Lyme Disease Conference Update

May 11, 2016

As posted by Elizabeth May, who brought the Private Members Bill about Lyme Disease (Member of Parliament for Saanich-Gulf Islands, leader of the Green Party).  See blog post about Bill C-442

As many of you know, the Federal Framework on Lyme Disease Conference will take place in Ottawa starting on Sunday, May 15. Patient representatives and stakeholders will be speaking at the public forum Sunday evening. Members of the public can also register to attend the conference, including the public forum, however the speaking slots for the Sunday night are now full.

You can also listen to the conference online if you are unable to attend in person. If you select this option on the registration form, details will be sent to you about conferencing in.The government has now opened up registration so that an unlimited number of people can listen in to the conference online.

The conference agenda has also been posted. You can read it here.

Once again, the details are as follows:

Event: Federal Framework on Lyme Disease Conference

Where: Government Conference Centre, 111 Sussex Drive, Ottawa

When: May 15-17 -- public forum will be held May 15 from 7:00-9:30 PM

Register: Complete this form and email it to LymeDiseaseConference-ConferenceMaladieLyme@phac-aspc.gc.ca

Agenda: PDF available here

Website: canada.ca/lymedisease

Contact: LymeDiseaseConference-ConferenceMaladieLyme@phac-aspc.gc.ca

For more information about the conference, you can visit canada.ca/lymedisease. To register to participate in the conference and public forum, you can fill out this form and email the completed form to the Conference Secretariat.

If you have any questions about the Lyme Disease Conference, you can also contact the organizers by e-mail.

Meeting today with Member of Parliament, Kyle Seeback

Posting after a full month of hiatus from the blog, dealing with a heap of extra work, overtime, trying to learn new stuff, and working on a new international project. Thank you if you still stopped by the blog despite a lack of updates.

Today's heat wilted us again, added tornado warnings for an area around us, and had everyone seeking the coolness of air conditioning. I've got pictures taken inside the car, with temps registering 39 C (Monday) and 44 C (Tuesday). All our igloos have melted .... But we are promised relief in the next few days.

We had another form of relief as well, during a meeting this morning in Brampton, Ontario. I'm not at liberty to give all the details yet, but there will be follow-up very soon, and I believe that promise!

Thanks to City Councillor John Sanderson, who arranged for a meeting with MP Kyle Seeback, five of us met today to discuss the problems around Lyme Disease, lack of doctors to treat, patients being set adrift and not enough warnings put out for the general public. The bottom line is still that early diagnosis and treatment usually help to control the disease. If allowed to spread, the cost on all levels can be debilitating.

John Sanderson, me, Kyle Seeback, Rossana, and Kim

Mr. Seeback was very supportive. He knew a little about the plight of Lyme patients, but was suitably shocked and upset about the fact that we are not able to get treatment in Canada, that doctors are sent "on vacation" and that we have to seek help elsewhere. He agreed that we have to get the Federal government on board. He was also aware of the Private Member's Bill being brought forward by Elizabeth May to ask for a National Lyme Disease Strategy.

Rossana, who lost her husband to Lyme Disease and has been an outspoken advocate for years, talked about the new foundation she founded in his name and about what is being planned there. The hope is that the research facility will be open in 2015. [ If you missed that post, here is more, under the heading "New Foundation for Vector-Borne Diseases".]

Kim and I have both been sick with Lyme Disease for years, visited many doctors and specialists in Canada and found no help or correct diagnosis. Eventually we both had to seek treatment in the USA, pay out of pocket, spent years in treatment and still have to deal with the devastating results of the disease running rampant in our bodies for years before that. We are both now in remission. Rossana, Kim and I all and receive emails every week from people who are newly infected with nowhere to turn.

This will stop. But it might take Superman to help us!

Young Evan in his Superman shirt, admiring the Lyme Mobile

BREAKFAST AT APPLEBEE'S on SATURDAY
If you are in the area near the west end of Toronto, Mississauga, Etobicoke, Brampton, Caledon (Counties of Peel, Caledon and Halton Hills), please let me know if you still want a ticket for breakfast at Applebee's on Saturday morning! We have the place to ourselves between 8 am and 10 am. A ticket will buy you a short stack of pancakes with trimmings, bacon, coffee, tea or juice. For each ticket sold, 70% will be donated to the cause of Lyme Disease awareness. Email me through the Contact button above; there are still some tickets available.

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