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.
Transplacental transmission resulting in congenital infection of Borrelia Burgdorferi (Lyme) has been documented and accepted over the last 32 years (1985 to 2017) by multiple International physicians, researchers, scientists and other experts.
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.
AUG 25, 2017 — On August 22, 2017, the Lyme Moms Sue Faber and Jennifer Kravis met with Canadian Federal Health Minister Jane Philpott and Dr. Theresa Tam, Chief Public Health Officer at the Public Health Agency of Canada.
We personally delivered 2,700 Lyme Letters (115 pounds worth) from Canadians coast to coast as well as a bound volume of the 12,000+ Petition comments from the Ticking Lyme Bomb Petition - powerful, moving and clearly documenting the Lyme crisis which continues to explode across Canada .
We also delivered 30+ years worth of medical reference literature/research/case-studies documenting mother-to-child transmisson of Lyme Disease through pregnancy - an alternate mode of transmission. We have been advised that the Public Health Agency of Canada is conducting a literature review on congenital transmission and so we hope that this sharing of information with them will be of value.
When we met with the Health Minister, we shared from our hearts - and truly from your hearts. We spoke to the truth and reality of Canadians from every province and territory. We did our very best to represent you and to ask for our Federal Government to engage at a level which is meaningful to those who suffer now. This means that patient voices, patient advocates and care-givers, Lyme literate physicians, researchers and scientists who do exist here in Canada - must be included in next steps - not just at a surface level, not paying lip-service - but meaningful, active participation.
We must continue to come together, unite, and strategize with common goals - to protect, to educate, to provide appropriate and timely and patient focused care, to research meaningful questions, to open dialogue and have healthy debate among experts. We must move forward.
We believe that Canada can indeed be a world leader when it comes to Lyme Disease and we will hold onto that Hope.
AUG 20, 2017 — Today, Sue Faber and I finished reading the last of the 2,700 Lyme Letters in preparation for our upcoming meeting with Federal Health Minister Jane Philpott.
Many of these letters are written by mothers – sharing their heartache watching their children deteriorate and suffer right in front of their eyes.
Today we would like to honour a very special mom. Please click on the link below to watch the video.
Fran Davide is an incredible mother to Chiara Cassuoli-Davide, a 25 year old Toronto woman who fell suddenly ill at age 15. Chiara tested positive for Lyme disease and her symptoms started after a trip to the cottage and a strange round mark on her foot.
No one knows all the contributing factors in Chiara’s rapid decline, and there are still so many unknowns around tick-borne illness. But I think every parent wants and deserves the same thing when it comes to their children’s health: for every possible explanation to be fully evaluated and meaningfully explored.
Chiara is now almost 25 years old, she weighs 50 lbs and has been incapacitated and non-verbal for the last 8 years. We join Fran in praying for a miracle for Chiara.
In the video, Chiara sings “Let it Be” and we would like to close by highlighting the words in this song which are the hope and prayer of millions around the world:
“For though they may be parted,
there is still a chance that they will see.
There will be an answer, let it be.”
Here is Chiara’s Story, as told by her mother, Fran, in her Lyme Letter to Minister Philpott:
“Dear Dr. Philpott
After reading your profound biography, I address this letter to you as our federal Health Minister but most of all as a mother who shares the heartbreak and experience of a child with a devastating illness. My hope is that with your leadership, the Ministry will give the much needed resources to Lyme Disease that has reached a catastrophic epidemic.
I am a Toronto mother distressed by the lack of quality and essential health care services for my daughter, Chiara.
In September 2007, my vibrant and healthy fifteen year old daughter started having headaches, cognitive decline, and nightmares. Chiara’s health deteriorated rapidly, her brain eventually showed atrophy, and she has been fully incapacitated and non verbal for the past eight years.
As a determined mother with unwavering faith and devotion to my daughter, I embarked on a search for answers and ten months after the onset of her symptoms, I discovered Lyme Disease. As a potential diagnosis it made a lot of sense as she had been to a cottage in August and we discovered a circular mark, though not the classic bull’s eye rash, on her heel. This opened a whole new can of worms and led to overwhelming and disturbing discoveries leading to the ignorance of Vector Borne Diseases, Lyme Disease in our health care system.
After three admissions and numerous tests at the Hospital, including the standard Canadian test for Lyme, she remains with a diagnosis of neurodegenerative disease with an unknown etiology that offers no cause or treatments.
In my continued search, I sent her blood work to the USA and Germany for testing where she received a positive result for Lyme; however, the results were not recognized by our doctors in Canada where she continued to test negative. Our only recourse was to travel to the USA, Germany, and Italy for treatments, which left us in financial ruin.
It should be unnecessary for Canadian families to have to take the costly step of obtaining effective testing and treatment outside of our country. According to treatment practices, earlier detection would have resulted in immediate treatment and therefore greater potential for recovery. To this day, the Canadian testing standards remain grossly inadequate.
As a mother, I feel Chiara was abandoned by our health system. She is now turning 25 years old and has been in palliative care at home for ten years. Her health status remains unchanged, weighing only 50 pounds she continues to deteriorate with no prognosis available.
I have recently been widowed as this nightmare tore my husband’s heart and he passed with liver cancer in 2015. I am Chiara’s sole caregiver in our home 24/7 with no family support, unable to work, and insufficient support through government services. I am completely overwhelmed, emotionally drained, physically exhausted, and struggling with my own health issues. Despite the adversity, I remain a determined mother with an unfailing search for “a miracle”.”
AUG 15, 2017 — Today I'm sharing Laura's story as written by her mom. How many more children will be infected and get sick before this madness stops?
Please help us meet our goal of 75,000 signatures before we meet our Federal Health Minister Jane Philpott on August 22nd - if everyone who signed this petition got one more person to sign, we would hit this goal easily! Don't stop at 1 - try to get 5 or more!
"I am sharing our recent experience with Lyme in our daughter, Laura. This is long, but parents need to know. Laura is only 2 years old.
June 8th 2017 while giving Laura a bath I noticed what looked to be a mosquito bite on her arm. We live in the country and are no strangers to mosquito bites. This one seemed different from the other bites she had. It was beet red, and really hard. Over the course of a few days the bite started to change colour and looked almost scaly and bruised.
The morning of June 15th my husband texted me at work to tell me that bite had turned into a bullseye. At this point I didn't know very much about Lyme disease, but what I did know is that the bullseye is never a good sign. I immediately left work and took her to the emergency room. The doctor said that she was just having a weird reaction to a mosquito bite and it was nothing to be concerned about.
He instructed me to keep an eye on it and give Benadryl every four hours until the bite cleared up. I specifically asked if it could be from a tick and possibly Lyme. He told me that ‘we don't have Lyme in our area’ and ‘because I didn't see the tick we didn't have anything to worry about’. I didn't feel good about the response we received in ER so I called my family Dr. Again, I asked about Lyme and was again told that because we didn't see the tick it couldn't be Lyme. I went to the pharmacy and spoke with a pharmacist, she agreed that it did not look like a normal reaction to a mosquito bite, but wasn't certain that it could be Lyme disease.
Shortly after the bullseye showed up Laura started to get sick. It started with fevers that were in the 103/104 range and lasted for a week. She got a rash over every inch of her body. I took her to emerg and we were told she was probably teething or it could be from a virus. I called her family doctor and was again told it was a virus. Each time I mentioned the bullseye and each time I was told no, it's not possible it's Lyme.
Laura started getting diarrhea, having up to 10-11 diarrhea diapers a day. She would sometimes have blood and mucous in her stool. Occasional vomiting, fevers every few days and extremely lethargic, headaches, and joint pain. My once crazy busy, non stop toddler wasn't even asking to go outside. She would lay on the couch all day and watch tv. She was asking to go to bed which in two years has never happened. When she would play outside she would play for a few minutes and then come and sit in my lap. She wouldn't even walk to the end of the driveway because she was so tired.
Then the temper tantrums started. Laura started having horrible temper tantrums that were so unlike any other temper tantrum she has ever had. She would bang her head against things as hard as she could, the floor, a wall, a window. Scratch at her face, bite her arms, pull her hair. She would wake up in the middle of the night screaming in agony and banging her head against the wall. This started happening so frequently that we were referred to a developmental paediatrician to begin the process of having her tested for autism. These temper tantrums did not start until after we saw the bullseye and the onset of the rest of her symptoms. My daughter is not autistic she is in so so much pain and she has no other means of telling you.
I took her to the nurse practitioner on July 25th. I went through all of the symptoms, showed her the bullseye rash and asked her to treat her for Lyme. She agreed and gave her a 14 day course of amoxicillin. Laura ended up having what we thought was an allergic reaction to the amoxicillin so I called back to my doctors office and asked for a different medication. The nurse practitioner was away on vacation and our family doctor flat out refused to give her a new prescription. She insisted that Laura does not have Lyme and that she has had a stomach virus for the last two months. She would not agree to treat her until Laura had a positive Lyme test come back.
Aug 5th we decided to take Laura to a top Canadian Children’s Hospital to see if we could get any further with them. They agreed to do the Lyme blood test, but insisted that the bullseye rash is an allergic reaction to a mosquito and that the bullseye that Laura had looks nothing like the Lyme rash. They also stated that the symptoms she has experienced all summer do not fit the symptoms associated with Lyme disease. They did no other testing on her and didn't even bother to check her white count or do a basic blood panel on her. They referred us to another paediatrician and said that this was out of their scope as they are an emergency department and are trained to deal with serious emergencies only.
On our way home the ER doctor at our local emergency department called and told us the stool sample came back and tested positive for a parasite. Even if left untreated this particular parasite should have cleared up on its own within 10 days. Laura has been sick with this parasite for almost two months, which tells you that her immune system is not functioning as it should. When on the phone with the doctor I asked him if this could be related to Lyme disease and he told me that he was unsure and that doctors in in our Province do not know enough about Lyme to diagnose and treat for it, that we need to seek treatment elsewhere.
Laura has been sick with the parasite for two months so not treating for it is absolutely not an option. The only way to obtain the medication in Canada is by going through the ministry of health. Numerous doctors, our nurse practitioner, my husband and myself tried for a week to get in touch with the ministry of health and not one of our phone calls or emails were responded to. This left us with no choice but to go to the United States and get the medication ourselves.
Because this parasite is highly contagious Laura has passed it onto me, so I need to be treated as well or risk re-infecting her. This medication cost $1778.40 USD. Which will not be covered by our insurance and is completely at our expense. This is something that should have been treated for in our Province.
Due to the nature of the parasite and the Lyme public health in our area needed to be contacted and an investigation needed to be completed. The picture of the bullseye rash along with her symptoms was sent to the inspector. He agrees that it is in fact Lyme and that Laura should have been treated when we initially took her to the emergency room. In his opinion there is a major flaw with the testing in Canada and that doctors in our Province are highly under-qualified to diagnose and treat for Lyme.
On Monday August 14th we are travelling out of our Province to start having Laura treated for Lyme. This is costing us thousands of dollars and is a huge strain for our family financially, but we have been left with no other option. There is a major flaw in the Canadian health care system where Lyme is concerned. As Canadians there is no reason we should ever have to leave our Province and spend astronomical amounts of money to get access to health care.
If Laura had been treated with amoxicillin on June 15th when I initially brought her to the hospital all of this could have been avoided. Due to the ignorance of doctors, my two year old child has been suffering for two months with little to no help from our healthcare system. This is a two year old child. She is just a baby and she needs help.
Canada has a Lyme crisis on their hands and needs to be held accountable."