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
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.
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.
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