A tiny tick, as big as a poppy seed, changed my life with a single bite. I was doing what I love best, taking pictures – that’s as much as I can gather from when I was bitten. It was in August 2007. I was standing on a spit of land in longish grass, taking pictures of the dragon boat races and enjoying the sunshine, the day with friends, and the joy of the people in the boats. There were lots of people out for picnics, children running around, families having fun, and lots of supporters in the crowd.
That evening I noticed a sore, burning itch on my left ankle and first thought a mosquito got me. Later the swelling got worse, and I thought it might have been a spider. I took antihistamine and forgot about it.
Over the next three years I became seriously sick. My family doctor sent me to more than 2 dozen doctors and specialists, all unable to pinpoint my health problems which varied from severe pain, headaches, waking up blind several times, developing hearing loss, sensitivity to sound, light or pressure, heart palpitations, dysphagia (difficulty swallowing), getting lost in familiar places, becoming confused and disoriented, having to use a walker or wheelchair to get around, sleeping for 10 to 14 hours at a time, and so much more.
Tests came back negative but the pain persisted. More symptoms were added regularly — vertigo that had me stop the car next to the road, jumping muscles, pins-and-needles, stiff neck, fever, rashes, infections, shaking, crushing fatigue, loss of appetite, changes in everything from sleeping habits to bowel and bladder habits, hair loss ….
A friend mentioned Lyme disease and it sparked my curiosity. I looked online and found Canadian Lyme Disease Foundation’s website (CanLyme.org). There, for the first time, I discovered a list of all of my symptoms together. I could check off over 50 of them in the first go. My experience is similar to so many people that I have met since then. Online there are a ton of blogs and forums indicating that some people go as long as 15 to 20 years before figuring out why they can feel perfectly normal and then suddenly succumb to debilitating illness, over and over again.
Lyme disease is not new
Lyme disease was first identified in the 1970’s. According to health agencies around the world, including the World Health Organization (WHO), and the Public Health Agency of Canada, it is the most common tick-borne disease in North America. It can become a chronic, serious illness if left untreated so early antibiotic treatment is essential.
Nobody is denying the existence and severity of Lyme disease but “the medical world is divided with one group saying that it is rare, easy to diagnose and easy to treat, and the other saying it is a difficult diagnosis because of the negativity of the ELISA test and the lack of medical education of medical students, family practitioners and specialists,” says Dr. Ernie Murakami. Dr. Murakami even found himself being disciplined in British Columbia for treating Lyme disease, the most rapidly spreading vector-borne disease in the world, as confirmed by the WHO and Health Canada, among others.
There are currently only about 150 cases of confirmed Lyme disease each year in Canada but, according to Jim Wilson, head of the Canadian Lyme Disease Foundation, blood tests conducted in Canada “are not that accurate. We have many strains of the Lyme bacteria. We’re only testing for one strain.”
In fact, there are at least six different methods of testing for Lyme disease. The method most often prescribed is a two part blood test. The first part, Enzyme-linked immunosorbent assay or ELISA, is fundamentally flawed in its ability to detect the disease and is known to have a 50 per cent false negative rate. It is completed outside of a certified lab, at the location where the sample is taken. That sample is forwarded to a lab for a more specific test known as the Western blot test, only if the ELISA results show positive. The Western blot test is also known to deliver less than reliably accurate results.
Rampant clinical denial
Clinical diagnosis is key to detection and treatment. This means that it is at the discretion of individual health practitioners to be open enough to even consider a diagnosis of Lyme disease.
Dr. Robbin Lindsay is a research scientist with the Public Health Agency of Canada. He has been researching ticks and zoonotic diseases for 20 years and says the populations of the blacklegged ticks (or deer tick) that carry Lyme disease are growing. In some areas of Canada between 10 and 50 per cent of blacklegged ticks are now carrying Lyme bacteria.
“There is an urgent need for making the public and the medical world aware of this since there is an unexplained Lyme denial problem prevalent in our medical association,” says Dr. Murakami.
CanLyme Director David Cubberley agrees, saying “in San Francisco I learned there’s a whole clutch of Calgary families there buying their Lyme-care. We can be sure there are Edmontonians and Vancouverites, too. Canada’s refusal to treat people infected with Lyme disease is as universal as our healthcare system. Many people are living in poverty as a result of personally financing antibiotics, which are the sole control and cure for chronic Lyme disease.”
With a distinct lack of available treatment options in Canada and a prevailing atmosphere of persecution against Lyme-literate physicians within this country, even if a diagnosis is established patients have to go to the US for treatment. The mainstream medical community views chronic Lyme disease (Post-treatment Lyme disease Syndrome) with scepticism and the Canadian Government advocates against testing for the disease in the US, where both detection and treatment are more advanced, as compared to what is available in Canada.
Health Canada cites “ongoing concerns regarding American for-profit laboratories that may not be using properly validated tests or criteria for interpreting test results. By using these unvalidated methods, patients who don’t have Lyme disease may test positive and they may end up receiving potentially harmful treatments.”
I have not tried any of these but am in contact with people who believe they have had relief from therapies such as: the salt/vitamine C regimen, malariotherapy and intracellular hyperthermia therapy (ICHT), hyperbaric oxygen therapy (HBOT), colloidal silver, rife machines, dangerous injections, and even overuse of intravenous antibiotics.
People take these risks because they become desperate for treatment, relief and healing. Their families suffer right along with them, helplessly standing by and watching a very sick person being told by doctor after doctor that nothing is wrong, or that it is, “all in their head.” Many are referred to mental institutions.
Canadians are routinely told that they have anything from a bad flu to Multiple Sclerosis and often undergo numerous unnecessary surgeries or, on the other side of the spectrum, are denied admittance to hospitals (even while in ambulance). It is incredibly easy for members of the medical profession, who are not literate in Lyme disease, to misdiagnose disseminated Lyme disease because it is associated with such varied symptoms.
Moving in a positive direction
In June 2012, MP Elizabeth May brought forward a Private Member’s Bill calling for a National Lyme Disease Strategy. This is a non-partisan Bill. We need the local, provincial and federal governments to support and push for this action. A petition has been drafted and approved by the House of Commons supporting the Bill and raising awareness across Canada. Only people living in Canada may sign the petition but anyone can download a copy, collect signatures and mail it to the address printed on the documents. The person collecting the signatures on the petition should sign the front page, but could attach several pages of signatures to the same front page before mailing back. There is no need for a stamp. The sooner we can collect as many signatures as possible, the sooner we can start the process when Parliament reconvenes.
If you are living with Lyme disease, or know someone with Lyme disease in Canada, please go to the blog to download, print and sign the petition. Look for the tab at the top labeled “Lyme Petition” at meerkatmarlene.blogspot.ca and remember: there is no need to be paranoid. If we are aware, we can prevent the spread of this disease. Do regular tick checks on each other and on your pets.
Written by Marlene Spies
Originally published in
SouthFields Village Voice,Volume III, Issue ii