A petition, a new Lyme book and a Community event

How did it become November already, and almost halfway through it, at that? I'm sorry for the lack of updates. Things have been really busy, and I've had a few setbacks, health wise, which didn't help. Short-term antibiotics for a raging infection which had me writhing and rocking in pain. BUT --- it is the first one in months, so no complaints! When I told the doctor-on-call that it felt as if I was "sitting on a baby's head" his eyes hopped up on stalks. Poor man. My regular doctor is used to the weird descriptions and just take them in his stride. I'm so grateful to him! And dr. M, if you are reading here, you know how I appreciate your care and concern.

Back to the post. Because of the lack of updates, this post will contain three really important separate issues. I'll try to keep my part short, but please click on the links in the highlighted lines if you want to read more about any of them. Or if you want to drop by on Saturday for a visit, fresh, warm crepes, and more! Each of the links will open in a new page or window so that the blog will remain for you to return to.

1. Petition
2. New book on Lyme disease
3. EXPO with Lyme table

PETITION: Randy Hillier, MPP, Lanark, Frontenac, Lennox-Addington, is putting forward two motions on Lyme disease in the Ontario Legislature this coming Friday, November 15th, 2013. He would like to have 2500 signatures by Friday, and at this point there are about 200 still needed.

SIGN THE PETITION: Link 

2. Book: Why Can't I Get Better? - by Dr. Richard Horowitz

From the Marketing Manager: "In his new book, Dr. Horowitz, a board-certified MD specializing in Internal Medicine, has mapped out a 16-point Differential Diagnostic Map to treat patients with Lyme disease, and those suffering from overall chronic illnesses.  He introduces MSIDS, or Multi-Systemic Infectious Disease Syndrome, which provides a new lens on chronic illnesses that may prove to be the missing link in an effort to decrease the number of Lyme cases, and chronic illness sufferers, in the US.  And, he covers in detail Lyme’s leading symptoms and co-infections, including immune dysfunction, sleep disorders, chronic pain, and neurodegenerative disorders."
ISBN: 978-1-250-01940-0, $29.99 US.

My review on GoodReads will be updated and added to as I read: LINK 

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LYME info table at SouthFields Village EXPO on Saturday
I'll be greeting visitors at one end, with a table full of information about Lyme disease at the
SouthFields Village EXPO, at SouthFields Village Public School (110 Learmont Ave., Caledon, ON) on Saturday, November 16th from 10 am to 4 pm.
Come early, and come hungry!

Here's a short list of what you might see, experience or enjoy on Saturday:

• Fresh crepes will be available for sale
• Purchase door prize raffle tickets. 
• Glen Echo has generously donated a gift certificate for a live Fraser Fir Christmas Tree.  
• Help decide who wins the Chef Challenge.
• Yvonne Ibarra will be doing a live Zumba demo first thing in the morning 
• Birthday party on stage 
• A magician at noon and 
• Games and crafts all day long 
• There’s even a mini-arcade with cake and please do bring a present. We’ll gladly make sure that your new, unwrapped gift will make its way over to kids who would otherwise go without birthday or Christmas presents this year.
• Anybody can drop in and try their hands at the pottery wheel. After the show Wendy will take the pieces home to fire and glaze them for you so that you’ll finally have that special work of art on your mantelpiece.
• Farmers’ market and a local small business showcase. 
• A really cool speakers’ series with half a dozen speakers covering a wide range of subjects from how to take the perfect holiday photo, planning your next home reno project to hunting for the paranormal. That list is already available online at caledonspectrum.com.
• Mark Grice will start with a blank canvas and finish with a beautiful painting within 3 hours. You can watch him paint and even get to bid in the silent auction for the finished piece. 
• Several established, professional artists will be joining us in a gallery space and lounge area where you will be able to explore the art and relax with a cup of hot apple cider, care of Spirit Tree Estate Cidery. Light refreshments will be available or you can bring in something from the food vendors in the main hall. Meet and chat with the likes of Merle Harstone, Cory Trepanier and more as they exhibit their work.
• Both Sparky the Firedog and Caledon Community Designated Driver Association’s Home James will be on hand. 
• Live mannequins will be modeling one-of-a-kind Hattitude Jewellery and other pieces from Chic a BOOM.
• Dignitaries have been invited to partake as judges in the chef challenge (to take place around 11am) but the general public is also going to have a chance to pick their favourites throughout the day.
• Show proceeds will go toward supporting music and arts programmes at SouthFields Village Public School & Mayfield Secondary. Other proceed recipients will include Family Transition Place, Caledon Meals On Wheels, CCS, Cystic Fibrosis and more, as there will be a number of non-profits represented at the show and various elements to support them. But don’t think we’ll be there just to get your money. 

Admission is free, parking is free, the speakers’ series is free (but seating is limited and will be on a first come first serve basis), and so are the crafts and games at the blazin’ birthday party.

SouthFields Village EXPO: Nov 16 - 10 am to 4 pm: LINK 

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
  
  
  
  

Successful meeting with Member of Parliament

Another exciting day ... Joe and I just met with the Honourable David Tilson, MP for Caledon-Dufferin.
We found him supportive, but careful.

He was gracious and friendly -- and like most people horrified to learn more about Lyme Disease. I appreciated the fact that he apologized for asking basic questions, and for not knowing more - but nobody can know everything, right? He has met some constituents before, mostly in informal settings, who spoke about Lyme Disease, so he knows it is in the region.

Joe, David Tilson and Marlene

He will read and investigate some more. His big question was, "What can the Federal government do to help or fix this issue?"

He also asked the picture of the three of us to be sent to his office, for inclusion in his next newsletter.

There are some other points we're working on and will report back in the near future.
So grateful for the time and the ear!

National Lyme Strategy Petition is ready!

** Updated: The links to 4Shared were giving trouble, so please click on link #2 below for another place to find Elizabeth May's petition in PDF format.

***UPDATED Nov 2012: We now also have a petition from Tory David Tilson, M.P. (Dufferin-Caledon)! Let me know if you want a copy to collect and send in signatures. It asks for a National Strategy as well. Email to ask for David Tilson's petition.

ELIZABETH MAY'S PETITION
So grateful and excited! I've been in regular touch with the office of Elizabeth May, MP, about the petition to ask for a National Strategy dealing with Lyme Disease. Since we were planning another information booth at SouthFields Community Day tomorrow, I was hoping it would be ready.

And --- guess what - here it is! Just received after 2pm today, approved by the House of Commons. We can print, have friends and family sign and share according to the instructions printed on every page!
Please link this blog page to your blog or your Facebook, or Twitter, in order for others to share and download the same document. Print, read info and collect signatures. Choose one of the three links that works for you. The first one is on 4Shared for those who have accounts there. The #2 link is on an outside website. The #3 link should be accessible to most others. Hit the green "Download" button on the page that will open: (a) #1 link to Download Petition or (b)  #2 link to Download Petition  or (c) #3 link to Download Petition.

Let's go! If we can use the next few weeks to get copies of the petition signed and sent in, we can hit the ground running in September. Please remember that only people who live in Canada are allowed to sign the petition, but feel free to share with friends who might be in contact with others here!

Pushing for more awareness

This post will be about several different items, since a lot happened during the last few days, regarding the Lyme Front!

1. Today a group of us will delegate to the Town of Caledon Council meeting, to ask for support and help in moving forward for Canadians with Lyme disease to get the health care they need. This is the request I've sent through to present: "Lyme Disease patients are being denied access to health care in Canada. Too many Canadians are now disabled, deprived of the joy of family and friends, of school or work, due to Lyme disease. The public and the medical community need to be educated as to the increasing incidence and range of this disease. Lyme Disease is currently spreading faster than AIDS, West Nile and Avian Flu combined. Lyme Disease can be devastating and affects every organ and part of the body, including the brain, if not treated in a timely manner. The cost to health care and welfare as well as social and economic structures could be astronomical. We need development of a national strategy to address the challenges of timely recognition, diagnosis and treatment of Lyme Disease." Supporting documents are my own letters and story, Jim Wilson's article in the Health Magazine and the Press Release regarding the Government Report about Lyme Disease in BC which was published last March (links below)
2. Some of the statement above was taken from the website of Elizabeth May, Member of Parliament, who will introduce a Private Member's bill on June 20. This will be a "National Lyme Strategy Bill" and is not linked to any one party. This bill is aimed at supporting all Canadians with a much-needed, coordinated national strategy to get rid of the blocks currently preventing quick diagnosis, timely and accurate testing, full treatment and longer term support and care.
3. Tomorrow we'll find out if we can have a Lyme Booth to hand out flyers at the Caledon Day being planned for June 16. It is free!
4. This weekend is also the Markham Music festival. The Lyme Mobile will be there, and so will a booth with flyers and information. If you have a love for music, if you have a dog, if you want to get out and enjoy some fun, join in and come say hi, please!
5. Since starting to collect a list of Lymies in Ontario on Friday, after a successful meeting with a City Councillor and LHIN Board chair, there are more than 2 dozen people who emailed their names or initials to be added. Heartbreaking stories emerge. Tales of neglect by the medical profession, stress and concern about children and parents, loss of jobs, activities, mental capacities, family budgets and more. THIS HAS TO STOP! Under the Declaration of Human Rights we have "- rights to health care and to the benefits of scientific progress".
6. The prediction is that by 2020, some 80% of Ontarians will live in a Lyme endemic area. We all need to know how to do tick checks and early symptom control.  Dr. Ernie Murakami, who was forced out of his practice in BC where he was successfully treating Lyme Disease patients, is very active in helping, supporting and sharing his knowledge. More than a decade ago, he developed a simple, fail-proof method to remove an embedded tick without leaving any mouthpiece or part of the tick behind, and without injecting the stomach contents into the host where it might be attached. The video link is on YouTube, as given below. Please educate yourself, and maybe put the video clip on a CD to take to your doctor and health care workers.

 Links mentioned above: 

• Lyme Disease in Canada: A Tragedy Unfolding? by Jim Wilson in HealthyLiving 
• Press Release in PDF format on 4Shared or directly from this blog
• Elizabeth May, MP, about Lyme Disease
• Do you live in Ontario with Lyme disease? Join the list
• Dr. Murakami's "blister method", using adrenalin to make an attached tick back out YouTube
• Caledon Day, June 16, from 2:00 to 10:00 pm Website and map
• Markham Music Festival, June 15 and 16: Website, pictures, schedule and video clips