Monday, May 28, 2012

Successful Lyme Day!

Saturday, May 19th, was the Lyme Disease Awareness day which was held in Chinguacousy Park, Brampton. It was wonderful! You can see pictures by going to the link on the LymeWalk website,

Thank you for any support, thoughts, prayers, volunteers, people attending, donations --- a hundred different ways in which you played a role.

It was by all accounts a success with at least 400 people coming out, taking part, being seen, sharing stories and support. We estimate at least 50 people there had Lyme Disease.
This is no longer a rare disease. 
So many people gave so much of their time to make this dream of mine come true. Without them, it would have remained a dream, or a small event. We have raised at least $12,000 so far and more donations are coming in almost daily. The money is being donated to the Canadian Lyme Disease Foundation and will be put towards more awareness as well as one day creating a testing facility for Lyme Disease in Canada. At the moment, tests in Canada are woefully inadequate and people end up sending their blood to laboratories in the USA. This further skews the number of cases in Canada.

I've contacted newspapers, radio and television before our Walk to ask for reporters to cover the event when it became clear that it would be bigger than I originally thought it might be. There was one photographer from our local paper who took lots of pictures of the sea of green T-shirts streaming by, walking for awareness. Yet, no pictures, no mention, no article appeared and no other media even responded to my messages, calls and voice mails. Today on Breakfast television there was a report about Bicycle month with 200 people coming out - we had double that number out. My friends who have gone with me through this disease for the last several years said it was an eye-opener for them to see so many people with the same story. Surely it should be important enough to pick up by reporters?

I've been writing lots of letters and emails and hope something will get through!

We Lymies feel that this disease is being ignored, not only by the medical profession, but also by the media. There are very few warnings while West Nile gets regular attention. We need the same level of reports and information about Lyme Disease. Transmitted through the bite of an infected tick, the number of Lyme disease cases in the United States has doubled since 1991. At least 27,000 new cases are reported each year. But because of inaccurate tests and under-reporting the actual numbers may be up to 12 times higher, according to the CDC, making Lyme disease an epidemic larger than AIDS, West Nile Virus and Avian Flu combined.

This is a serious condition, stealing people's lives and minds and destroying family relationships, savings and futures. It can become an epidemic, but can be prevented if the public is aware. We really need to show how "not rare" the disease is at this point. Not all Lyme patients are public with their condition, because of various reasons, ridicule and other issues. I am completely open and nothing about my disease is a secret. If it helps someone else, I'm happy to talk.

Thank you cannot cover the grateful feeling in my heart, for everyone who did something to make this Awareness Day the success it was.
We CAN make a difference.

Monday, May 21, 2012

Calls for Deb Matthews' Resignation

What they said!!! Personally, I've written to Deb Matthews, Minister of Health and Long-term care, at least twice. Never once did I even receive a form letter to acknowledge receipt of my letters. Please read the letter below, submitted by the York Regional Lyme Alliance and published in "The Daily Observer" (original link below the letter.)

Hon Deborah Matthews, MPP

Dear Editor:

The growing Lyme disease epidemic in Ontario has been repeatedly ignored and dismissed by the Ministry of Health leaving millions of Ontarians in danger of contracting a debilitating and deadly illness without the institutions in place to provide them with proper treatment. We therefore demand that Health Minister Deb Matthews resign due to her negligence and her failure to provide Ontarians with the "finest healthcare" that Premier McGuinty has promised us.

On Nov. 30th, 2011 MPP Bob Bailey (Sarnia-Lambton) tabled a petition endorsed by over 100 Ontario Municipalities representing more than 3 million Ontarians (2006 statistics) calling on the Minister to enact immediate changes to the way Lyme disease is tested and treated:

1) Include all currently available and scientifically verified tests for Acute and Chronic Lyme Disease diagnosis;

2) To do everything necessary to create public awareness of the disease;

3) To have internationally developed diagnostic and successful treatment protocols made available to patients and physicians

The Minister responded to the petition on March 19th, 2012 by stating that the government is “committed to protecting the safety of all Ontarians and their families from preventable vector-borne diseases.” However, her response failed to address the major issues outlined in the petition and ignored Ontario’s Chief Medical Officer’s warning that “If left untreated, Lyme disease can progress to an early-disseminated disease with migraines, weakness, multiple skin rashes, painful or stiff joints, cardiac abnormalities and extreme fatigue. If the disease continues, arthritis, along with neurological symptoms such as headaches, dizziness, numbness and paralysis can occur.” Given the magnitude of Ontarians asking for change, it is beyond belief that such a simplistic response could be given.

It also was both shocking and discouraging to see that there was no commentary regarding the present testing regime which has failed so many Ontarians. Rather the status quo would be maintained without any change, expansion or even review. Nor was there any suggestion of inclusion of access to testing which many Ontarians have sought from international labs.

Ontario doctors follow a two-tiered testing system for Lyme disease. The first screening test is called an ELISA test. When ELISA test results for Lyme disease are positive, doctors prescribe appropriate antibiotics. In 2006, The International Lyme and Associated Diseases Society, a world-renowned body, said that “The ELISA screening test is unreliable. The test misses 35% of culture proven Lyme (only 65% sensitivity) and is unacceptable as the first step of a two-tier screening protocol.”

When ELISA test results are negative, doctors can not prescribe antibiotics and in Ontario doctors rarely order the second, more reliable, Western Blot test.

The longer it takes for a patient to be diagnosed, the worse their condition becomes, and the greater the financial and emotional toll on the patient and their family.

Many doctors including infectious disease specialists know very little about the growing threat of Lyme disease (and the scandalous lack of treatment for those affected) in Canada today.

Ontario’s health system is rapidly deteriorating, i.e., the recent ORNGE fiasco, the issues with eHealth, the insufficient number of family physicians in the province, etc. If indeed a cabinet minister is responsible for the inaction of their ministry, then Deb Matthews has crossed the line one too many times. She has demonstrated astounding negligence in the case of the growing public health threat of Lyme disease.

The members of The York Region Lyme Alliance demand the Minister’s immediate resignation and plead with the Premier to replace her with someone who is committed to providing Ontarians with the finest health care.

The York Region Lyme Alliance
Lyme Alliance calls for Deb Matthews' Resignation - The Daily Observer - Ontario, CA

Saturday, May 19, 2012

Lyme Day, Brampton - a huge success!

Today, as you know if you have been reading this blog, was the date for our Lyme Disease Awareness day. So many people gave so much of their time to make this dream of mine come true. Without them, it would have remained a dream, or a small event.

But look! I have no idea how many people turned up, but there was a sea of green! Roberta, bless her, had my camera and went nuts. I'm so grateful to her, because without that, we wouldn't have these pictures capturing the moments!

Ready to start the walk!
I'm busy uploading and captioning pictures. If you have a Gmail account, you can log in and post comments or names on the pictures if you like. The link to the online album is  HERE  - please enjoy them!

Thank you can not cover the grateful feeling in my heart, for everyone who did anything to make this day the success it seems to be. I'll send emails as well, but please know that everyone, near and far, created the day. To everyone who made the effort to come, to join in, to tell others, or in any way did something - my apologies if I didn't get to talk to you in person today.

Let's get the word out about Lyme Disease, every day, in every way we can!
We CAN make a difference.

** See the front page of the site for a plan and request for your Walk pictures!

Thursday, May 17, 2012

Lyme Walk T-shirts just arrived!

I'm so excited -- the T-shirts look great! Sorry that I had to model it myself, but there's nobody else --- and just a cell phone pic.

The link is on the LymeWalk website, under the Sponsors tab - please visit a few of them and tell them where you found them! For instance, our tick was designed by Jenni, who has her own unique style and is accepting commissions! Her business card is on the Sponsors page, with link. Check out the sponsor logos, please. It would be great if you could visit their sites. We also had a bunch of supporters who helped in some or other way to make this Lyme Awareness Day come together.

Lyme Walk Brampton T-shirt
Sample of the Lyme Walk shirts

Did you see the Maple Leafs collectors items we have for the Silent Auction? Read the post below this one and please tell any hockey fans you might know. NOTE: Cash or credit card only, please.

We'll have a Petition ready for people to sign, to get awareness to the Government, adding our voices to those already trying to get action.

Please bring water, sunscreen, snacks or a picnic if you plan to spend the day in the park (there's a Midway in the afternoon), a folding chair or picnic blanket, and anything else you might need for a day out. On the Walk FAQ page you will find a MAP of the park, showing where is what, parking, activities, and more.

Weather promises to be gorgeous on Saturday. We hope to raise awareness about Lyme Disease, to share stories with each other, and to have fun out.

Wednesday, May 16, 2012

Autographed hockey items for our auction

Now, don't shoot --- but we are not (ice) hockey fans. And no, not really rugby fans either! But we know how important hockey is to Canadians.

If you are in the market to collect some autographed Maple Leafs items, drop by on Saturday in Brampton, at the Lyme Disease Awareness Day! Two very special autographed pieces will be part of the auction.

(Link to bigger view is below)

There are many other items to bid on as well. You don't have to participate in the Lyme Walk to be able to bid; there are separate bid forms to register (cash or credit card only). The Walk participants will receive a bidder number when they register and hand in signed waivers as well as any pledges or donations they collected.

Some items for the auction:
  • Remote controlled helium fish (you got to see it to believe it!) 
  • Pinwheel wine decanter (priceless)
  • Watches, radios and more
  • Beauty products
  • Family 4-day passes for the Brampton Fall Fair
  • Household items
  • Canvas lounger chair
  • Maple Leafs autographed jersey
  • Maple Leafs autographed stick
  • and more!

Crazy prizes will be handed out during the day, but you have to be there to win. Hint: A crazy hairstyle might get you a prize ... Some little prizes, some fun toys, some big things -- and some very special items that were designed especially for our Walk event in England by a friend of mine. The files were sent electronically and the designs created in Alberta, then shipped off in a hurry to be in time for Saturday. These are special Lyme decals.
This is a truly international event! Thank you, Bendog and Sue, for your part in our day! 

Tuesday, May 15, 2012

BramptonGuardian Article: Lyme Mobile hits the streets

Feeling quite embarrassed  reading all that ... and a slight mistake as I never stopped working altogether, but just adjusted hours. The people where I worked, were and are immensely supportive. Work kept me sane. Just having to get up each day, get dressed, get out, instead of staying in bed (which was what the body wanted), made a difference, I'm sure.
BramptonGuardian Article: Lyme Mobile hits the streets

Another picture that was in the Guardian on May 4, is here below. That was the day when we talked to the City Council, as a previous entry on this blog explains. 

 Weather for our Lyme Awareness day on May 19th looks great!

If you're coming, please remember to bring sunscreen, water and a picnic blanket or chair to sit on. We have no idea how many people might be there, but it looks promising!

Silent Auction items are fabulous. There should be something for anyone. Even if you are not taking part in the walk, you can register to bid on items if you like. Registered participants get a bid number automatically to use if they like to bid on any items.

There are special Maple Leafs things ... signed ... check out Facebook or our LymeWalk website for pictures which should be taken today and uploaded as soon as possible.

We are so very grateful to our sponsors, to committee members and many, many other helpers who made this day possible. May it be that Lymies and their caregivers find support, networks, help and information to help the isolation so many feel by not being able to get treated in Canada.

Lots of prizes will be handed out, but you have to be there to receive them! Crazy things --- anyone can win.

Friday, May 04, 2012

Lyme Mobile brings something wonderful

This is meant to be, Kim and I are sure of it! This Lyme Mobile has already saved lives. Happened again this morning. But first to tell about last night!

We took the Lyme Mobile over to Vaughan for the Magnotta Underground Cellar event, to benefit CanLyme and awareness of Lyme Disease. Neither of us met Rosanna Magnotta before, although of course we know of her, and their winery is one of our (family) favourite spots in the Niagara Region.

Trying to change lanes to get to the winery last night was interesting! People kept reading the messages and signs on the car instead of letting us in! But we made it and Rosanna was waiting for us. The Lyme Mobile was parked so that arriving guests would see it and know they were at the right place.

Rosanna Magnotta, Kim and Marlene with the Lyme Mobile

Inside, we met with several interesting and interested people, struck up conversations, enjoyed the delicious snacks and of course Kim shopped a little! We were surrounded by barrels of aging wine, and people who actually asked the right questions about Lyme instead of looking surprised. Sharing stories, some of them horror tales of sadness and lives forever changed. There has to be accountability; this can not continue.


Picture above is a combination of one of the pretty decorated tables scattered around, and a view from a corner of the cellar where the function was held. (bigger picture)

A meeting meant to be
This morning, I took the Lyme Mobile to work since it has to be at the Brampton Community Expo tomorrow, with flyers, CanLyme brochures, and Pam and I in attendance to promote the Lyme Awareness walk on May 19. I took a different route than usual, stopped at several places where I don't usually go in the morning, and then decided to visit a business supporting our Lyme Walk. I didn't know where they were, so pulled into an office building's driveway to make a phone call. 

I wasn't there 10 seconds when a man came out of the building. He did a double take when he saw the Lyme Mobile, walked to the side and asked me to roll down the window. He said, "This is the Lyme Disease I know about, right? From a tick?" I said yes and he said, "I have a friend in the hospital in Downtown Toronto. She is dying from Lyme Disease. The doctors don't know what to do. I don't know what to do."

I grabbed flyers about the Brampton Walk and brochure of CanLyme, told him I have Lyme Disease myself and was dropped from treatment in Ontario. He got very upset, saying what are people supposed to do? I said that is exactly why we are driving the Lyme Mobile, arranging events like the Lyme Walk, handing out information and trying to bring awareness. Wrote down some info, told him to try and call my doctor, give my name and see if he can get help for his friend. He was so grateful, I was in chills and almost in tears .... 

The kind, kind man shook my hand, and said, "What are the chances of me meeting you here now, today, in this moment?"

This is planned, this is meant to be, we are being directed into a place and being exactly where we are to be. No other answer. For me, I believe that God is directing this. Other people can believe in another power. But this is not from one person or even a group of people.  There is a force at work, and this year will bring great things and great changes.

The Lyme Mobile and the Hydro worker
On Monday, when Kim had the Lyme Mobile, she stopped at a Tim Hortons. There was a group of Hydro workers and they asked about the disease. She started talking, one guy pulled up his shirt --- and he had a bull's eye rash. Kim immediately handed him brochures and told him to get himself to a doctor as soon as possible, to insist on at least 2 weeks of antibiotics and to find another doctor if that one wouldn't give it to him. Unfortunately only a very small percentage of infected people show a rash like that, but the specific rash is complete proof of Lyme Disease. Immediate treatment is needed. DO NOT wait for symptoms. 
That is what we're trying to accomplish: Information, education, knowledge, patients to be on the lookout without being paranoid, and doctors to treat immediately.

Other stories to read:

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