, and Lupus. Board members from CanLyme and representatives from the other disorder groups have played a limited but hopeful role in the set-up of the clinic… Interviews for the medical director position for this new B.C. clinic, housed at the B.C. Children and Women’s Hospital in Vancouver, were completed at the end of March, 2012. The clinic is to be operational by May 1st, 2012.”

Terrible as Lyme disease is, it is also true that some of the finest medical minds have figured out its deep and complex puzzles so that many treatment protocols have been developed, some of which do not require antibiotics. Most interesting is the work of Dr. Dietrich Klinghardt, who has treated Lyme for decades and discovered that recovery by any treatment protocol requires that the patient be fully protected from EMF radiation. In the presence of cell phone radiation, for example, Lyme bacteria and their co-infections thrive and are able to evade therapeutic interventions. His Lyme patients must switch off their main electrical breakers at night, and avoid all forms of wireless technology while undergoing treatment. There is a wealth of information out there about healing from Lyme. (More information on the Klinghardt protocol can be found in the book Ending Denial.)

But the microbial arms’ race is far from over: we have recently learned from a Yale University researcher, Dr. Durland Fish, that there exists yet another variant of the Lyme-causing bacterium, called Borrelia miyamotoi, also found in deer ticks. Initially it causes much higher fevers than the traditional Lyme bacteria. In the U.S., the National Institutes of Health refused funding for its study repeatedly, until forced into action by Russian scientists who proved its existence, and then proved that it causes Lyme disease.

What will it take before Ontario gets real on this issue? One ray of hope comes from MPP Bailey and his colleague MPP Kim Craitor (Liberal, Niagara Falls) whose admirable response to this Ministerial stonewalling is to introduce a Private Member’s Bill in the Ontario legislature soon. This Bill is intended to make Lyme disease a political issue requiring a proper response – from every MPP representing those 3.5 million Ontarians whose petition was fluffed off.

Because Lyme disease affects more people than cancer, and left untreated could cost the healthcare system even more than cancer, this is a fiscal issue of the first order. Those of you who worked to get MPP Monte Kwinter’s Health Freedom Bill passed into law in 2000 know that health freedom is only health-promoting and freedom-protective to the extent that we refuse to tolerate policies that haven’t a leg to stand on and are a disgrace to public health. May is international Lyme Disease Month. Is it not high time that Ontario joins the rest of the world?

References • H. Ferrie, ed. Ending Denial – The Lyme Disease Epidemic: A Canadian Public Health Disaster, KOS Publishing 2010. This book covers the politics, history, science, and proven therapies for Lyme disease in the context of the Canadian situation. All proceeds go to Lyme Action Group: $20 plus shipping and tax, call 519-927-1049 • For reliable testing and treatments contact http://www.ILADS.org • In Canada visit the national group http://www.CanLyme.com • in Ontario http://lymeactiongroup.blogspot.ca • To support the private member’s bill contact MPP Bob Bailey at bob.baileyco@pc.ola.org and MPP Kim Craitor, Kim@KimCraitor.com

See link:

http://vitalitymagazine.com/article/lyme-disease-goes-under-the-microscope/

California Lyme Disease Association's photo.

Article Citation: John D. Scott, John F. Anderson, and Lance A. Durden (2012) Widespread Dispersal of Borrelia burgdorferi–Infected Ticks Collected from Songbirds Across Canada. Journal of Parasitology: February 2012, Vol. 98, No. 1, pp. 49-59.

doi: http://dx.doi.org/10.1645/GE-2874.1

ECTOPARASITOLOGY

Widespread Dispersal of Borrelia burgdorferi–Infected Ticks Collected from Songbirds Across Canada

John D. Scott, John F. Anderson*, and Lance A. Durden†

Research Division, Lyme Disease Association of Ontario, 365 St. David St. South, Fergus, Ontario, Canada N1M 2L7. e-mail: jkscott@bserv.com

ABSTRACT:

Millions of Lyme disease vector ticks are dispersed annually by songbirds across Canada, but often overlooked as the source of infection. For clarity on vector distribution, we sampled 481 ticks (12 species and 3 undetermined ticks) from 211 songbirds (42 species/subspecies) nationwide. Using PCR, 52 (29.5%) of 176 Ixodes ticks tested were positive for the Lyme disease spirochete, Borrelia burgdorferi s.l. Immature blacklegged ticks, Ixodes scapularis, collected from infested songbirds had a B. burgdorferi infection prevalence of 36% (larvae, 48%; nymphs, 31%). Notably, Ixodes affinis is reported in Canada for the first time and, similarly, Ixodes auritulus for the initial time in the Yukon. Firsts for bird-parasitizing ticks include I. scapularis in Quebec and Saskatchewan. We provide the first records of 3 tick species cofeeding on passerines (song sparrow, Swainson’s thrush). New host records reveal I. scapularis on the blackpoll warbler and Nashville warbler. We furnish the following first Canadian reports of B. burgdorferi–positive ticks: I. scapularis on chipping sparrow, house wren, indigo bunting; I. auritulus on Bewick’s wren; and I. spinipalpis on a Bewick’s wren and song sparrow. First records of B. burgdorferi–infected ticks on songbirds include the following: the rabbit-associated tick, Ixodes dentatus, in western Canada; I. scapularis in Quebec, Saskatchewan, northern New Brunswick, northern Ontario; and Ixodes spinipalpis (collected in British Columbia). The presence of B. burgdorferi in Ixodes larvae suggests reservoir competency in 9 passerines (Bewick’s wren, common yellowthroat, dark-eyed junco, Oregon junco, red-winged blackbird, song sparrow, Swainson’s thrush, swamp sparrow, and white-throated sparrow). We report transstadial transmission (larva to nymph) of B. burgdorferi in I. auritulus. Data suggest a possible 4-tick, i.e., I. angustus, I. auritulus, I. pacificus, and I. spinipalpis, enzootic cycle of B. burgdorferi on Vancouver Island, British Columbia. Our results suggest that songbirds infested with B. burgdorferi–infected ticks have the potential to start new tick populations endemic for Lyme disease. Because songbirds disperse B. burgdorferi–infected ticks outside their anticipated range, health-care providers are advised that people can contract Lyme disease locally without any history of travel.

Received: May 26, 2011; Revised: August 16, 2011; Accepted: August 24, 2011

* Connecticut Agricultural Experimental Station, 123 Huntington St., New Haven, Connecticut 06511.

† Department of Biology, Georgia Southern University, 69 Georgia Ave., Statesboro, Georgia 30460-8402.

See link:

http://www.journalofparasitology.org/doi/abs/10.1645/GE-2874.1?journalCode=para