Canadian Registry

Canada’s Lyme Disease Registry

Feb. 7th, 2012:  Number of Canadians on Lyme Disease Registry–60

The Richmond Hill Lyme Support Group felt it was important to have a Canadian Registry for Lyme Disease sufferers.  The purpose of the Registry is to independently  establish how many people suffer from Lyme Disease in Canada.  Our members were concerned that Canadians suffering from Lyme Disease were not being captured by Public Health.

Re:  Confidentiality.  I collect & maintain the data.   I am the only person that has access to the information.   Registration is optional and other than reporting the total number I do not intend to share the data.   I ask for an address only to confirm the person is Canadian.  

If you wish to be counted simply e-mail  josephine@danceintherain.ca with the following information:

1.  Your name

2.  Your address, city, province and postal code

3.  Optional–estimated date of infection

Thank you!

 

 

 

 

 

Comments

  1. Doreen Fishman, says:
    December 7, 2011 at 10:41 pm

    Hi – It was a pleasure to meet you at the meeting today. I agree that this registry is of utmost importance. Numbers speak volumes and we must get the word out there. My daughter was diagnosed with Lyme disease and I will do anything to fight for her rights. If I can be of any help with respect to your support group, please don’t hesitate to email me.

    Warmly,

    Doreen Fishman

  2. Deborah Hart says:
    December 27, 2011 at 1:08 am

    This registry is such a great idea! After dealing with years of being thrown around from one doctor to another specialist, etc.etc…. & discussing suspicion of Lyme with my GP (who did not want to touch the subject with someone else’s 10 ft. pole!) I tested positive thru Igenex Labs Oct/11. I learned so much from Dr. Murakami’s info & CanLyme & a great naturopath here in Penticton, B.C.. I have emailed the MP for this area and have embarked on informing everyone I know that there is help out there! I believe this registry is so important as it seems all they understand in Canada, especially Ottawa, re: ANYTHING! has to be in black & white & in figures! Don’t even get me going on the medical system! Aaarrrggghhhhh!! I can only imagine how important & lifesaving this site will become! Thank you for being! D. Hart

  3. Donna Lugar says:
    January 6, 2012 at 2:25 pm

    I have included this information on my facebook page “Lyme Disease in Nova Scotia”. So many people have been working on their own to get the word out about Lyme disease and the associated co-infections so having one “funnel” for everyone is awesome. I have been pushing for a clinical diagnosis to be made rather than better blood work as I feel that this is the only way that you can determine what other possible co-infections you might have. However, Doctors need to be adequately trained in the multitude of symptoms and which symptoms mean which co-infection! Fortunately, I found a Doctor in Nova Scotia that makes Lyme and the associated co-infections a specialty (on the side of his regular practice). Unfortunately, it takes a long time to get in to see him! Keep up the great work. Hopefully, you will keep a running tally on this site for those interested in following the numbers.

  4. tom welch says:
    January 7, 2012 at 12:08 am

    I have had this I don’t know how long , also have had Rocky mountain spotted tick fever and also ehrlichiosis…. no don’t my biggest problem is the fatigue …and all that goes with it …I pray that by keeping after the lyme and posting as much as I can it will prevent some poor sole from suffering my fate …May God Bless and keep all of you … tom

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