JAN 26, 2018 — Below is a short Facebook video from federal MP Marilyn Gladu, who is a member of the federal Conservative Party and currently the Shadow Health Minister. Canada’s federal election is next year, and all of our federal parties are currently developing their campaign platforms and determining which priorities they will pick to focus on as they head into election mode.
We are asking everyone to click the link below and comment on MP Gladu’s Facebook video - tell her Lyme is THE health priority:
LymeHope recently met with MP Gladu and spent an hour with her discussing the dire situation so many Canadian families are facing, the systemic obstacles to getting adequate diagnosis, testing and care, the serious flaws with current testing, the denial of maternal-child transmission and the lack of up to date education across the health care field, including the most up to date peer-reviewed treatment guidelines which are available here: http://www.ilads.org/lyme/treatment-guideline.php.
MP Gladu was deeply concerned about the rapidly spreading epidemic that is putting all Canadians, our health care dollars and our economy at risk.
It is critical that Canadians concerned about Lyme disease do as much as they can to make sure all our Politicians from all parties understand that this is a very important issue, with widespread support coast to coast.
Regardless of your political views, or which party you support, making Lyme disease part of the election discussion is a good thing. It will raise public awareness, it will put pressure on the current Government to do more, and it will encourage opposition parties to make it a key part of their election promises.
In this video, MP Gladu is reaching out and asking Canadians to contact her and provide feedback as to which health priorities are most important. This is a perfect opportunity to promote Lyme & related diseases as THE most important health epidemic that requires significant change to help Canadians.https://www.facebook.com/MPMarilynGladu/videos/910249982483167/?hc_ref=ARSdbQAhlQ1ZOoiOnnEuNp-7qFsyoWpI2WmU-umqjXvq_wfJsE9EtXT5MQ9T79Beb3w
Please send your feedback to MP Gladu, and encourage your friends and family to sign, comment and share the Petition (http://bit.ly/2lfBuNL) and send their feedback to MP Gladu as well.
You may email, call, write or comment on her Facebook video (or do all of them!):
Email her at : Marilyn.firstname.lastname@example.org
Comment on her Facebook video:
Call her Ottawa Office at (613) 957-2649 and leave a message or relay your concerns to her staff.
Write a personal letter to:
Marilyn Gladu, MP
Ottawa Parliamentary Office
554 Wellington Building, House of Commons
If you live in the Sarnia area and are MP Gladu’s constituent, you can call her local office at (519) 383-6600 leave a message or talk to her staff about your concern; and/or ask for a meeting in person!
Finally, you may also wish to contact your current federal MP and remind them YOUR vote in the next election will depend on their commitment to meaningful change on the subject of Lyme disease in Canada.
Find your MP here:
As always, thank you for your continued support, together we CAN help bring change for all Canadians.
Sue Faber, RN & Jennifer Kravis, LL.B
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
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.
On August 22, 2017, we met with then Federal Health Minister Jane Philpott, and Chief Public Health Officer Dr. Theresa Tam to deliver 2,700 personal Lyme Letters, 12,000 Ticking Lyme Bomb Petition comments and scientific literature on maternal – child transmission of Lyme Disease. In that meeting, we spoke to the intense and widespread suffering that is occurring across Canada due to the unacceptable denial of proper testing, diagnosis and treatment and care for those stricken with tick-borne diseases.
In this meeting, Minister Philpott and Dr. Tam invited us to continue working alongside the Health Minister’s office and Public Health Agency of Canada, and we believe this partnership is crucial to effect much needed change for all Canadians.
If you click the link above, you can read the response we received on September 29, 2017 from Dr. Tam and Dr. Siddika Mithani, President of Public Health Agency of Canada regarding the Lyme Letters. We responded back on October 25, 2017 and that response is also posted.
While we appreciate the engagement of the Public Health Agency of Canada, these letters were personally addressed to then Health Minister Jane Philpott. We are disappointed that former Health Minister Jane Philpott has not yet responded. She opened her doors to meet with us and receive the Lyme Letters. These letters are significant in the depth of the anguish, emotion and suffering conveyed by thousands of Canadian men, women and children, and we believe a personal response from Minister Philpott would be appropriate and appreciated.
We will continue to request this response and engagement, from both Minister Philpott and the new health Minister Ginette Petitpas-Taylor. We think it is important that our elected officials remain responsive to the voices and needs of the Canadians that voted for them.
You can also read our October 25th introduction letter to Minister Petitpas-Taylor. We have not yet received a response from her office and we will be following up.
We appreciate your ongoing support as we continue to engage with those who have the power and responsibility to protect the health and welfare of Canadians. The unacceptable narrative in Canada around Lyme & related diseases continues, and we therefore continue to encourage all Canadians to sign, comment and share this Petition.
We are so excited that the letters, the stories, the VOICES of Canadian Lyme sufferers are being heard.
Jennifer and I are so grateful that we have been able to bring YOUR stories, the truth - to light and we will not stop.
Darkness, marginalization and despair is being replaced by a renewed Hope which is illuminating the truth - and will guide a path forward - whereby all those with Lyme disease WILL receive the necessary care, treatment and support they need - within Canadian borders.
It is our desire to work collaboratively with other change makers and to continue building bridges with others who are willing to participate in solutions.
Please see the attached article just released in Maclean's magazine online about "impatient patients". We are thankful to journalist Anne Kingston for following and reporting on our journey.
For everyone who wrote a Lyme Letter, signed and commented on the petition, participated on social media... this is for YOU!!! The more people remain involved, concerned and actively pursue meaningful change, the stronger we become.
Our voices, our stories and our reality is being heard and acknowledged! This is just the beginning! Please click on the link button below to access Maclean's article.
Links to other articles written by Anne Kingston on Lyme Disease below:
Above is a U-tube link Sue Faber's November 3rd, 2017 presentation on Lyme disease and Pregnancy/Transplacental transmission at our first LymeHope event.
The powerpoint presentation slides and an extensive reference list below.
Please click below to access a list of articles/literature on Pregnancy and Lyme/Congenital Transmission.
Sue Faber had also spoken directly to her concerns around congenital transmission when she was invited to speak as a witness in front of the Parliamentary House of Commons Standing Health Committee study of the Federal Lyme Framework in June.
Sue's speech below:
Link to briefs submitted to the Standing Health Committee can be found here:https://www.ourcommons.ca/Committees/en/HESA/StudyActivity?studyActivityId=9527827
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 the literature we have gathered on congenital (mother to child) Lyme transmission - to ensure that all literature including congenital case-studies, pathology reports and Chapter 11 written by Dr Tessa Gardner (Pediatric ID doctor) in Remington and Klein's Infectious Diseases of the Fetus and Newborn Infant - a medical reference textbook - 5th edition from 2001 is included in the Public Health Agency of Canada's current literature review on congenital transmission.
We had given a hard-copy of this textbook directing to the Standing Health Committee for Parliamentary record. We look forward to ongoing collaboration and transparency with Public Health Agency of Canada regarding our serious concerns around congenital transmission. We believe this alternate mode of transmission needs to be urgently recognized, researched and acknowledged by our Public Health Authorities as Lyme disease continues to sweep across Canada.
Please note: The Centers for Disease Control and Prevention warns 'Lyme disease acquired during pregnancy may lead to infection of the placenta and possible stillbirth'
CDC poster on Pregnancy and Lyme: 'Untreated, Lyme disease can be dangerous to your unborn child. Lyme disease that goes untreated can also cause you to have brain, nerve, spinal cord, and heart problems.'
The March of Dimes also shares this about Lyme and Pregnancy on their website:
On June 4th, 1988, Health and Welfare Canada reported: (please see pictures above)
'Transplacental transmission of B. Burgdorferi(Lyme) has been documented and may be associated with an increased risk of adverse pregnancy outcomes.'
We are deeply concerned that this serious alternate mode of transmission of Lyme disease and potentially other co-infections has not been adequately addressed since this report. It has been 29 years since this report was published and yet most physicians and general public are completely unaware of the potential for mother to child transmission of Lyme disease. We know of many families whereby all the children have Lyme disease and the parents are concerned it was passed through pregnancy. We believe mother to child transmission to be an urgent research priority.
This same report can be found in: Lyme disease in Canada. Epidemiologic Report. CMAJ Vol. 139, Aug 1, 1988.
The excerpt and picture below is from a top-tier, world renowned, medical journal and authored by medical doctors and researchers.
Title: Clinical Pathologic Correlations of Lyme Disease by Stage
Authors: Duray, P. and Steere, Alan, C. 1988. Annals of the New York Academy of Science Vol: 539:65-79 Correspondence: PAUL H. DURAY Department of Pathology Fox Chase Cancer Center Philadelphia, Pennsylvania ALLEN C. STEERE Department of Internal Medicine Division of Rheumatology Tufts University School of Medicine Boston, Massachusetts 02111. These authors were/are the leading Infectious Diseases Society of America (IDSA) researchers - they also worked with the Centers for Disease Control.
'It is clear that B. Burgdorferi can be transmitted in the blood of infected pregnant women across the placenta into the fetus. This has now been documented with resultant congenital infections and fetal demise. Spirochetes can be recovered or seen in infant's tissues including the brain, spleen and kidney. The chorionic villi of the placenta show and increase in Hofbauer cells as in luetic placentitis. Inflammatory changes of fetal or neonatal changes are not as pronounced as in the adult, but cardiac abnormalities, including intracardiac septal defects, have been seen. It is not known why inflammatory cells are so sparse from maternal transmisson but it is possible that an immature immune system plays a role.'
The citations/references 28,29 in the text are as follows:28. SCHLESINGER, P. A., DURAY, P. H., BURKE, B. A., A. C. STEERE, & M. T. STILLMAN 1985. Maternal fetal transmission of the Lyme disease spirochete, Borrelia burgdorfri. Ann. Intern. Med. 103 67-68.
29. MACDONALD A. 1986. Human fetal borreliosis, toxemia of pregnancy, and fetal death. Zbl. Bakt. Hyg. A 263:189-200.
In an interview on March 10, 2017, on CBC radio (Ottawa Morning), Dr. Caroline Quach, the president of Association of Medical Microbiology and Infectious Diseases - AMMI - was interviewed.
The entire radio interview can be found here. http://www.cbc.ca/player/play/894819395658
Here is her response when asked about mother to child transmission.
Question/Interviewer: Can Lyme Disease be transmitted in the womb, for example?” - starting at 7:48 into the interview.
Dr Quach answer: “Well then again, there’s no evidence that that is actually happening. And in fact even in animal models, in mice that were infected with Lyme disease did not transmit it to their offspring. So there’s no animal models to support it and hasn’t been any evidence in the, in humans that that has happened, at least not reported in the literature. I think that as for everything we have peer review journals that review articles from scientists and so as long as that data is not available to the medical literature, to us at least there’s no proof that it actually happens, so neither from breast milk or through sexual contact or through mosquito bites."
This is a portion of a written response from the Canadian Lyme Science Alliance:
'4. Congenital transmission:
There are certainly case reports of congenital infection of Borrelia and related tick vectored diseases in humans. (7-9) These tend to be older and the power of more recent epidemiological studies in humans was insufficient to resolve this issue.(10-12) Moreover, most human studies have focused on the potential of Borreliosis to cause adverse pregnancy outcomes, and did not focus on the long-term health of the child.(33) In animal models, Gustafson et al. 1993 (13) did find congenital transmission in dogs and Burgess et al (1993) in wild mice (14). While it is correct that Silver et al (1995) (15) showed that infected mice did not pass the infection to their pups it is also important to note that they did report significant mortality of the pups of infected mothers. These findings are of obvious concern to pregnant mothers and deserves to be better assessed.'
The full report which addresses the entire interview and all references can be found here:
On September 13, 2017, Public Health Agency of Canada (PHAC) hosted a round table with patient / advocate groups from all across Canada. Jennifer Kravis represented LymeHope to participate in this discussion and we have attached our video update with a detailed description of the half-day meeting.
At the end of this post, you can click on documents from this meeting including the 1: introduction statement on behalf of all the advocates, 2: a list of questions which the advocates prepared and sent to PHAC ahead of the round table, 3: The PHAC presentation deck.
The purpose of the meeting was for Public Health to share the steps to implement the Framework Action plan, to provide an overview of how the $4 million in funding will be allocated (over the next 5 years) and to discuss ways to involve patients in this process.
All the patient advocates (including LymeHope) were united in the strong message that we unanimously believe the priority must be patient-centred and provide solutions NOW to people already suffering, the newly infected and all Canadians who are at risk- i.e. better testing, more emphasis on diagnosis based on symptoms (clinical diagnosis) and more treatment options HERE so people don't have to leave Canada and pay out of pocket for urgent health care.
However, Public Health Agency of Canada remains committed to the priorities outlined in the Framework of surveillance, education and prevention. So, within those parameters we will work with Public Health in a collaborative manner to try to begin the process of finding ways to start helping patients by beginning in those areas.
There will be a multi-stakeholder (including patient groups), multi-year process as the details – the “Action Plan” – of the Framework are put into place.
We are hopeful that this will be the beginning of a more integrated, inclusive functional working relationship with our federal public health partners, and we will provide updates as they happen.
Since August 22, 2017 when we met with then Federal Health Minister Jane Philpott to deliver the Lyme Letters, a lot has happened.
In the week following that meeting, an announcement was made that there was a federal cabinet shuffle triggered by an opening in another portfolio. Several Federal Cabinet Ministers were moved, including Minister Jane Philpott - who left the Health Portfolio right after we met with her and delivered the thousands of Lyme Letters and Petition comments!
The existing department of Indigenous and Northern Affairs has been replaced by two new departments: former Indigenous Minister Carolyn Bennett became Minister of Crown-Indigenous Relations and Northern Affairs, while Jane Philpott became the Minister of newly created Indigenous Services.
The new Health Minister is Ginette Petitpas Taylor. Minister Petitpas Taylor is MP for the riding of Moncton-Riverview-Dieppe, New Brunswick. She has a background in social work and has been a passionate and strong advocate for many causes including pay equity for women, mental health and domestic violence.
We encourage all of you to write Minister Petitpas Taylor to let her know you remain concerned about the lack of funding and attention to Lyme & other tick-borne disease in Canada. Those of you living in her riding can also request to meet with her personally in her constituent office to share your story and concerns personally.
So what does this mean?
We will be following up with Minister Philpott in her new role in Indigenous Services as there are many indigenous communities living in endemic areas for infected ticks.
We will also be following up asking for a meeting with new Health Minister Petitpas Taylor and look forward to continuing the dialogue with her office, and also with Public Health Agency of Canada.