Letter: more needs to be done about Lyme disease

Dear Editor:

I am writing this letter to you as a voice for Canadians in this country. The recent news coverage of infected blacklegged ticks in Alberta is just the tip of the iceberg. I am a Canadian who has contracted Lyme disease in this country. I am only one of thousands of Canadians suffering from this insidious disease contracted right here in our country. Lyme disease has been found throughout this country. No one is immune and we are all at risk. The spread of Lyme disease is seven times that of AIDS. Lyme disease is the fastest growing infectious disease in North America with the CDC estimating 400,000 cases annually. Canadians are becoming disabled and bedridden by a bite of an infected tick.

The present testing protocol using a two-tiered system is not catching the majority of cases in this country. The first step test – the ELISA – has been shown in many scientific studies to be unreliable and inaccurate in detection the bacteria. I myself was tested three times and told I didn`t have Lyme disease when in fact I do. This story is repeated over and over across this country by Lyme sufferers. Patients cannot get the more accurate test – the Western Blot – without a positive ELISA. People are being misdiagnosed with MS, ALS, Parkinson’s and many more conditions and diseases when they actually have Lyme disease. I was told that I could have MS.

Our doctors across this country are not well versed in Lyme disease, its presentations and how to treat the disease in both the acute and chronic forms. There seems to be apathy about patients with Lyme disease. Doctors are insisting a person doesn`t have Lyme disease even when all the symptoms, bite history etc. exists. Many doctors are telling patients that Lyme disease doesn`t exist in Canada. Doctors are afraid to treat Lyme disease in fear of losing their license. A Canadian out in BC whose son has Lyme disease was actually told by a doctor “I know you have a life-threatening illness but I’m sorry, I can’t risk my license to treat you.” and “yes, I know your lab came back positive for a tick-borne infection but I’m not going to treat you! Go see your guy in the USA . Get him to treat you.” This is appalling and in a word inhumane. This is a child who is fighting for his life with late stage Lyme disease in a country where universal health care is supposed to be as Canadian as the Maple Leaf. How is our government allowing this to happen and why isn`t educating our doctors about this disease not a priority of the federal government since Lyme disease is affecting the whole country.

Presently if a Canadian contracts Lyme disease that person will most likely be unable to receive medical help and be forced to leave our country and travel to the US or Europe to be treated for a bacterial infection. Many will lose their homes, life savings, while others are unable to afford treatment and left to rot. We have mini communities of Canadians living in the US fighting to stay alive from a tick bite. We are being referred to as LYME LEPERS since our own country has abandoned us. People are dying, suffering from this disease and many Lyme patients with no light of help are killing themselves to be free of this horrific disease that robs a person of their mind and body. How can this be happening in Canada? It`s reminiscent of the early days of AIDS when the gay community were dying and no one cared. Did we not learn anything from that shameful time?

For some reason the response of Public Health on this disease has been lack lustre. There are studies dating back twenty years about the spread of Lyme disease into Canada yet on a whole the amount of education given to the public on this disease by provincial and federal health officials is dismal. Where are the campaigns like those ran for West Nile, SARS or H1N1? The public was inundated with information about each of those health threats yet Lyme disease is getting little promotion on all levels of government even though this is the fastest growing infectious disease in North America and more and more reports are showing black legged ticks all over this country. The States that border Canada are some of the most endemic for Lyme disease in the US. It is naive and irresponsible of our government not to be making a full out effort to educate the public.

In closing I would just like to say I feel that Public Health failed me. I knew nothing about deadly bacteria in my backyard. I knew about SARS, West Nile and H1N1 because my government knew that my health as well as every other Canadians was at risk from these threats. I was able to follow the precautions suggested by my health officials and protect myself and my family. The government has known about this health threat for many, many years yet there has been no urgency to inform the public. We have people dying, children suffering from a preventable and treatable disease. Lyme disease needs to be a priority now. We, as a country, need to become educated and we need our federal government to lead the way. Please use your medium to help educate the woefully unaware public.

Christine Heffer
Corunna, Ontario

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  1. I have Lyme disease which I acquired as a child playing in the town of St. Albert or possibly spending time at Pigeon lake. As an adult I acquired other coinfections that are transmitted by biting insects. I was for many years an avid gardener and ticks were in my little yard. I did not have long grass and I was not in the forest. I was in my back yard. I did see the ticks! Yes, there were so many but I could not identify them. They were not in any of my gardening books nor were they in the garden books in the library. I decided they must be an introduced species, as they did not appear to be damaging the plants I ignored them.

    As the years went by I kept getting sick and taking longer and longer to recover. My boss told me I took more sick days than any other employee. My doctor grew exasperated as she felt I should get better faster and that I must be doing something to prevent my return to health.

    A few years later I became extremely ill. I was barely able to stand, was dizzy, light headed, double vision, freezing cold, shivery, headaches, joint pain, insomnia and the list goes on and on. NO doctors could figure out what was wrong. They tried antidepressants, anti seizure plus many more drugs that did not help or made me worse. This went on for 3 very long years, the medical profession decided that it was all in my head and that a hobby would help. I was sent to a psychiatrist who determined that there was nothing wrong with me.

    It was a woman in the grocery store that told me to look at Lyme disease and that was in 2004 and since then I have very slowly gained ground in my health. I still have a ways to go. My current doctor figures I have had chronic bacterial infections since I was a child.

    I have been reinfected many times, the last that I know of was last summer when I got two bulls eye rashes on my thigh. Again the docs were clueless. Fortunately I already knew what to do so that I would not become so very sick.

    I continually come across more people that have this or likely have lyme but have not been diagnosed and treated properly so they shoved aside and diagnosed with conditions of no hope like MS, Fibromyalgia, Crohns, and the list goes on and on and on.

  2. I too have Lyme disease that I got in THIS country. When I became sick my doctor had no clue what was wrong with me. I was sent to an ENT, then to a neurologist, then back to an ENT. I was put on antidepressants, anti-anxiety meds etc etc.

    I finally asked my doctor to test me for lyme disease and after much fight he agreed to do the test. It came back POSITIVE which I have learnt is like winning the lottery in Canada. I am one of only 3 people of the hundreds I know of with Lyme disease who got a positive result. The only problem is that my doctor deemed it a “false postiive”. He referred me to an infectious diseases doctor who refused to see me because it was likely a false positive and he wanted me to retest in 6-8 weeks. Lyme disease needs to be treated promply and this doctor wanted me to wait an additional 6-8 weeks to retest (the results take another 4-6 weeks to receive) on top of the already 7 months it took to finally find out what was wrong with me.

    I have had to be treated by a doctor in the USA because there is not one doctor in Ontario who treats lyme disease.

    This is a very sad state and this needs to change NOW.

  3. I too have Lyme disease and it is a living hell. I often wish this was just fatal because then at least the pain would be over and someone would take me seriously. I have to go out of province for treatment and since I have had it for 20 years – that is the last time I remember a tick attached in southern Manitoba (got unbearable a year and a half ago with neurlogical symptoms). I have spent thousands on physio, accupunture, chiro, massage to no avail.

    I have been on antibiotics for 8 months with little improvement. Can only work 2 days a week and have to hire someone to clean my house. It is very difficult to treat and very costly. I feel very alone because I look fine but feel 80 years old. I am 42 and drs. are blaming my present symptoms as fibromyalgia – a made up disease with even less credibility than Lyme. I am disgusted with our health care system and the lack of empathy I have received. I often wonder if it was happening to them what would be their reaction? It slowly robs your strength and the pain is unrelenting most days.

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