Canadian Families with Lyme Disease - concerns of maternal/child transmission

This Christmas season as families come together to spend time with one another, there are many Canadian families who are carrying the heavy burden of heartache, sickness, and tremendous stress and uncertainty as they continue their quest for appropriate medical care within Canada. You see, in many cases, the parents and all their children have Lyme disease - yes, all! Imagine an entire family with Lyme disease and really, nowhere within Canada to turn for medical support. This is the disturbing and daunting reality of many and more and more families are piecing together that this could be their reality too.

The Public Health Agency of Canada (PHAC) defines Lyme disease exclusively as a “zoonotic” illness (meaning, only passed from ticks to human) and, for unknown reasons, minimize and disregard congenital and gestational transfer cases (from human to human, mother to child). 

PHAC has a mandate to 'prevent and control chronic and infectious diseases' and therefore we believe that prevention of maternal-child transmission of Lyme disease (preventing more babies from being born with Lyme disease and suffering from this infection as a result) should be seen as the highest priority along with the important prevention messages and education around tick-bites. 

Scientific evidence has clearly and irrefutably proven maternal-child transmission is possible - from an infected mom to her baby - and this evidence has been documented in literature in human case studies, case series and pathology reports from different international scientists, physicians and researchers. 

Are you interested in seeing and reviewing the evidence for yourself? 

Please take some time to watch our LymeHope presentation/video from November 3, 2017 which is available here:https://youtu.be/SLFRYVcGeR4
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If you are interested in the PowerPoint slides and the list of references, they are available on our LymeHope website here: http://www.lymehope.ca/advocacy-updates/sharing-our-research-findings-on-lyme-and-pregnancycongenital-transmission-with-minister-of-health-and-public-health-agency-of-canada

At LymeHope, we believe we cannot allow pre-determined bias to get in the way of examining the clear objective evidence that does exist and would push us forward to take the issue of transplacental transmission seriously. We would think that with what we do know and the science that does exist, researchers would consider the precautionary principle and take action which supports the best interests of Canadians. The precautionary principle implies that ‘there is a social responsibility to protect the public from exposure to harm, when scientific investigation has found a plausible risk’.https://en.wikipedia.org/wiki/Precautionary_principle

In mid July of this year, LymeHope was notified in a letter from a Senior official within PHAC that: 

'In terms of your questions around congenital transmission of Lyme disease, the Agency plans to conduct a literature review of this issue which will take several months to complete. We will be pleased to share a copy with you once completed.' 

At our August 22nd meeting with then Minister of Health Jane Philpott and Dr. Theresa Tam (Chief Public Health Officer and also a pediatric infectious disease physician), we presented them with a copy of all the literature we have gathered on congenital Lyme transmission - to ensure that all literature including congenital case-studies and pathology reports are included. 

This disturbing reality of congenital Lyme transmission has also been comprehensively described and meticulously researched by Dr. Tessa Gardner (a Pediatric Infectious Disease doctor - trained at Harvard University) in Remington and Klein's Infectious Diseases of the Fetus and Newborn Infant - a medical reference textbook - 5th edition from 2001. We gave the Agency a copy of this important chapter to include in the literature review. We had also given a hard-copy of this textbook directly to the Standing Health Committee for Parliamentary record. In her testimony at the Standing Health Committee, Sue Faber, Co-Founder of LymeHope, had spoken directly to concerns regarding maternal child transmission. Her testimony can be found here: https://www.youtube.com/watch?v=-gByuqmZBNk

LymeHope has also asked PHAC to be invited as a trusted partner in the peer review process of their current literature review on congenital Lyme. We represent and are connected to many Canadian families who are concerned about and affected by congenital transmission, and we have also done a great deal of research and review on this topic – including a review of epidemiological studies, case studies, case series and medical reference material. We look forward to the opportunity to engage as stakeholders in a meaningful way, to ask relevant questions and receive answers and be a part of the process.

How do families discover that Lyme disease is indeed affecting their whole family? It's usually the result of Mom being diagnosed with Lyme disease first - and then retrospectively putting the pieces together for other members of the family.

The narrative often goes like this. Mom has been sick with 'mysterious' progressive symptoms for many years and been assessed by one doctor after another, costing our healthcare system extraordinary amounts of money - perhaps diagnosed with fibromyalgia, rheumatoid arthritis, chronic fatigue, ME, ADHD, anxiety, depression, lupus, relapsing-remitting MS (to name a few). 

Mom's symptoms are usually varied and cyclical (they come and go) - and may include (but not necessarily all) extreme fatigue, memory issues or brain fog, unrelenting migratory muscle and joint pain, numbness and tingling in limbs, heart palpitations, chest pain, POTS (postural tachycardia syndrome), breathlessness, flushing, cold hands and feet, severe symptoms around her menstrual cycle, visual disturbances, sleep problems, digestive issues, food sensitivities - the list goes on and on. 

Her doctors aren't sure what is going on and she may be referred to a psychiatrist or it is suggested she see a therapist. She may be also labeled with words or diagnosis which include the words 'idiopathic', 'syndrome', 'conversion disorder', 'medically unexplained symptoms (MUS)' - the list goes on and on. Deep down, Mom knows not all is well, often she feels like she is dying, her body is slowly falling apart - but she pushes herself to seek answers because she knows they exist. She also pushes herself because she has kids who need her, often these kids are dealing with their own health issues.

And then one day, Mom finds out that there is this disease called Lyme but all she's heard from her doctor and through reports in the media is that it is an 'easy to cure', 'easy to identify', 'hard to catch' disease caused only by a tick bite. Initially she thinks she doesn't 'qualify' because she never remembers pulling off a tick, or maybe she did pull off a tick - but that was a long time ago. However, as she reviews the multiplicity of symptoms which appear to affect multiple body systems - a light turns on - finally. For a comprehensive screening tool check out the Horowitz Questionnaire which can be found here:http://lymeontario.com/wp-content/uploads/2015/03/Horowitz-Questionnaire.pdf

Her family doctor might agree to test her for Lyme - but in most cases, her ELISA test in Canada is 'negative' and the doctor tells her it's definitely not Lyme disease! In some rare cases, her Canadian two-tier test is positive - but if she doesn't remember a tick bite, doesn't live in an 'endemic area' and doesn't remember a 'bullseye' rash, she is often assured by her doctor the test is a false positive because 'Lyme doesn't become chronic' and her symptoms really are 'atypical'. Once again, she feels like she is falling deeper down the rabbit hole.

And then there are the kids - their health issues have kept her awake at night. From the letters we received through the Lyme Letters Campaign where Moms were concerned about congenital transmission - similar patterns, striking symptom clusters emerge. Not all the children have the same symptoms – which is typically how Lyme disease appears – different symptoms in different people depending on which part of the body the Lyme bacteria invades. 

Mom may have had difficult pregnancies - severe morning sickness, in some cases miscarriages, multiple miscarriages or the devastating loss of their baby as a result of still-birth or SIDS. And the kids - have had issues since birth - some born premature, some being hospitalized for fevers of unknown origin (sepsis NYD). Babies may have jaundice, be extremely colicky, have digestive issues, strange rashes that come and go, some have strong reactions post vaccination (high fevers and fussy). "failure to thrive", issues with chronic constipation, cyclical vomiting, cyclical fevers, atypical seizures. Some are diagnosed on the autism spectrum. Some develop facial tics or body tics. Night terrors, intermittent joint, muscle and/or bone pain (often labeled as growing pains), OCD, anxiety, ADHD. 

These symptoms clusters have been documented by Dr. Charles Ray Jones - Lyme disease pediatrician from the US.https://www.lymedisease.org/wp-content/uploads/2014/08/Image21-Gestational-Lyme-Studies.pdf

Families who are concerned about the possibility of transplacental transmission of Lyme have no choice but to seek appropriate testing (Western Blots, Elispots and Blood Cultures) and expert medical assessment and care outside of Canada at their own expense. This is truly unacceptable and un-Canadian. If you think you may be a family affected by congenital Lyme disease, please reach out to us through our contact form on this site.

We ask that as you come together with family and friends this season, you continue to share this Ticking Lyme Petition with your family, friends, colleagues and community, government and industry influencers. 

The collective voice of Canadians is strong and united and we look forward to meaningful recognition of maternal transmission of Lyme disease - and an action plan and allocation of resources to support and care for all the families and children who are directly affected and need help.

On behalf of all of us at LymeHope, we would like to wish all of you a Happy Holiday with your families and a very Happy New Year. Thank you so much for your continued support.