Thank you.
My name is Sue Faber. I'm a registered nurse by profession, with a majority of my experience as an ER nurse. I'm a Lyme sufferer, advocate, and married mother of three daughters who also have Lyme. My husband Andrew has been my rock and has focused me on this unrelenting, exhausting, and often overwhelming journey, which feels to me like mission impossible.
My personal Christian faith is my anchor, and my belief is that God often chooses to use the weak and weary to accomplish his purposes to reveal his power in the midst of what feels like a continuous raging storm.
I'm calling on each of you here today to lace up your sturdiest pair of well-worn hiking boots and join me as I take the lead for just a few moments as your guide. What qualifies me to speak to you today isn't a Ph.D. or a position of authority. My qualifications come from a personal journey into the hazy suffocating shadows of what I would like to call the Lymelands, where those affected by the same plight must band together and unite to survive.
We are the weary, the wounded, and the sick. We find each other, as we have no choice but to look for answers together. We share an illness which is insidious, disabling, and destructive. It is a disease that comes like a thief in the night to snatch away childhoods and steal careers. It is a disease that cripples active contributing Canadians, bankrupts families, and breaks down marriages. It is a disease that, in some cases, has driven Canadians to end their own lives.
I ask you to take the time to read the three Lyme letters, which I have been given permission to share in my brief, to give you a clear and disturbing picture of the reality of the suffering of Canadian adults and children alike. Jennifer and I have been brought to tears as we receive regular phone calls and read letters received through the Lyme letters campaign that I started in January of this year. We now have over 2,500 letters.
These are letters that I am waiting to hand deliver to Minister Philpott, and I truly trust that she will open her doors to receive them very soon. I believe I see Jordan Crosby here today from the minister's office. I hope he will reach out to me and that we can make arrangements for these letters to be passed to Minister Philpott, and for us to speak to them personally.
Parents are horrified and panicked as they watch their child's health disintegrate in front of their eyes. They are writhing in pain, collapsing on the floor, screaming that their brain is on fire. They have paralyzed limbs and bizarre rashes. When they take their child to an infectious disease doctor with positive Lyme tests from the U.S. or even Europe, these patients are flat out told that they are wasting their time and energy on garbage tests. Some families have been messaged that their precious children are being accused of faking or even self-inflicting their symptoms.
We have heard of an infectious disease doctor recently demanding that a child get out of their wheelchair and walk, despite their legs buckling beneath them. Parents are being pressured to commit their sons and daughters to psych wards. Parents are being threatened that they're painting their children with the same paintbrush, insinuating a Munchausen by proxy mental illness. Parents are being forced to do their own research and to sell their possessions to cover the costs of flying their disabled child to expert clinicians outside of Canadian borders. What happens to the families who don't have the money and who don't have the resources?
The reality is that these children indeed are treatable. They have a multisystem infectious illness, triggering an autoimmune encephalopathy. With appropriate and prolonged treatment, which often involves multiple antibiotics as well as other therapies, these children can regain their lives and their hope.
Many parents across Canada believe that their children contracted Lyme disease through pregnancy. I am one of those parents. I will never forget the day I happened upon an article on gestational Lyme disease. I had just been diagnosed with chronic Lyme in Canada. As I read this particular report, I was shocked. Did this mean that Lyme disease could be passed from an unsuspecting mother to her unborn child? This particular case report listed a diversity of clinical manifestations of congenital babies. I started completing a mental check box for each of my daughters. It all started to make sense, and my gut instinct compelled me to get my children tested. With all three girls, Lyme Western blots came back positive from a lab in the U.S., with undeniable evidence of exposure to Lyme. It made perfect sense to me.
All three of my children have been sick since birth with all kinds of unknown ailments that are cyclical in nature—fevers, joint pain, headaches, rashes, abdominal pain, vomiting, anxiety, and OCD. I was an emergency room nurse, and I didn't know what to do, and the doctors kept saying, “We don't know what it is, but just keep plugging along. You're a good mother.”
Later on, one of my daughters actually tested positive—here in Canada, using our two-tier serology—for a European strain. Funny enough, she never travelled to Europe. I also tested positive for a European strain. Also, members, I want to say to you today that I had to lie on the public health requisition to get her tested for the European strain, because the only way they would test her blood is if she had recent travel history to an endemic part of Europe. And guess what? It was positive.
I'll never forget the day I shared my daughter's positive Canadian serology results with my infectious disease, ID, doctor. I looked her straight in the eye and asked her about congenital transmission. She said she knew about case studies on maternal transmission, but she wasn't an expert in the area. She went on to tell me, in her words, that she certainly admired the fight I had undertaken on behalf of my kids. She said I was doing the right thing, and that I contradicted everything that people had been taught.
So where is the reality? I don't know.
To this day I am completely disgusted and frankly outraged that, despite diagnosing me with chronic Lyme in Canada, this expert, whom other physicians look to as an authority on Lyme disease, had been coldly silent to making me aware of the possibility of mother-to-child transmission. I had to figure it out all by myself, without any support from any Canadian physician.
There was a very recent CBC radio interview with Dr. Caroline Quach, who is the president of AMMI of Canada. Dr. Quach was interviewed as an expert in the subject matter and was asked directly by the radio host whether Lyme disease can be transmitted in the womb. Her response was that there is no evidence that this is actually happening and there hasn't been any evidence in humans that this has happened, at least none that has been reported in the literature. She flat-out denied evidence of congenital Lyme transmission. She was speaking out as an expert, and thus her words would hold considerable weight and be seen as trustworthy and an authoritative source of information by her medical colleagues.
I ask you, honourable members of this committee, does this not disturb you as it does me? Denial of truth cannot be accepted or tolerated, not in the past, not in the present, and certainly not in the future. This denial must stop now, and it is clear to me that when it comes to Lyme disease, infectious disease doctors have an alternate agenda, which must be examined. They have clear biases, which must be questioned. They must be held accountable for their actions.
My story gets more disturbing, because when I reached out to my local public health unit to discuss my concerns of congenital transmission, instead of being granted a face-to-face meeting, I was mailed a letter, which stated that both I and my daughter would not be counted or reported as positive Lyme cases in Canada. You see, we presented a rather inconvenient truth to our public health authority, so instead of acknowledging and engaging, they dismissed, denied, and erased us from the record.
Just to reiterate, the number of positive Lyme cases in 2016 did not include me or my daughter, for reasons that escape my comprehension, without any meaningful rationale, and certainly—in my mind—with completely unethical behaviour.
I was also told in the same public health letter that there was no scientific evidence of congenital transmission, so not only AMMI but also our public health authority denied the reality. Could it be that the infectious disease doctors in public health who take a lead on this illness deny the very existence of scientific research that contradicts their rigid dogma?
Yesterday, Jennifer and I had the opportunity to speak with Dr. Njoo, deputy chief public health officer. We asked Dr. Njoo why congenital Lyme transmission had not been mentioned in the federal framework, considering the available body of scientific literature and evidence, including pathology reports, case studies, and an entire chapter written and dedicated in a reference medical textbook, which I have brought with me today. It is quite disturbing that this textbook is no longer available as a reference resource, and in fact Jennifer and I had to find it through used book dealers on Amazon. I will be leaving a copy of this edition with the committee clerk today.
I ask that this textbook be available to the committee and anyone else who wants to learn about the devastating reality. I hope this textbook will be permanently archived as clear evidence of what I have shared with you today.
I also ask Dr. Njoo why the Public Health Agency has not mentioned the June 4, 1998 Canada Diseases Weekly Report, which is included in your brief. It states: “Transplacental transmission of B. burgdorferi has been documented and may be associated with an increased risk of adverse pregnancy outcome.” Why has nothing been done in 29 years to address this concern? There is no Canadian research, no further mention, nothing. Our public health officials are fully aware of this information, yet they choose not to share it. In their silence, they are allowing more children to become infected.
I have more to say, but I am going to close because I realize that my time is up.
Thank you for joining me on this uphill battle. We are still far from the top. I know we must climb to the top, because at the pinnacle of this mountain we will experience a freedom and be able to clearly see the truth. Climbing to the top can be accomplished only by reliance on and trust of those who climbed this mountain, the patients. They, and only they, can speak to their journey with clarity and insight. It is devastating that this strong and authoritative voice was completely left out of the federal Lyme framework. In fact, the voices, testimonies, and pleas of thousands upon thousands of Canadians were clearly blacked out, shut out, and, in essence, ignored.
Despite this failed framework, I still have great hope that this isn't the end of the story, but rather a fresh beginning, a reawakening to the reality of the Lyme crisis, which continues to sweep across our nation. Your decisions and actions on this issue will directly impact the fate of millions of Canadians.
Thank you.