HAPPENINGS!

Things are really happening! I'm tempted to change the name of this blog to be "Meerkat's Hope" - instead of just a "heap" of information. What do you think?  Especially if you read on about the news below!
The heading can then look like this

GOOD NEWS!!

Quoted from a post by Elizabeth May, MP, about Bill C-442*:

Since tabling the bill for First Reading in June 2012, my office has been inundated with letters of support. Many are from those suffering the effects of Lyme disease.  Many are from Canadians who have travelled to the U.S. to obtain treatment. I have also heard from many Members of Parliament, from all sides of the House, who hope to see it become law.

The bill is also supported by health professionals, such as the College of Family Physicians of Canada. In a letter to me, November 21, 2013, Eric J. Mang, Director, Health Policy and Government Relations, of the College of Family Physicians of Canada wrote:
“The College of Family Physicians of Canada (CFPC) would like to commend you for presenting Bill C-442, National Lyme Disease Strategy.

“The CFPC supports further studying the economic and health impacts of Lyme Disease to ensure that Canadian physicians have the necessary tools and knowledge at their disposal. Guidelines produced as part of the strategy should include the input of family physicians and available to all primary health care providers.”

Bill C-442 will be going to Second Reading debate on Monday, March 3, 2014. I hope all Canadians will read the bill, and ignore efforts to distort its very sensible, scientifically sound approach. With non-partisan, and compassionate support, we can get the bill to committee and consider any changes that meet the concerns of all impacted by what can be a tragic illness.
 (~ My bold and highlighting ~ Marlene)


POSTERS TO SHARE - LYMEWALK May 10, 2014

The popular Brampton LymeWalk (stroll, roll, etc) will be held for the third time this May! And this year, all registrations are online. No matter where you are, you can join in, register, sponsor, donate and take part virtually. Even if you can't leave your bed or your town, join in to show support and solidarity with Lyme Patients everywhere.

The Walk is part of the WorldWide Lyme Awareness effort (or call it Protest if you like).

Here are posters or graphics you can download to share, please. One can be printed upright (portrait) and the other can be printed long / flat / landscape. Or they can be printed back-to back if you wish. Click on the small image to open in a new window, and then save or print from there.

Of course, you can refer anyone to this blog post to get the images themselves.

Thank you to everyone for comments via email or direct notes when stopping by this blog.

See about Bill C-442 and why we need such a bill HERE.

Worldwide Lyme suffering

May is over. This was one of the busiest but also most rewarding months, creating awareness around Lyme Disease. People from all over the world took part in events, told their stories, stood up and asked for support, better tests, the right to treatment and the right to live their lives. I'm so grateful to have met so many people, working together, giving what time and energy, ideas and support they could muster so that others would be spared the pain so many of us had to live through.

Charlotte Therese Björnström from Sweden, who has suffered from this awful disease for 25 years, put together a video from footage, pictures and sound clips people sent from all over to create a small glimpse for others to see and share. There are voices from Australia, USA, South Africa, Spain, Switzerland, Finland, Germany, Canada .... translations are part of the film. For your own education, please take twenty minutes to watch it and to share with others:



The original music used as soundtrack in this video was written and performed by a young woman battling Lyme Disease herself. She is 19, lives in Australia and has been sick for ten years -more than half her life. Her name is Emily Madden*.




Right These Wrongs
We've been through a lot, we've been through it all, 
One day we stumble, the next day we fall.
Like anyone else we had dreams. 

Our lives were alight, once burning bright. 
Now fading each day is an uphill fight. 
And like anyone else, we want life. 

Join us one, join us all. Unified we stand tall 
Our voices loud, our resolve strong.
Join us one, join us all. Unified we stand tall. 
To regain our lives and to right these wrongs. 

Identities lost, but only for now 
'Cause through all this pain, a strength has been found. 
And with everyone else, we'll be heard ...

Join us one, join us all. Unified we stand tall 
Our voices loud, our resolve strong.
Join us one, join us all. Unified we stand tall
to regain our lives and to right these wrongs. 

We're not disappearing like they want us to. 
We're not going anywhere, anytime soon. 

SPREADING WORLDWIDE
This disease is spreading way too fast, and none of us can understand why we have to struggle so to get tested, diagnosed and treated. If diagnosed and treated early enough, it is completely curable. If left to ravage the whole body, nervous system, and all organs, it takes much longer to get under control. The treatment itself can do damage to the body, just like cancer treatment causes people to lose their hair, nausea and possible damage to healthy cells.

We are not trying to create panic or pandemonium. We want people to be educated and informed so that they can protect themselves. Look at it as giving you a safety belt or a parachute - what you do with it, is your decision.

Next event I'll be handing out information, with the help of friends, will be at Caledon Day on June 15. If you are anywhere near the counties of Peel, Halton Hills or Caledon in Ontario, see if you can drop by. Entertainment is free and ends at 11 pm with a fireworks show.

*Emily's story link: Emily's sick but Australia doesn't recognize her disease

Trying to keep up with happenings

So many things have happened since we came back after seeing Dr. McS! I'll try to update or recap. But keep reading -- there's big stirrings going on!

Essie holding on to my hand

Rather than talking about my Lyme, it is much more fun to be occupied by one of our three cats, who missed us very much while we were away. Here's Essie, who thinks she owns me, taking hold of my hand with both paws to try and drag it off the laptop. She thinks she has the only right to be on top of my lap and not some machine!

Several people asked what the previous post meant, with all the names of the medications and such. "Are you still sick?" was the most popular question. I guess so, even though I don't want to admit it, haha!

In short, I'm still being treated for Lyme and the co-infections of Babesia and Bartonella, plus a protozoa infection. Some of the medications we can't get in Canada, so had to fill the prescription while in the States. Some capsules would have to be made at a compounding pharmacy - and thanks to the advice and emails of caring Lymies about how to do this!

I don't have the new protocol's prescriptions yet. Money and time, you know. I'm continuing on some of the meds I still have from the previous protocol, plus the supplements, of course: Cat's Claw, Grapefruit seed extract, Vit C from rosehips, Vit. B, Auum oil, Oregano oil, Evening Primrose Oil, Resveratrol, Olive Leaf - er, there are more, I'm sure. [Blog post about the previous protocol.]

For the most part, I'm feeling good, other than the exhaustion and lack of energy. All the drama and damage are going on inside the body and I only notice at the fit of my jeans how the state of things might be, but nobody else might even notice.

But, enough of that!

Lots of exciting things happening on the Lyme front, which is much more fun to talk about.

Many of you know that May is Lyme Awareness Month, and this year I've tried to get proclamations to that effect from several cities and towns. Trying to keep the momentum going for next year!

Reporting back on events:

• After the meeting with David Tilson, MP, there is now a petition in his office to ask for a National Lyme Strategy. He has a picture that will go in his regular newsletter and he promised to read and report on signatures collected in the House. 
• Sylvia Jones, MPP, has written a letter to Deb Matthews, Ontario's Health Minister, to ask what is being done for Lyme disease patients. 
• Following up after the delegation to the Region, I've sent a piece to be read on November 19 in Ottawa. Waiting for feedback to work on the wording, etc. 
• National Lyme & Associated Diseases Society of Canada was created as an umbrella to have a combination of the various efforts all over Canada. A domain name was registered, but there is no website up yet. This will be a charitable organization. 
  
  
  
  
  BREAKING NEWS
  
  
  The big news is the momentum behind a Worldwide effort to bring Lyme disease awareness in May 2013! I've started a page on Facebook to gather some helpers to the effort in Canada. 

  

  Front page of the Facebook page

  Currently, there is just a Facebook page. The graphic with the tick was designed by my friend Fiona (her Fiinix website). I think you should be able to view the page even without being a member of Facebook. Admins will be added as towns and cities in Canada join in to plan for May 2013! Also take a look at the original page where the idea started: Sweden 
  So far, I think there are 16 countries behind the idea: Poland, France, Ireland, Australia and more that I can't remember right now. They all have Facebook pages, though, and are linked on the Sweden page. 
  
  
  I'm in discussion with the city of Brampton to talk about a Lyme Awareness event in May 2013, and have talked to a Chamber of Commerce representative today. All sorts of other ideas going on, but I'm sure I've bored you enough by now --- if you're even still reading! Oh yes, if all goes well, there might be really exciting big news tomorrow, depending on when the reply comes through.
  
  
  Future dates already booked:
  • Nov 19 and 20 - Information table at the Annual Ontario Federation of Agriculture (OFA) Convention
  • Nov. 20 - I'll talk to a Trefoil Guild
  • Date to be announced - garden club
  • Date to be announced - Rotary club