Lyme patients need YOUR voice!


Some of us Lyme patients like to call ourselves “chair warriors” (a fun poke at our lack of mobility) and we are all asking for your help with our Lyme Letters Campaign:

Imagine going to the doctor believing you’re sick with West Nile. Imagine that the doctor says he will administer the test if you can show the specific bite site that has a major specifically shaped rash and/or produce the infected mosquito that bit you.

Does this seem like a ludicrous request? Of course it does. But this is happening right now in our country – just with ticks instead of mosquitos and when your illness is called “Lyme”.

Waiting for a Lyme Test…

When I asked my first specialist for a Lyme disease test, I was told point blank “no bite, no test”. It took several doctors, several trips to emerg, and 10 months to finally have a Lyme test performed – a test that is as accurate as a coin toss. It is very difficult to get tested for Lyme in our country and impossible to get access to accurate testing through current medical protocols.

Alberta has just gone one step further in restricting its Lyme testing protocol – if patients don’t meet very strict (and unrealistic) criteria they are not eligible to get a Lyme blood test. These patients now have many more hoops to jump through to try and get clinically diagnosed. How soon before other provinces follow suit?

Does this course of action seem reasonable to you?

 

In May 2016 there was a conference to kick-start a Federal Framework on Lyme disease for Canadians. It was not well advertised – I only heard of it two days before it started (in Ottawa) otherwise I would have attended (from Sask).  Just last week (in Feb 2017) the government finally released its first draft of the framework. This was done without ANY involvement from stakeholders and patients (which was promised at the conference) and only gives people 30 days to provide feedback.

The framework is an utter disappointment for Lyme sufferers. Basically, everything that patients and patient advocates were asking for has been ignored. The framework cites that it will follow the criteria and protocol of the American CDC and IDSA organization – both of which are extremely outdated and are the current problem that Lyme patients are up against. Clearly, the government has chosen to willingly ignore the hundreds of woeful pleas shared by the patients , not to mention all the recent scientific studies produced by advocates at the conference. What was the point of all those private citizens paying their own way to attend this conference? NOTHING. We still aren’t being heard.

This is why us ‘Lymies’ desperately need your help lobbying the government to HEAR us! And we need YOUR voice to call out with ours. Please send a brief letter of your concern regarding Lyme disease in this country to either myself:

marilyn@marilyme.com

Or mail to:

Lyme Letters Campaign
PO Box 20045 Brant Hills
Burlington ON, L7P 0A4

All of these letters will be hand delivered in a personal meeting with the Hon. Jane Philpott, who is in charge of the Ministry of Health.

We have made it very easy for you to write a letter. Here’s an example you can use:

Please get everyone and anyone you know to write and send in a letter. Even your kids can help! Have them colour in this picture and email or mail it in – every letter helps!!

You can find more letter templates at www.lymehope.ca (where you can also follow the progress of the Campaign). Click on ‘Lyme Letters Canada’ at the top of the page, then click on ‘Lyme Letters Templates’.

Please help us reach our goal of 10,000 letters. Help us make noise, help us be heard! Help improve your health care system! All for the price of a postage stamp and a few minutes of your time.

Together, united, we can make change

 


 

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