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

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