In early July 2004, Rob Manten was camping at the Brant Park Conservation Area near Brantford when he caught a black tick biting him.
The environmental engineer, who was 38 at the time, thought nothing of it until the last week of August when, at his home in Waterdown, Ont., he began experiencing what he thought was a bad case of the flu. Daily migraines, fever, nausea, fatigue and a ringing in his ears (tinnitus) accompanied constant aches and pains. He suffered from dizziness and had difficulty concentrating. His family doctor diagnosed a sinus infection.
By late October his cognitive problems were so severe he had to go on short-term disability.
Over the next six months 18 doctors, internists and neurologists examined Manten as he launched a frantic effort to find out what was wrong. At one point he was told his problems were all in his head. Along the way he was tested three times for Lyme disease, an illness caused by the bacterium Borrelia burgdorferi, which is transmitted by certain types of ticks.
But the ELISA (enzyme-linked immunosorbent serum assay) tests, the standard first-level test for Lyme in Canada, were negative. Most Canadian doctors will not order a second test, called the Western Blot, which some consider more accurate.
It wasn’t until Manten paid $325 and sent his blood to a private laboratory in the U.S. in May 2005 that he tested positive for Lyme.
“It was a relief to finally know,” he says, “but incredibly frustrating that so much time had gone by dealing with the local medical system that didn’t help me.”
Manten found a doctor in Mississauga, Dr. Jozef Krop, who had trained with U.S. Lyme specialists. Krop put him on a regimen of intravenous and oral antibiotics, which he still takes, as well as vitamins and supplements. While his health has improved, Manten continues to suffer from fatigue and cognitive problems, although both have diminished. The tinnitus continues. He’s still not well enough to work.
No one knows exactly how many GTA residents contract Lyme disease in each year. The federal government only made reporting of the disease mandatory a year ago.
Ontario has been tracking Lyme for a longer period and cites 69 cases in 2007, 108 in 2008 and 79 in 2009, but the Canadian Lyme Foundation, an activist group, says the numbers are much higher for a variety of reasons, especially because many sufferers don’t know they have the disease.
Still, “the numbers are increasing,” says Dr. David Williams, associate chief medical officer of health for the Ministry of Health and Long-Term Care.
Many are struggling with debilitating medical and neurological problems and some, more rarely, die, because many in the medical community can’t agree on the symptoms, the tests to diagnose it or even the proper treatment.
Lyme disease is named after the small town of Old Lyme, Conn. In 1975, local resident Polly Murray, who had been suffering from chronic medical problems for decades, met with Dr. Allen Steere, a rheumatology resident at Yale, and told him of 43 cases of children and adults around Old Lyme who had arthritis and other debilitating symptoms.
In 1982, Dr. Willy Burgdorfer, a Swiss microbiologist working at the Rocky Mountain Laboratories of the U.S. National Institute of Health, discovered the agent responsible for Lyme disease: spirochetes (spiral-shaped bacteria) of the genus Borrelia in the mid-guts of ticks that infected deer and other wild animals. The organism was named Borrelia burgdorferi in his honour.
During the 35 years since Polly Murray first brought the mysterious disease to the public’s attention, the disease has been the subject of considerable controversy.
Rob Manten’s symptoms, for example, were typical for someone bitten by an infected tick. Other effects everyone agrees on include arthritis, heart problems, central and nervous system disorders and, in very rare cases, death.
The Canadian Lyme Foundation lists 76 symptoms. The Public Health Agency of Canada (PHAC) not nearly so many. The foundation says the problems, if they become chronic, can last a lifetime. The Public Health Agency says they last “up to several months.”
A common complaint is that doctors misdiagnose Lyme.
That happened to Nancy Barnard, whose daughter, Violet, was bitten by a tick in Presqu’ile Provincial Park in August 2003, at age seven. A month later Violet had many of the problems Manten experienced. “She was tested for arthritis, lupus and every other disease the doctors could think of,” says Barnard, whose family lives in Keswick, Ont. “She underwent blood tests, x-rays, ultrasounds and a brain MRI. Everything came back normal.”
Violet began missing a lot of school because her memory had deteriorated to the point that she couldn’t recall eating breakfast an hour later. In 2005 an arthritis specialist asked if she had ever been bitten by anything. That question led Barnard to propose to her pediatrician that Violet could have Lyme disease. “He scoffed at me,” she says, “and suggested it could be psychological.”
Barnard was able to get Violet an ELISA test but when it returned negative, her pediatrician, family doctor and a pediatrician at Toronto’s Hospital for Sick Children all dismissed Lyme as the possible cause of Violet’s continuing problems. Barnard finally connected with a doctor in British Columbia who put her daughter on antibiotics, a regimen that was continued for two years by a doctor in Ontario who was “Lyme sympathetic.”
Violet, now 13, is a healthy, straight-A student.
Winery owner Rossana Magnotta — who became a Lyme activist after her husband Gabe died last December from Lyme disease at age 60 following an eight-year battle — believes the medical community in general is ill-informed.
“They’re not listening to their patients and so many people are being misdiagnosed, which is what happened to Gabe,” she says.
Lyme’s symptoms can imitate those of Parkinson’s disease, multiple sclerosis, amyotrophic lateral sclerosis (Lou Gehrig’s disease), Alzheimer’s, fibromyalgia and chronic fatigue. In fact, some activists believe people with these ailments actually have Lyme disease.
Andy Barrie, who recently retired as host of CBC Radio’s Metro Morning, told his audience in 2007 that he has Parkinson’s. When he mentioned earlier this year that he had Lyme disease in 1996, he was inundated with messages from members of the public telling him his Parkinson’s was likely Lyme.
“I received 28 pounds of literature from people who felt they’d been ignored [by the health-care system],” he says, “and that I was clearly being f----- over.” Barrie was treated early on for Lyme disease and believes it has nothing to do with his Parkinson’s.
Dr. Robbin Lindsay, a research scientist with PHAC, says some doctors don’t know much about Lyme because many “have never seen a case.” To remedy that, the agency has recently placed articles about Lyme in several medical journals “to try to get the message out.”
In Ontario, the Ministry of Health and Long-Term Care is also using social media sites such as YouTube and Twitter to educate the public, especially young people, about Lyme.
A major point of contention is the reluctance or unwillingness of some doctors to prescribe antibiotics early on to treat Lyme. This is a mistake, according to medical experts.
“There’s a window of time of 24 to 36 to 48 hours from when the tick attaches [to the body] until it starts to transmit the bacteria . . . into your bloodstream,” says Lindsay.
If the tick is removed properly during this time, there should be no transmission. And even if it has infected a human, it can remain hidden inside the body for weeks, months and even years before any symptoms appear. When they do, however, they can affect virtually every organ in the body, making an accurate diagnosis tricky for a doctor.
Instead of waiting for test results, doctors “should make a clinical diagnosis” when faced with a patient who displays the symptoms of Lyme disease and has been in an area known to have ticks, says Dr. Allison McGeer, director of infection control at Mount Sinai Hospital in Toronto.
The treatment for patients who appear to have chronic Lyme disease is not as clear. The Lyme foundation and other advocates believe “long-term” antibiotic therapy is the best treatment. The influential Infectious Diseases Society of America calls it a “placebo effect.”
As for diagnostic tests, Jim Wilson, president of the Canadian Lyme Foundation, believes the first-tier ELISA test “should be scrapped altogether” because it produces so many false negatives.
Many, if not most, in the medical community disagree. “One of ELISA’s problems is that it has too many false positives,” says Dr. Williams.
Both Williams and McGeer say a doctor can order a Western Blot test if an ELISA comes back negative.
McGeer is particularly concerned that Canadians like Marten are sending their blood to a for-profit laboratory in the U.S.
“They are not regulated . . . and they have a financial incentive to deliver a positive result,” she says.
Trying to make sense of all the contradictory evidence and information about Lyme disease is overwhelming to those who believe they have contracted the disease.
Rossana Magnotta has a dream to build a research centre in Ontario dedicated to all facets of Lyme disease, “where people can walk in off the streets and be tested and treated properly [and] responded to with dignity,” she says. “Imagine how many people we could help every day.”
It sounds like a wonderful idea and one that, if realized, could help bring some much-needed clarity to this mysterious health issue.
Paul McLaughlin is a Toronto freelance writer. Research for this article was supported by a journalism grant from the Canadian Institutes of Health Research.
Where the ticks are
“Lyme disease exists anywhere songbirds fly,” says Jim Wilson of the CLF, noting that ticks attach to migrating birds and fall off when the birds alight. In Canada, ticks that most commonly spread Lyme are the blacklegged tick (Ixodes scapularis, also known as the deer tick) and the western blacklegged tick (Ixodes pacificus).
In Ontario, ticks are most likely found in Long Point, Point Pelee National Park, Rondeau Provincial Park, Turkey Point, Prince Edward Point National Wildlife Area and in the Thousand Island region of eastern Ontario, according to the PHAC. “However, we are starting to see them in urban areas,” says Dr. Robbin Lindsay. Ticks are also found in southern Quebec, according to a 2010 study in Environmental Health Perspectives, an area previously not thought to be a concern. They are also in parts of the Maritimes, southeast Manitoba and in B.C., especially in the lower mainland, Vancouver Island and the Fraser Valley. “There were 69 confirmed cases in Ontario in 2007, 108 in 2008 and 79 in 2009,” says Dr. David Williams, the associate chief medical officer of health for the Ontario Ministry of Health.
In the U.S., where the Center for Disease Control estimates there are about 29,000 confirmed Lyme cases and about 7,000 unconfirmed ones, the ticks are most common in the northeastern and Midwestern states and northeastern California. Internationally, it has been found on all continents except Antarctica.
“It is an emerging disease and is on the move,” says Lindsay. But it’s not an epidemic in the sense that Canadians are at great risk of being infected.
“You have a greater chance of being killed by a car on your way to cottage country than of getting Lyme disease there,” says Mount Sinai’s Dr. McGeer, director of infection control at Mount Sinai Hospital in Toronto.
Prevention and detection
The best way to avoid being bitten by a tick is to wear shoes and long, light-coloured pants in any grassy areas. Tuck the bottoms of the pants into socks or footwear. Spray uncovered skin with a citronella- or DEET-based repellent. Don’t apply it to the hands or face of children and not at all to young infants.
Ticks are also believed to dislike pine scents, bamboo, eucalyptus, and tea tree oil.
Since covering children at the cottage or while camping is likely not an option, daily tick detection is recommended for both children and adults. Ticks especially like the groin area, the head and behind the ears.
Look for a rash on the body, especially one that resembles a bull’s-eye. It occurs in about 80 per cent of those bitten by an infected tick.
“Check every nook and cranny of their body [and] their hair as if you’re looking for head lice,” says Dr. Maureen McShane, a Montreal resident who has a Lyme practice in Plattsburgh, N.Y. She was bitten by a tick eight years ago. Before being treated with antibiotics (after a long period of misdiagnoses) she compared the pain in her bones and muscles to having been shot.
If you find a tick, you can try to remove it with tweezers, grabbing the tick’s body as close to the person’s skin as possible. Pull upwards slowly. This can be tricky. If you squeeze or twist the wrong way it can increase the possibility the tick will disgorge bacterium into the victim.
If possible, go to an emergency department and have a medical professional remove the tick. This also makes it easier to have the tick sent out for analysis.
Not all ticks carry the spirochete, so unless the bitten person becomes ill or develops a rash, chances are the tick wasn’t infected.
Toronto Star July 7th. 2010
The environmental engineer, who was 38 at the time, thought nothing of it until the last week of August when, at his home in Waterdown, Ont., he began experiencing what he thought was a bad case of the flu. Daily migraines, fever, nausea, fatigue and a ringing in his ears (tinnitus) accompanied constant aches and pains. He suffered from dizziness and had difficulty concentrating. His family doctor diagnosed a sinus infection.
By late October his cognitive problems were so severe he had to go on short-term disability.
Over the next six months 18 doctors, internists and neurologists examined Manten as he launched a frantic effort to find out what was wrong. At one point he was told his problems were all in his head. Along the way he was tested three times for Lyme disease, an illness caused by the bacterium Borrelia burgdorferi, which is transmitted by certain types of ticks.
But the ELISA (enzyme-linked immunosorbent serum assay) tests, the standard first-level test for Lyme in Canada, were negative. Most Canadian doctors will not order a second test, called the Western Blot, which some consider more accurate.
It wasn’t until Manten paid $325 and sent his blood to a private laboratory in the U.S. in May 2005 that he tested positive for Lyme.
“It was a relief to finally know,” he says, “but incredibly frustrating that so much time had gone by dealing with the local medical system that didn’t help me.”
Manten found a doctor in Mississauga, Dr. Jozef Krop, who had trained with U.S. Lyme specialists. Krop put him on a regimen of intravenous and oral antibiotics, which he still takes, as well as vitamins and supplements. While his health has improved, Manten continues to suffer from fatigue and cognitive problems, although both have diminished. The tinnitus continues. He’s still not well enough to work.
No one knows exactly how many GTA residents contract Lyme disease in each year. The federal government only made reporting of the disease mandatory a year ago.
Ontario has been tracking Lyme for a longer period and cites 69 cases in 2007, 108 in 2008 and 79 in 2009, but the Canadian Lyme Foundation, an activist group, says the numbers are much higher for a variety of reasons, especially because many sufferers don’t know they have the disease.
Still, “the numbers are increasing,” says Dr. David Williams, associate chief medical officer of health for the Ministry of Health and Long-Term Care.
Many are struggling with debilitating medical and neurological problems and some, more rarely, die, because many in the medical community can’t agree on the symptoms, the tests to diagnose it or even the proper treatment.
Lyme disease is named after the small town of Old Lyme, Conn. In 1975, local resident Polly Murray, who had been suffering from chronic medical problems for decades, met with Dr. Allen Steere, a rheumatology resident at Yale, and told him of 43 cases of children and adults around Old Lyme who had arthritis and other debilitating symptoms.
In 1982, Dr. Willy Burgdorfer, a Swiss microbiologist working at the Rocky Mountain Laboratories of the U.S. National Institute of Health, discovered the agent responsible for Lyme disease: spirochetes (spiral-shaped bacteria) of the genus Borrelia in the mid-guts of ticks that infected deer and other wild animals. The organism was named Borrelia burgdorferi in his honour.
During the 35 years since Polly Murray first brought the mysterious disease to the public’s attention, the disease has been the subject of considerable controversy.
Rob Manten’s symptoms, for example, were typical for someone bitten by an infected tick. Other effects everyone agrees on include arthritis, heart problems, central and nervous system disorders and, in very rare cases, death.
The Canadian Lyme Foundation lists 76 symptoms. The Public Health Agency of Canada (PHAC) not nearly so many. The foundation says the problems, if they become chronic, can last a lifetime. The Public Health Agency says they last “up to several months.”
A common complaint is that doctors misdiagnose Lyme.
That happened to Nancy Barnard, whose daughter, Violet, was bitten by a tick in Presqu’ile Provincial Park in August 2003, at age seven. A month later Violet had many of the problems Manten experienced. “She was tested for arthritis, lupus and every other disease the doctors could think of,” says Barnard, whose family lives in Keswick, Ont. “She underwent blood tests, x-rays, ultrasounds and a brain MRI. Everything came back normal.”
Violet began missing a lot of school because her memory had deteriorated to the point that she couldn’t recall eating breakfast an hour later. In 2005 an arthritis specialist asked if she had ever been bitten by anything. That question led Barnard to propose to her pediatrician that Violet could have Lyme disease. “He scoffed at me,” she says, “and suggested it could be psychological.”
Barnard was able to get Violet an ELISA test but when it returned negative, her pediatrician, family doctor and a pediatrician at Toronto’s Hospital for Sick Children all dismissed Lyme as the possible cause of Violet’s continuing problems. Barnard finally connected with a doctor in British Columbia who put her daughter on antibiotics, a regimen that was continued for two years by a doctor in Ontario who was “Lyme sympathetic.”
Violet, now 13, is a healthy, straight-A student.
Winery owner Rossana Magnotta — who became a Lyme activist after her husband Gabe died last December from Lyme disease at age 60 following an eight-year battle — believes the medical community in general is ill-informed.
“They’re not listening to their patients and so many people are being misdiagnosed, which is what happened to Gabe,” she says.
Lyme’s symptoms can imitate those of Parkinson’s disease, multiple sclerosis, amyotrophic lateral sclerosis (Lou Gehrig’s disease), Alzheimer’s, fibromyalgia and chronic fatigue. In fact, some activists believe people with these ailments actually have Lyme disease.
Andy Barrie, who recently retired as host of CBC Radio’s Metro Morning, told his audience in 2007 that he has Parkinson’s. When he mentioned earlier this year that he had Lyme disease in 1996, he was inundated with messages from members of the public telling him his Parkinson’s was likely Lyme.
“I received 28 pounds of literature from people who felt they’d been ignored [by the health-care system],” he says, “and that I was clearly being f----- over.” Barrie was treated early on for Lyme disease and believes it has nothing to do with his Parkinson’s.
Dr. Robbin Lindsay, a research scientist with PHAC, says some doctors don’t know much about Lyme because many “have never seen a case.” To remedy that, the agency has recently placed articles about Lyme in several medical journals “to try to get the message out.”
In Ontario, the Ministry of Health and Long-Term Care is also using social media sites such as YouTube and Twitter to educate the public, especially young people, about Lyme.
A major point of contention is the reluctance or unwillingness of some doctors to prescribe antibiotics early on to treat Lyme. This is a mistake, according to medical experts.
“There’s a window of time of 24 to 36 to 48 hours from when the tick attaches [to the body] until it starts to transmit the bacteria . . . into your bloodstream,” says Lindsay.
If the tick is removed properly during this time, there should be no transmission. And even if it has infected a human, it can remain hidden inside the body for weeks, months and even years before any symptoms appear. When they do, however, they can affect virtually every organ in the body, making an accurate diagnosis tricky for a doctor.
Instead of waiting for test results, doctors “should make a clinical diagnosis” when faced with a patient who displays the symptoms of Lyme disease and has been in an area known to have ticks, says Dr. Allison McGeer, director of infection control at Mount Sinai Hospital in Toronto.
The treatment for patients who appear to have chronic Lyme disease is not as clear. The Lyme foundation and other advocates believe “long-term” antibiotic therapy is the best treatment. The influential Infectious Diseases Society of America calls it a “placebo effect.”
As for diagnostic tests, Jim Wilson, president of the Canadian Lyme Foundation, believes the first-tier ELISA test “should be scrapped altogether” because it produces so many false negatives.
Many, if not most, in the medical community disagree. “One of ELISA’s problems is that it has too many false positives,” says Dr. Williams.
Both Williams and McGeer say a doctor can order a Western Blot test if an ELISA comes back negative.
McGeer is particularly concerned that Canadians like Marten are sending their blood to a for-profit laboratory in the U.S.
“They are not regulated . . . and they have a financial incentive to deliver a positive result,” she says.
Trying to make sense of all the contradictory evidence and information about Lyme disease is overwhelming to those who believe they have contracted the disease.
Rossana Magnotta has a dream to build a research centre in Ontario dedicated to all facets of Lyme disease, “where people can walk in off the streets and be tested and treated properly [and] responded to with dignity,” she says. “Imagine how many people we could help every day.”
It sounds like a wonderful idea and one that, if realized, could help bring some much-needed clarity to this mysterious health issue.
Paul McLaughlin is a Toronto freelance writer. Research for this article was supported by a journalism grant from the Canadian Institutes of Health Research.
Where the ticks are
“Lyme disease exists anywhere songbirds fly,” says Jim Wilson of the CLF, noting that ticks attach to migrating birds and fall off when the birds alight. In Canada, ticks that most commonly spread Lyme are the blacklegged tick (Ixodes scapularis, also known as the deer tick) and the western blacklegged tick (Ixodes pacificus).
In Ontario, ticks are most likely found in Long Point, Point Pelee National Park, Rondeau Provincial Park, Turkey Point, Prince Edward Point National Wildlife Area and in the Thousand Island region of eastern Ontario, according to the PHAC. “However, we are starting to see them in urban areas,” says Dr. Robbin Lindsay. Ticks are also found in southern Quebec, according to a 2010 study in Environmental Health Perspectives, an area previously not thought to be a concern. They are also in parts of the Maritimes, southeast Manitoba and in B.C., especially in the lower mainland, Vancouver Island and the Fraser Valley. “There were 69 confirmed cases in Ontario in 2007, 108 in 2008 and 79 in 2009,” says Dr. David Williams, the associate chief medical officer of health for the Ontario Ministry of Health.
In the U.S., where the Center for Disease Control estimates there are about 29,000 confirmed Lyme cases and about 7,000 unconfirmed ones, the ticks are most common in the northeastern and Midwestern states and northeastern California. Internationally, it has been found on all continents except Antarctica.
“It is an emerging disease and is on the move,” says Lindsay. But it’s not an epidemic in the sense that Canadians are at great risk of being infected.
“You have a greater chance of being killed by a car on your way to cottage country than of getting Lyme disease there,” says Mount Sinai’s Dr. McGeer, director of infection control at Mount Sinai Hospital in Toronto.
Prevention and detection
The best way to avoid being bitten by a tick is to wear shoes and long, light-coloured pants in any grassy areas. Tuck the bottoms of the pants into socks or footwear. Spray uncovered skin with a citronella- or DEET-based repellent. Don’t apply it to the hands or face of children and not at all to young infants.
Ticks are also believed to dislike pine scents, bamboo, eucalyptus, and tea tree oil.
Since covering children at the cottage or while camping is likely not an option, daily tick detection is recommended for both children and adults. Ticks especially like the groin area, the head and behind the ears.
Look for a rash on the body, especially one that resembles a bull’s-eye. It occurs in about 80 per cent of those bitten by an infected tick.
“Check every nook and cranny of their body [and] their hair as if you’re looking for head lice,” says Dr. Maureen McShane, a Montreal resident who has a Lyme practice in Plattsburgh, N.Y. She was bitten by a tick eight years ago. Before being treated with antibiotics (after a long period of misdiagnoses) she compared the pain in her bones and muscles to having been shot.
If you find a tick, you can try to remove it with tweezers, grabbing the tick’s body as close to the person’s skin as possible. Pull upwards slowly. This can be tricky. If you squeeze or twist the wrong way it can increase the possibility the tick will disgorge bacterium into the victim.
If possible, go to an emergency department and have a medical professional remove the tick. This also makes it easier to have the tick sent out for analysis.
Not all ticks carry the spirochete, so unless the bitten person becomes ill or develops a rash, chances are the tick wasn’t infected.
Toronto Star July 7th. 2010