LymeHope Chronology of Events
What is Lyme?
Lyme Symptoms - Adults and Children
Diagnosis and Testing
Safe Tick Removal
Ontario Lyme Recommendations
Lyme Petition
Lyme Letters Canada
LymeVoice
A bit more about us..
Jennifer Kravis (formerly Howard) is a retired lawyer and former Bank executive with a B.A. in Political Science from Western University and a law degree from University of British Columbia. She practiced corporate law at a leading Canadian law firm and then worked as an Executive in the field of Compensation / Human Resources with a large Canadian Bank.
At age 36, in perfect health, Jennifer fell suddenly, severely ill and within a year had to leave work when she became completely bedridden. As is unfortunately very common for Lyme victims in Canada, Jennifer saw many Canadian specialists and had every test imaginable and after a 12 month investigation, was told she was a "mystery case", was diagnosed with "chronic fatigue syndrome" and "fibromyalgia" and told her conditions were of "unknown cause" and incurable.
It cost many thousands of dollars and 6 years for Jennifer to receive appropriate Lyme testing (positive) and a clinical diagnosis of Chronic Lyme & multiple Co-Infections - out of pocket and outside of Canada. Initial elation at a diagnosis faded upon the realization that there is virtually NO recognition or treatment in Canada for the late stage, disseminated / chronic forms of these illnesses which, once again, necessitated spending personal funds to travel to the U.S. for appropriate care and treatment. After several years of long term antibiotic treatment under the care of a compassionate and knowledgeable doctor in the U.S., Jennifer has made significant recovery but is left with permanent damage from the long period of undiagnosed and untreated systemic infections.
Jennifer is also a mom to children with late stage, disseminated Lyme disease and multiple Co-Infections. Jennifer's involvement with LymeHope arose after a chance encounter with Sue Faber on Facebook in 2016. Together, Jennifer and Sue started LymeHope as a vehicle to provide support and hope to Lyme sufferers across Canada, and to drive change in Canada to ensure that other families infected with Lyme & related diseases will be able to access up to date, comprehensive and compassionate care and treatment at home. LymeHope also aims to be a trusted information resource for medical professionals interested in learning more about these diseases.
Jennifer and her husband live in Oakville Ontario, have 4 children and 2 dogs.
Sue Faber is a married, mother of three daughters, residing in Burlington, Ontario. She is trained as a registered nurse (BScN) with a background in ER nursing as well as case management in the community. Sue's heart has always been advocacy and giving the marginalized a voice and a solid platform in which to rise up above adversity, her Christian faith is her personal anchor.
Sue and Jennifer have a shared determination and passion to do whatever they can to advocate, educate and be a small beacon of Hope to Canadian Lyme sufferers. They coauthored the Canadian Lyme Petition which now has over 62,500 signatures from across Canada and growing each day - Canadians are also leaving comments about their difficulties getting treatment, proper testing and support within the Canadian medical system - these comments are powerful and eye-opening to policy makers, politicians and other influencers as to the lived reality of those who suffer with Lyme disease.https://www.change.org/p/minister-petitpas-taylor-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now
Sue was diagnosed with Lyme Disease in 2016, after over 15 years of being symptomatic with over 20 'strange symptoms', and progressively getting worse including: tachycardia, memory problems, choking, coughing, migratory pain and profound fatigue. Sue's story is not unfamiliar, and echoed by so many fellow Canadians. The truly tragic thing is that as an RN, she never once considered Lyme as the culprit, after-all, she never had the 'mandatory tick bite' or 'bullseye rash'.
Sue's doctor, after exhausting all avenues to figure out what was wrong with her, including referrals to several specialists and every conceivable laboratory and diagnostic imaging test, finally as a last resort tested her for Lyme with the words 'there is lots of hype in the media about Lyme disease'. The test came back positive. Sue was promptly told that her test was a false positive and within a week was forced to book an appointment with a Lyme specialist in the US.
As a result of her diagnosis, Sue started conducting extensive research on Lyme and soon discovered pathology reports and case studies which had identified the potential for the Lyme bacteria to be passed transplacentally, from an untreated mother to her unborn child. As Sue read about common symptom clusters of congenitally infected babies, she started connecting the dots to each of her own daughters who had also struggled with health issues from birth. Subsequent testing revealed confirmation that all three had been exposed to Lyme disease, two of whom were symptomatic. This discovery devastated Sue and her husband Andrew - as they soon realized that they would be caught in the midst of a healthcare system which wouldn't support the medical care and expertise they would require - they would be added to the line of the rising number of 'medical refugees' - forced over the border into the US and internationally for appropriate care. It was a financial blow when the first year of treatment for Sue and her daughters cost over $40,000.00.
Both Sue and one of her daughters also tested positive in Canada for Lyme disease but later told by Public Health Officials that their cases did not meet 'case definition criteria' for Lyme disease surveillance in Ontario. We are aware of many other Canadian Lyme sufferers who are 'not counted' in surveillance statistics and thus not formally recognized or acknowledged.
So, like so many others, Sue has a reason to push, to question and to advocate. As a registered nurse and with her expertise in Lyme disease but also lived experience as a patient having to navigate the healthcare system, Sue is passionate about uniting and empowering physicians, nurses and other allied health professionals - with a common goal of holistic, evidence based patient-centred care and research.
Sue recently co-authored a nursing resolution for the Registered Nurses Association of Ontario – based on the needs and voiced concerns of Canadians coast to coast. 'Patient First Treatment for Ontarians with Lyme Disease'– which was passed at the annual AGM in Toronto this past spring. http://www.lymehope.ca/news-and-updates/registered-nurses-association-of-ontario-resolution-on-lyme-disease
LymeHope is a grassroots initiative which will be built stone by stone - with the support and shared expertise and leadership of many hands, many hearts and many committed individuals - also willing to step into the Lymelight. We believe with all our hearts that the best is yet to come. www.lymehope.ca
Tamara House: Tamara is a registered Real Estate Salesperson and lives with her family in Grey County, Ontario. Tamara serves as Vice-President of children and families for LymeHope.
In 2005, Tamara's son presented with a Bulls Eye Rash (no tick was found) and was treated for Cellulitis. Over the next several years, her son began to display both neurological and physical symptoms that individually appeared to be unrelated to one another, however his health continued to decline and was subsequently given a plethora of diagnoses until he eventually became bed-bound in 2013. As is with the majority of Chronic Pediatric Lyme Patients, Tamara took her son to a multitude of Doctors and Specialists for a decade before he was finally, correctly diagnosed with Lyme Disease and Co-Infections in 2015. With appropriate treatment, Tamara's son has seen great improvement. In 2017, Tamara and her other child were both tested, she discovered that she is CDC positive for Lyme Disease and her other child's tests suggest exposure as well.
Tamara looks forward to the day when all Canadian Lyme patients will be promptly diagnosed and treated appropriately here in our own country, with the same compassion and dignity afforded to all Canadians in times of health crises. Far too many families have been broken apart, bankrupt and desperate for help. Far too many children have lost their entire childhoods to these infections, being mislead, misdiagnosed and mistreated. Canadians enjoy an outstanding health care system with world class medical minds. There is a tremendous Canadian research network, The Canadian Lyme Consortium, that was recently founded to blaze a fresh trail in patient-centered Lyme disease investigation, driven to address the substantial gaps that exist in the understanding, diagnosis, and treatment of this complex, debilitating illness. With these in mind, Tamara has great hope for both her children, and all Canadian children afflicted with these stealth and devastating infections, that all will be given the opportunity to realize their full potential, hope for increased awareness and understanding, education, research, advancements in treatment, and eventually, a cure.