Action requested: Ontario government seeks feedback on Lyme materials

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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).

evidence_assessments_and_guideline_recommendations_in_lyme_disease_the_clinical_management_of_known_tick_bites_erythema_migrans_rashes_and_persistent.pdf
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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. ​

maloney_2011_single-dose[1].pdf
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5-maloney-prophylaxis[1].pdf
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dr._d._cameron_-_importance-second-opinion-prophylactic-treatment-tick-bite.pdf
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Dr David Volkman, Ph.D., M.D. Emeritus Professor of Medicine and Pediatrics SUNY, Stony Brook, NY Background: Board certified in Immunology, Diagnostic Laboratory Immunology, and Internal Medicine, and Board Eligible in Infectious Diseases - speaks to his concerns about the single dose doxy and other issues in a paper he wrote several years ago - these concerns remain relevant today.

Document written by dr volkman

•  ​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.​

700 Scholarly articles on persistence of infection

 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.

john_scott_memo_-_lyme_disease_pho_flow_chart_2018.docx
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Patients, family members, friends, and human/animal health care providers – everyone from any country – is encouraged to comment! Your feedback is needed to change the way physicians treat Lyme disease and to ensure the public is properly informed!  Please share and share again! 
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You can also share feedback by participating in a virtual Town Hall Meeting which will be set up by the Government of Ontario – details will be shared as they become available.
 
Thank you as always for your continued engagement and support.
 
Jennifer Kravis, BA, LL.B & Sue Faber, BScN, RN
Co-Founders
LymeHope

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