Lyme Disease: Tick Talk
Chris Vanclief woke in the dead of night, gasping and clutching his chest. An ambulance quickly rushed him to the hospital where an ECG came back clear. Two weeks later, an episode of difficult breathing, chest and abdominal pain, shakes and fatigue gripped the 38-year-old, a chiropractor and hockey coach in prime physical condition. “I remember being in the hospital and turning to my wife to say, ‘Something’s eating me inside and nobody’s listening.’”
As the days lagged on, Vanclief slept through Christmas and forgot his niece’s name. Test after test came back with no conclusive answers. Doctors simply told him, ‘there’s nothing wrong with you.’
As his unexplained pain mounted, a serious and growing concern continued its breadth across Canada, infecting parents and children bite by bite.
The Whitby, Ont. native soon went to an elite Toronto hospital, where he was sent home with a diagnosis of costochrondritis, an inflammation of the breastbone. Top Canadian and American neurologists picked and probed Vanclief, unable to detect a grave, mystifying disease. One doctor deduced panic attacks.
At this point, Vanclief could barely walk, his condition plunging with a deluge of symptoms. Let down by the medical profession, he began to live within the depths of despair and isolation. “I was left on the outside, trying to get in. Nobody would sit there and say, ‘let’s see what’s going on.’”
Knowing that time would tell his fate, Vanclief acted on the life-saving words of his American uncle, who suggested he might have Lyme disease, a tick-borne infection that can viciously attack multiple body systems such as the heart, central nervous system, brain, spleen and the nerves that work the intestines.
According to the Public Health Agency of Canada (PHAC), Lyme disease is an emerging infectious disease and a serious growing concern in Canada. Early diagnosis and antibiotics can eradicate the disease but delayed diagnosis may lead to chronic health issues and, in rare circumstances, death.
The organism responsible for this incapacitating illness is the Western blacklegged tick infected with Borrelia burgdorferi – a spiral-shaped bacteria. If the tick attaches to you for 36 hours or more, it makes your body its home by seeping into the bloodstream, infiltrating major organs rapidly and even moving into the brain.
This multi-system attack can set off a devastating constellation of afflictions – recurring flu, joint pain, dizziness, seizures, chest pain and, in some cases, paralysis. “I felt like something was wrong with my brain. It was like trying to fight through a fog,” says Vanclief.
He underwent the primary assessment of a two-tiered laboratory testing process for Lyme disease – the Enzyme-Linked Immunosorbent Assay (ELISA). This test follows guidelines published by the Canadian Public Health Laboratory Network, which is subjected to quality control evaluations. “Canadian testing has the bar set so high that almost everyone will fall into the negative range,” says Jim Wilson, who founded the Canadian Lyme Disease Foundation after years of battling misdiagnosis of the infection.
Due to certain circumstances, such as the length of time a person is infected with the Lyme bacteria, the ELISA may not always garner the correct response. Vanclief’s test came back negative.
Medical epidemiologist Paul Mead of the Centers for Disease and Control Prevention (CDC) says that the ELISA tests antibodies that would appear in response to an infection, but “there is a delay between when you first become infected and when you produce enough antibodies to be detected by the test. This is called a ‘window period, and can be anywhere from a few days to four-to-six weeks.” Mead also adds that “it is quite unusual” for a long-time sufferer of Lyme disease to not test positive.
The ELISA test as the first tier “is not ideal,” says Aparna Taylor, a naturopathic doctor and member of the International Lyme and Associated Diseases Society (ILADS). “An individual’s antibodies may not react to the antigens in the test, which would point to a ‘false negative’ result. Bacteria and co-infections can shift forms and symptoms often come and go or migrate, thus causing confusion in diagnosis and, ultimately, in treatment,” she adds. The second tier is the Western Blot, which some believe is more precise.
“I felt like something was wrong with my brain.” — Chris Vanclief
With his suspicions unconfirmed, Vanclief joined the growing number of Canadians heading south to find answers. He sent blood work to IgeneX Inc., a state-of-the-art – and expensive – California-based lab, which tests for multiple varieties of the Lyme bacteria. Two weeks later, Vanclief had the proof in his hands: he was positive for Lyme disease.
It was during this time that Vanclief met his – and hundreds of other Lyme disease patients’ – saving grace: Dr. Maureen McShane, who contracted Lyme disease in 2002 while tending to her garden in Saint-Donat, Que. “If I had known there were ticks in Canada I would have thought twice. I thought it was some kind of sticky seed on the back of my leg,” she recalls.
“The reason why most Canadians are unaware of ticks in Canada is because awareness tends to be higher in jurisdictions where nuisance tick species are abundant,” explains a representative of the Public Health Agency of Canada.
According to PHAC, some established Western blacklegged tick populations are spreading within certain areas of southern Canada. In Ontario, tick populations can be found in Long Point, Point Pelee National Park, Rondeau Provincial Park, Turkey Point, Prince Edward Point National Wildlife Area and St. Lawrence Islands National Park in the Thousand Islands region in eastern Ontario. The Monteregie and Estrie regions in the southeast part of Quebec, Nova Scotia’s Lunenburg, Bedford and Shelbourne areas, southeastern Manitoba, Vancouver Island and the Fraser Valley in B.C. are also endemic to the tick.
A few weeks before Vanclief began experiencing symptoms, he recalled spending time at the cottage, gardening, visiting Algonquin Park and canoeing. “The blacklegged ticks that transmit Lyme disease principally live in wooded areas where there’s lots of leaf litter and underbrush,” says Mead. “Where they don’t do well is hot or drier spots, and this is important because people can focus their activities where their children can play in sunnier or drier areas.”
PHAC, as well as the Ontario Ministry of Health and Long-Term Care, have developed awareness campaigns, tick surveillance and predictive maps to educate the public on this very sticky situation.
For 10 tortuous months, Dr. McShane endured the disease without answers, without treatment. Confusion, isolation and anger ensued – all from a bite by a bug the size of a poppy seed. Before a New York doctor diagnosed her, she was told she was suffering from menopause. Dubbed the ‘Great Imitator,’ Lyme disease is often misdiagnosed because it mimics other neurological diseases such as multiple sclerosis, epilepsy and Parkinson’s disease. Mental illness comes into play due to the emotional turmoil the disease causes. Since a co-infection may be transmitted simultaneously with the Lyme bacteria, the mixed symptoms can further mystify a doctor. “It’s a very complicated illness and it does not come alone. Some of my sickest patients actually have many more bacteria that are transmitted from the tick. The tick is a cesspool of infection and it carries a lot of different bacteria,” says Dr. McShane. In Canada, there is not enough evidence to confirm that ticks are infected with more than one pathogen, says PHAC.
After two years of intense antibiotic treatment, all the symptoms that plagued Dr. McShane healed. “My memory is much better, I’m no longer stuttering, I no longer have problems swallowing or horrendous leg pain.”
While symptoms differ from person to person, the classic warning signs that indicate the presence of the disease are on-and-off flu-like symptoms and joint pain, says Dr. McShane. According to ILADS, a “bull’s eye” rash, which is a red spot ringed by clear skin and circled by a red loop, is a foolproof sign of Lyme disease but only appears in nine per cent of cases. The rash appears at the location of the bite three-days-to-one-month after, with Health Canada claiming that about 70 – 80 per cent of infected people get the rash.
Most doctors diagnose positive based on the presence of this particular skin irritation, and if you were in an area known to have Western blacklegged ticks. Vanclief, who is now recovering from an aggressive regime of antibiotics prescribed by Dr. McShane, never had this indicative rash.
Since 2003, Dr. McShane, who is now fully recovered, has dedicated her Plattsburgh N.Y. practice to treating Lyme disease patients that have suffered for months or even decades with a disease that is briefly touched upon in medical school. Because of her intimate encounter with Lyme disease, Dr. McShane understands just how puzzling it can be. “You’ll go to bed and have a sore throat and the next morning wake up and feel good and think, ‘Oh, my immune system is so great!’” But that’s not the case, explains Dr. McShane, who has treated 300 Canadians with Lyme disease since 2004. “I can’t say this for a fact but what was probably happening was that the bacteria was cycling and reproducing. I got worse and worse as the months went on.”
“It’s a very complicated illness and it does not come alone. Some of my sickest patients actually have many more bacteria that are transmitted from the tick. The tick is a cesspool of infection and it carries a lot of different bacteria,” says Dr. McShane.
Lyme disease can be contracted year-round, with spring and summer posing greater risks. The Centers for Disease Control and Prevention says that in cold climates, ticks are dormant but it is possible that, “if you get a number of very warm days earlier in the year, adult ticks might come out and start looking for a meal,” says Mead.
Ticks infected with Borrelia burgdorferi appear to have been present in North America since at least the turn of the last century, says Mead. An illness consistent with Lyme disease was reported in 1969. Lyme disease was first described in the mid-1970s following the investigation of a cluster of arthritis cases in children living in Lyme, Connecticut. “The disease is highly endemic in the northeastern and north central areas of the U.S.,” says Mead.
Recognized as a nationally notifiable condition in the U.S. since 1991, Lyme disease just became a nationally reportable disease in Canada this year. Medical professionals must now report cases of Lyme disease to the Public Health Agency of Canada. By the end of 2010, PHAC will conclude an incidence rate in Canada after it receives the numbers of reported cases by each Canadian province and territory. An estimate gathered from provincial reports reveals that approximately 150 cases of Lyme disease occur in Canada per year. A person can live for years with Lyme disease but it does claim lives. In one case, a patient succumbed to it while walking in New York City – the bacteria got into the conduction system of his heart. In December 2009, Gabe Magnotta, co-founder of Vaughan-based Magnotta Winery, passed away from Lyme disease, which he contracted in 2004. “My wonderful husband suffered a very long, painful and courageous battle with Lyme disease,” says Rossana Magnotta, president and CEO of Magnotta Winery. She is now determined to build Canada’s first research and testing facility devoted to Lyme disease, “so that Canadians inflicted with Lyme disease can finally receive the proper testing, diagnosis and care they are entitled to.”
HOW TO PREVENT LYME DISEASE
• Wear light-coloured long-sleeved shirts and pants
• Wear an insect repellent that contains DEET
• Scrutinize your entire body and clothes for ticks after being outdoors
• Pay close attention to children, who often roll around in the grass
• Ticks can latch onto your family pet and hop onto vulnerable human skin, do not sleep with your dog or cat
• If you locate a tick on your body, carefully remove it with tweezers and place it in an empty vial while trying not to crush or damage it. Note the date and area you were in.
• If you begin to experience the symptoms of Lyme disease, bring the tick to your doctor and get tested.
*Recommendations made by the Public Health Agency of Canada, the Centers for Disease Control and Prevention and Dr. Maureen McShane