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On Monday May 7th, Ms. Tracey Ramsey, M.P. (NDP, Essex, Ontario) and Mr. Randy Hoback, M.P (Conservative, Prince Albert Saskatchewan) in partnership with LymeHope, CanLyme, the G. Magnotta Foundation for Vector-Borne Diseases and Provincial Lyme groups, is hosting an educational round table event on Lyme Disease in Ottawa. 

This event is for Federal MPs only (not for members of the public).
This is a non-partisan initiative (open to all political parties).

We hope to see as many MPs as possible in attendance, so that they can hear first-hand the seriousness of this rapidly growing health threat. MPs are responsive to the needs of their constituents, so we need your help to reach out to your federal MP and ask them to attend.

Action: 

1. Click on the link below to find your federal MP by entering your home town or postal code. Your MP will show up and you can click on their name to get an email and office telephone numbers. 

https://www.ourcommons.ca/parliamentarians/en/constituencies/FindMP

2. Copy and paste the agenda below into a personal email to your MP, tell them you are very concerned about Lyme disease and ask them to attend. 

3. Follow up with a personal phone call to their Constituency and Ottawa office and ask your MP’s assistant to ensure this invitation is brought to their attention and the importance that they attend on your behalf.

We will be in attendance at this round table and will provide a comprehensive update afterwards.
Thank you for your continued support.

With Hope,

Jennifer Kravis & Sue Faber
Co-Founders
LymeHope
www.lymehope.ca

Ms. Tracey Ramsey, M.P. & Mr. Randy Hoback, M.P.
in partnership with LymeHope and CanLyme and G. Magnotta Foundation
 welcome you to an MP Round Table:
“Lyme Disease across Canada”
Details:
Monday May 7th, 2018, 5:30pm – 6:30pm
Room 310, Wellington Building, Ottawa, Ontario
 
This event is also supported by the following organizations:
New Brunswick Lyme Disease Association Inc ./ Association néo-brunswickoise de la maladie de   
Lyme inc. (LymeNB)
l’Association québécoise de la maladie de Lyme (AQML)
Nova Scotia Lyme Support Group
Vocal Ottawa
Ontario Lyme Alliance
Lyme Ontario
Lyme Disease Association of Alberta (LDAA)
Saskatchewan Lyme Disease Association (SLDA)

Agenda:
Introduction & Welcome
Ms. Tracey Ramsey, M.P. and Randy Hoback M.P.
Sue Faber and Jennifer Kravis, LymeHope
Jim Wilson, President, CanLyme
Rosanna Magnotta, G. Magnotta Foundation

Dr. Melanie Wills, PhD
Director, G. Magnotta Lyme Disease Research Lab, University of Guelph
A Scientist's Perspective:
Lyme Disease in Canada

Daniel Stimers, age 11, founder of the L.E.T.
(Lyme Education Team) – elementary students raising awareness of Lyme disease

Dr. Ralph Hawkins MD, LLM, FRCPC
Clinical Associate Professor, University of Calgary, Site Lead for General Internal Medicine at the Calgary South Health Campus and Plenary Speaker at Public Health Agency of Canada sponsored Framework on Lyme Disease Conference
A Physician's Perspective:
Diagnosing Lyme Disease in Canada:  How the status quo fails the majority
 
Dr. Adrian Baranchuk MD, FACC, FRCPC, FCCS
Professor, Medicine, Queen’s University
President, International Society of Electrocardiology
Editor-in-Chief, Journal of Electrocardiology
Vice-President (Canada), Inter-American Society of Cardiology (IASC)
A Physician’s Perspective:
Lyme Carditis & the electrical system of the heart

Sue Faber RN, BScN
Co-Founder LymeHope
A Nurse's Perspective:
Patient First Treatment of Lyme Disease.
Registered Nurses Association of Ontario Resolution on Lyme Disease

Emma Smashnuk, age 14, Lyme sufferer and advocate.
Founder of Emma’s Lyme Ribbon Campaign.
Patient and Family Perspective

Jennifer Kravis & Sue Faber
Co-Founders of LymeHope
Wrap Up and Next Steps

Q&A

Informative Case Study on Congenital Transmission of Lyme
Found in: Dattwyler R, Volkman D and Luft B. Immunologic aspects of Lyme borreliosis. Review of Infectious Diseases Vol 11(6), 1989.

'In humans, B burgdorferi (Lyme) is capable of infecting the fetus. Sequelae (including abortion and fetal abnormalities) have been associated with infection. Borrelia-specific antibodies have been found in the CSF of an infant with evidence of neonatal neurologic dysfunction whose mother had been infected in the second trimester. The mother who was asymptomatic, had been treated with oral antibiotics and did not have diagnostic levels of antibodies to B burgdorferi at the time of parturition (authors’ unpublished observations).
Effective therapy to eradicate borreliae on both the maternal and the fetal side of the placenta is essential, as persistent infection may be difficult to diagnosed after the initial course of antibiotics."

This little case certainly has important teaching points and big implications:
1: The mom was asymptomatic but followed by researchers because she was infected (presumably with a tick bite) in her second trimester
2: Researchers were interested in the outcome and followed her pregnancy.
3: Mom was TREATED with oral antibiotics
4: At time of giving birth - Mom is SERONEGATIVE by standard testing - meaning she would not be positive on standard lyme tests.
5: Early, but noncurative, treatment was presumably felt the explanation for her seronegativity
6: Baby is born with neonatal neurologic dysfunction
7: A spinal tap on neonate reveals serological evidence of antibodies specific to borrelia in cerebral spinal fluid.
8: This is a congenitally infected baby. Borrelia burgdorferi has been transmitted from asymptomatic mom who was inadequately treated and seronegative - to her baby.
9: Authors go on to EMPHASIZE the importance of effective therapy to erradicate borreliae on both maternal and fetal side of the placenta - as PERSISTENT infection may be difficult to be diagnosed after the initial course of antibiotics .
10: Authors one-line recommendation based on this case has huge potential ramifications for management of pregnant moms infected with Lyme and their infants.

​The excerpt and picture above is from a top-tier, world renowned, medical journal and authored by medical doctors and researchers.  
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Title: Clinical Pathologic Correlations of Lyme Disease by Stage
Authors: Duray, P. and Steere, Alan, C. 1988. Annals of the New York Academy of Science Vol: 539:65-79 Correspondence: PAUL H. DURAY Department of Pathology Fox Chase Cancer Center Philadelphia, Pennsylvania ALLEN C. STEERE Department of Internal Medicine Division of Rheumatology Tufts University School of Medicine Boston, Massachusetts 02111. These authors were/are the leading Infectious Diseases Society of America (IDSA) researchers - they also worked with the Centers for Disease Control. 

'It is clear that B. Burgdorferi can be transmitted in the blood of infected pregnant women across the placenta into the fetus.  This has now been documented with resultant congenital infections and fetal demise.  Spirochetes can be recovered or seen in infant's tissues including the brain, spleen and kidney.  The chorionic villi of the placenta show and increase in Hofbauer cells as in luetic placentitis.  Inflammatory changes of fetal or neonatal changes are not as pronounced as in the adult, but cardiac abnormalities, including intracardiac septal defects, have been seen.  It is not known why inflammatory cells are so sparse from maternal transmisson but it is possible that an immature immune system plays a role.'

Action Requested: Ontario Government Seeking Comments on Draft Lyme Educational Materials:

The Ontario government has issued 2 draft educational materials on Lyme disease -  they are calling for public input on the materials until midnight Monday, April 16th. 
Your feedback is needed and appreciated. 
You do not need to live in Ontario to participate. 
 
The documents and the online feedback form can be found here: https://www.surveygizmo.com/s3/4264305/Lyme-Disease-Guidance-Documents-Feedback-Survey

Concerns with Clinical Guidance Document:
The biggest concern with the Clinical Guidance document (the flow chart) is that it reinforces many of the “Lyme myths” and is not equipping physicians to properly recognize, diagnose and treat Lyme disease and Co-Infections.  There are numerous issues, but some of the most serious flaws are:
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• The recommendation to physicians to offer a single-dose of an antibiotic after a tick bite must be removed. As the U-Tube video by Dr. Holly Ahern (a microbiologist) explains, this single dose would not prevent Lyme disease and could in fact cause patient harm. This protocol is called the single-dose prophylaxis or on the flow chart, it is called "post-exposure prophylaxis”. Several leading authorities on Lyme disease warn this approach is not backed up by science, and is ineffective.

Furthermore, the most up to date treatment guidelines (2014) for Lyme disease published by the International Lyme & Associated Diseases Society (ILADS) state: “The potential harms of the single-dose oral doxycycline prophylactic regimen and the magnitude of those harms significantly outweigh its benefits”, and “Clinicians should not use a single 200 mg dose of doxycycline for Lyme disease prophylaxis.” (ILADS Guidelines, Recommendation 1a).

Click below to read why Dr. Elizabeth Maloney and Dr. Daniel Cameron, who both have diagnosed and treated hundreds of Lyme patients, recommend against the single-dose strategy. ​

•  ​The emphasis on seeing a tick, the “Lyme rash” and exposure to areas that have been designated as “endemic” need to be removed.  Medical professionals should be educated that ticks can be anywhere, that many people never see a tick bite or a rash, and there are numerous different symptom presentations other than the classic “flu” presentation. 

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• There is no guidance to physicians on what to do if a patient is still having symptoms after finishing initial antibiotic treatment. There is research that shows some people may require longer courses of antibiotics to fully eradicate the infections.  You may want to include in your comments that it is important that doctors follow up and ensure that a patient's symptoms are fully cleared up.​

 Concerns with Public Fact Sheet:
Some of the concerns with the Public Fact Sheet:
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1. It states that only deer ticks carry Lyme and dog ticks do not; however dog ticks DO carry several serious infections called Co-Infections
2. It suggests that you can only get Lyme disease if you live in a designated “endemic area for ticks” – yet we know that ticks are carried and dropped by wild and domestic animals, migrating birds and humans and can be found anywhere.
3. The Fact Sheet focuses heavily on prevention, but does not educate people about the poor quality of our current testing, or the numerous wide range of symptoms.

 These documents need to be improved upon before they will good sources of education for the public and our doctors! There are numerous resources you can use to back up your comments here, including a detailed memo prepared by Ontario researcher John Scott below.