NEW GLASGOW – Pictou County’s three MLAs and several county councilors got educated about Lyme disease from those suffering from the disease. They also received a long list of items the delegation wants instituted into Nova Scotia’s detection and treatment of the disease during a meeting on Monday at Justice Minister Ross Landry’s Pictou Centre constituency office. “We did our best,” delegation member Alice Lees said. “There are strong intentions and they’ve information that will be helpful.” Besides Landry, Energy and Natural Resources Minister Charlie Parker and Pictou East MLA Clarrie MacKinnon, municipal councilors in attendance included Deputy Warden Andy Thompson, Sally Fraser, Debi Wadden and Jamie Davidson. “We know Lyme disease is a serious and real problem,” Landry said. “The big thing is getting the medical and health communities and the public educated. We met to help assure that various departments are aware of this.” The delegation members want the Medical Act of Nova Scotia updated to ensure those with Lyme disease receive the same guarantee former Health Minister Maureen MacDonald asserted “that all Nova Scotians receive the best possible care from highly qualified and trained doctors.”
Premier Appoints Ministerial Assistants
June 29, 2009 1:39 PM
Premier Darrell Dexter announced today, June 29, that eight MLAs have been appointed ministerial assistants.
“I have a talented team that will work hard to make sure we keep the commitments we’ve made,” said Mr. Dexter. “My goal is to make life better for today’s families and our ministerial assistants will play an important role in helping make that happen.”
Ministerial assistants will represent ministers and government to build relationships with important stakeholders, and oversee policy and program development that helps government keep commitments.
The following Members of the Legislative Assembly have been appointed ministerial assistants:
– Jim Boudreau Department of Fisheries and Aquaculture
– Gary Burrill, House Leader
– Vicki Conrad, Transportation and Infrastructure Renewal
– Howard Epstein, Department of Community Services, specifically co-operative housing and other housing programs
– Leonard Preyra, Office of Immigration
– Gary Ramey, Department of Health
– Brian Skabar, Office of Aboriginal Affairs
– Lenore Zann, Tourism, Culture, and Heritage
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
See Link to website:
Updated: May 30, 2013 1:51 PM ADT
CHARLESTON, SC (WCBD) -
An extremely unusual and significant interception was made recently by U.S. Customs and Border Protection (CBP).
It all started when a shipment of work gloves from Pakistan was held for agriculture inspection due to previous Khapra Beetle infestations.
This time, however, examination of the shipment determined that it was actually free from beetles. Upon further inspection, though, a CBP agriculture specialist saw something on the exterior of the shipping carton. The adult tick, approximately one quarter inch in size, was collected for identification.
A few days later, after traveling to the U.S. Department of Agriculture (USDA) National Veterinary Services Laboratory (NVSL) in Ames, Iowa, the specimen was identified as Argas species (Argasidae).
According to the NVSL entomologist, “This species of tick is a bird parasite that occurs widely in Africa, southern Europe, the Middle East and across south-central Asia. Pigeons are the primary hosts for this tick, but it also feeds on domestic fowl and a limited variety of wild birds. Information about the disease relationships of this genus are limited, however, West Nile Virus has been found in this tick, and it may be an overwintering vector of that virus in the Middle East. Soft ticks, especially Argas spp., only rarely are imported in commerce, and we even more rarely see them for identification……. .”
See full story here:
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.”
See full story:
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.”
….but meanwhile back in Ca na da… the Infectious disease doc’s still say it’s the “Gold Standard”..and we all follow CDC !!!!
The groundbreaking law requires patients to be notified that a negative Lyme test doesn’t necessarily mean they don’t have Lyme disease.
Virginia Governor Bob McDonnell today signed into a law the Lyme Disease Testing Information Disclosure Act. Under the new legislation, patients being tested for Lyme disease must be officially informed that a negative test result does not mean they don’t have Lyme disease.
, sponsored by Delegate Barbara Comstock and others, requires the following notification to be given to anyone being tested for Lyme disease.
“ACCORDING TO THE CENTERS FOR DISEASE CONTROL AND PREVENTION, AS OF 2011 LYME DISEASE IS THE SIXTH FASTEST GROWING DISEASE IN THE UNITED STATES.
YOUR HEALTH CARE PROVIDER HAS ORDERED A LABORATORY TEST FOR THE PRESENCE OF LYME DISEASE FOR YOU. CURRENT LABORATORY TESTING FOR LYME DISEASE CAN BE PROBLEMATIC AND STANDARD LABORATORY TESTS OFTEN RESULT IN FALSE NEGATIVE AND FALSE POSITIVE RESULTS, AND IF DONE TOO EARLY, YOU MAY NOT HAVE PRODUCED ENOUGH ANTIBODIES TO BE CONSIDERED POSITIVE BECAUSE YOUR IMMUNE RESPONSE REQUIRES TIME TO DEVELOP ANTIBODIES. IF YOU ARE TESTED FOR LYME DISEASE, AND THE RESULTS ARE NEGATIVE, THIS DOES NOT NECESSARILY MEAN YOU DO NOT HAVE LYME DISEASE. IF YOU CONTINUE TO EXPERIENCE SYMPTOMS, YOU SHOULD CONTACT YOUR HEALTH CARE PROVIDER AND INQUIRE ABOUT THE APPROPRIATENESS OF RETESTING OR ADDITIONAL TREATMENT.”
Comstock worked with members of the National Capital Lyme and Tick-Borne Disease Association to garner support for the measure. On one occasion, more than 100 supporters—many of them Lyme patients who had initially tested negative for disease—filled a hearing room in the House of Delegates. On the day of the final House vote, several legislators themselves spoke movingly of a personal connection to Lyme disease. Especially poignant were remarks from Delegate James Edmunds, who said that he believes his father died from undiagnosed Lyme disease, after a negative Lyme test.
Comstock said inaccurate test results often lead to Lyme patients going undiagnosed and untreated for months or even years. “I’m pleased that we were able to pass this bill which focuses on getting information about testing problems directly to patients so they can seek additional testing, if necessary, as well as appropriate treatment.”
The Medical Society of Virginia, which opposed the bill, had been lobbying for Governor McDonnell to veto the measure, saying that it interfered with the physician-patient relationship.
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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Born In: East Ferry, Nova Scotia, Canada
Born: May 19th, 1918
Passed in: Digby, Nova Scotia, Canada
Passed on: April 21st, 2011
Lovitt Clyde Theriault – Our long sad goodbye to Lovitt Theriault concluded April 21, 2011, at Tideview Terrace, Digby, where he has resided for over two years, his ‘home away from home’. Lovitt was born in East Ferry on May 19, 1918, thus his life ended just one month before his 93rd birthday. His entire adult life was spent in Tiddville with his one and only love, Mary (Stanton), who pre-deceased him in 2006. He is survived by his three daughters, Sheila Theriault, Janet (Bruce) Coles, and Elizabeth (Gary) Morrison. His four grandchildren were a blessing to him and a source of pleasure. He taught them many things. Dr. Chad (Jodi) Coles, Shari (Heath) Foley, Jeremiah (Sherri Diacon) Morrison and Jessica Morrison and Cara Brendzy will always remember him fondly. Great-grandchildren Chloe Coles, Madison Foley, Rylan Morrison and Olivia Brendzy were reasons for Lovitt to smile in his declining years. Lovitt is survived by his closest friend and brother, Clark (Thelma), and sisters, Rosalind, Lillian and Marilyn. Lovitt’s parents, Herman and Jessie (Lewis), passed away in the 1950s. Lovitt was predeceased by his sisters, Lennie, Evelyn, Dorothy, Freda and Gwendolyn (in infancy); and brothers, Franklin and Lloyd. So many adjectives come to mind to describe this special ‘gentle’ man. He led by his shining example of strength of character, selfless, devoted to his church and community, generous, intelligent, and definitely a forward thinker, always planning his next project. We’ll never forget his sense of humour. One of his best abilities was his capacity to love. Lots of people miss that point in life. “You have to give love in order to get love in return,” so Dad has many friends. They will miss him and remember him as having made this world a better place. Lovitt’s Tideview family was special to him and he felt loved there, even though he didn’t have the words to express his feelings. Heartfelt thanks to all of those who cared for him. Funeral service took place Monday, April 25, 2011 and interment was at East Ferry Cemetery. In memory of Lovitt, donations to CanLyme.org would be appreciated by the family to further research in Lyme disease, or to a charity of choice.
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.”
Dr. Mike Dryden, TickEncounter’s tick guy in Kansas sent along their first report of ticks for 2013. A senior veterinary student took two adult A. americanum off a horse yesterday. One was engorged. Even with the mild winter in Kansas, seeing Lone Stars in January is very unusual. Thanks for the update, Mike.
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
By Ed Stannard, New Haven Register
Posted: 01/16/2013 05:55:57 PM EST
NEW HAVEN, Conn. — A new tick-borne infection, similar to Lyme disease, has been found in humans in the Northeast region for the first time, according to researchers at the Yale schools of Public Health and Medicine.And while its unfamiliarity may result in some misdiagnosis — the disease, carried by deer ticks, has yet to be given a name — the good news is that the same treatment used for Lyme disease will cure this infection as well.
The report, whose primary author is Dr. Peter Krause, senior research scientist at the School of Public Health, is published in the Jan. 17 issue of the New England Journal of Medicine.
So far 18 patients in southern New England and New York state have been found to have the infection, caused by a bacterium, Borrelia miyamotoi, according to a release. It was first found in ticks in 1995 in Japan, then in deer ticks in Connecticut in 2001, Krause said.
“The first time it was discovered in humans was 2011,” when 46 cases of this disease were reported in central Russia, he said.
The discovery is unusual because usually new tick-borne diseases are found when people get sick and then are traced to the insect.
“This is the first time we have found an infectious organism carried by ticks before we have recognized the disease in humans,” said Durland Fish, professor of epidemiology at the School of Public Health and the study s senior author, in the release. “We usually discover new diseases during an epidemic and then try to figure out what is causing it.”
While the number of cases so far is small, Krause said there are 30,000 reported cases of Lyme disease in this country each year, and that infection is probably seven times as common as the new disease, which would make more than 4,000 cases. But scientists believe the actual number of Lyme disease infections each year is 10 times as high as the reported number.
Symptoms are similar to Lyme – fever, headache, muscle ache and fatigue – but 10 percent of the Russian patients also had relapses of their fever.
“They had fever; it was there a few days … anywhere between a week and a month later they came down with fever again,” Krause said.
Some people have had as many as 10 relapses over the course of a year.
The Americans discovered with the infection “were treated for suspected Lyme disease so they didn’t have relapsing fever … I think it s likely that some people will have relapsing fever from this,” Krause said.
One way to diagnose the new disease is by the two-part Lyme screening test. Unfortunately, these patients with miyamotoi … some of them tested positive to that first screening test … but when we did the second test … that test was negative,” Krause said. That result points to the new infection, he said.
“I think we could expect looking ahead that we will find a lot more of these cases,” Krause said.