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