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
  
  
  
  

Delegate to the Region

As mentioned in the last sentence of the post showing all the ticks found in a Kingston backyard (The ticks of our lives), today was the delegation to the Region of Peel Council. Joe went with me; his support has been and is invaluable. Without him, many of the connections and introductions might not have happened. 

Joe and I in 2011

Delegation went very well. It was started by referring to the ticks Wendy collected in her garden in Kingston --- proof they are here! One of the references made, was about Health Canada's latest newsletter as published on their site. Basically it said that the tests "have some limitations" and doctors should be encouraged to use them as support for a clinical diagnosis. Referred to a presentation at the Toronto and Region Conservation Authority this September. The TRCA is the largest landowner in the Toronto region, and will start information on Lyme disease and ticks to their employees and visitor information systems. That's a great start, but we also need to get information to children, since they are at the highest risk. We need to get to schools, Scouts and Guides. I used a quote from Janet Sperling, one of the authors of a newly printed paper in the Open Neurology Journal, that "if we can put people back to work (even part time) it's better for everyone. People with Lyme want to be working and it's a reasonable thing if we can first treat the Lyme!"

After the presentation, there were several questions - good ones! - with great suggestions. There was a connection to get something presented to the FCM (Federation of Canadian Municipalities) and AMO (Association of Municipalities Ontario). On November 7 we should hear if we are invited to the ROMA conference in February. 

Some links referred to or pieces of documents used: 

• Health Canada's newsletter extract posted on LDAO's website; link on the Home and Archived Articles page. 
• The abstract from the Embers report, and specifically the blog post by Lorraine Johnson 
• The freshly published paper, Evolving Perspectives on Lyme Borreliosis in Canada 
• Toronto and Region Conservation Authority (TRCA) website 
• My own story included just as background (Sept 2012, p 42-43)

WHY I TALK TO GROUPS
When I was asked the first time to talk to a group (Probus) I was very nervous and not at all feeling like the right person for the job! I've never been a public speaker; much better to support those who do the speaking! But they were gracious and supportive. By now it has become something I'm passionate about, feeling that if only one person hears the message at every talk, gets information and can protect or help a child or loved one, it was worth it. Today, it happened almost immediately. 

The Council meetings are on a local TV channel in real time, but there are no nerve wracking TV cameras to be seen. I was aware of the fact, but didn't really think about that during the delegation. However, barely an hour after the presentation, as Joe and I finished debriefing over a cup of Timmies, an email came in. Pina wrote:

"I caught the later part of your deputation at the Regional Council meeting this morning.  I have been feeling unwell for the last 2yrs and have been desperately trying to figure out, what I now call 'the mystery disease'.  Last year I googled my symptoms and lyme disease caught my attention. I proceeded to research the disease and discovered that the testing available in Canada is limited and not accurate. I emailed the Region as well as other Canadian health services and received no help. In a desperate feat I asked my family DR to test me for lyme, knowing that the test was a waste of time.  Test came back negative, of course.
I guess what I am asking is, where can I get properly testing and what avenues are available to me.  Any help would be greatly and desperately appreciated."

We swapped emails and then I sent her my phone number. We spent quite a while talking. She was home with the flu today and was just channel hopping when she caught the Council meeting and mention of Lyme Disease. I dropped everything to take a test kit to her sister, and to share some information.

THAT is what makes it all worth while. That people who are sick, desperate, maybe even without hope and, like most of us finally diagnosed Lymies, thinking they're losing their minds, can find some information, someone to talk to, and support from someone who can say, "Yes, I understand - me too!" 

VIDEO LINK ~~The video of today's council meeting is online, on THIS LINK - from about 32:45 minutes in if you move the starting point forward. We were second on the agenda if anyone wants to try and see a bit. 

To see video of the delegation, click the link above the picture