As I reflect on 2020, it has been a year like no other. Despite the challenges, chaos and uncertainty of COVID, exciting progress has been made in the field of Lyme disease. Below I'm sharing a few highlights from 2020 and share my Hope as we move forward into 2021.
The first BIG news in 2020 was at the end of January, when the CDC updated their website with guidance that Lyme could be spread from a mother to her fetus/baby. This important acknowledgement of the risk of vertical transmission of Lyme will usher in fresh opportunities for collaborative research and clinical investigation.
We are expectantly awaiting Health Canada and The Public Health Agency of Canada (PHAC) to update their website on Lyme disease for both the public and healthcare professionals, to acknowledge both the risk of maternal-fetal transmission of Lyme and also the risks of adverse outcomes especially in the setting of untreated Lyme in pregnancy as has already been highlighted in a 2018 Systematic Review on Gestational Lyme by PHAC authors.
At the end of July, The Public Health Agency of Canada issued a call for feedback and input on their proposed website updates on Lyme disease. Canadian advocacy leaders wrote a comprehensive collective letter of response with detailed, evidence-based recommendations including the importance of the Agency to provide clear acknowledgement of the risk of maternal-fetal transmission of Lyme.
New Canadian Lyme and Pregnancy Research
The second BIG news item was in September, a ground-breaking research study on Lyme and Pregnancy was launched by the McMaster University Midwifery Research Centre, under the leadership of a top Canadian researcher, Dr. Elizabeth Darling. This research opportunity remains OPEN to new participants. Researchers will be comparing the health of people who have been diagnosed or suspected to have Lyme during a pregnancy and their offspring to people/offspring who have not.
This Canadian-led research is the first of it's kind and furthermore, the first North American research into this alternate mode of transmission in 25 years! This research leads with principles of patient engagement and is open to participants from Canada, US, Internationally (participation is not restricted to any country or geographic location.) Enrolment is open to ANY person with a pregnancy(ies). Eligible participants may complete this survey regardless of the outcome of the pregnancy(ies) (i.e. stillbirth, miscarriage, or termination).
The research will be conducted in two phases.
1: Online Survey – to gather information about Lyme disease in pregnancy
2: Online Focus groups - for those who have been diagnosed or suspected to have Lyme disease during pregnancy, they will be asked questions about areas of research they deem priorities and asked to indicate their interest in being contacted about participating in an online focus group to discuss future research priorities for Lyme disease and willingness to participate in Lyme disease research.
LymeMIND Conference and LymeX
We are thankful for the Cohen Foundation as they continue to lead with generous philanthropy for Lyme disease research, innovation and collaboration. For the last two years, I have been honoured to represent LymeHope as a panelist in their LymeMIND conference, speaking directly to the issue of maternal-fetal transmission of Lyme, and alongside other experts, bringing this important, understudied alternate mode of transmission back into the forefront of academia and government.
This year, due to COVID, the conference was shared via an online platform - enabling access to many all over the world! I have learned so much from other panelists, presentations and scientists and I'm excited by the energy, enthusiasm, momentum and shared desire to make things better for Lyme sufferers. This collaborative conference values and prioritizes the bringing together of scientific and medical expertise alongside patients and advocacy leaders - and is a beacon of Hope for the Lyme community all over the world. At this conference, an exciting announcement was made of 'LymeX' - the largest Lyme public/private partnership in history to 'strategically advance Lyme and tickborne disease solutions in direct collaboration with Lyme patients, patient advocates, and diverse stakeholders across academia, nonprofits, industry and government.' What a huge and important achievement!
LymeMIND 2020 'Mothers and Children' Panel
CanLyme Podcast Series and Educator Resources
New Canadian resources were launched in 2020 by CanLyme with new PodCast Series 'Looking at Lyme' with host Sarah Cormode - featuring a fantastic lineup of experts in their first season including prominent Canadian leaders in Lyme disease including: Dr. Ralph Hawkins (Internal medicine clinician), Dr. Melanie Wills (Scientist and Director of the G. Magnotta Lab at the University of Guelph), Elizabeth May (MP Green Party), Dr. Liz Zubek (family physician and Lyme expert) and Janet Sperling (Entomologist).
CanLyme has also initiated the Lyme Education Awareness and Prevention program (LEAP) and has developed an educators resource and are seeking educators who are willing to pilot and provide feedback through two virtual focus groups.
Recent Published Canadian Research Papers
Ally Rogerson and Canadian Lyme researcher Dr. Vett Lloyd authored a paper 'Lyme Disease Patient Outcomes and Experiences; A retrospective Cohort Study. 'In this study, patient outcomes were evaluated from a cohort of 210 Canadian Lyme disease patients seeking treatment at one US Lyme disease clinic following a treatment regimen conforming to the ILADS treatment guidelines. It was found that the majority of Lyme disease patients at the clinic responded positively to treatment and a significant (p < 0.05) decrease in symptoms was observed over time.'
A 2019 paper by Emilie Gaudet, Dr. Odette Gould and Dr. Vett Lloyd titled 'Parenting When Children Have Lyme Disease: Fear, Frustration, Advocacy is specific to children and families affected by Lyme. This paper is a qualitative analysis of written correspondence produced by 23 parents of children and adolescents with Lyme disease. This paper is an excellent, eye-opening resource highlighting the hurdles Canadian families face accessing the care they need for their children.
Scientists from the G. Magnotta Lab including Dr. Melanie Wills also published two papers in 2020 including a review article. 'Lyme Disease Frontiers: Reconciling Borrelia Biology and Clinical Conundrums' and a second paper 'The Platelet Fraction Is a Novel Reservoir to Detect Lyme Borrelia in Blood.'
CTV W5 Episode 'Bitten' on Lyme disease
New Book Launch 'Chronic' in Feb 2021
In February 2021, a brand new book 'Chronic' will be available for purchase! Written by leading Lyme clinician Dr. Steve Phillips and singer/songwriter/writer Dana Parish, this book is set to be a best-seller!
On their FB page, Dr. Phillips writes this:
'If you've ever wondered why I take the injustice of chronic illness so personally, that answer is twofold:
1. I care deeply about my patients.
2. I've had my own personal story, which I've revealed in detail in the book for the first time publicly. It was terrifying and cathartic to share something so painful, but it's also a story of triumph.
'Chronic' is being released in just a few weeks!
Dana and I feel so privileged to have had our dear friend Dr. Neil Spector write the foreword, which takes on even more meaning now.
We were in the unique position of having written a book about the chronic illness pandemic, in the midst of the worst pandemic in 100 years. Our publisher wisely delayed the release of our book so we could include a chapter on Covid. And just like with Lyme+, we don't pull any punches.
Nature's not fickle. Chronic infections can cause chronic inflammation and disease. A huge array of chronic, autoimmune, and psychiatric illnesses have their roots in infection.
A paradigm-shift in how doctors approach chronic illness is decades overdue. Lifelong-palliation of symptoms is not an answer. Treat the cause.'
New Year, New Hope
As we welcome in the New Year, 2021, I'm sharing a very special piece of artwork which was painted for me upon commission, by an extraordinarily accomplished BC artist, Eryn Goodman who has also been impacted by Lyme. This stunning painting has a place of honour above my desk in my office, along with another beautiful painting 'There is Always Hope' gifted to me in 2019 by a dear friend and amazing Lyme advocate Jennifer Wheeler. Both masterpieces serve as regular reminders of Hope - even in the midst of suffering, loss, uncertainty and despair.
The title of this painting is 'The Night will Bend'. The painting depicts stormy, icy seas of ignorance and uncertainty, opaque vicious storm clouds - which indeed sets the current stage which Lyme sufferers throughout Canada have endured for decades. The lighthouses stands tall, resolute, unmoving and strong - it's warm beacon of Hope illuminating a bright guiding light which cuts through the vast darkness - it depicts the brave actions and advocacy of many, adults and children alike, who share their stories and speak truth to power to give voice and validation of those who suffer.
However, what is so important, and what I asked the artist to depict, was the birth of the sunrise in the horizon - bright twinkling light pushing back the dark clouds and even reflecting on the stormy waves below. The never-ending night of sorrow and despair WILL bend to the Light that is breaking through.
For me, the horizon of Hope depicts the coming together of government, academia, scientists/researchers, patients and caregivers with a determination to work cohesively and collectively together to address the issues of those who suffer. It's a big task and at times seems impossible - however, I trust and believe that break-throughs are ahead. Perhaps 2021, despite continued COVID uncertainty, will mark the advent of the Sunrise.
Sue Faber, RN BScN
Co-Founder and President, LymeHope
Today we heard the tragic news that Dr. Neil Spector had passed away. I saw the news on Facebook and my heart sank. Tears started to flow down my cheeks. He was a beacon of Hope for so many and now he is gone. I started thinking, given his passion, dedication and determination to make things better for Lyme disease sufferers - what would he want us to do?
I'll never forget the day that I had an opportunity to talk with Neil. I was introduced to him by my friend Dana Parish at a lovely dinner hosted by the Cohen Foundation in New York City in October 2019. There he was, sitting with me at dinner and we started to chat. He was so engaged, genuine, caring and thoughtful, he made me laugh, he had a twinkle in his eyes and a warm smile. I knew I was sitting next to a pioneering world changer, a physician-scientist who was drawing on his personal experience with Lyme and using it as a stepping stone to act and engage within his sphere of influence and utilize his research expertise to make things better for Lyme sufferers.
The next day Neil was one of the featured plenary speakers at the Cohen Foundation sponsored LymeMIND 2019 conference - a video by the Cohen Foundation features Dr. Spector here: https://vimeo.com/389039645. His full 2019 LymeMIND presentation above. He opened his talk by sharing it was around his 10 year anniversary since his heart transplant after a severe case of Lyme carditis. He thanked his donor for giving him a second chance of life. The title of his talk was 'The State of the Art' - a detailed overview of his research and focus on developing new treatment for Lyme disease. The entire audience was abuzz after his presentation! More detail of his research and work can be found here: https://medschool.duke.edu/about-us/news-and-communications/med-school-blog/lyme-study-uses-drug-discovery-methods-have-fueled-cancer-breakthroughs
After hearing the news of his sudden passing, a picture came to my mind of him running a relay race, I remembered he was a marathon runner, he spoke of how he loved to run, he had shared in his talk that he was still running but transitioned to half-marathons. The picture I had of him was in the middle of the relay race, he is running hard with beads of sweat on his brow - he runs up to each of us and he flashes a smile as he passes over a baton, he also raises a hand for a 'keep-it-going' high-five. He says 'you've got this, the race isn't over yet, don't give up, we're closer to the finish line than ever before.' Each of us has been given the baton of Hope - we all have a part, a role in speaking out and taking meaningful action within our unique circle and sphere of influence, to be instruments for change. So we keep running the race which is set before us, for those of us who aren't seasoned runners, it's ok to slow down the pace, to rest when needed and keep going as we are able..as long as we move forward. Neil Spector ran an incredible race on earth, he was a special light and now he counts on each of us to collectively keep going with determination and courage - one step closer to the finish line. With tears and thankfulness for Dr. Neil Spector, we say goodbye. Our deepest condolences to his family. By Sue Faber, LymeHope
'Learning to Ride the Wave'
This is such a powerful video of an Alberta family as they faced challenges navigating 'uncertain waters' of Lyme disease with their son. In the midst of oceans of conflict and controversy, 'feeling like we were watching our son sink below the water while the life-guards on shore were respectively debated whether he was actually drowning..' And then there was a break-through..and Hope.
Lisa (the mom) has now been called as a patient advisor for Alberta Health services and continues to speak out, sharing the story of their family, and furthermore, opportunities to engage with healthcare providers - opening new avenues for partnership and collaboration in the midst of uncertainty. Her comments below the video:
"I have the honor of being a patient advisor for over a year now with Alberta Health Services, and the chance to partner with multiple Health Care Teams on a few projects. Last year, I was asked to be part of a project upon where 10 digital stories were created, and my family's story was selected to be one of those.
The purpose of the video was to share it to Health Care Employees in our Province, and discuss 3 questions at the end in hopes to gain nuggets of wisdom that they can use when practicing / working in their own professions.
While it is difficult to be vulnerable like this we hope that by sharing our story, others will be inspired to keep learning, advocating and finding the health care they need for themselves/ their loved ones. Having something "uncommon" in our health care system is very difficult, no matter what the disease and we wanted others to know they are not alone. Keep knocking on doors to find Health Care Providers who want to work with you- and learn with you.
We are forever grateful for our Health Care Providers who have kept open minds and have been willing to research, collaborate and work together." - Lisa
Don’t let Lyme get worse
'To fight ticks and their diseases, a “Manhattan Project” will be needed, says the author of a new book on Lyme disease - Mary Beth Pfeiffer'
Mary Beth Pfeiffer, an investigative journalist from New York State, is author of “Lyme: The First Epidemic of Climate Change” (Twitter @marybethpf).
Excerpt from article in the Pittsburgh Post Gazette:
'Beyond its huge growth overall, Lyme disease is taking a pernicious toll on children — those 5 to 14 years old are in the biggest group diagnosed, led by boys 5 to 9. These children may suffer joint pain, fatigue, light sensitivity, headaches, gastrointestinal problems, depression and difficulty learning — problems that are often attributed to psychological conditions, passing flus or growing pains. In six years of investigative reporting on tick-borne disease, I have spoken to dozens of mothers in the U.S. and other countries whose children have lost months and sometimes years of childhood to tick bites.'
We spend so much time thinking we don't have the power to change the world. We forget that the power to change someone's life is always in our hands. Change-making does not belong to one group of people; it belongs to all of us. You don't have to wait on anyone to tell you that you are in this. Begin. Start by doing what you can with what you've got, where you are and in your own way. - Poet Cleo Wade
Dr Willy Burgdorfer - Lyme Disease Pioneer - discovered Borrelia burgdorferi (1932-2014)
Interview with Dr Burgdorfer
Dr. Willy Burgdorfer was best known for discovering the spiral-shaped bacterium that causes Lyme disease, which was named Borrelia burgdorferi in his honor.
The u-tube video below is footage from the documentary on Lyme disease - UNDER OUR SKIN.
'The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing. Serology has to be started again from scratch with people who don't know beforehand the results of their research. There are lots of physicians around who wouldn’t touch a Lyme disease patient. They tell the nurse, “You tell the guy to get out of here. I don’t want to see him.” That is shameful. So [this] shame includes physicians who don’t even have the courage to tell a patient, “You have Lyme disease and I don’t know anything about it.”
Extended Trailer to 'Under our Skin' - Lyme Documentary
To order this movie please visit: Under our Skin Website:
My name is Daniel Stimers and I am 11 years old. I have been battling Lyme disease since birth. I was finally diagnosed with Lyme in March of 2014, by a doctor in the U.S. when my symptoms started to get worse and I would get awful dizzy spells and painful headaches as well as random pains. My mom also has Lyme but the difference between my Lyme and my Mom’s Lyme is that mine is congenital and my Mom’s is from a tick bite.
Last year I started the Lyme Education Team (L.E.T. ) primarily made up of elementary school students ready to join the Lyme disease movement. Our goal is to make schools, towns, and citys across Ontario more knowledgeable about Lyme Disease. We raised $240 at our first Lyme awareness day at one school and hope to reach more schools this year. The Lyme community now has one more Organization helping spread awareness and educating people about prevention and treatment.
In terms of awareness I have posted an Introduction to Lyme Disease video on YouTube and am in the process of making new videos. Lyme Fact Fridays and The Best of David Skidmore (Author of Lyme Loonies) will soon be appearing on my channel (L.E.T Ontario). I will be speaking before my town Council and making an appearance on Rogers’ Georgina Life show in May in support of Lyme awareness month. If readers would like me to speak about Lyme disease at a school or business or at an event please email LymeTalkOntario@gmail.com.
Having lived through Lyme and seen first hand what Lyme has done to my family, I want to prevent it from happening to another family. Please join me, my team, and many other organizations as we work to spread awareness and educate as many people as we can.
The Canadian Lyme Song
Please take the time to watch one of the most inspirational speeches at VOCAL 2017 by advocate Ethel Nalule.
18 years old. Articulate, strong, courageous and determined to speak, to be heard and to make waves in what sometimes appears to be an endless ocean of apathy.
However, our collective voices are making a difference and we will overcome. Thank you Ethel.
Dr Miller is an experienced retired Mayo clinic trained physician who practiced Internal Medicine and Rheumatology in San Antonio for 40 years and worked as clinical faculty at the University of Texas Health Science Centre as Full Professor. This short and informative 4-part series is certainly a worthwhile watch.
He became interested in Lyme disease after his daughter in law was diagnosed with MS/ALS at the age of 43 and as he started to ask questions and connect the dots - he started to dig further into the clinical and scientific literature. He discovered that she was actually suffering from Lyme disease even though her Lyme test was reported as negative. He delves into the issues surrounding the current Lyme testing - used both in the US and in Canada - which is a two step process and is failing many patients resulting in misdiagnosis.
The first step is an ELISA test - if this test is negative, the second test isn't done and the patient is declared to be negative. Dr Miller reviews the reasons why the Lyme testing is inadequate and more comprehensive testing needs to be done with an understanding of how to properly interpret the findings. He has become vocal in speaking out and educating other doctors and frontline practitioners about what he discovered as a means of preventing other patients from being misdiagnosed.
Dr. Miller is an amazing physician with a desire to reach out and help as many others as possible - which indeed is what we all must do when we discover important truths that have the potential to impact the lives and futures of many.
Our Tree of Hope and Strength
Exactly 1 year ago today I put my little boy to bed and he woke up a completely different person.
Although he was bit almost 6 months prior- it was 1 year ago today when it all actually hit the fan with Lyme disease.
1 year ago today he woke up limping with sore joints.
I remember he called me at recess because he had tried to go to school and got so weak when he fell down at recess he couldn’t get up.
Later that day he developed fevers, swollen cervical, auxiliary and groin lymph nodes. And on and on the dozens of symptoms came.
Although he isn’t as bad as he was a year ago- He has been in pain every single day for one year. I can hardly fathom. This boy has been fighting so hard.
And I couldn’t be prouder...
When he got sick I had just set up this Christmas tree in our room. He was unable to get to the bathroom in the middle of the night without help for months, and months. So he slept at the foot of our bed with this tree as his comfort.
When we took our Christmas decorations down he wasn’t better, so he asked us to leave the tree up until he wasn’t sick anymore.
We named it our tree of Hope and Strength.
We put all the cards in it that he was given. We promised we wouldn’t take it down until he was better.
Although he was able to move back to his room soon after he started having IV antibiotics- we kept the tree up in our room as a promise to him.
And a reminder for Marty and I to continue to fight for hope. Every day.
I can’t tell you how badly I want to put this tree away, because it will mean our boy no longer suffers.
Until that day, this Tree will light our hope into the darkness of the night❤️. - Lisa P.
What we know to be true from these personal testimonies is this: there is a Lyme crisis all across Canada, which only continues to grow. We also know that the patients who suffer - they are the experts.
The Federal Lyme Framework which was finalized in May 2017 neglected to include the Voice of the patients and indeed, this patient voice is absolutely critical to understand the complexity of Lyme disease. Evidence based medicine invites patients’ values and preferences alongside clinical judgement and relevant scientific evidence - who better to ask than the ones who suffer each and every day.
If you want to understand the Truth about Lyme disease, please, take the time to watch these videos and step into the stories of Canadians who were brave to speak out with Hope that their collective Voice would be heard, acknowledged and Action taken. Thanks to CanLyme for recording these important Testimonies.
For those of us who are 'LymeMom's' - we have a collective resilience, intelligence, warmth, sphere of influence, empathy, passion and courage - which I believe will be integral to meaningful change for not only our own precious children, but for all Lyme sufferers in Canada and worldwide. In the past few days I've heard from several LymeMom's who are working hard to advocate for their children and at the same time - in the very midst of their struggle, they are reaching out to help others.
I’ve always felt that when there is a pervasive atmosphere of suffocating darkness, hopelessness, apathy or denial – pitch black, and then one little candle is lit – everything changes. In the blink of an eye.
One tiny, courageous little beam of light – is very, very powerful. When that little resilient flicker is compounded by others, it becomes, stronger, more powerful, eye-catching and indeed the flicker quickly transitions into a powerful beacon.
As the flame burns brighter and stronger, the cold, numbing, isolating darkness is suddenly replaced by Hope, a warmth, a clearer vision, a path forward – perhaps a small path, a narrow, uneven path but never in history, has something historically important ever changed, with so much at stake, without the raw grit, determination and courage of the light carriers, the light seekers and the light followers – pioneers compelled by righteousness, indeed a call – willing to dare step onto the path where only a few have gone before.
And so, we go, we move forward together - for the sake of our children and future generations; cautious, optimistic, terrified, determined - we cheer each other on, we wipe each others tears, we advocate for others, for ourselves. We pick up the phone and say 'I am here for you, you are not alone'. We laugh, we weep, we push, we wipe away tears, we hug, we Hope. Because, we must. We will overcome and the Lyme Mom army will only continue to grow, unite, strengthen and multiply, until one day..we will triumph.
Sue Faber - LymeMom, Co-founder Lymehope
Please watch Madeleine's speech at the National Lyme Federal Framework Conference.
Her talk starts at 1 hour and 33 minutes. 1hr33min
Letter to the Minister of Health
Hope is dangerous. There is so little of it and losing what little there is, over and over, is devastating. To be unrecognized, invalidated and unhelped by one's own society is soul searing and defeating worse than the disease.
My whole family has been devastated by repeat infections of tick borne disease. There has been no validation or treatment beyond the first diagnosis on my daughter, at age 5 with a tick and bullseye rash present. Symptoms have been ineffectively and inappropriately treated now and then, often after a diagnosis of a mental rather than physical disease, leading to iatrogenic suffering on top of what the disease inflicts.
I have watched my son and daughter in backward growth, devolving rather than developing, suffering greatly the whole time. Our lives are almost at a standstill. Those of us living with Lyme and co-infections for decades, identify with comparisons to lepers. The New Lepers. That has gone as far as having a dental hygienist refuse to clean my teeth.
It would take a long time and considerable effort to describe all the ways in which (and to what degree) we have suffered and continue to...
It feels like a waste of time and of the minimal energy that we have for the basic tasks of living to attempt to convince people who apparently refuse to see or hear us.
We do not have the wealth required to go out of country to seek treatment. I cannot help my son and daughter to get relief, to regain their health and their lives and I am getting too old to do so. The pain I feel when I see how much they suffer, how little life they have, how limited their future, and realize again how little I can help them, is a pain that is almost impossible to describe, a mother's pain. What will happen to them, to us, when we cannot maintain ourselves and our lives? Will my family join the homeless? It is a nightmare for a parent...
My country, the medical profession in fact the entire system has let all of us down, betrayed us, abandoned us to are painful fate. There are many others, ethnic groups like First Nations, now also the great number of addicts who began as patients, taking the prescriptions they were told they must take only to end up vilified and abandoned, who have suffered a similar fate. This does not nullify our suffering or all the potential, the LIFE that we have lost.
We had hoped, after the Conference last year that I participated in, that a Framework would be created that WE participated in meaningfully. This does not seem to us to be the case at all. The amount of money going to a loosely defined goal of 'research' and no mention of help for those presently afflicted, feels like a betrayal or more of the same denial and and tossing aside that we have lived with for so long. Compared to very rare diseases like Zika, that have what seems like vast amounts of money given for research, treatment etc., it feels more like a slap in the face to the thousands of us whose lives have been destroyed.
There is nothing that we can see that would help those of us so severely affected, not in time, not before our lives end in one form or another. Despair is a dangerous state. Will we vanish into the penumbra of institutions or homelessnesss, our lives effectively lost?
As I said at the end of the Conference, did we not learn from the AIDS/blood scandal? We have been told at times that we can donate blood so the blood supply may once again be contaminated. There are people living full lives now with HIV who would have died back then before research, treatment and support that occurred after AIDS was fully recognized for the ravaging deadly epidemic disease that it was.
That is true of the many thousands of us ravaged by tick-borne disease, invalidated and even ridiculed as mentally ill by those who should be caring for us, healing us, instead being given drugs that are inappropriate, misdiagnosed or simply being told we can't possibly be sick as Lyme does not exist in Canada (yes we still get that).
Hope is hard to come by, and life is near impossible without it...
Shared with her permission.
Please watch Madeleine's speech at the National Lyme Federal Framework Conference.
Her talk starts at 1 hour and 33 minutes. 1hr33min
My name is Eryn. I am a 17 year old teenager who has been robbed of my life. In August of 2014, I got a “summer cold” which rapidly developed into a severe debilitating illness. I had been a kid who constantly performed in plays and rarely spent time at home, because I was excitedly living and enjoying life. I am still that person, deep down, but I don’t feel like it anymore.
I am a 17 year old teenager who spends every single day trapped in my bed. I haven’t left the house in 5 months. I can’t go to school, I can’t go out to see friends, I live in constant pain and agony. I cannot walk, I cannot push myself in my manual wheelchair. Most days I struggle just to sit up. I have seizures. I have migraines so bad I have to wear sunglasses in the dark. Yet no doctor’s want to help me.
I am constantly told by medical “professionals” that I am making this up for attention. I am told that I simply need to see a psychiatrist, hang out with friends, and exercise more. What great advice, telling a person who can’t even go to the bathroom on their own that they need to exercise. The medical world has robbed me of my life, shackled my arms to my legs, and thrown me in the ocean and left to drown. Or more literally speaking, thrown in my bed and left to die.
Every single day I am fighting for my life. I am fighting to breathe, fighting to stay alive. It would be so much easier to give up. All the doctors around me have given up already. They gave up without even trying to help. They left me in my room to fend for myself, because apparently they don’t believe that I’m worth fighting for. I am still human. I am a person who lives every day in PAIN. I am SUFFERING. I am DYING. My body is a prison cell that I cannot escape from, and I have been wrongly imprisoned. I have done nothing to deserve this wasted shell of a life. This isn’t a life. No one should be forced to call this hellscape a life.
I urge you, PLEASE help me. PLEASE help me and others like me going through the same thing. I am not alone, I am not the only person fighting this daily, neverending battle. Both my siblings are fighting this disease, my aunt is fighting this disease, my cousin is fighting this disease. Lyme Disease is NOT RARE. It is COMMON and the ignorance from the medical profession is CRIMINAL. Lyme Disease is NOT a fake disease. It is a REAL, DEBILITATING, CHRONIC DISEASE. It is a demon that haunts thousands upon thousands of people every single day. We should not be forced to wait for years for doctors to catch up. We are HUMAN BEINGS and should be treated as such. I should not be forced to live my life this way. No one should."
Kurtis Colman: Professional Dancer, Advocate: 'Don’t Give Up without giving it Everything you've Got.'
My name is Kurtis Colman. I’m 23 years old from Windsor, Ontario. Linked with this post is a short documentary I was blessed to be a part of that sheds light on my story. But this story isn’t just mine; this is the story of thousands. Compared to some, my obstacles have been blessings. As much as this has impacted my livelihood this isn’t the darkest side of the Lyme Crimes.
This is a brief story expanding upon the events leading up to what you will see in the documentary attached to this post:
Before becoming ill I was a dancer. I had danced from the age of 7 up to 21 at a high level of athleticism. Competing for 7 years on competitive teams and also participating in a dance program at my high school had me dancing at an average of 30 hours a week. When I would compete it would be a weekend of dancing up to 16 hours, which I gladly went through with energy and bliss.
After high school I moved to Los Angeles in pursuit of furthering my craft, where I would be dancing up to 25 hours a week. In search of obtaining a work visa, I then moved to Toronto where I participated in 5 dance groups. Through my connections I was able to dance for Paula Abdul, be a lead in a music video and dance in the background of an episode of Once Upon a Time. One day while dancing in an intense rehearsal my arm gave out on me, although I was in top physical condition.
Slowly symptoms began appearing and consuming my physical, mental and emotional health. I desperately tried to cling to what I’d loved doing most for 14 years but suddenly didn’t have the energy to even get through an hour rehearsal. With so much anger, confusion and pain, my dance career had ended. I didn’t know what was wrong or if I was developing a mental illness.
I lived in fear of telling people what was really happening to me and slowly disappeared from some of my closest friends at the time. This was a very lonely time in my life. As I looked for answers every way I knew how, with my mother doing the same, I took on a job as a host for a restaurant in Toronto (a very expensive city to live in). One day during a shift suddenly my whole nervous system simultaneously tightened, burned and hurt terribly. I had lost all control of my body and emotions. When I went to the hospital I was stuck in the fetal position crying uncontrollably and was paralyzed. When the doctor saw me he told me to take Advil for back pain, and then dismissed me. This was the last straw. I felt like the only place left to go was home. So, I silently disappeared leaving behind my friends, career, craft and hopes in Toronto. To try and recover, find peace and hopefully… answers.
After moving back in with my parents I began to see a therapist. While no answers came from the health system I knew I had to do something. So I signed myself into a rehabilitation facility, following my therapist’s advice. While finding some mental recovery and grieving my past, I was finally diagnosed with Fibromyalgia. After attempting some pain relieving and anti-anxiety medication I found that they only helped with maybe 5% of the symptoms I was experiencing. After completing the program my mother saved my life by finding the real answer to my suffering: Lyme Disease.
After hearing my story a friend of mine who is a film student got a group together to film this documentary for their university class.
I have come across much, much more information and a lot has happened since the filming of this documentary last year. But this would be a much longer story if I shared all of that as well.
One important event I will share is that a fellow advocate, artist and mother of a daughter with Lyme, Donna Y Jacobs and I are collaborating on a show for VOCAL (Voices of Canadians About Lyme) Ottawa and Toronto (Click VOCAL link above for more info). We will be infusing dance, art and spoken word into a story that communicates the current suffering of people with Lyme Disease. It is our dream that we affect people’s hearts to bring much needed change to this systematically ignored pandemic.
Thank you to the Lyme Letters blog for this opportunity. We need blogs like this so much.
To Fellow Lyme Sufferers:
Please stay strong and have hope that things will get better. Because they will. Don’t give up without giving it everything you have, and I promise to do the same. There’s always a way.
To the General Public:
I hope that you educate yourself so that you and your loved ones don’t have to go through what we have. We may put on strong faces but we need your help. We can only do so much, most of our energy is just fighting to at best, have a normal day, at worst, stay alive. Anything you can do to help bring awareness to others is urgently needed.
To the Canadian Health Care System and Government:
Please have compassion for those suffering. We are not your enemies and want what you want: Every Canadian to have the opportunity to live free of health issues. I hope the reign of ignorance, greed and whatever other poor justifications will end soon. There is much work to be done and the sooner the better. The problems continue to grow as the solutions remain hidden. For you and for us, the sooner the better.
I know one day we will see the truly wonderful human beings you really are and you will see the same in us.
Love & Light
Section two of the Canadian Charter of Rights and Freedoms guarantees the right of all Canadians to voice their opinions on any subject they feel the need to voice an opinion on without fear of recriminations. There are limits, of course. You can't libel someone, spew hate propaganda, or engage in obscenities. But what you can do in this country - with the Charter at your back - is publicly and vocally disagree with any government policy or institution you feel is having a negative impact on your life or the lives of your fellow Canadians.
I mention this because in the years since I wrote Rain on a Distant Roof: A Personal Journey Through Lyme Disease in Canada I've had the opportunity to connect with a great many Canadians suffering from Lyme disease and related tick-borne illnesses. Many have told me about their struggles with both the disease itself and with a healthcare system that is at best unresponsive to their needs. For many Canadian Lyme sufferers that system has been the source of increased suffering and, in the worst cases, outright humiliation.
While some Lyme sufferers have been very vocal about their struggles, many more have chosen to remain silent. And always they give the same reason: They fear that if they publicly criticize their doctors, health authorities, or anyone else for failing to provide them with a satisfactory level of care that they will be subject to exactly the sorts of recriminations that the Charter makes illegal. Getting blackballed by their doctors is often their greatest concern even in cases where they feel those doctors are failing to help them in any meaningful way.
I'd like to draw your attention to an initiative that has recently caught my attention. Sue Faber, a registered nurse who herself has had a nasty battle with Lyme disease, has instigated a letter writing campaign through which she hopes to collect 10,000 letters from Lyme disease sufferers, their caregivers, and anyone else interested in seeing improvements in the way Lyme disease is treated in this country. The plan is to hand deliver these letters to federal health minister Jane Philpott or, failing that, to hand deliver them to her constituency office. But they will be delivered.
This letter writing campaign gives Lyme sufferers an excellent opportunity to be heard by a someone in a position to provide help. And the more people who participate, the better the results are likely to be. The federal health minister needs to hear the stories that I have been hearing for years and she needs to hear just how many of those stories there are. There is a perception at the highest levels of public health that very few people in Canada have Lyme disease largely because a vocal minority has been speaking on behalf of everyone. It's now time for everyone who has been silent to speak up. It's the only way to ensure that things are going to change for the better.
Anyone who is nervous about spilling their guts to the federal health minister just needs to remember this: A federal minister is one of the least likely people in this country to stomp on your Charter rights. As career killers go, that's a pretty big one in political circles. So tell your story loudly and proudly. Say what you think about the way Lyme and related diseases have been handled in Canada. In standing up for your own rights, you are standing up for the rights of all Canadians. And if the projections for how quickly Lyme disease is going to spread across Canada are even remotely accurate, then it's safe to say that all Canadians - whether they know it or not - need you to stand up for improvements in healthcare that will impact a significant number of Canadians within just a few years.
Vanessa Farnsworth is former horticulturist, journalist and long-time resident of rural British Columbia. She is the author of Rain on a Distant Roof: A Personal Journey Through Lyme Disease in Canada and her writings on Lyme disease and related tick-borne illnesses have been published in magazines and on blogs across Canada.
To order Rain on a Distant Roof: A Personal Journey Through Lyme Disease please click on the book cover and the link will bring you to Amazon.ca. This is a must read for all Canadian Lyme Sufferers, their loved ones and friends who are wanting to learn more and understand this devastating disease. I am so thankful for Vanessa, her advocay and her participation and support of the Lyme Letters Campaign. Please click on link below for more information on her important work.
Dr Sin Lee - Pathologist - Director of Milford Molecular Diagnostics, Milford, Connecticut ' 'Perhaps, the Lyme revolution in medicine will be initiated by a Canadian Visionary'.
I learned about Dr Sin Lee while reading an article in Huffington Post written by Mary Beth Pfeiffer - investigative journalist. http://www.huffingtonpost.com/entry/5873ef2fe4b08052400ee537?timestamp=1483994986602
As I read this fascinating article I saw that there was something very special about this doctor, a molecular pathologist, a researcher, a truth-teller. He has published several times in scientific journals around the world. It was obvious to me that he was on a quest for truth, a quest to speak out, generate discussion and to ask much needed questions regarding the ongoing rhetoric surrounding Lyme Disease - specifically the two-tier testing.
I decided to contact him and see if he would take the time to critique another journal article which had been published in December 2016 and written by Canadian Public Health Department: 'The Accuracy of Diagnostic Tests for Lyme Disease in Humans, A Systematic Review and Meta-Analysis of North American Research'. http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0168613
Dr. Lee kindly responded back and we spoke on the phone a couple of days later. What a gentleman. I felt so honored to engage in conversation with this expert - that he would take the time to talk to me. He was kind, curious, intelligent - brilliant in fact, and no-nonsense. I asked him if he would read the above article and respond. Three days later he did. His rebuttal can be found here - posted to CanLyme website: https://canlyme.com/2017/01/31/canadian-tax-payer-funded-lyme-research-not-good-value-for-dollar/
Dr. Sin Lee has now been added to my book of modern day medical heroes. What I found so incredible is that he actually earned the designation FRCP-C (Fellow of the Royal College of Physicians Canada) in 1966, and later was on the faculty at McGill University in Montreal! Now how awesome is that!
Just a couple of days ago, Dr Lee wrote me back again..with these words.
'Modern American medicine was initiated by Dr. Osler from McGill who brought his vision to Johns Hopkins. Perhaps, the Lyme revolution in medicine will be initiated by a Canadian visionary'.
Sin Hang Lee, MD graduated from Wuhan Medical College in China. After a residency-fellowship at Cornell-New York Hospital and Memorial Hospital for Cancer, Dr. Lee was certified by the American Board of Pathology and obtained the F.R.C.P. (C) degree by examination in 1966. He was on the faculty of McGill University, then Yale University from 1968-2004 while practicing hospital-based pathology. Dr. Lee is currently the director of Milford Molecular Diagnostics, Milford, Connecticut. Dr. Lee has developed and published routine Sanger sequencing-based diagnostic methods for HPV, Neisseria gonorrhoeae, Chlamydia trachomatis, Lyme disease borreliae and BRCA1/2 mutations implementable in community hospital laboratories.
Persons with Lyme disease, and their families can be faced with a devastating set of circumstances if the bacterial infection if not caught early.
The current health care system in Canada is set for failure when it comes to the all important early diagnosis, and once the disease has been allowed to disseminate unchecked or insufficiently treated early on, the late stage of the disease is completely mismanaged from coast to coast across Canada. Worst of all there is no mechanism to track the disease and it’s cost to society because the medical leadership deny the existence of chronic ongoing active infection despite the abundance of evidence based published peer-reviewed science.
Those medical leaders in Canada have for decades owned all aspects of this disease and have made a mess. Our tax payer funded Canadian Institute of Health Research (CIHR) continually funds indirect research that uses the same poor data that got us into this mess in the first place. Poor data in equals poor data out. It is a telling situation that CIHR stresses on one hand the importance of involving patients and their chosen experts at the earliest of stages yet we have been continually denied access to research direction and design relative to this disease. After the fact token review does not equate to collaboration.
Canadians must be alarmed. This is the fastest spreading infectious disease in the world and is occurring at rates that far exceed other diseases including breast cancer. We must stand together to insist that our medical leadership follow ethical and collaborative standards and that they stop making claims that are factually non-provable (ie. These patients are sick with something but it is not Lyme disease).
All Canadians need to be proactive and force the hand of those people who draw large salaries from our tax dollars to cease their exclusive ways and become completely inclusive and collaborative. Our provincial and federal legislators must set up appropriate oversight or laws if necessary that include patients and their experts. The notion that patients and their experts have no place in discussing and directing diagnostics and treatment has no place in healthcare and must stop as it is a recipe for continuing what has shown to have been a disaster for tens of thousands of Canadians, and these numbers continue to grow.
The Canadian Lyme Disease Foundation works with scientists and medical experts on several continents. It is time we were at the table for all Lyme disease diagnostic and treatment discussions, policy decisions, and research recommendations federally and provincially.
Jim Wilson (West Kelowna, BC)
President and Founder; Canadian Lyme Disease Foundation
Jim Wilson has been involved in networking with Lyme victims and providing information for over 20 years. He contracted Lyme disease in 1991 in Dartmouth, N.S. and his daughter contracted Lyme disease in 2001 in the Okanagan Valley of British Columbia.
With a background in investigating medical malpractice and legal liability matters, Jim provides unique insight into medical research from a perspective of conflict of evidence and works with medical and science experts around the globe.
Sue Faber - Founder of LymeHope and Lyme Letters Campaign - 'The Domino Effect'
I am so thankful for all the support to start this Lyme Letter Canada Campaign. We are at the beginning of what I believe to be something Powerful, a movement to affect change. I am excited, I am nervous but ultimately I am at peace and feel so clearly that it is the right thing, the necessary thing, to do.
I felt a clear call to get this started but the reality, is, I'm not that well. Many of us aren't. But, I have learned over the last year, that this illness, as debilitating as it is sometimes, can also be a gift.
A gift because is has brought me together with incredible men and women across Canada who share my suffering and also share my purpose and my Hope. I feel your love, your support and your willingness to make this happen. Lyme Letters Canada is about ALL of us, each and every one. United, Resilient and Strong. And so, it begins..
Write something about yourself. No need to be fancy, just an overview.