LYMEHOPE

Welcome to LymeHope

LymeHope is a Canadian not-for-profit dedicated to education and outreach on the subject of Lyme & related diseases in Canada. LymeHope has 3 primary goals: to provide education and outreach to patients, the general public, medical professionals, and to leaders across industries, to advance knowledge and support research into Lyme & related diseases, and to provide encouragement, hope and support to Canadian families struggling with the devastating effects of these disease and the challenges accessing care at home.

Follow us on Twitter: @lymehopecanada and @lymemoms
Please Like and Follow us on FaceBook:
https://www.facebook.com/lymehopecanada/

Vision for LymeHope

Supporting Canadian Lyme research which values patient engagement in the development and implementation of evidence based research priorities.
Assisting in the development and dissemination of comprehensive, evidence based, up-to-date, Lyme educational tools and resources.
Creating a platform for individuals, families and communities affected by Lyme Disease, as well as interested health care professionals, to access education, resources, information and support.
Ensuring that the stories and suffering, the expertise and experience of Canadian Lyme sufferers will be heard, validated, acknowledged and acted upon.
Supporting a movement which would empower and unite Lyme sufferers, their care-givers, researchers, scientists and frontline healthcare professionals to work collaboratively and with transparency to identify and break down existing barriers and drive meaningful change for all Canadians.
Leading change which is anchored in hope and integrity.

LymeHope Reflection on 2020 and Renewed Hope for 2021!

Despite the challenges, chaos and uncertainty of COVID, exciting progress has been made in the field of Lyme disease. Updates with links to new published research, a current open research opportunity on Lyme and Pregnancy, news on important collaborations and an exciting book launch can be found here: https://www.lymehope.ca/lymevoice/lymehope-reflection-on-2020-and-renewed-hope-for-2021

Sept 28/2020 Ground-Breaking Lyme and Pregnancy Research Launches!

A ground-breaking research study on Lyme and Pregnancy has launched, led by Canadian Principal Investigator Dr. Elizabeth Darling and team from the McMaster University Midwifery Research Centre. LymeHope is honoured to partner and collaborate in this important endeavour, facilitating the 'birth' of a new era of research focused on assessing perinatal (mother-to-baby) transmission of Lyme disease - the first North American research into this alternate mode of transmission in 25 years!
Detailed information and how to participate here: https://www.lymehope.ca/news-and-updates/ground-breaking-lyme-and-pregnancy-research-launches

September 2020: Advocacy Response to PHAC's Website Optimization on Lyme disease.

Canadian Lyme disease organizations and associations submit a collective response to the Public Health Agency of Canada's call for feedback on their proposed/draft website changes. More here:
https://www.lymehope.ca/advocacy-updates/canadian-advocates-collective-response-to-public-health-agency-of-canadas-website-optimization-on-lyme-disease

February 11, 2020 - The Chronicle Herald: Time for Canada to follow U.S. recognition of mother-to-fetus Lyme disease transmission, says Mount Allison biologist

'Eventually, Lloyd hopes PHAC and the province’s public health officials will follow suit with CDC. Sooner rather than later.
"CDC has a very significant international presence so there is usually a follow-the-leader effect. They now have to deal with person to person transmission so that adds a new dimension in terms of risk and messaging that may be scary," said Lloyd."However, that’s what the science says is happening. The reality doesn’t go away if you ignore it so it's very appropriate for public health agencies to acknowledge the science and tell people what the risks are."
For the whole story:
https://www.thechronicleherald.ca/news/provincial/us-health-agency-acknowledges-lyme-disease-mother-to-fetus-transmission-409641/

Jan 31, 2020 CDC Website Updated Today
Possibility of Mother to Fetus Transmission of Lyme Disease

The CDC has updated their website today in three different spots to address the very important issue of maternal-fetal transmission of Lyme disease, from an infected mother to her fetus/baby.

'If you are pregnant and suspect you have contracted Lyme disease, contact your physician immediately.
Untreated Lyme disease during pregnancy can lead to infection of the placenta. Spread from mother to fetus is possible but rare. Fortunately, with appropriate antibiotic treatment, there is no increased risk of adverse birth outcomes.* There are no published studies assessing developmental outcomes of children whose mothers acquired Lyme disease during pregnancy.'
* Silver HM. Lyme disease during pregnancy . Infect Dis Clin North Am. 1997 Mar;11(1):93-7.
**
Clearly addressing the possibility of transmission from an infected mother to her baby is so important and we hope and trust this will open new doors for families who have expressed concern that their children were infected in-utero, so as to access medical treatment, support, follow-up and care. This update also provides confirmation of the nessecity for urgent, dedicated, scientific and medical research, in this area.

It is clear that the issue of maternal-fetal transmission of Lyme disease requires urgent research and a collective, multi-disciplinary, 'all-hands on deck' approach to address this alternate mode of transmission.

We are thankful for CDC leadership on this specific issue. Other countries around the world will take note.
It is time that ALL voices are heard, validated and acted upon. We can and must work together for the sake of our children and future generations.
More info here:
https://www.lymehope.ca/news-and-updates/cdc-website-updated-today-possibility-of-mother-to-fetus-transmission-of-lyme
#hoperises

Speech to US Health and Human Services Tick-Borne Disease Working Group on maternal-fetal transmission of Lyme disease- Jan 28, 2020

On January 28, 2020, Sue Faber, RN, Co-founder and President of LymeHope spoke for 3 minutes in the public comments period at the HHS Tick-borne Disease working group in Washington DC. She was honoured to have this opportunity to speak out on behalf of children and families all over the world affected by the very real, documented concern of mother to baby transmission of #Lymedisease.

Watch the 3 minute speech here:
https://www.lymehope.ca/news-and-updates/public-comment-at-hhs-tick-borne-disease-working-group-meeting-washington-dc

This alternate mode of transmission has paradigm-shifting implications and urgent research, investigation and collaboration must be a top priority. Parents and families affected need to be heard. Children affected by this alternate mode of transmission must have access to care and treatment without having to pay out of pocket.

For more information the literature that exists around mother to baby transmission, you can download citations, slides and compilation of the literature here:
https://www.lymehope.ca/advocacy-updates/march-03rd-2018

Sept 20/19 White Coat Black Art - Why patients are caught in the battle over treating chronic Lyme disease

Important interview with Dr. Brian Goldman (White Coat, Black Art) and several other experts including: Dr. Ralph Hawkins (Internal Medicine Clinical Associate Professor of Medicine at the University of Calgary), Dr. Isaac Bogoch (Infectious Disease specialist at University Health Network in Toronto), Dr. John Aucott, director of Lyme Disease Clinical Research Centre, Johns Hopkins University, Baltimore on Lyme disease. Two patients were also interviewed: Jane Bailey and Mandy Green whose son Chase was diagnosed with Lyme. There are extended interviews with these medical practitioners and patients which are well worth the listen. https://www.cbc.ca/radio/whitecoat/why-patients-are-caught-in-the-middle-of-battle-over-how-to-treat-lyme-disease-1.5288979

July 11/19 -LymeHope meets with Ontario Minister of Health

On Thursday, July 11th, 2019 in Toronto, MDs including Dr. Ralph Hawkins (General Internist, Clinical Associate Professor of Medicine University of Calgary and Fellow of the Royal Society for Public Health) and advocate Jennifer Wheeler as well as Sue Faber (RN) and Tamara House from LymeHope and Jim Wilson President of CanLyme met in person/teleconferenced with Ontario Minister of Health Honorable Christine Elliott.

This meeting was graciously offered by the Health Minister in response to an April 10th/19 question by MPP Randy Hillier (Lanark-Frontenac-Kingston) on behalf of his constituent Jennifer Wheeler and her son Nicholas. Further details on the Wheeler family Lyme story and journey of devastation, heartache, bravery resilience and determination to facilitate change for Lyme sufferers can be found here.
More information on that meeting and next steps can be found here:https://www.lymehope.ca/news-and-updates/meeting-on-lyme-disease-with-the-minister-of-health-of-ontario-hon-christine-elliott

LymeHope Benefit Concert - May 23, 2019

Please join us at the inaugural Lyme Hope Benefit Concert which features two of Ottawa’s top acts coming together for a musical event like none other.

Hosted by Ottawa’s Tara Shannon, together with Lyme Hope founders Sue Faber and Jennifer Kravis, the evening offers a mix and mingle starting at 7pm where guests will have access to information about Lyme Disease and can speak with members of the Lyme community to learn more about the often misunderstood illness.

The musical celebration starts at 8pm with a performance by event host, country-soul singer/songwriter Shannon, who will share her own journey with Lyme through songs and stories. Special guests, The Commotions, Ottawa’s original 10 piece soul/funk/R&B band will bring the audience to their feet doing what they do best - “reclaiming the spirit of soul” as musical director Brian Asselin has so aptly stated...which is why they are a perfect fit for this event...as Lyme Disease sufferers and their families are often trying to reclaim theirs.
All proceeds will be directed to Lyme Hope.
Tickets available at:
https://nac-cna.ca/en/event/22170

CTV National News Interview Jan 20/2019

'Kravis says Lyme Hope is working to ensure all front-line medical professionals understand Lyme disease and that Canada invests in diagnosis, testing and treatments.'

'We fight for our own kids, and for all kids and families who are too sick to speak out and have their voices heard.
“Women need to know this is a possibility. Doctors need to know this is a possibility,” said Jennifer Kravis, co-founder and director of advocacy group Lyme Hope. She and other mothers and their children gathered together in Burlington, Ont. to talk to CTV’s medical correspondent Avis Favaro earlier this month.
The whole story here:
https://www.ctvnews.ca/health/mothers-on-a-mission-to-prove-lyme-disease-can-be-passed-to-unborn-child-1.4261403

When Lyme Disease Strikes an Unborn Child -Jan 25/19 - by Mary Beth Pfeiffer.

'Last June, seven years into a project involving 30 committees and 11,000 proposals, the WHO released the eleventh version of this tally of human malady. Its 55,000 entries were undergoing final, mostly technical, review when, in December of 2018, something unusual happened: one diagnosis—congenital Lyme disease—slipped from the list. The condition occurs when a pregnant woman infected with the tick-borne disease passes the bacterium, known as a spirochete, to her developing fetus.' Full article in Scientific American can be found here: https://blogs.scientificamerican.com/observations/when-lyme-disease-strikes-an-unborn-child/

Lyme Petition to Federal Government- please sign and share!

We ask YOU to join us in signing, commenting on and sharing our Canadian Lyme Petition which continues to be a powerful resource and tool in our ongoing advocacy and education efforts. Currently there are over 84,760 signatures from across Canada and over 14,000 eye-opening comments from every Province and Territory across Canada which collectively speak to the truth, reality and struggle of Lyme disease sufferers throughout the Country including issues related to: the lack of appropriate treatment, the poor testing, clear evidence of mother to child transmission and concerns of sexual transmission, the financial burden of having to travel outside of Canada for appropriate care, how animals receive better medical care for Lyme disease then their human owners. Petition link below:
https://www.change.org/p/minister-petitpas-taylor-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now

Podcast Interview: Lyme Disease and Pregnancy

Recent interview with Cindy Kennedy for her podcast 'Living with Lyme'. I share my personal journey as a registered nurse, Lyme patient and advocate and an overview of how LymeHope started - as the result of reaching out and engaging with Lyme patients from across Canada - so that their voice would be heard and amplified.
- Sue Faber (Co-Founder LymeHope)
https://livingwithlyme.us/episode-53-lyme-disease-and-pregnancy/

Published study suggests majority of Canadians with Lyme disease slipping through the cracks

A New Published Study suggests the MAJORITY of Canadians who have Lyme disease are slipping through the cracks.
This type of initiative is the result of listening to patients, responding to real-world problems, and designing research studies around priority concerns. Media coverage below:
https://www.lymehope.ca/news-and-updates/published-research-suggests-only-3-4-of-lyme-cases-are-officially-diagnosed

Breaking News: Cdn Gov't Published Lyme in Pregnancy Paper Confirms Risk to Babies

Breaking News! Scientists from Public Health Agency of Canada (PHAC), assisted by a co-author from the U.S. Centers for Disease Control & Prevention (CDC), recently reviewed the global scientific literature on the impact of Lyme disease during pregnancy and the effect on the fetus and newborn. Their findings were published on Nov 12, 2018 in PLoS ONE, a scientific journal. More information here: https://www.lymehope.ca/news-and-updates/2018-cdn-government-review-acknowledges-transplacental-transmission-of-lyme-disease-and-risk-of-adverse-outcomes-for-babies

Open Letter to Public Health Agency of Canada - Urgent action needed.

Our December 3, 2018 'Open Letter' outlines our requests for PHAC and Ministry of Health to take urgent action regarding in-utero transmission of Lyme disease. https://www.lymehope.ca/news-and-updates/beyond-the-bite-mother-to-baby-lyme-disease

RNAO Resolution on Lyme disease

Registered Nurses Association of Ontario Resolution on Lyme Disease.

'Nurses at that meeting were alarmed by the challenges Faber faced accessing health services for her family, and decided to take action. They voted to support a resolution on Lyme disease, seeking to raise awareness and amplify the voice of patients.'

THEREFORE be it resolved that the Registered Nurses’ Association of Ontario (RNAO) advocate, at all levels of government, for Lyme disease prevention programs and the rights of all patients with symptoms consistent with Lyme and/or co-Infections to receive evidence-based, patient-centred care for both acute and multi-systemic chronic presentations of the disease in Canada; emphasizing healthcare provider education that acknowledges alternate modes of transmission, persistence of infection, and integration of a collaborative clinical model inclusive of ILADS guidelines in the treatment of this illness.

https://www.lymehope.ca/news-and-updates/registered-nurses-association-of-ontario-rnao-focuses-on-lyme-disease

LymeHope meets with Provincial Minister of Health Honourable Christine Elliot

Friday Nov 2, 2018: LymeHope had a fantastic 45min meeting with Ontario Minister Of Health Honourable Christine Elliot.
More Info Here:
https://www.lymehope.ca/news-and-updates/lymehope-meets-with-honourable-christine-elliot-ontario-minister-of-health

Canadian Lyme Research
LymeHope supports the Canadian Lyme Consortium

Important Update re: Canadian Lyme Research
http://www.lymehope.ca/advocacy-updates/patient-first-research-patient-first-engagement-patient-first-values-and-preferences-patient-questions-making-an-informed-choice

Spotlight on G. Magnotta Research Lab and Dr. Melanie Wills

"We are taking a stand against an escalating threat [of Lyme disease in Canada], and we are doing so by taking a very powerful weapon to that table.. and that weapon is science."

"one of the unique things we offer in this lab is a clinical academic pipeline and that's what really sets us apart. What we are trying to develop here is this idea that we are going to be working with patients as stakeholders and collaborators in research and that we're studying the conditions that they find relevant..."

"We don't want to do research that doesn't have clinical significance, we want to bring something to the clinic that will impact the health of Canadians."
– Dr. Melanie Wills, PhD, Director, the G. Magnotta Lyme Disease Research Lab, University of Guelph

Canadian Lyme groups reject 'toxic tokenism' and 'one network only' approach to Canadian research

Canadian Lyme disease patient groups united to reject a 'one research network only' approach to Lyme Disease research in Canada.
https://www.lymehope.ca/news-and-updates/one-network-only-approach-funded-by-federal-government-rejected-by-canadian-lyme-patient-groups

https://www.lymedisease.org/canada-lyme-disease-token-patients/

VOCAL highlights In-utero transmission of Lyme disease at local Ottawa Womens' Show.

Oct 20/21, 2018: VOCAL Ottawa sets up a table at the Ottawa National Women's Show with a theme of in-utero transmission of Lyme disease as all Canadian women should be aware of the risk. Check out the good advocacy and education by VOCAL (Voices of Canadians About Lyme Disease) on Facebook: https://www.facebook.com/groups/OttawaVOCAL/

Canadian Mother starts online petition on behalf of her son with Lyme disease

October 21, 2018 - Ottawa Mother Starts Online Petition on behalf of her son with Lyme, unable to access appropriate care.
Our son Nicholas was bite by a tick, had a bulls-eye rash, he has endured all the terrible symptoms of Lyme and co-infections, we live in a very high-risk area, has a positive US Lyme test, and has shown to be responding well to antibiotic and medical treatment.
The past 5 months have been the roughest months of our family's lives, where Nick has suffered immensely, has been unable to attend school, and our whole lives have been turned upside down. But, we as a family and community are getting through it, but with little to NO support from our local children's hospital, and this NEEDS to change!
Please sign, comment and share this petition! https://www.change.org/p/cheo-the-children-s-hospital-of-eastern-ontario-change-hospital-policy-on-lyme
#LymeMomsUnite

Canadian child unable to access care for Lyme disease

October 16, 2018 - A Canadian child unable to access appropriate testing and treatment for Lyme Disease - an all too familiar story in Canada.

'Trent was taken to pediatricians, family physicians, specialists and emergency rooms. "In the last two years I have taken him to more than 13 doctors," Danielle says.
The Nimeth's were told different things about their son's condition. "It was allergies, Tourette's syndrome, ADD, OCD," says Matt.
The couple refused to accept it. They were convinced there was something else. After months of on-line research and connecting with on-line forums, they came to believe he might have Lyme disease.
Danielle requested a Lyme test from more than one of those doctors. "Nobody went through with doing it," she says.' Full story here: https://www.cbc.ca/news/canada/hamilton/a-u-s-lab-says-this-7-year-old-has-lyme-disease-canadian-mds-won-t-even-test-him-1.4860916
#LymeMomsUnite

Canada acknowledges in-utero transmission of Lyme Disease

Canada Acknowledges In-Utero Transmission of Lyme Disease.
Historic meeting with the Public Health Agency of Canada October 5th, 2018.
More here:

https://www.lymehope.ca/news-and-updates/breaking-news-canada-acknowledges-maternal-fetal-transmission-of-lyme-disease

Townhall Meeting MP and MPP collaboration - July 9, 2018

On July 9th, 2018, MP Diane Finley hosted a community Townhall meeting on Lyme disease for her constituents in Haldimond-Norfolk, Ontario. MPP Toby Barrett and Haldimond-Norfolk Public Health representatives joined LymeHope in this interactive, educational opportunity to share up-to-date materials related to Lyme and tick-borne co-infections but even more importantly to listen to those who are suffering - many unable to access appropriate care within Canada. Engaging in the difficult issues is a critical step forward! More information here: http://www.dianefinley.ca/finley-hosts-two-town-halls-on-lyme-disease/

Federal MP Round table - May 7, 2018

Federal MP Round Table:
On Monday May 7, LymeHope, along with CanLyme and the G. Magnotta Foundation and supported by Provincial Lyme groups, co-hosted an all-party MP Round Table education event on Lyme Disease in Canada. There was a great turnout, with over 40 MPs and/or their staffers in attendance from all parties. Your emails, letters and meetings with your MPs have had an impact!

We would like to acknowledge and thank MP Tracey Ramsey (NDP – Essex ON) and MP Randy Hoback (PC – Prince Albert SK) for co-sponsoring this event.

Education and Engagement - May 9, 2018

May 9, 2018 - LymeHope meets with Conservative Party Leader Andrew Scheer, Shadow Health Minister Marilyn Gladu, Deputy Leader Lisa Raitt and National Conservative Caucus Chair David Sweet. Engagement with elected officials is critical - as they represent and act on behalf of their constituents.

ILADS guidelines on Public Health Website

June 6, 2018 - The Public Health Agency of Canada has now listed the International Lyme and Associated Diseases Society (ILADS) treatment guidelines - on their website - as one set of evidence-based treatment guidelines for Lyme disease.
Click here for more information:
http://www.lymehope.ca/news-and-updates/ilads-guidelines-on-public-health-agency-of-canada-website

Lyme Carditis

May 30, 2018 - CTV National News coverage on Lyme Carditis and interview with Canadian cardiologist Dr. Adrian Baranchuk from Queens University, Sue Faber, RN, and Adam Flisikowski - 19 year old diagnosed with Lyme Carditis. Interviews and online information here:
http://www.lymehope.ca/news-and-updates/ctv-national-news-lyme-carditis

Benchmark National Public Opinion Survey in Canada on Lyme Disease, 2017

Findings include: Approximately 4 million Canadians report that they or someone they know in Canada has been diagnosed with Lyme disease. Compared to the number of reported cases by the Public Health Agency of Canada for 2015 of 917 cases.

30% of Canadians have never heard of Lyme disease
Only 9% of Canadians say they “know a lot” about the disease
97% of Canadians are unaware this disease can be passed from mother to child during pregnancy
almost 80% of Canadians are generally concerned about getting Lyme disease.

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Award-winning artist Tara Shannon affected by Lyme Disease aligns with not-for-profit LymeHope to help raise awareness in Canada.

Toronto, ON (May 07, 2018) - Award-winning adult contemporary artist Tara Shannon is proud to align with LymeHope, a not-for-profit organization dedicated to education and outreach on the subject of Lyme and related diseases in Canada. After being personally affected by the disease in recent months, this cause is close to the artist’s heart. LymeHope aims to raise awareness on the devastating disease affecting four-million Canadians. Known for supporting local and national charitable campaigns throughout her career, including the Butterfly Child project and Big Brothers and Big Sisters’BeYou, Tara looks forward to give her voice to LymeHope.

Maclean's article features LymeHope

Our advocacy work /meeting with the Minister of Health is featured both online and in print in December 2017 Maclean's Magazine:
http://www.lymehope.ca/advocacy-updates/how-the-new-impatient-patient-is-disrupting-medicine

Lyme and Pregnancy

LymeHope Presentation on Maternal Child Transmission of Lyme Disease:
https://youtu.be/SLFRYVcGeR4

32 Years of documentation on transplacental (mother to child) transmission of Lyme disease/congenital Lyme/adverse outcomes:

http://www.lymehope.ca/advocacy-updates/march-03rd-2018

LymeHope Updates, Resources and References on Lyme/Pregnancy/Gestational Lyme:

1:) http://www.lymehope.ca/advocacy-updates/informative-case-study-on-congenital-transmission-of-lyme

2:) http://www.lymehope.ca/advocacy-updates/canadian-families-with-lyme-disease-concerns-of-maternalchild-transmission

3:) 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

4:) http://www.lymehope.ca/advocacy-updates/health-and-welfare-canada-1988-report

Parliamentary Testimony - June 2017

June 6th, 2017 - Parliamentary Standing Health Committee Testimony - Jennifer Kravis https://youtu.be/9wLAgudDsjY

June 6th, 2017 -Parliamentary Standing Health Committee Testimony - Sue Faber https://youtu.be/-gByuqmZBNk

Nov 13, 2017 - Our first LymeHope event featured here: https://www.insidehalton.com/news-story/7920182-those-with-lyme-disease-deserve-more-attention-oakville-forum/

Our Hope for Every Canadian

a) be fully aware of the prevalence, severity and symptoms of Lyme and associated tick-borne infections including alternate modes of transmission
b) have access to appropriate and reliable testing
c) have access to healthcare professionals who are experienced in making clinical diagnoses of Lyme disease
d) have access to patient-centred treatment and individualized care - for all stages of the diseases, whether acute or chronic
e) not have to pay out of pocket or seek expertise outside of Canada for medical care.

Disclaimer: LymeHope is dedicated to education and outreach on the subject of Lyme and related diseases in Canada and run by volunteers. We provide free information and support services to patients and caregivers as well as members of the public. The information that LymeHope provides does not replace your relationship with your doctor and in no way is intended to constitute medical advice. The information is for your general use, so be sure to talk to a qualified healthcare professional before making medical decisions or if you have questions about your health. We encourage Internet users to be careful when reviewing any medical information on the internet.
We do our best to make sure that the information we provide is accurate and reliable but cannot guarantee that it is error-free, complete or up to date. We include links to other organizations in Canada, U.S. and abroad for information purposes but we cannot endorse, recommend, authenticate or be held responsible or liable in any way for any information contained therein. LymeHope is not responsible for the quality of the information or services provided by other organizations and mentioned on lymehope.ca, nor do we endorse any service, product, treatment, medical professional or therapy.