These mothers and their children have suffered for years with severe dizziness, pain, digestive problems, infections and impairment of motor function that doctors were unable to diagnose. Some were forced to bed. A teenage boy has lost all his education. A family was even close to entrusting their daughter to an institution because doctors believed her symptoms were psychosomatic.
Everyone says the mystery was solved when they were tested and treated for Lyme disease and now a group of Ontario mothers and children have joined together to sensitize the transmission of the disease from mother to child before birth.
"Women need to know that this is a possibility." Doctors need to know that this is a possibility, "said Jennifer Kravis, co-founder and director of the advocacy group Lyme Hope. She and other mothers and their children gathered in Burlington, Ontario. to speak with the corresponding CTV doctor Avis Favaro at the beginning of this month.
Kravis states that Lyme Hope is working to ensure that all medical professionals know about Lyme disease and that Canada invests in diagnosis, testing and treatment.
"We fight for our children, and for all children and families who are too sick to talk and hear their voices."
What are the odds? & # 39;
Lyme disease is an infectious disease caused by bacteria that is transmitted primarily by ticks that are found in wooded or grassy areas.
Kravis states that Canadian research shows that 90% of Canadians with Lyme disease have been forgotten. Lyme is a polarizing problem in the medical world, with some professionals questioning available tests and others discussing the effectiveness of current treatments.
There are more strains, depending on where the infection occurs, and just like all bacteria, these strains change over time. Furthermore, the symptoms of Lyme disease are wide-ranging, intermittent and affect many systems of the body. They also mimic many other diseases, including chronic fatigue syndrome, multiple sclerosis, fibromyalgia, and depression. But they typically include fatigue, joint and muscle pain, spasms, cognitive impairment and memory loss, heart symptoms, nervous pain, numbness, feeling hot / cold, tingling, headaches, sleep disorders, digestive problems and stomach and depression or mood swings.
As the infection spreads, the symptoms and damage to the body intensify and can lead to permanent disability, making early diagnosis crucial.
But the diagnosis is not easy. Beyond the general symptoms, there is no perfectly accurate test. A diagnosis must go through a revision of symptoms and history and be supported by a blood test for antibodies. But even a negative test can not rule out Lyme disease.
Lyme Hope is pushing for screening Lyme disease in pregnant women, looking for better tests and using preventative antibiotics if in doubt. They say that mothers can be asymptomatic and continue to transmit the disease. And the child may appear healthy at birth, but show the symptoms months or even years later.
One thing that's wrong with the debate is the rapid spread of ticks that carry bacteria. There were 2,025 confirmed and probable cases of Lyme in Canada in 2017, compared to 992 in 2016 and 144 in 2009.
The women behind Lyme Hope believe they have been bitten by infected ticks before getting pregnant. Some symptoms displayed of Lyme disease before or during pregnancy. Others no. But nobody suspected Lyme.
Kravis, a former lawyer and bank manager, had to quit his job in 2007 when he was weakened by sudden headaches, numbness, tingling, nerve and joint pain, loss of memory, problems with sight and neuropathy in his hands.
She was bedridden for a year and diagnosed at age 36 with fibromyalgia and chronic fatigue syndrome and was told she had an incurable virus. He saw 68 doctors in Ontario between 2007 and 2014.
Kravis began studying Lyme disease and found a specialist in New York. He took antibiotics for two years and in a few days he experienced "dramatic improvements". He also examined the myriad of health problems in his children differently.
He had both daughters tested and both were positive for Lyme disease.
"I thought," How can it be? "This is such a rare disease, what are the odds?" We could not have all been bitten by ticks. "
A lost childhood
Daniel Stimers, 12, says he suffered from migratory pain and severe dizziness and that no specialist could find a cause. A strong feeling in his legs forced him to sit outside the hockey games. Night sweats made it difficult to sleep. He was extremely sensitive to noise and had strong mood swings.
"Dizziness and clumsiness became a problem at school, and my friends counted how many times I fell out of the chair that year.The total was 109", Daniel, who lives in Keswick, Ontario, told the parliamentarians at a table round of education at Lyme Hope last May.
He was born in 2006 full-time but weighs just over 4 kilos. He has shown symptoms since birth, some disappearing but others progressing, says his mother Illana. In 2014, Illana became so full of pain and weakness that she could barely lift a plate from the closet or brush her hair. He had to take a leave from his vet job.
Here's when a colleague raised the possibility of Lyme. All the symptoms suddenly made sense. Illana returned to work in Nepal in 2000.
"There were ingorged ticks that covered most of the animals we saw and managed."
Although I do not remember a tick bite or a rash, he was the only one of his group to get sick and have swollen lymph nodes while he was there. "Within a few months of my return I began to have new and strange symptoms that included many bodily systems and some serious enough to require hospitalization."
The Stimers family turned to an American doctor for tests, diagnosis and treatment. Three years of antibiotics, antimalarials and herbal medications mean that Daniel is now free of symptoms. His lymph nodes are back to normal size, along with elevated unexplained liver enzymes.
Illana is convinced that she transmitted Lyme disease to her son during pregnancy.
"It was heartbreaking, to be honest, to see your child suffer and see him lose his childhood, only to realize later that he could have been prevented if I had been properly shielded or if he had been captured even earlier in me."
The congenital debate
While the organizers of Lyme Hope have no doubts about the congenital transmission of the disease, the medical world is not convinced.
The Public Health Agency of Canada (PHAC) published a scientific review in November 2018 which states that mother-to-child transmission is "biologically plausible" but that there is little scientific evidence that poses a risk to the child.
The Health Canada website also states: "There is insufficient evidence to confirm that Lyme disease during pregnancy has adverse effects on the fetus, and no adverse effects on the fetus have been observed when the pregnant woman receives treatment. antibiotic appropriate for his Lyme disease. "
According to LymeDisease.org, a group of lawyers based in the United States, infected women can pass the disease on to their unborn children.
"Some doctors believe that other types of human-to-human transmission are possible but little is known for sure," says the group's website.
The Society of Obstetricians and Gynecologists of Canada states that it has no position on the impact that Lyme might have on a fetus, although it is undertaking the development of guidelines for the prevention and symptoms of the disease.
Dr. Howard Njoo, the deputy head of public health at PHAC, says research to date is limited and inconclusive on the results of Lyme disease during pregnancy.
"As a doctor, we certainly recognize the impact it has on families and patients compared to Lyme disease, but our job is to look at science objectively, and to draw conclusions and recommendations based on the results. need to do further research ".
But those behind Lyme Hope are undeterred. The group is collaborating with a scientist at Mount Allison University in New Brunswick to test infected mothers and sick children looking for similarities in bacterial DNA and to clarify the transmission link. If there is no correspondence, this indicates that the child has been directly infected with a tick.
"It has long been known in both humans and animals that certain types of bacteria that cause Lyme disease can be transmitted from the mother to the baby in utero, but we really do not know anything else," said Vett Lloyd , the biology professor who leads the research at Mount Allison. "We do not know how often it occurs – we do not know under what circumstances it occurs – we do not know what types of Lyme bacteria do it more, so there's this huge black box."
Lloyd states that the medical community has focused on ticks as a source of transmission, but must consider other sources, including congenital transmission, to manage the disease. He says that the issue of transmission becomes more significant as the number of people with Lyme disease, including women of childbearing age, expands rapidly around the world.
"If we discover that every time a mother is infected, the child will be infected, so clearly the health profession will have to find a way to deal with maternal infections, if it's one in a million, this is a different story … But to this we do not know, we have no idea what the shape of the problem is. "
& # 39; No one would listen & # 39;
Tamara House's son, Luke, has been plagued by health problems since birth. At 13 he was forced to live at home for anxiety, digestive problems, dizziness and motor tics and did not go to high school. It has been variously diagnosed with Tourette's syndrome, irritable bowel syndrome, depression, chronic fatigue system and other disorders.
Tamara also lived with episodes of tinnitus, hearing loss, dizziness and Bell's palsy, but says it was mostly symptom-free. A test in the United States has indicated Lyme disease for both, along with an older child, and Tamara is convinced that there has been a maternal transmission.
"I was shocked to have passed it on to him," said House, a co-founder of Lyme Hope.
Now 19 years and after two years of antibiotic treatment, Luke is in good health and is getting ready to go to college.
Sarah Surkos of Toronto was grateful for a diagnosis of Lyme disease for herself and her children. She had been told that she had multiple sclerosis and that her two children had an almost unexplained fever almost constant from birth and later, gastrointestinal reflux and bladder, throat and throat infections.
You were told it was a "nest disease" and it was normal. "Nobody would listen, things have always been explained away."
His daughter Evelyn developed more debilitating symptoms as she grew up and at one point she was bedridden for months. The family visited more than 25 specialists in two years and came to believe that Evelyn's illness was psychosomatic and needed intensive help.
"Fortunately, a friend called me the day before we signed the documents to commit her and told me to look into something she had heard about Lyme disease."
Surkos and his sons were positive, but Surkos does not believe that his daughter or son has ever been bitten by a tick. All were treated with antibiotics.
"After three years of treatment, my daughter has almost arrived, I still have a long way to go because I have focused my efforts and my finances on treatment for my children, fortunately my son is now in remission and is a happy child, 'normal'. "
Trust your instincts & # 39;
Tara Shannon Renaud, Ottawa's musician and merchant, was struck by the speed with which years of symptoms disappeared in her and her children when treated for Lyme disease. Just last year, he spent three months in bed.
"I was told it was a virus and would have passed."
But he started doing his research and got a Lyme test. He then reconsidered the inexplicable health problems of his children, including fatigue, depression and anxiety, nerve pain and muscle weakness, digestive problems, joint pain and swelling and migraine. The tests of five of his seven children came back positive for Lyme. To his knowledge, no one was bitten by a tick.
"In our family, the children were relieved, it brought us a real sense of peace," he said of the diagnosis. But he also came with frustration "that we have been so long without help and so long without answers".
Despite being a registered nurse, Sue Faber never considered Lyme disease to cause "strange symptoms", including vomiting, pain in the limbs, and deep tiredness experienced by her and her three children. The younger daughter, Andrea, has experienced the failure of growth, cyclical fevers and rashes. All were positive for Lyme.
"From antibiotics, it was like day and night … Within a month of treatment, her symptoms disappeared, she's just a completely different girl."
Now co-founder of Lyme Hope, Faber is among the mothers on a mission.
"It is simply incredible to see these children prosper with appropriate and appropriate treatment," said Burlington, Ontario. woman. "We just want more children to have this advantage of getting the right diagnosis, getting the right treatment and getting support in Canada."
Women say they are committed to working together to raise awareness, push for research and prevent more suffering, especially as health authorities warn that the tick population is growing.
Lyme Hope has picked up the names of a petition to the federal government that shows that many Canadians are trying to find answers to their children's symptoms, many as they fight their own ailments, says Renaud.
"I started reading the comments and I was just whining because you can see the desperation of Canadians and so many people suffer and so many people are discredited, pushed to the side, especially mothers."
They are told that they are anxious, stressed, tired or work too hard, he says.
"So what we want parents to know is: keep fighting, trust your instincts.If something is wrong, something is wrong."
With file of Meredith MacLeod of CTVNews.ca