My name is Sue Faber and I spear-headed the Lyme Letters Canada Campaign which has now closed as over 2700 Lyme letters were delivered to the Minister of Health on August 22, 2017.
I am 40 years old, married, mother of three daughters, residing in Burlington, Ontario. I am a registered nurse (BScN) with a background in ER nursing as well as case management in the community. I also have experience working in Kenya alongside my husband with a mission organization where we focused on outreach and support for marginalized communities; specifically, the needs of at-risk children, women and families. My heart has always been advocacy and giving the marginalized a voice and a platform in which to rise up about adversity. Our family has now joined the ranks of the marginalized. We are part of thousands across Canada who share our struggles. We all navigate the uncertain and troubling waters of Lyme disease.
I experience often incapacitating symptoms of chronic Lyme Disease which include tachycardia, memory problems, choking, coughing, migratory pain and profound fatigue. I was diagnosed in 2016, after over 15 years of being symptomatic with over 20 ‘strange symptoms’, and progressively getting worse. My story is not unfamiliar, and echoed by so many of my fellow Canadians. The truly tragic thing is that as an RN, I never considered Lyme as the culprit, after-all, I never had the ‘mandatory tick bite’ or ‘bullseye rash’. My only bite was behind my ear, in 1983, in the Muskoka’s at our cottage. I was six years old.
It was my family doctor, whom after exhausted all avenues to figure out what was wrong with me; referrals to several specialists and thousands upon thousands of healthcare dollars spent on every conceivable laboratory and diagnostic imaging test – that she decided to test me for Lyme, because, as she put it, ‘there is lots of hype in the media about Lyme disease’. Bingo, the test came back positive. I initially cried for joy as I finally had a diagnosis and positive test. Little did I know that our nightmare was only just beginning. I was initially told my test was a false positive.
Both myself and all three of my daughters have Lyme – as evidenced by testing done in the US and Germany. Myself and one of my daughters have also ‘hit the jackpot’ and tested positive within the Canadian system – for a European strain of Lyme. Ironically enough, my child doesn’t have a travel history to Europe. This means one of two things: congenital transmission (she was passed this infection in pregnancy), or she contracted the European strain here in Canada. Both these concerns highly reasonable and yet contentious. Both my daughter and I have been told that our cases do not meet ‘case definition criteria’ for Lyme disease surveillance in Ontario and so, we don’t even count within this country according to Public Health. I have yet to be granted a request to meet with management at my local public health unit to discuss my concerns.
So, like so many others, I have a reason to push, to question and to demand answers. I now have to advocate for myself, my daughters and I choose to do the same for all others who have been blindsided by this insidious disease.
Most Canadian Lyme sufferers are medical refugees, myself included, we are also being forced into debt because our own country’s healthcare system refuses to identify our suffering and illness as real. We continue to cost this country extensive health care dollars as many Lyme patients are shuffled from one specialist to the next, extensive testing performed without definitive answers and then the process repeated over and over and over – until we are told ‘there is nothing more that can be done’.
We are labelled with diagnoses of chronic fatigue, fibromyalgia and depression. We are forced into disability as our bodies are systematically destroyed by an infection which does not discriminate and systematically invades and destroys. Few are granted LTD or CPP disability as the debilitating symptoms of a chronic Lyme diagnosis are not considered valid. Lives destroyed, families torn apart, suffering diminished – this has become the mantra of many.
We need proper and up-to-date testing, we need new tests that will cover the bio-diversity of Lyme strains that have been identified across Canada and not only identify antibodies but active infection.
We need to receive the expert medical expertise and treatment necessary to help us regain our lives; we need empathy, compassion and an approach which doesn’t delegate us into the ‘Lyme trash-heap’.
We need our physicians and allied health professionals trained to recognize the well documented clinical symptomology of this disease and to consider Lyme as a differential diagnosis from the very beginning. We are in crisis and our suffering needs to be exposed, validated and enacted upon. Now.
We need our physicians to take it upon themselves to research this illness for themselves. https://canlyme.com/for-physicians is an excellent place to start.
We need Canadian clinicians to connect with physicians and scientists and researchers from the International Lyme and Associated Disease Society – ILADS. We need our Federal Framework to include ILADS guidelines for treatment so that our physicians have direction and choice to provide us with the best possible care. http://www.ilads.org/ilads_news/2015/ilads-treatment-guidelines-are-now-summarized-on-the-national-guideline-clearinghouse-website/
We need the reality of congenital transmission (from mother to child) addressed and studied. It has already been identified and reported but for some reason, in Canada, not acknowledged. We are concerned about sexual transmission and even blood supply safety. All these issues have been raised within our provincial and federal regulatory bodies and governments and yet we fear that our concerns are falling on deaf ears. There is credible, scientific, evidence based, peer-reviewed literature which backs up our concerns- please see list of congenital references at the end of this page.
I would like to direct you to the CanLyme Website: www.canlyme.com. This organization led by the dynamic leadership of Jim Wilson has been instrumental is clearly describing the issues surrounding Lyme Disease and the concerns we have as Canadians. This Canadian website is clear, concise and provides up-to-date information on all things Lyme.
I would also like to direct you to videos from the recent Lyme Conference in Ottawa to develop a Federal Framework for Lyme disease. There are presentations of world class clinicians, scientists and researchers who are validating and unveiling more research surrounding the persistence of Lyme bacteria, as well as focused approaches to patient centered treatment, diagnosis and testing. http://www.lymehope.ca/lymevoice/federal-lyme-conference-may-2016-testimonies-from-canadian-patients
I draw your attention to the presentation by Canadian clinician Dr Ralph George Hawkins, Internal Medicine specialist out of Calgary, Alberta. There are few with his expertise who are willing to follow suit but this can and must change!
www.youtube.com/watch?v=kT7uPl36ugc&index=10&list=PLGVatzhW64xeCJ1iNbHgN20WYT6Dfm05J
I also draw you to take some time to listen to the personal testimonies of patients, affected by Lyme – who were given the opportunity to bare their souls and share their painful shared journeys – their stories need to be heard.
For those of us who struggle through the uncertain shadows of the Lymelands, I have to believe that we can transform this place of pain and marginalization, into a platform by which each of us can peacefully and credibly speak out for change and then see that change occur. We are strong together and we need the help of others – like you, to also acknowledge your concerns.
The purpose of this campaign was to draw Canadians together - from every Province in Canada and for us to share our collective voice. I am so thankful that over 2700 Canadians contributed personal lyme stories and letters of support on behalf of loved ones affected by Lyme. All these letters were delivered to the Minister of Health on August 22, 2017. https://lymehope.weebly.com/lymehope-updates/meeting-with-federal-health-minister-jane-philpott-delivery-of-lyme-letters-petition
I am 40 years old, married, mother of three daughters, residing in Burlington, Ontario. I am a registered nurse (BScN) with a background in ER nursing as well as case management in the community. I also have experience working in Kenya alongside my husband with a mission organization where we focused on outreach and support for marginalized communities; specifically, the needs of at-risk children, women and families. My heart has always been advocacy and giving the marginalized a voice and a platform in which to rise up about adversity. Our family has now joined the ranks of the marginalized. We are part of thousands across Canada who share our struggles. We all navigate the uncertain and troubling waters of Lyme disease.
I experience often incapacitating symptoms of chronic Lyme Disease which include tachycardia, memory problems, choking, coughing, migratory pain and profound fatigue. I was diagnosed in 2016, after over 15 years of being symptomatic with over 20 ‘strange symptoms’, and progressively getting worse. My story is not unfamiliar, and echoed by so many of my fellow Canadians. The truly tragic thing is that as an RN, I never considered Lyme as the culprit, after-all, I never had the ‘mandatory tick bite’ or ‘bullseye rash’. My only bite was behind my ear, in 1983, in the Muskoka’s at our cottage. I was six years old.
It was my family doctor, whom after exhausted all avenues to figure out what was wrong with me; referrals to several specialists and thousands upon thousands of healthcare dollars spent on every conceivable laboratory and diagnostic imaging test – that she decided to test me for Lyme, because, as she put it, ‘there is lots of hype in the media about Lyme disease’. Bingo, the test came back positive. I initially cried for joy as I finally had a diagnosis and positive test. Little did I know that our nightmare was only just beginning. I was initially told my test was a false positive.
Both myself and all three of my daughters have Lyme – as evidenced by testing done in the US and Germany. Myself and one of my daughters have also ‘hit the jackpot’ and tested positive within the Canadian system – for a European strain of Lyme. Ironically enough, my child doesn’t have a travel history to Europe. This means one of two things: congenital transmission (she was passed this infection in pregnancy), or she contracted the European strain here in Canada. Both these concerns highly reasonable and yet contentious. Both my daughter and I have been told that our cases do not meet ‘case definition criteria’ for Lyme disease surveillance in Ontario and so, we don’t even count within this country according to Public Health. I have yet to be granted a request to meet with management at my local public health unit to discuss my concerns.
So, like so many others, I have a reason to push, to question and to demand answers. I now have to advocate for myself, my daughters and I choose to do the same for all others who have been blindsided by this insidious disease.
Most Canadian Lyme sufferers are medical refugees, myself included, we are also being forced into debt because our own country’s healthcare system refuses to identify our suffering and illness as real. We continue to cost this country extensive health care dollars as many Lyme patients are shuffled from one specialist to the next, extensive testing performed without definitive answers and then the process repeated over and over and over – until we are told ‘there is nothing more that can be done’.
We are labelled with diagnoses of chronic fatigue, fibromyalgia and depression. We are forced into disability as our bodies are systematically destroyed by an infection which does not discriminate and systematically invades and destroys. Few are granted LTD or CPP disability as the debilitating symptoms of a chronic Lyme diagnosis are not considered valid. Lives destroyed, families torn apart, suffering diminished – this has become the mantra of many.
We need proper and up-to-date testing, we need new tests that will cover the bio-diversity of Lyme strains that have been identified across Canada and not only identify antibodies but active infection.
We need to receive the expert medical expertise and treatment necessary to help us regain our lives; we need empathy, compassion and an approach which doesn’t delegate us into the ‘Lyme trash-heap’.
We need our physicians and allied health professionals trained to recognize the well documented clinical symptomology of this disease and to consider Lyme as a differential diagnosis from the very beginning. We are in crisis and our suffering needs to be exposed, validated and enacted upon. Now.
We need our physicians to take it upon themselves to research this illness for themselves. https://canlyme.com/for-physicians is an excellent place to start.
We need Canadian clinicians to connect with physicians and scientists and researchers from the International Lyme and Associated Disease Society – ILADS. We need our Federal Framework to include ILADS guidelines for treatment so that our physicians have direction and choice to provide us with the best possible care. http://www.ilads.org/ilads_news/2015/ilads-treatment-guidelines-are-now-summarized-on-the-national-guideline-clearinghouse-website/
We need the reality of congenital transmission (from mother to child) addressed and studied. It has already been identified and reported but for some reason, in Canada, not acknowledged. We are concerned about sexual transmission and even blood supply safety. All these issues have been raised within our provincial and federal regulatory bodies and governments and yet we fear that our concerns are falling on deaf ears. There is credible, scientific, evidence based, peer-reviewed literature which backs up our concerns- please see list of congenital references at the end of this page.
I would like to direct you to the CanLyme Website: www.canlyme.com. This organization led by the dynamic leadership of Jim Wilson has been instrumental is clearly describing the issues surrounding Lyme Disease and the concerns we have as Canadians. This Canadian website is clear, concise and provides up-to-date information on all things Lyme.
I would also like to direct you to videos from the recent Lyme Conference in Ottawa to develop a Federal Framework for Lyme disease. There are presentations of world class clinicians, scientists and researchers who are validating and unveiling more research surrounding the persistence of Lyme bacteria, as well as focused approaches to patient centered treatment, diagnosis and testing. http://www.lymehope.ca/lymevoice/federal-lyme-conference-may-2016-testimonies-from-canadian-patients
I draw your attention to the presentation by Canadian clinician Dr Ralph George Hawkins, Internal Medicine specialist out of Calgary, Alberta. There are few with his expertise who are willing to follow suit but this can and must change!
www.youtube.com/watch?v=kT7uPl36ugc&index=10&list=PLGVatzhW64xeCJ1iNbHgN20WYT6Dfm05J
I also draw you to take some time to listen to the personal testimonies of patients, affected by Lyme – who were given the opportunity to bare their souls and share their painful shared journeys – their stories need to be heard.
For those of us who struggle through the uncertain shadows of the Lymelands, I have to believe that we can transform this place of pain and marginalization, into a platform by which each of us can peacefully and credibly speak out for change and then see that change occur. We are strong together and we need the help of others – like you, to also acknowledge your concerns.
The purpose of this campaign was to draw Canadians together - from every Province in Canada and for us to share our collective voice. I am so thankful that over 2700 Canadians contributed personal lyme stories and letters of support on behalf of loved ones affected by Lyme. All these letters were delivered to the Minister of Health on August 22, 2017. https://lymehope.weebly.com/lymehope-updates/meeting-with-federal-health-minister-jane-philpott-delivery-of-lyme-letters-petition
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