JUL 23, 2017 — We have some amazing news!
It only took us (Sue Faber and Jennifer Kravis) 3 trips to Ottawa, many meetings with MPs and Senators, a few media interviews, plugging a petition that now has 41,289 signatures and almost 11,000 comments, reading hundreds of personal Lyme letters and thousands of Petition comments, and and 6 months of Sue calling and writing Minister Philpott's office requesting a face to face meeting ... to finally be invited to meet Minister Philpott in September!
At this meeting, we will be personally delivering the thousands of Lyme Letters and speaking to the suffering and injustice inflicted upon thousands of Canadians coast to coast.
We have become accidental activists. That's what happens when you get Lyme Disease in Canada. Then realize there's NO help or recognition, and you start to really suffer, lose your job and realize you have to leave Canada and spend your retirement savings to get treated. Then you realize your kids have it too. Then you realize this is happening to thousands and thousands of others. Then you get confused, and experience disbelief, then you start feel sad, then you get MAD. Then you realize, you know so much, and it's so wrong, and now you are hooked. You HAVE to do something because there are so many others who are so much sicker than you that CAN'T do anything. So those of us who can, MUST.
We have seen that Minister Philpott is passionate about the needs of the underserved and forgotten, and she herself was raised on the value of serving others. She has written that she chose the medical profession so that she could “come in contact with people to address real needs to make a real difference”. She stated that there “will always be opposition” and that leading the Ministry of Health would be a “daunting task”. We trust she has been put in this position for a time such as this. We have hope that Minister Philpott, who is a caring, kind and committed mother and politician, will do the right thing. We need justice, fair and equitable treatment, mercy and hope.
We need our faith in Canada’s health system for Lyme sufferers restored.
We both struggle with serious health effects from Lyme Disease. We have sick children at home. We have busy lives and families to care for. This is not our idea of a good time, and this is not that comfortable for us, we have never done anything like this before. We are nervous, and feel a huge responsibility. We don't know how this will go. We know we have the hearts and support of TENS of THOUSANDs of Canadians.
BUT, this is important. Important enough that we are leaving our families, and flying to our capital city to DO something.
Because this is ridiculous. And WRONG. Canadians are literally begging to be heard, writing pages and pages of the saddest stories of neglect, abuse, denial and mistreatment. Children are hurting, and are being shockingly mistreated and UNTREATED. And this is putting MORE and MORE Canadians at risk as the threat of Lyme Disease and the expansion of ticks just grows and grows.
Here is a recent newspaper article featuring our Lyme advocacy work.
July 15, 2015 — Yesterday our federal Health Minister Jane Philpott posted a message regarding prevention of Lyme disease on her Government Facebook page (Heading is 5 Ways to Prevent Tick Bites). While we agree prevention is an important message, we feel there is much more that needs to be addressed by our Health Minister on the subject.
For example, we would like to see a lot more guidance and updated education to medical professionals on how to clinically diagnose and properly treat early Lyme cases based on symptoms, since it is well established that the test is not accurate for at least 6 weeks, and also misses many cases after that time period.
We would like to see guidance and education to the general public and medical professionals on the diagnosis and appropriate treatment of late state, disseminated Lyme disease and Co-Infections. We would like to see more discussion and awareness of the myriad of misdiagnoses that are commonly mistakenly attributed to Lyme victims, including arthritis, chronic fatigue syndrome, fibromyalgia, alzheimers, psychiatric conditions, lupus, MS, ALS and Parkinson’s disease.
We think it is crucial that the suffering and frustration of Lyme victims of all ages is heard and acknowledged.
We think the issues of transmission of Lyme during pregnancy, possible sexual transmission and blood supply safety must be urgently addressed.
We think $4 million (spread over several years) is a grossly inadequate investment for a disease as serious and as fast growing as Lyme disease.
We think the general public and all medical professionals need to be educated about, discussing and considering the possibility of the multiple Co-Infections that exist in our ticks and mosquitos – such as Babesia, Bartonella, Q Fever, Rocky Mountain Spotted Fever, Anaplasma, Tularemia, Powassen Virus, Coxsackie Virus, among others.
What do you think?
We suggest that this is a great opportunity for your voice to be heard on the subject. You can leave your personal story, your comments, concerns and questions below this post – find it by clicking here to go to Minister Philpott’s facebook page, then scroll down until you find this post, then type in the “comments” section.
Then, please continue to share this Petition and encourage even more Canadians to sign it. Thank you for your continued support.
Celebrating our Democracy – House of Commons Health Committee Study into the Lyme Framework - Part 2
Testimony from Jennifer Kravis at the Standing Health Committee
Celebrating our Democracy – House of Commons Health Committee Study into the Lyme Framework - Part 1
JUL 5, 2017 — We hope everyone enjoyed a special Canada Day weekend with their friends and family, and had time to reflect upon all the wonderful things we enjoy living in this great Country. Although it’s been a while since we sent an update, we continue to be busy pushing forward with our advocacy work.
One of the blessings of living in Canada is that we have a democratic Government and as a result, we enjoy the right to free speech and a democratic process.
We are happy to share that, as a result of continued advocacy, meetings with and letters to MPs and Senators in Ottawa over the last couple months, the House of Commons Standing Committee on Health agreed to study the Federal Framework on Lyme Disease which was released in final version on May 30, 2017.
On June 6 & 8th, 2017, the Health Committee held 2 sessions to hear from a variety of Lyme stakeholders who were called to testify about their concerns with the Lyme Framework.
Ms Sue Faber and I were both called to testify as patients and advocates. Ms Janet Sperling, CanLyme director, and Dr. Vett Lloyd from Mount Allison University, both testified as scientific experts, and Dr. Ralph Hawkins, MD and Dr. Elizabeth Zubek, MD, both appeared to testify as medical experts and clinicians. Finally, Dr. Howard Njoo, the Acting Assistant Deputy Minister, Infectious Disease Prevention and Control Branch testified on behalf of the Public Health Agency of Canada, and Ms Margaret Fearon and Mr. Jean-Paul Bedard from Canada Blood Services also appeared.
JUN 1, 2017 — Two days ago, our federal Health Minister Jane Philpott announced the release of the final federal Framework for Lyme Disease – the long awaited “Action Plan” to address the growing epidemic of Lyme disease and Co-Infections across Canada and the result of almost 5 years of advocacy and Government work.
When this Petition first launched in February 2017, it was in response to the first draft of this Framework released on February 7th. This Petition asked our federal Public Health Authorities, and our federal Health Minister Jane Philpott, to “fix” the Framework, specifically by including actions to address the following severe deficiencies in the first draft we saw:
- it was silent on the divergent medical and scientific view-points
- it ignored and buried the hundreds of peer-reviewed scientific literature regarding the complex nature of this disease including persistence of infection, alternate modes of transmission and other emerging science
- it was silent on the documented risk of congenital transmission
- it was silent on Co-Infections - the multiple other serious diseases transmitted along with Lyme
- it was silent on the disproportionate risk to our children
- it had NO action to address the well-known flawed testing
- it was silent on the divergence of expert opinion on treatment protocols both in the early and chronic stages of Lyme Disease
- it failed to provide an emergency strategy that would enable existing Lyme patients to access the care that they need NOW
- it had no mention or action to address the potential tainted blood supply
- it did not address the possibility of sexual transmission
In the final Framework released on May 30th, only two of the above issues were addressed, and only in a vague and cursory manner. First, there is an acknowledgement of a second set of treatment guidelines developed by ILADS – the International Lyme & Associated Diseases Society (www.ilads.org); however the Framework makes it clear our Government continues to recommend the seriously outdated and biased limited treatment guidelines that have been in use for over a decade and are clearly not effectively addressing this crisis.
In addition, there is an acknowledgement of Co-Infections: the final Framework states that:
“Ticks may also transmit multiple other pathogens, including bacteria and viruses, with the potential to cause a range of human illness.”
However, none of the specific Co-Infections were named, and the only “action item” was as follows:
“Moving forward, a national tick-borne surveillance system will be developed that includes Lyme disease and other possible co-infections.”
The only funding attached to this Framework was $4 million which is part of a previously announced budget for health related issues associated with climate change ($47 million) and the entire $4 million has been allocated to “research”. There is no dedicated funding for education of the public, education of medical professionals or the national surveillance system referred to above. $4 million is an embarrassing, paltry sum, given the magnitude of this disease and the severity of the threat to Canadians.
In our view, this final Framework is completely inadequate, fails to address in any meaningful way ANY of the serious issues outlined in this Petition, and endangers every Canadian who is at risk of this growing epidemic.
To add insult to injury, the closing sentence of this Framework states:
“This Framework will be reviewed within five years of its publication on the Canada.ca website.”
Our Government is attempting to sweep this issue under the rug, and wash their hands of this epidemic for the next 5 years. We simply cannot allow our elected officials to ignore millions already suffering, and those joining the ranks daily across Canada.
Therefore we strongly urge you to continue to share this Petition and encourage more Canadians to comment, sign and share.
Below are two TV interviews with Jennifer Kravis and Sue Faber that aired on national evening news shows Tuesday evening in response to the release of the final Framework, as well as a CBC radio interview featuring Arlene Rill, a Lyme patient and advocate from Montreal, and Janet Sperling, a researcher and director of CanLyme.
We are determined to continue to advocate and raise awareness of the threat of Lyme disease and co-infections in Canada. Thank you for your continued support and engagement.
MAY 29, 2017 — This Saturday June 3, 2017, please join us at one of the numerous events occurring across Canada to get VOCAL (Voices of Canadians About Lyme)!
Please come out with family and friends to show our Government that YOU are concerned about Lyme disease and the safety of your family. Please share this information all across Canada!
Sue Faber and I are very honoured to be among the many speakers at the Ottawa event. Details below, hope to see you there!
VOCAL – VOICES OF CANADIANS ABOUT LYME:
A Nation-Wide Lyme Disease Awareness Campaign – June 3rd, 2017
Please join this Canada-wide initiative on Saturday June 3rd (Sunday June 4th in St. John’s Newfoundland) in capital cities across Canada. VOCAL will be hosting events to raise awareness of Lyme disease including presentations, musical performances, rallys, walks, and demonstrations.
To raise awareness about this EVER growing silent epidemic to the general public, and to unite Canadians across Canada who are suffering from Lyme disease!
How Can You Help:
Please encourage and invite your family and friends to join you at one of the following events:
When: Saturday, June 3, 2017 - 1:00pm – 4:00 pm *Live tick drag demonstration at noon.
Where: Parliament Hill, Ottawa, ON
Information: There will be musical performers, guest speakers including celebrity advocates, doctors and researchers, an information desk, a live tick dragging demonstration, and fun for adults and children. Come learn more about Lyme and tick borne diseases affecting all Canadians!
Contact: Lesley Fleming – firstname.lastname@example.org
Note: we are a completely grass roots organizing committee comprised of people living with Lyme Disease committed to bringing more awareness and action to this worldwide silent epidemic. We would greatly appreciate a donation of any size to help cover our costs and to continue our advocacy efforts to protect all Canadians
When: Saturday June 3, 2017, 9:00am - 4:00pm *guest speaker at noon
Where: Dr Wilbert McIntyre Park, 8303 104 St NW, Edmonton (Beside the Old Strathcona Farmer's Market)
Information: Dress in lime green as well!! Bring as many people with you.
Contact: Kim Zapesocki – email@example.com
VOCAL SASKATCHEWAN (Saskatoon):
When: Saturday June 3, 2017 - 8 am – 2 pm
Where: Farmers Market, 414 Ave B South downtown Saskatoon, Saskatchewan.
Information: Information regarding Lyme and tick borne diseases will be available to the public, take home info pamphlets, Bite out of Lime challenge, awareness chakra bracelets for sale, and some draw prizes
Contact: Marilyn Hamoline – Marilyn@marilyme.com
VOCAL SASKATCHEWAN (Regina):
When: Saturday June 3, 2017 - 8 am – 2 pm
Where: Farmers Market, Regina, Saskatchewan.
Information: Information regarding Lyme and tick borne diseases will be available to the public
Contact: Paula Stefankiw – firstname.lastname@example.org
When: Samedi le 3 juin, 2017 - 1:00 – 4:00 pm.
Where: parlement de la ville de Quebec
Information: Médias et politiciens sont invités. Radio-Canada et le Soleil ai si que le journal de Montreal sera là et nous attend ne une confirmation de Tva nouvelles.
Information: Rachel Guignard – email@example.com or Vanessa Attick – Vanessa.firstname.lastname@example.org
VOCAL NEW BRUNSWICK (Sackville):
When: Saturday June 3, 2017, 1:00-3:00pm
Where: Dr. Vett Lloyd’s lab at Mount Allison University, in Sackville, New Brunswick is hosting an open lab day.
Information: Anyone is welcome to drop into the lab and see some ticks and hear how they test them.
Mount Allison University, with support of the Canadian Lyme Disease Foundation, has formed a Lyme Disease Research Mode. – https://www.mta.ca/Community/Research_and_creative/Tick_and_Lyme_disease_research/Tick___Lyme_disease_research/
VOCAL NEWFOUNDLAND (St. John’s):
When: Sunday, June 4th – 2:00pm*
* note St. John’s event is Sunday 4th, not Saturday the 3rd
Where: MMAP Gallery on the 2nd floor of the Arts and Culture Centre in St. John’s Newfoundland.
Information: Jean Hewson and Dana Brothers will be hosting a Lyme info session 2:00 p.m.
One of our priorities will be to create a network of Lyme sufferers and their supporters in Newfoundland. Details – https://www.facebook.com/events/1687303961575707/
VOCAL NOVA SCOTIA (Halifax):
When: Saturday, June 3, 2017 - 12 noon until 5 pm
Where: Ondaatje Hall, Dalhousie University (Ondaatje Hall is in the Marion McCain Arts and Social Sciences Building on University Avenue near the Rebecca Cohn – https://www.dal.ca/campus-maps/maps.html.)
Welcome and Introductions
Dr. Rob Murray – CanLyme Director
Dalhousie University Tick Testing Programs
April Pasley, Lyme Sufferer
Andrew Hebda, Museum of Natural History
Dr. Bryan Rade, Naturopath
Bob Giguere, IGenex, a California blood testing company (http://www.igenex.com/)
Tracy Cochrane – Lyme Sufferer & Patient of Dr. Dubocq
Dr. Richard Dubocq, US Lyme Doctor
Q&A with Presenters – If there is time
There is no fee but donations will be gratefully accepted, in cash or via email transfer to email@example.com with the password “vocal”.
Contact: Donna Lugar at firstname.lastname@example.org or 902-835-5643.
VOCAL NOVA SCOTIA – Antigonish:
Where: Antigonish Farmer's Market, James Street
When: Saturday, June 3, 2017 - 9:00 am - 1:00 pm
Contact: Nansea Tomalty - email@example.com
VOCAL PRINCE EDWARD ISLAND:
Plans are in the works for a Walk/Run for Lyme Awareness. More information to follow.
Contact – Stefanie Clark – firstname.lastname@example.org
MAY 16, 2017 — In honour of Mother's Day yesterday, we would like to dedicate this post to Lyme Moms.
Life for Lyme Moms is a bit different than most moms. Today, we wish Lyme Moms and their children a seizure-free, anxiety-free, pain-free and mobile day for your kids - a day where they might be able to go outside and feel the sun on their face and hear the spring birds singing. We know that's what all Lyme moms want for Mother's Day and every day.
My friend wrote this about Lyme Moms, and I hope she won't mind me sharing:
"Lyme moms help with physio exercises many times a day, help with school work, help them bathe, help them take medications, help them dress, drive them to countless appointments, wipe their tears, cancel their sports practices, pray with them, encourage them, lie beside them when they shake from the pain, make silly faces at them during blood work, hold their hands while they go through countless medical procedures, have umpteen conversations with their child’s teacher, and often make multiple trips to the school on days they can push through only a couple hours of school."
Lyme moms are fierce Lyme Warriors, fighting every day, in every way they can, for a better future for their own kids, and all kids - a future free of Chronic Lyme Disease. A future where all our doctors are up to speed and treat and cure their patients with Lyme with prompt treatment & compassion; a future with a very accurate test, and the latest comprehensive treatments. Most of all, a future where the Canadian health system welcomes, comforts and supports those with Lyme & Co-Infections.
We would also like to share our recent live radio interview with Bill Kelly of AM900 CHML in Hamilton. We had a good discussion of the risks to pregnant women who are infected with Lyme disease. If they are untreated, research suggests they can pass this infection onto their unborn children with very serious potential consequences. Some of the scientific articles documenting transplacental transmission of Lyme from mother to child are listed below.
Go to the link below; use the drop down menu to select "May 11th" and "11:00am", the interview starts at 8 minutes in:
It will only be up on CHML website until May 21st.
We are two mothers, both with children suspected of congenital infection of Lyme disease during our pregnancies. In this beautiful weather, enjoy your families and the outdoors, but be safe. Please, educate yourself at www.canlyme.com and www.ilads.org about prevention, risks, proper tick checks and removal and signs and symptoms of Lyme & Co-Infections so you can keep you and your family safe.
Thank you Bill Kelly & CHML AM900 Hamilton for raising awareness of this important topic! And thank you www.Canlyme.com for all you have done to educate and advocate for Lyme Disease in Canada.
Happy Mothers Day to the strongest mothers I know.
MAY 13, 2017 — Thanks to all of YOU who have commented, signed and shared this Petition, and helped us with our expenses for our trips to Ottawa, we are so happy to share with you the awareness raised in the House of Commons on May 12th.
We had the pleasure of meeting both MP Webber and MP Carrie in Ottawa, and we are so appreciative that they listened to YOUR voices and are taking action to protect Canadians.
Please consider leaving a thank you in the comments on these two MPs facebook posts, for raising awareness on Lyme and letting them know you too are concerned!.
Watch MP Len Webber, Conservative for Calgary, ask about funding for Lyme Disease (copy and paste the link into your browser bar, you may need to login to your Facebook account):
And, please watch Dr. Colin Carrie, Conservative MP for Oshawa, ask the federal Health Minister's office about our advocacy work, and whether they will meet with us and receive the thousands of Lyme Letters (outlined on www.lymehope.ca) (and the response):
Dr. Carrie's video is also on YouTube here:
MAY 6, 2017 — Sue Faber and I were in Ottawa May 2-5th meeting MPs and Senators, advocating for Lyme Disease. Below is the letter we left with every MP and Senator we met. This is what Canadians are telling us is happening in every Province and Territory across Canada. Our video update on our visit is also attached.
Concerned? Here is what YOU can do:
1. Write YOUR MP (or even better, ask for a face to face meeting) and tell him or her you are very concerned about Lyme Disease. Find your MP here: http://www.lop.parl.gc.ca/…/HouseO…/MemberByPostalCode.aspx…
2. If you have been affected by Lyme, send your story to email@example.com (see details of the Lyme Letter Campaign at www.lymehope.ca.) and please indicate if you consent to have your letter shared with media either with full names and city or just initials and city, and if LymeHope can keep a copy as a record.
2. Sign the Ticking Lyme Bomb Petition:
Dear Honorable Member of Parliament,
The draft document known as the Federal Framework for Lyme is completely inadequate and a slap in the face to all Canadians who supported and pushed for Bill 442. In good faith, we expected complete transparency and partnership.
We expected that the Framework would incorporate the compelling feedback and concerns from the Lyme sufferers on record, and the cutting edge science presented by the doctors, experts and researchers from around the world, also on record.
We expected collaboration which would be marked by an invitation and willingness for equal partnership between federal bureaucrats, Public Health Agency of Canada (PHAC), policy-makers and Lyme stakeholders. However, this didn’t happen.
Lyme stakeholders were shut out and ignored, they were not consulted for input. This has devastated the Lyme community from Coast to Coast.
These are our Concerns:
Lyme Sufferers Systematically Ignored: Canadian Lyme sufferers have been calling out, speaking out, crying out, literally begging the government for help and equitable access to appropriate testing, assessment, and treatment. Some for decades.
Dismissiveness, Belittling and Denial: Canadian patients are encountering dismissiveness, ridicule and shame when they consult medical professionals on Lyme disease, some are even sent denial letters by Infectious Disease specialists. They are told to stop ‘trying to self-diagnose with Dr Google’ and to stop seeking the ‘disease du-jour’.
Denied Disability Benefits: Patients are being denied disability benefits because ‘chronic Lyme doesn’t exist.’
Financial Hardship: Patients who seek proper diagnosis and treatment are forced to become medical refugees and in so doing, often incur debt to pay for their care. Some patients rely on fundraisers and the kindness of their neighbors, families and communities to crowd-fund on their behalf.
Lyme Experts labelled as Quacks: When we do get diagnosed with Lyme disease outside of Canada, we are told that the Lyme Literate physicians, naturopaths and other practitioners are quacks and profiteers.
Suicide: Patients are being driven to despair and hopelessness. Suicide is the number one cause of death among Lyme sufferers.
Fear and Silence: Families affected by Lyme often isolate themselves. They are genuinely afraid that if they are vocal about the abuses they have faced, that they will be refused care or labelled as crazy.
Children and Families Losing Hope: Many families are finding themselves in huge debt, marriages are strained, children are losing hope as they cannot attend school. Lives are being shattered by chronic illness.
Exhaustion: Patients are exhausted as they are continuously forced to defend and ‘present their case’ on behalf of themselves and their children. Fear, uncertainty, disillusionment in our medical system prevail.
Congenital Transmission: Many parents believe that their children were transmitted Lyme disease through transplacental transfer. Untreated maternal Lyme Disease, thus, an unknowing, infected mother, passing this serious infection to her unborn child in utero, will likely be the next wave in this epidemic.
Sexual Transmission: Lyme Sufferers are concerned that this infection can be transmitted sexually. Recent research on this subject must be evaluated without bias.
Lyme Doesn’t Exist Here: We are told over and over by those in the medical profession that ‘Lyme Disease doesn’t exist here’, or ‘I don’t believe in Chronic Lyme Disease’ or ‘the tick wasn’t attached long enough so don’t worry’, or, ‘your rash can’t be Lyme because we don’t have Lyme-infected ticks in our area, here put on this cream’, or ‘there are many people just like you, with symptoms just like yours, we just don’t know what it is, but it’s not Lyme’. We are offered no meaningful differential diagnosis.
High costs to Canadian Healthcare: Within Canada, patients are shuffled around from one specialist to the next and are subject to costly laboratory, diagnostic imaging, and tests to look for answers, in an effort to find answers to their complex, scary and debilitating symptoms. This costs thousands upon thousands of tax-payer dollars.
Labelled as Psychiatric: When medical answers can’t seem to be found, it is suggested that patients be seen by a psychiatrist and take an anti-depressant, or practice meditative yoga. Patients are often told that their symptoms are psycho-somatic or ‘all in their head’. Lyme Disease often manifests with neurological and psychological symptoms including infectious encephalopathy, OCD, anxiety, neuro cognitive changes and memory loss.
Out of Country testing – Patients Further Denied and Ridiculed: When patients obtain positive Lyme testing outside of Canada, they are further ridiculed and shamed. They are told to stop wasting their money and that these ‘outside’ tests are of ‘highly dubious value’ from ‘un-validated’, ‘for-profit’ labs. They are told that the Canadian testing is gold-standard.
Positive Canadian tests considered False Positive: To make things even worse, when patients do have the good fortune of testing positive with the Canadian ELISA (first tier), they are often told that this is a false positive and that they don’t have Lyme.
Limited Treatment: For the few who are diagnosed as having Lyme in Canada, they are given a month, perhaps an extension of another month or two of antibiotics based upon arbitrary IDSA guidelines. They are told up-front that their treatment will be limited and not necessarily based on treatment response. For most, the Lyme diagnosis takes place months to years later after the Lyme bacteria has systematically invaded their body, causing chronic systemic infection, inflammation and dysfunction. A month of antibiotics is totally insufficient for treating a systemic illness. Despite initial improvement, symptomatic patients are often cut off antibiotics prematurely and told that their infection has been adequately treated.
Placebo Effect: Many patients are told that their positive response to antibiotics is due to placebo effect.
Antibiotic Resistance: Long-term antibiotics are freely prescribed for dermatological conditions such as acne and rosacea. In contrast, Lyme patients are often denied life-altering treatment based on the fear of antibiotic resistance. Long term antibiotics are currently used to successfully treat tuberculosis, rheumatic heart disease and many other infectious illnesses.
Relapses: Even when patients relapse after a short course of treatment and in many cases, symptoms worsen, they are told there is nothing more that can be done and doors are closed to further treatment. They are told they have post-treatment Lyme syndrome or pain syndrome.
Failure to Identify Early Infection: The current health care system in Canada is set for failure when it comes to the all important early diagnosis, and once the disease has been allowed to disseminate unchecked or insufficiently treated early on, the late stage of the disease is completely mismanaged from coast to coast across Canada.
Denial of Chronic Lyme: Medical leadership deny the existence of chronic ongoing active infection despite the abundance of science; evidence based published peer-reviewed science.
Media Coverage Belittled: In a recent article from the Canadian Journal of CME, Oct 2016 – an Infectious Disease doctor advised another doctor with these words. ‘There is great publicity in the mainstream media about Lyme and the reporting has generally been shoddy and sensationalistic’. These repeated messages serve to denigrate and diminish the Lyme patients’ reality and, at the same time, to disseminate a sense of cynicism, suspicion and doubt amongst other health care professionals who read these opinions and take the comments of their peers seriously. So even when mainstream media report on this tragedy, their credible reporting and questioning of the status quo is shot down!
Denied access to Research Development and Design: Certain medical leaders in Canada have for decades owned all aspects of this disease and have made a mess. Our taxpayer funded Canadian Institute of Health Research (CIHR) continually funds indirect research that uses the same poor data that got us into this mess in the first place. Poor data in equals poor data out.
Lyme is not a Religion: Lyme Disease is not a religion or belief system. It’s not something to believe or not believe in. It exists, it is here, all across this Country. Patients often share how doctors tell them 'I don't believe in Lyme'. Its existence and persistence validated and reported in over 700 peer reviewed scientific journal articles.
What We Need:
Full Collaboration: Patient advocates and CanLyme experts (physicians, scientists, allied healthcare professionals and researchers) must be invited to the table to fully participate, discuss and determine the policies which will guide the Federal Lyme Framework. We must be equal partners to develop and direct education, surveillance, diagnostics and treatment of Lyme in Canada.
ILADS Guidelines Instituted and Physician Education: We need Canadian clinicians to receive education from physicians, scientists, and researchers from the International Lyme and Associated Disease Society – ILADS. We need our Federal Framework to include ILADS guidelines for treatment so that our physicians have direction and choice to provide us with the best possible care.
Physicians and Clinical Discretion: Medical regulatory colleges must get off the backs of doctors who are willing to diagnose and treat chronic Lyme disease and associated tick-transmitted diseases. Lyme disease is a clinical diagnosis, and must be treated accordingly.
New Testing: The two-tier Lyme disease system must be revisited and replaced with the Western blot as an initial screening test with full transparent reporting of banding patterns including bands 31 and 34. Other testing modalities such as EliSpot testing, nanotrap technology, tissue typing and DNA sequencing must be considered. We need the testing to cover the bio-diversity of Lyme strains which have clearly been identified.
Congenital Transmission, Sexual Transmission, Blood Supply Safety: We need the reality of congenital transmission (from mother to child) addressed and studied. It has already been identified and reported but for some reason, in Canada, not acknowledged. Internationally, sexual transmission and blood supply safety are being considered. There is credible, scientific, evidence based, peer-reviewed literature which backs up our concerns.
We need You to Address Real and Urgent Needs and Make a Difference:
We ask that you insist on compliance with Bill 442, reject the current draft Federal Framework and create a new inclusive working group which represents ALL stake-holders, as presented at the May 2016 Lyme Conference. We ask you to ensure that a new comprehensive Federal Framework is created that will protect and help all Canadians.
We ask that you speak out and advocate on behalf of Canadian Lyme sufferers. We need our hope in the Canadian medical system restored. This may seem like a monumental and even overwhelming task, but nothing is impossible.
Thank you for meeting with us to hear our concerns, and those of the people across this country. We all share similar stories of courage and bravery despite neglect, suffering and rejection within our healthcare system. Lyme Sufferers need help yesterday.
Sue Faber - RN BSc.N - Nurse, Lyme Sufferer, Lyme Advocate, Mother of three children with Lyme
Jennifer Kravis, B.A., LL.B -Lawyer, Lyme Sufferer, Lyme Advocate, Mother of one child with Lyme
MAY 3, 2017 — Today, on the 2nd day of Lyme Disease Awareness month, we are sharing the devastating story of Rose Schwarz, a young Canadian woman from the West Coast.
With her parents' permission, we share their heart wrenching and horrific story to honour Rose’s courage and her parents' bravery to share such a personal and heartbreaking story. We hope to raise awareness among Canadians of the devastating effects of undiagnosed Lyme and other tick-borne illnesses which lurk right in your backyard. No family should EVER go through what Rose and her family have endured.
Please, educate yourselves to protect your loved ones, especially your children, at www.canlyme.com and www.ilads.org. If you suspect you may have Lyme disease or other Co-infections, you must try to find a lyme-literate medical professional to help you, insist on testing for Lyme AND Co-Infections (but know a negative test does NOT rule it out) and early treatment. You may unfortunately have to leave Canada to get a proper assessment. Many tick borne diseases can be completely cured with early treatment, time is of the essence.
Rose had a promising future, excelled in school, had goals and big dreams for her future until a bite from a tick changed it all.
It started with heartburn and then acid reflux, which led to food coming up to the point that within a couple of years, nothing would stay down. Rose couldn’t even make it to the bathroom when she had to throw up, so she kept a bucket with her and wouldn’t eat during the day, just so she could go to school.
During this time, she was of course losing weight and we took her to various doctors and specialists where she had numerous medical tests, which showed nothing was physically wrong with her. She was labelled as a bulimic/anorexic, even though I explained that she wasn’t vomiting on purpose. An anorexic or bulimic hides her illness and does not walk around with a bucket and throw up in front of her family. The doctors wouldn’t believe me.
It was while I was studying for a medical terminology course that I came across the term, “Gastroparesis,” which means paralyzed stomach. I had never heard of this condition before so I did some research and discovered that the symptoms were exactly what Rose was experiencing. I convinced a specialist to test her for it and even told him what type of test she needed, which was a nuclear medicine stomach emptying test. The test came back positive for severe gastroparesis, but no one could tell us what had caused it. They labelled it as “idiopathic,” or no known cause, and told us her stomach was pretty much useless and all there was to do was just monitor her blood levels and gave us no advice or help besides weekly blood tests.
Rose’s weight plummeted to 71 pounds,(at 5'5") yet she still managed to graduate from high school, but of course college and all her other dreams were out of the question. None of the specialists we saw knew much about gastroparesis, let alone how to treat it, and didn't seem to take it seriously.
I continued my research and found out about an Enterra therapy gastric electrical stimulator that was being used to treat gastroparesis successfully for several years in the US, but in Canada was only implanted by a couple of surgeons for patients with type 1 diabetes, who often develop Gastroparesis.
I narrowed down a surgeon in Montreal and convinced him to implant one of these devices in Rose. So in February 2009, we made the trip and were there for one month. The surgeon also implanted a feeding tube at the same time, which helped Rose to slowly gain weight and she eventually got up to 95 pounds.
After almost two years of trying different settings on the device and even making a trip to Mississippi to see the foremost doctor in this type of therapy, where Rose saw him daily for a month, she turned out to be one of the 5% of gastroparesis patients that this device didn’t help and so we had to have it removed.
We couldn’t find a surgeon in BC that would remove it, so we had to travel to Calgary, Alberta for the surgery. Now we were back to square one and didn’t know what to do next.
In the meantime, now that Rose wasn’t eating at all and relying solely on tube feeding, she couldn’t even digest her own stomach acid and would throw up a litre or two of it a day, which led to her needing 23 crowns and 19 root canals over a three year period. After all that pain and suffering, she ended up having to have all her teeth pulled in 2012 at the age of 23 and now has full dentures.
Of course I continued my research and came across an online support group for Gastroparesis and through that found out about several people who had total gastrectomies and were able to eat again, even though it was small amounts throughout the day and certain foods had to be avoided. We looked into this very thoroughly because removing your stomach is not to be taken lightly. Once we decided that this was our only real option, we needed to find a surgeon.
It turned out that none of the GI surgeons in BC were willing to do the surgery on a patient with gastroparesis and only treated patients with stomach cancer, so we began to look outside of our province and once again had to go to Calgary.
Rose had the surgery and after a month of horrible complications and infections we came home. It has been almost three years now and unfortunately Rose is still unable to eat and still tube feeds for nutrition.
It turns out that, unbeknownst to us, the surgeon who performed the gastrectomy, left an 8 cm pouch of stomach because he thought it would be stronger than attaching the esophagus directly to the intestine. Unfortunately that small pouch of stomach still has gastroparesis and that is why she is unable to eat. Because Rose is so frail right now (67 pounds) there is no way that she could survive another surgery to remove the last portion of her stomach, but we are hoping that in the future it will be an option so that hopefully she will be able to eat again.
Now I must go back seven years ago to when Rose dug a tick head out of her leg while we were sitting outside on our deck. She first noticed the lump on her thigh when she was about fourteen. It was a small lump and because she had another small lump in her arm (still has it) and the doctor told her it was just a calcium build up she thought that was what the one on her leg was.
As the years went by it got itchy and closer to the surface and looked kind of dark. She started to pick at it over the period of a couple of weeks. She saw white at the surface, but could see something dark underneath. So finally one day got the tweezers and picked out a hard white thing (probably a calcium build up) and discovered something dark and squishy underneath. We immediately thought it might be a tick and went inside and did an image search of ticks and tick heads, knowing that sometimes when you get bitten by a tick the body will get knocked off, but the head stays inside. Sure enough the thing she picked out her leg looked exactly like the images we saw. We had heard of Lyme disease, but didn't know much about it, so I did some research and discovered that Lyme disease can sometimes cause digestive issues including gastroparesis!
So we went to our doctor and asked if Rose could be tested for Lyme disease. The doctor said she doubted Rose had Lyme disease, but I convinced her to test her. The doctor ordered the standard Canadian test (the ELISA, which we have since found out is not very accurate and most often comes back with false negative results.) It did come back negative, so we moved on and continued to explore other possibilities.
About four years ago a friend of ours was diagnosed with Lyme disease by Igenex lab in California. We found out that this particular lab specializes in state of the art research and clinical testing for Lyme disease and associated tick-borne diseases. So we sent away for a test kit from the same lab, had the test done and the results came back 100% positive for Lyme disease, not only by the lab’s standards, but by the US Center of Disease Control standards, which is very rare. We even received a phone call from the President of Igenex labs telling us that Rose had severe, late stage Lyme and that we should seek immediate treatment.
Right around the time we got the results back Rose developed a non-stop excruciating headache ended up on narcotic medication that barely even touched the pain. She had many tests including MRIs and the doctors could offer no explanation for the headache. I had mentioned to our doctor that I thought the headache could be due to her Lyme disease, but since he didn't believe she had Lyme disease he made no comment.
Looking back and trying to figure out when Rose might have been bitten by that tick, we remembered that back when she was fourteen, we lived in an area known for deer ticks and she used to cut through a grassy, wooded property when walking to her friend’s house. It was shortly after that time that her early symptoms began to appear.
Doctors in Canada didn't believe that Rose had Lyme disease, in spite of the 100% positive test result, but there is no doubt in my mind that Rose had been suffering from Lyme disease since she was fourteen years old. Through my research I have found out that Lyme disease can attack the entire digestive system and cause among other things, not only Gastroparesis, but also intestinal malabsorption. Rose had already lost her stomach to this insidious disease and it was now moving down her digestive tract causing her intestines to stop absorbing normally. Now we had a diagnosis, but no idea what to do next. We were on our own in trying to figure out how to go about treating the Lyme and most likely one or more co-infections.
I discovered that many people think Lyme disease can be cured with antibiotics and this is sometimes the case. Through my research I found out that if Lyme disease is caught in the very early stages, most people are cured with a three week course of antibiotics. Rose had been infected for eleven years at that time and was well into the chronic, late stage of Lyme. Mainstream medical doctors cannot prescribe more than three weeks of antibiotics because any more than that is considered experimental for Lyme. Patients who want to try long term antibiotics have to go to a naturopath, who are now able to prescribe antibiotics here in British Columbia. After more research I learned that antibiotics have limited success in late stage Lyme disease. It is this lack of success in long term cases that fuels some of the controversy that rages over treating Lyme patients in the mainstream medical community.
Because Rose was already dealing with damage to her digestive system, we felt it would be a huge risk for her to take antibiotics and possibly damage her intestinal health even further. She was no longer absorbing properly and her weight had plummeted down to 62 pounds in spite of continuing to tube feeding 2300 calories a day.
After realizing that in Canada Lyme disease is very controversial and doctors do not really recognize or treat it, I found out that most people have to seek treatment in other countries, if they wanted to avoid antibiotic treatment. There are some alternative therapies available here in Canada, but just like the treatment out of country they are not covered by our health care and can end up costing many thousands of dollars.
We had no resources for funding treatment, but a friend told me about “crowdfunding,” so I decided to give it a try and amazingly raised $23,000 in one month!! We also held several local fundraisers and raised even more money. Now we had funding and had to decide on the best treatment facility to go with.
During this time Rose had biophoton therapy with a practitioner in Vancouver, however it did not seem to help.
After extensive research we chose a clinic in Mexico just south of Tijuana. For fifteen weeks Rose had many different treatments while at the clinic, including 350 million stem cells, some of which that were directly implanted into her spinal column and small intestine, natural killer cell therapy, gc MAF, neuropeptide therapy, bio magnetic therapy, as well as daily nutritional IV's etc. Rose also had many, many tests done in Mexico including, MRI's, a spinal tap, an endoscopy, etc. She also had weekly blood tests and her daily IV’s would be adjusted accordingly based on the results. There was a treatment available and the clinic in Mexico was ready to go ahead with it, but we already owed them $25,000 on top of the $23,000 we already spent and it would be another $15,000 for the new treatment. So once again we launched a crowdfunding campaign and raised more money and we headed back to Mexico for 2 weeks.
A few months after returning from that second trip to Mexico Rose was retested by Igenex labs. The result was negative and we were hopeful that the worst was over and she would now start feeling better. Unfortunately that was not the case and I have since learned that false negatives are very common in serum Lyme tests because of the spirochetes ability to hide in organs and tissues and so no antibodies show up in the blood. We also have no idea what co-infections Rose may have had.
Not only was Rose’s physical health continuing to worsen, but her mental health had become affected as well. She was suffering severe anxiety, depression and memory loss. She had become more and more withdrawn, friends faded away and she became housebound. The only time she left the house was for doctor or lab appointments. Her ability to interact with other people effectively was all but reduced to a very basic level. She had lost interest in everything she used to enjoy like, drawing, reading, crafts, gardening, sewing, video games and couldn't even focus long enough to watch a TV show. Her personality had completely changed and she knew it. She said she felt like “Rose is gone.”
It was so sad to watch my daughter fade away and not even know how to relate to her anymore because she was no longer the same person. Rose was growing weaker every day and had extreme muscle pain. She spent most of her time lying down and has no quality of life.
By May of 2016 Lyme disease has finally really taken it's toll. We have been consulting with a doctor in the US and he advised we add some other tests to Rose's standing blood test order, so we did and they came back pretty bad. It looked like possible multiple organ failure.
Rose was admitted to hospital in Vancouver right away. Her malabsorption had caused her weight to plummet to 64 pounds and we were continuing to try to keep her alive with her tube feeding and the many supplements she was taking, but unfortunately things have progressed.
Her legs and feet began to swell immensely and blood tests showed stress to her organs; mainly her liver and kidneys. She was started on total parenteral nutrition, (TPN) which is a method of feeding that bypasses the gastrointestinal tract. Fluids are given into a vein to provide most of the nutrients the body needs. The method is used when a person cannot or should not receive feedings or fluids by mouth) and the doctors said that things would get worse before they get better, but couldn't really give me any idea of a time frame.
Having the line implanted for the TPN was a nightmare! At first they placed a pic line in her arm, but because of her extremely small arms with no flesh or muscle to speak of, the line was pressing on her nerve endings and after 3 days of hell they removed it. They then placed a new line that went in through her jugular vein and then they made tunnel and the line came out her chest. This was still extremely painful for her, but not as bad as the pic line and she was taking narcotics to help control the pain.
She talked about giving up and just going home to die because of all of her suffering, but so far we had convinced her to stay and keep trying.
Her legs and feet were so swollen now that they were stretched to the limit and leaking water and blood plasma that should be in her cardio vascular system and her belly was becoming full of fluid as well, which was very painful and made it very uncomfortable for her to tube feed, which she was still doing in conjunction with her TPN. She also had big red open areas on her legs and deep painful cracks at her ankles and toes.
After 36 days in hospital Rose was still not doing well at all. It was coming up to her third birthday spent in the hospital in the past several years. She was going through hell and it was so hard to watch.
By June 30th (4 days after Rose's birthday) we thought everything was in the works for transferring Rose to a different hospital to start training for the Home TPN Program as soon as a bed came available. That way she could be at home and continue TPN.
Every 2 weeks the team of doctors changed at the hospital Rose was in and on the morning of July 4th the new doctor in charge came into Rose's room with his team of residents and students and told us that a GI doctor in charge of Rose's care, whom we had only met briefly during Rose's previous admission, said that she wanted to stop Rose's TPN for 2 weeks and that Rose would have a sitter with her 24/7! She obviously wanted to make sure Rose was actually doing all of her tube feeding!
We were devastated at this latest change of plans and after Rose had been tube feed diligently at home since 2009 and since the nurses at the hospital had been tracking it for the past 50 days we saw no reason to disconnect the TPN. Besides that, Rose was showing slight signs of improvement in her blood work since they implemented the TPN. They still didn't believe that Rose had Lyme disease and because they could find no other reason for her low body weight they assumed she was somehow doing this to herself!! Even after everything she had been through for the past 15 years the medical community still thought it could be some sort of eating disorder!!
We managed to get hold of the doctor in charge of the Home TPN program the next day and he informed me that Rose would never be a candidate for home TPN because she didn't have short bowel syndrome or a bowel obstruction and those were the only conditions that they accepted in to the program! I was shocked and said that I couldn't understand why the doctors at the hospital Rose was in would say that she would be admitted to the home TPN program and that it was all in the works.
At that point Rose made the decision to come home and get Palliative Care involved since there seemed to be no hope for the future. So we brought her home thinking we were at the end of the road.
The next day we sent an email to Rose's regular GI doctor to express our disappointment, frustration and anger and he replied in writing to tell us that he would stand by his word and help Rose no matter what it involved, if she decided to come to go back to hospital and keep fighting for her life.
There had been so much confusion and miscommunication among the doctors in both hospitals that we didn't know what to believe any more, but after discussing it with Rose she was willing to put her trust in her GI doctor and continue her fight one last time.
Rose was admitted to a different hospital that her GI doctor worked out of and was once again hooked up to TPN. But she just couldn't tolerate the pain and asked to have it disconnected and couldn't imagine living anymore if this was how it would be. Her legs and abdomen were still terribly swollen and her blood tests were not improving. Our only hope now was to try to find a different tube feeding formula that she might absorb better. Rose made up her mind to go home and hope for the best.
We found a formula that was completely elemental that was the highest absorbancy available, but Rose continued to lose weight and by October was only 61 pounds.
Just before Thanksgiving she banged her hip and because she had severe osteoporosis she fractured it. She was transferred by ambulance from our local hospital to a hospital in the city. She had surgery to have a titanium rod placed and it went as well as it could.
After several days Rose was discharged from hospital, but then a few weeks later she broke her wrist and fractured her pelvis on the other side of the broken hip. The wrist fracture happened when she was putting on some snug fuzzy socks and her foot slipped and she kicked her wrist. As for her pelvis, we aren't sure how that happened. She has such severe osteoporosis that it could be a spontaneous fracture. Rose said she might have banged it, but couldn't remember. For the pelvis fracture, she had to have as much bed rest as possible and use a walker when walking. And of course pain management, all of which we could do at home, so there was no hospital stay, but if her pelvis didn't heal there was the possibility of surgery later.
Shortly after that she broke her other wrist. It happened just because she was using it more to compensate for the wrist that was already broken.
Things were so bleak and Rose really had no quality of life left. She was in constant pain and her weight had dropped even more to 58 pounds.
Then on January 10th things took a very bad turn for the worse. By that evening Rose was in a coma and I wasn't able to give her her pain medication (she took dilaudid liquid by mouth every 4 hours) so we had no choice but to take her to the hospital.
On January 11th of this year (2017) Rose lost her 15 year battle with Lyme disease. She passed away peacefully and with grace with Gary and I by her side. This world will not be the same without our Rose in it and we miss her terribly, but at least we know that her suffering is over.