Hello. My name is Jennifer Kravis. I live in Oakville, Ontario. Thank you for having me here today.
I used to be a lawyer and a bank executive, but 11 years ago, at age 36, I was suddenly debilitated and bedridden by a mystery disease that took me hundreds of thousands of dollars and five years to determine was Lyme disease.
I had to go to the U.S. and pay even more money. I spent two years getting continuous antibiotic treatment, including a PICC line, which gave me my quality of life back, and my family's as well.
I still cannot work, but I advocate for Lyme disease now. There are five people in my family with Lyme, and my dog has it as well, but my dog was treated promptly with compassion and care, and he got five months of antibiotics, and he made a full recovery. My niece got early treatment with a bull's eye rash after seeing four doctors . The rest of us—me, my mother, and my two daughters—are permanently affected. As a mother, I live with the guilt and horror of discovering I probably infected my two kids. They both have chronic Lyme and multiple co-infections. One has encephalitis causing neuropsychiatric issues and arthritis in the spine, and she's 14 years old.
In the last week I've spent many hours thinking about what I could possibly say to you in 10 minutes to convey to you the suffering, the despair, the abuse, the financial ruin that is sweeping this country.
I can talk about my full story. I was financially secure, a Bay Street professional. I had money, connections, and access to the very best health care, but it did not protect me and my family, and it will not protect you.
I could talk about the 40,000 Canadians who signed our petition or who wrote thousands of Lyme letters for Minister Philpott, letters that bring us to tears on a regular basis. But on Thursday you will be told that petition comments are really about ticks, and stories are anecdotes not evidence.
I could talk about the independent, professional benchmark survey we did in Canada to ask how many people were affected by Lyme disease. The survey asked, have you or someone you know in Canada been diagnosed with Lyme disease? The answer is between 2.8 million and five million people.
Public health numbers are a joke because people are denied testing and not counted. People get false negative results, and they are not counted. People get positive results. They are told they are false, and they are not counted. People get positive tests from international labs, and they are not counted. Finally, those who, by some miracle know about Lyme, convince their doctor to order tests, pass the first tier, pass the second tier, prove they were in an endemic area, get to the doctor in time, get a bull's eye rash, and have the doctor visually inspect the bull's eye rash. Even the majority of those cases are not counted, just as Sue Faber talked about.
I thought about asking questions. Why has public health ignored 35 published, peer-reviewed tick studies compiled over the past 27 years by an Ontario researcher named John Scott? Why has public health not warned first nations that they are living in hyperendemic areas like Kenora, Ontario, where John Scott estimates ticks have been established for 50 years? Why have our doctors never heard of co-infections?
My 13-year-old daughter has Rocky Mountain spotted fever. This is a disease that could be fatal in up to 75% of untreated cases. I had to fight for this test, and when it came back positive, my GP fired us.
This leaves my going back to my original question, which is, what could I possibly say to you to convince you something tragic, shocking, and disturbing is happening in plain sight?
I decided I would speak about the truth, the real truth, the truth that nobody wants to talk about or believe. The truth is the bill was great, but the final framework is useless. It is inaccurate. It's going to cause harm to Canadians. The process was mangled by some powerful, unethical, and self-serving interests.
The truth is we have a massive global pandemic, one that is not easily prevented by pulling your socks up and staying in the middle of the paths. The truth is people are so desperate to get life-saving antibiotics they beg their vets, and they beg their doctors to try to get six weeks of antibiotics in a desperate attempt to avoid lifelong disability. The truth is there's a secret network of Canadian doctors who risk their licences to treat their patients. The truth is Lyme patients are horribly abused by doctors, but if they file a complaint to the college, they are harassed and blacklisted. The truth is millions of Canadians, including first nations and children, are walking around with the wrong diagnosis. The truth is U.S. doctors are getting paid by us to learn about this disease, instead of our own doctors gaining this knowledge and expertise. The truth is we have thousands of parents who live in agony and despair, hiding in their homes with sick, disabled children who scream and cry, have seizures, and are in horrific pain. The truth is people with bull's eye rashes in every province every day are being turned away and denied treatment, sent home to wind up disabled in excruciating, unrelenting pain.
Some doctors say, “I'm sorry, I can't help you; I will get in trouble and I have to protect my family over yours.” Some doctors say, “I'm not allowed to help you, but if you go to the U.S. and get treatment, you will get better.”
Many doctors say, “I guarantee you don't have Lyme disease” and, in fact, they are correct, because the system at every stage guarantees it's virtually impossible to get a Lyme diagnosis. When the Canadian test is negative, it is called gold standard; when the test is positive, it is called false; and when the test is from out of the country, it is called garbage, except if it's negative.
The truth is that surveillance is a sham and a waste of money, because ticks are dropped everywhere by migrating birds; and surveillance is not progress. It is a tool used to deny the disease. The truth is that some people don't get their Lyme test back from the national lab for months, and too many people are told their test results are lost.
The newest weapon in the Lyme war is anti-microbial resistance, which denies very sick Lyme people life-saving treatment or the dangerous side effects of antibiotics. The truth is that people with arthritis, syphilis, Crohn's disease, tuberculosis, relapsing fever, rheumatic heart fever, rosacea, MS, and acne are given months and years of antibiotics without hesitation; and cancer patients are given the choice of drugs with side effects so dangerous they can kill them.
Let's review the so-called facts of Lyme disease that we are told by public health and infectious disease specialists: one, our testing is fine; two, ticks must be attached for 24 to 48 hours to transmit the disease; three, only black-legged ticks carry Lyme; four, your risk of contracting Lyme is very low, so don't worry, and virtually zero outside of endemic areas; five, you can't have Lyme if you don't get a bull's-eye rash; six, two or three weeks of one antibiotic is all you need to be fully cured; seven, if you have any new, lingering symptoms, you have a new disease, which is called post-Lyme-treatment disease syndrome, which looks and feels exactly the same as the infectious disease you just had three weeks earlier; eight, we are told there is no scientific evidence of persistent infection or that long-term antibiotics help, and we are told there's no scientific evidence of congenital transmission.
We are told, “We don't know what all these people have, but it's not Lyme” and we're told that people fixating on Lyme could miss the chance to get a real diagnosis.
Finally, we are told other countries' tests, all of them, are invalidated, from for-profit labs, not FDA approved, purchased positives, garbage, or run by profiteers and quacks. But the truth is every single one of those sentences is untrue.
The truth is that doctors, patients, and the public are being misled, and we need you to do what no one has been able to do—despite fighting for decades—not advocates, not Bill C-442, not celebrities, not politicians, not journalists, and not even an international organization of medical doctors and scientists.
We need you to ask yourselves if it makes sense that tens of thousands of Canadians have a shared delusion about their own health and welfare, their body, and their symptoms? Does it make sense that tens of thousands of kids who've never met are suffering from a shared psychiatric disease that causes them to fake symptoms? Does it makes sense that previously rational, healthy adults are conspiring to obtain antibiotics, which if abused, give you a stomach ache and a sunburn. Does it make sense that desperately sick people bankrupt themselves for treatments that provide no relief to them?
We need you to ask the questions that always reveal the truth. Who benefits or profits from the denial and suppression of these diseases? Who benefits from patients missing the early cure with a cheap generic antibiotic, and wind up labelled with fibromyalgia or an incurable neurodegenerative disease like MS, ALS, or Alzheimer's. It's not patients, it's not taxpayers, it's not families or kids, it's not businesses, it's not our health care budget, it's not family doctors or clinicians, and it's not our economy.
The truth is that it is too late for me and my family, because there is no amount of money, drugs, connections, or treatments that will restore our health. We are here for you. We are here for all those Canadians who are so sick and in pain and feel abandoned and are on the verge of suicide. We are here for all those Canadians who will be unknowingly struck down in the parks and in their backyards. We are here because we cannot bear to hear one more story of a child with a bull's eye rash being sent away to end up disabled.
The truth is that Canadians desperately need you to stand up and do the right thing. We need your help. Please help.