Lyme Disease: Tick Talk
August 4, 2010 by Simona Panetta
Filed under Health
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
www.phac-aspc.gc.ca
www.health.gov.on.ca/en/ms/lyme
www.ilads.org
www.canlyme.com
www.hc-sc.gc.ca
Maureen McShane, M.D., can be reached at 1.800.944.0399
I am the father of Chris Vanclief, after seeing what my son has gone through over the past 8-9 months and the numerous tests he has endured. I am tottally shocked the our so called medical system and Canadian government still refuses to admit that we have a problem with Lymes disease here in Canada. It is unfortunate that we have to travel outside of our country for accurate tests and proper medical diagonses. I challenge our medical profession and politicial leaders to step up and ensure that we all have the proper medical care we need when dealing with this dreadfull disease. Don’t take this disease lightly it is very serious. I want to thank all the people who have helped my son and please continue to pray for his full recovery.
As a parent of a child who continues to suffer from chronic Lyme disease as a result of denial by our government and medical system, I am sickened by the years of denial and unaccountability while they attempted to hide it’s existence in Canada. Even now that some actual warnings have been made recently public by provincial governments, they still continue to grossly downplay the seriousness of this horrific disease, and how widespread it is. Innocent lives are being destroyed and for what reason??
Thank you for printing this article and bringing this matter to the attention of the public. No one has a clue how bad this disease is until they themselves or a loved one are inflicted. Then add all the hoops you have to jump through to try to get acknowledgement and treatment.
The reality of Lyme itself is a nightmare which is made even worse by our government restrictions and uneducated medical providers, most specifically our Infectious Disease “specialists” who deny that chronic Lyme even exists.
Thank you to all doctors who are willing to think outside the box and help us despite the disapproval of your peers. The lives you are saving are very grateful.
The media is doing an excellent job of bringing much needed attention to Lyme Disease and the lack of knowledge in this country.
When will the medical community wake up? When will the flawed Elisa test be tossed since it has been found in studies to be less than 50% accurate?
When will Canadians be diagnosed based on clinical symptoms which every health agency website says doctors are able to do?
How many more Canadians have to suffer before we say enough?
Thank you for this well researched article.
See the well researched Canadian documentary produced by CTV W5 entitled ‘out of the wild’. It is available online to view.
For those readers with more questions see the US documentary, ‘Under our Skin’. It explains the controversy, the corrupt system at the IDSA and how people are affected by the decisions made by insurance company cronies and archaic guidelines. Canadians would do well to question why we use a system from the US in the first place since it is indeed all about the money, not the patients well being that truly counts.
I believe a lawsuit that illustrates how Canadians are being denied their charter of rights by being de-insured will get the attention of the medical community and our government. Every single doctor or bureaucrat who has uttered words like ‘the tests are highly sensitive’, or ‘i am adamant that none of these people have lyme’ or ‘lyme is rare’ or ‘go home and take some advil’ will be called upon by the courts to answer for their negligence and indeed their abject ignorance.
My daughter is getting better slowly having graduated from high school this past june WITH HONOURS, something that would not have been possible without the care of doctors in the US treating her for lyme disease and 2 co-infections. Doctors here in Canada to date have NO diagnosis to offer but are adamant she does not have lyme disease. Must be the ‘placebo’ effect that Dr Henry from the BC CDC speaks about so fervently. I would suggest some truth serum for Dr Henry and the other naysayers or perhaps a infected tick bite might bring the truth to light more quickly.
A tremendous debt of Thanks to the lyme literate warriors like Dr Murakami and Dr Kropp who fought for what they believed in. They are true heroes.
“Sometimes the seed falls upon the path and is trampled under the feet of ignorance.”
Vanitha Sankarin
What is it going to take before the government, Health Canada, and the CDC step up and do what’s right. I have suffered from Lyme Disease for three years now and can honestly say that I wouldn’t wish this on my worst enemy. The pain that I live with every day is almost as bad as the ignorance of the severity of this disease. I was told I had everything from MS and Lupus to it all being in my head. I am now having serious issues with my heart, and hope that I won’t be the next Lyme fatality. People need to be educated, and doctors need to listen to their patients.
Thanks for this article, knowledge is power, and we need to get the public informed.
I was tested for Lyme disease yesterday. I have been extremely ill for 9 years. I have been diagnosed with dermatomyositis, poly RA, APLA, watermelon stomach, trigeminal neuralgia, hemicania continua, depression, cognitive impairment, to name a few. My doctors do not all agree on the diagnoses since they are all somewhat atypical. My illness started with a rash, fevers and a wierd flu. The rash began at my cottage about 45 minutes south of Algonquin park. I Live on the shore of lake Ontario. The fevers started in November. My rheumatologist said that November was to late and there is no Lyme where I frequent. He never tested for Lyme. Not even when I became completely paralized after steroid treatment. Not even when my CK enzymes were zero and my CRP was off the chart high. I am having a symptom remission now. If is is Lyme disease is there any chance that the lyme titer will come back positive? My neurologist is running the test and I’m not really sure what he knows or doesn’t know, at lest he believes that it is a possiblity. It seems to be that having one typical diagnosis makes more sense than having ten atypical diagnosis with a few inconvient diagnoses left over. Thanks for letting me rant. My son is thirteen and I was in bed for most of his childhood. My rheumatologist suggested Lyme disese the bvery first time I saw him and then never tested for it because of very tiny details. I really feel betrayed.
I just want to say how sorry I feel for all the people that have and are still suffering from this illness. After reading this, I have a strong belief that there may be millions of people infected with lyme in Canada alone.
I say we start a petition or petitions nation wide in order to force all that are involved to do the right and human thing in this country. Why should any canadian go out of Canada for tests and treatment when we have everything here?
The people in charge and responsible at the medical centers and government officials should truly be ashamed of themselves for restricting all Canadians of their right to live a healthy life too just as they do. Shame, shame, shame
WOW! 2 years ago i was bit by something but not sure what. in Vernon BC. i had a rash with white center that i presented to my GP … did he send me to a specialist? he didn’t even know it was a bug bite. I showed a co-worker and she said it was an infected bug bite. the reason i first saw my doctor is that i had the worlds nastiest fever. soaking my clothes over and over. 3 baths a day to cool off. and my muscles so tight. first time in my life on Muscle relaxants.
So, my friend tells me its a bug bite so i schedule another appointment with my doctor. by this time i can’t eat. drinking boost only. he puts in his chart “general malaise” and says to rest. well i keep getting worse so i start typing m symptoms in Google. by now several weeks have past. i come up with Lyme. classic case, to the book. nothing else fits. i schedule urgent appointment as now i’ve had to keep my business closed for too long. they test for Lyme, NEGATIVE RESULT. I continue to go down hill and all my friends think im going nuts. feels like something is eating my brain. when i tell my doctor this he gives me 10 days of antibiotics. the symptoms subside.
here i am 2 years later typing in symptoms of what seems like MS and one doctor even sent me to urgent neuro who will now give me an MRI. so im on-line typing in my symptoms: blurred vision, trembling jaw, stiff neck, headache all day every day and only i notice this bcs i have moments with no headache and realise that my head has been in a fog for weeks in pain. my brain “skips” , hard to explain. also, i write and put the letters in the wrong order but im not so far gone not to notice. now i have glasses too. eyes and forehead and arms twitch. insomnia. and alas another infection of the Tonsils, 2nd in 6 months. when i google these maddening symptoms … late stage Lyme seems to be the best fit.
So now i ask, why did a Dr. who saw the sight of the bite with tell tale rash. witnessed the flu like symptoms followed by malaise. saw the emergency report from the day i had a seizure in front of my terrified children and sent unconcious by ambulance to the hospital. … not just treat me for Lyme? because that stupid test i had done came back negative.
I have a scheduled blood test for this Thursday again. this has been a hell for years and my poor family saw a man who could conquer the world become a weakling who is lucky to do well enough to barely pay our monthly bills. feel well enough to think and type only because i just completed 10 days of antibiotics which seems to give me a few days of lowered symptom effects. what i need is real treatment and wish i could have had proper treatment when first hit by this.
Richard A. Young, Calgary AB Canada
(believe infected at Ellison Park, Vernon BC, Canada while Camping)
Richard, I hope you got help, a proper diagnosis and treatment. I had Lyme and two co-infections for over 15 years and started treatment with the doctor in Plattsburgh 6 months ago, I am doing really, really well, and even though ‘elderly’ I do believe I shall recover enough to be able to enjoy life again. I wish you all the best.
Hey Richard I sure hope you got some help
I too have been suffering for over 3 years with this God awful Lyme !!
I couldn’t hold my head up let alone my body for over 7 months, was sleeping over 23 hours a day, dropping weight, issues with oxygen levels, heart rate, felt like complete crap and honestly thought way too many times I was going to die and there where days that would have been a blessing. Sad thought but true, no one could figure out what was going on I had symptoms comi g out the ying/yang but the blood test came back negative So as far as Alberta doctors are concerned NOPE CAN’T BE LYME!!!
One infectious disease doctor of all of about 30years told my husband & I that ” there has never ever been a case of human Lyme in Alberta-EVER”. And we have been told they are the only doctors that can treat it!!!!
I was very lucky I was reffered to Naturpath in Edmonton who worked ata clinic where one of the doctors had been treating Lyme for over 10 years at the time.
I asked them to do the test & they sent it to Igenix & it came back positive so thru they’re help I believe is the only reason I am still alive. I had the test run again last fall & again positive but with a few changes as well as markers for Chronic Lyme
So I am now seeking a NP in BC at the request of my Alberta NP only be wise I need anti biotics now if I hope to get better & our Alberta NP’s do not have prescription rights yet BC ones do!!!
So I just want to say do not give up!! Stay strong, and get a good NP at least the good ones don’t treat you like a stupid child or like it’s all in your head, because we all know its not
Good luck
G