Speaking out about Lyme
Speaking out about Lyme
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.
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.