Oh Happy Day!!! The Federal Framework on Lyme Disease Act Becomes Law!

This is the day we have been waiting for for 2 1/2 years!  Today, Elizabeth May's Bill C-442 passed third reading in the Senate and will become law!  Whoooo hoooo!  Check out the news release.



 

 

Elizabeth May has worked tirelessly to ensure the passage of the Federal Framework on Lyme Disease Act.  We are indebted to her!  She and many, many MPs recognized the need for this law due to the spread and threat of Lyme disease in Canada.  The fact that the law was supported unanimously in both the House of Commons and the Senate shows how hard all Lyme activists worked to educate their local representatives by sharing their stories, circulating petitions, writing to newspapers, emailing their MPs, and the list goes on.  Anyone who has done even the smallest thing can claim a part of this great victory!

 

Now that said, I am not so naive to think that things are going to change overnight.  Lyme treatment is divisive in the medical community.  Canadian infectious disease doctors, for example, are opposed to some of the wording in this law and still wish to adhere to the flawed IDSA (Infectious Diseases Society of America) standards of treatment.  Although they will be in the minority when everyone gathers at the table, they still pose a threat with the roadblocks they will put up.  I do believe that the process of creating a strategy for dealing with Lyme in Canada will be a slow one and a bit of a battle.  It may be several years before Lyme patients will really benefit from this law.  

 

This notwithstanding, some hope has now been injected into a situation that was, up until now, pretty hopeless.  For the time being, we may still have to seek help from U.S. physicians and pay for treatment out-of-pocket, but at least there is a light at the end of this long tunnel. 

 

Thank you, Elizabeth May!

 

If you want to watch the second reading of the bill in the Senate, click here.  It's very interesting!

 

Second Reading of Bill C-442 - National Lyme Disease Strategy Act

Yesterday, Elizabeth May's bill C-442 to create a National Lyme Strategy came up in Parliament for second reading.  You can watch it here.  I truly hope that all MPs will be on board. 

I can't imagine, given her explanation of the situation, why anyone would want to deny this of Canadians.  Perhaps in the minds of some MPs, it boils down to a financial cost for Canada, but the cost to the health care system of leaving Lyme undiagnosed is much greater.  Undiagnosed Lyme leaves individuals searching for answers, visiting multiple specialists, tying up MRIs, and going on disability which deprives the government of needed taxes.  It's just a lose-lose situation.

Let's encourage our MPs to vote for this very important bill.

Urgent Message! Contact your MP! Help get Bill C-442 passed!

This is Elizabeth May, leader of the Green Party of Canada.  About a year and a half ago, she tabled Bill C-442 which would create a National Lyme Disease Strategy for Canada.  The bill is finally coming up for debate in Parliament, beginning on March 4. 

Please read her letter below, and write to your MP in the next week or two to urge him or her to support this bill.  For all Lyme disease sufferers, this bill could be the beginning of everything we have been fighting for!  There is a link below to all of the MPs' contact info, as well as a sample letter you can send.  You may want to edit the letter as the sample provided requests an in-person meeting with your MP.

Here's hoping for good things!



Dear Lyme disease advocate,

Today, I am asking for your help in making a difference in the lives of tens of thousands of Canadians. On March 4th, 2014, the House of Commons will begin debate on my Private Members’ Bill, C-442, an Act to Create a National Lyme Disease Strategy.

Many of you are already too aware of the shortcomings of the Canadian medical system in dealing with Lyme. And while not a panacea, Bill C-442, if passed, would bring together Canada’s Health Ministers, medical professionals, scientists, and the advocates for Canadians with Lyme Disease to work toward common goals: increasing awareness and prevention, ensuring accurate diagnoses, tracking the spread of the disease, and establishing national standards for the care and treatment of Lyme that reflect best practices.

This is not about politics, it is about helping the thousands of Canadian families who have had their lives turned upside down by this terrible disease. We have received strong indications of support from the NDP and the Liberals, and many Conservative Members of Parliament have similarly expressed their willingness to stand behind this important initiative. We are cautiously optimistic that this plan can succeed, but we can’t take anything for granted.

We need you to help make sure that this Bill becomes law. Members of Parliament will be back home in their communities during the week of February 17th and, during this time, we are asking you to meet with your MP to share your story, help educate them about Lyme, and explain to them why Canada urgently needs a National Lyme Disease Strategy. Please go to www.greenparty.ca/lyme-disease to call your MP and schedule a meeting during the February 17th constituency week.

Many of you have already shared your stories with us, and we urge you to continue to do so. Please go to www.greenparty.ca/lyme-disease to write how Lyme has impacted your life of that of your loved ones, and why Canada needs a National Lyme Disease Strategy.

Finally, if you haven’t already, please add your name to the online petition and, if you are able, please print out the paper petition and collect signatures in your community. These petitions will be tabled in the House of Commons, and shared with other Members of Parliament who have indicated their support for Bill C-442.

Thank you for taking action. If you would like more information about Lyme Disease or Bill C-442, please go to www.elizabethmaymp.ca/national-lyme-disease-strategy.

With hope,

Learning to live with the opposition

It's hard to be wrong.  But it's harder to be right, and have people think you're wrong.  It's frustrating, it's isolating, it's demeaning, it's (add the adjective that applies to you).  For almost 2 years now, I've had to deal with the naysayers in my life.

I experienced another situation today in which a medical professional expressed her doubt about Lyme disease....not directly, but through other circumstances.  I can't go into the details right now; perhaps I will be able to later, as it really is a situation that I'd like to write about.

I left that appointment frustrated on a number of levels: 

1) Why will medical professionals not read up on this issue and learn about the controversy? There is a controversy for a reason!  Watch Under Our Skin.  Learn about why Elizabeth May has introduced a National Lyme Bill.  Consider the fact that in Canada, Lyme is supposed to be a clinical diagnosis.  (Though this is never practised.)  Develop a curiosity about why there are very few cases of Lyme Disease reported in Canada compared to the U.S.  Do you think ticks stop at the border?  Well, of course not!  Research and discover for yourself that we have inadequate lab tests here, and inadequate teaching about this illness among doctors.

2) Am I not living proof that the long-term antibiotic treatment prescribed by my U.S. Lyme doctor actually works?  Why do you still not believe?  I was SO sick, and now I'm well!  Do you think this is all a coincidence?  Are you so deeply entrenched in your faulty beliefs that you are blind to the clinical evidence before your eyes?

3) I think that she must believe that since my anxiety has cleared up, that is why the physical symptoms have gone away.  Wrong.  Wrong.  Wrong.  The antibiotics cleared the infection, and my brain chemicals returned to normal.  My physical symptoms were not caused by anxiety.  Again, read up on neuropsychiatric Lyme.  The information is accessible to all.

As I contemplated my appointment and how deflated I felt afterward, I had to turn my thoughts to the people who HAVE been a support to me.  I thought about the online Lyme community that I have become acquainted with.  There are so many people going through the same thing.  We are in this together, and we are a great support to one another.  I thought about the two Lyme-literate doctors in the U.S. who diagnosed me with Lyme.  These LLMDs as we call them, go out on a limb for us every day.  They do what they do despite what other doctors think......and we all know what most other doctors think!  I thought about Elizabeth May, battling for us in Parliament to get her bill for a National Lyme Strategy passed.  I thought about Jim Wilson, founder of CanLyme (The Canadian Lyme Disease Foundation) who suffered from Lyme himself, and now provides an invaluable resource for Canadians with Lyme.  (See the CanLyme website.)  I thought about my colleagues who have signed the petition I have posted at work.  I thought about my husband, some family, and friends who stuck by me and supported me throughout my illness.  I thought about a certain psychologist and a Christian counsellor who both supported me throughout this ordeal and believed that my illness was physical in nature.  I thought about God, who never left me, not for a moment, during those months of agony.  He gave me the strength to persevere and ultimately healed me through the knowledgeable physicians he led me to.

I did a lot of 'thinking' this afternoon, and it has helped.

Lyme patients need to develop a thick skin because there will be plenty of opposition along the way.  Keep looking straight ahead and forge on!  Find that support network and draw them close.  Learn to let the negative comments roll off you. 

You know you're right, and one day you will be vindicated.

Interview with Jim Wilson of CanLyme on the CBC

The CBC strikes again - in a good way!  If you have followed my blog, you may know that CBC radio is close to my heart because it was an interview I heard on their station in 2010 that helped me to self-diagnose my Lyme disease.  The CBC continues to shine a light on Lyme.  Today, the CBC aired a 1 hour segment on Lyme disease with guest Jim Wilson, founder of the Canadian Lyme Foundation, or CanLyme.  They also took numerous calls from Ontarians afflicted by Lyme disease.  The majority of those people, like myself, have had to travel to the U.S. for treatment.  Jim Wilson, a former Lyme sufferer, is so knowledgeable, and a very calm, rational speaker.  His foundation has helped to provide guidance to Elizabeth May's team in preparing the bill.  The segment also featured a short interview with an infectious disease specialist from Toronto who pretty much toed the old party line - the one we're trying so desperately to change!!!

Click here to listen to the program on CBC's Ontario Today.

Click here to visit Jim Wilson's excellent website, CanLyme.

National Lyme Strategy Petition is ready!

Dear Friends,

Elizabeth May is working hard to ensure that her Bill C-442, to create a National Lyme Strategy, gets passed in the House of Commons in the 2012-13 session. She has developed this petition which can be downloaded, signed, and sent in to her office (postage free).  See the link below.  If you could please take the time to download a copy and sign it, along with your spouse and children (there is no age restriction on signing petitions), and send it in, it would be much appreciated. If you think you could gather a few more signatures, then great! If not, no problem. Just send in your family's signatures.

Thank you so much for your help!

Paula

Meerkat's Heap: National Lyme Strategy Petition is ready!  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 ...

The CBC interviews Elizabeth May

Here is a recent interview with Elizabeth May on her private member's bill.  In the interview, it was stated that private member's bills rarely pass.  Let's hope that our Members of Parliament will come to better understand how important this bill is over the next several months.  Again, please contact your MP.  Click here for the interview.

It's time to educate our MPs

We've achieved that momentous first step!  An individual in a position of power in this country has taken notice of this horrendous Lyme disease situation, and is going to help us!  Elizabeth May, Green Party Leader, has introduced a truly non-partisan bill, calling for the development of a National Lyme Strategy to address this situation.

But there is still so much more work to do.  If you are reading this, I urge you to contact your MP and tell them that we need to have this bill passed.  If you are a Lyme sufferer, tell your MP your story.  If you are the friend or acquaintance of a Lyme sufferer, tell them that you know someone with the illness and what they have had to go through.  Tell them that this situation needs to be corrected.

This is not just for current Lyme disease sufferers.  It can happen to anyone, at any time, and can literally ruin your life.  This is not fear mongering.  It's just the truth.  A colleague of mine pulled a tick off his leg a couple of years ago.  His car had broken down and he was simply walking in the tall grass by the side of the road in our city here.  A classmate of my son's recently had a tick removed from her scalp.  And then there are many individuals like myself, who don't recall a tick bite.  Ticks are everywhere, and they are particularly bad this year.  Be sure to protect yourself!  (See my Protect Yourself tab.)

Once you are infected, there is NO proper treatment in Canada, and good luck getting a proper diagnosis or postitive lab test from the Public Health Lab.  The ELISA test is completely unreliable, resulting in a great percentage of false negatives.

You can tell your MP that we need:

- Access to proper testing for Lyme disease, from specialized labs (such as IGeneX in the U.S.)
- Family doctors and specialists who recognize the symptoms of late-stage Lyme disease (because right now, they just don't.  That is why so many people are misdiagnosed.)
- Access to the treatment that best suits our condition.  (In most cases, that involves antibiotic treatment longer than the current IDSA recommended 2-4 weeks.)
- Recognition of this illness, so that Lyme patients have access to Long Term Disability while they are recovering.
- Protection for doctors who should be able to choose the treatment that best suits the patient.  (Currently, doctors' licences are threatened if they treat with long-term antibiotics.  That's why you can't find a single Lyme doctor in this country now.  We had 3 not too long ago, but now there are none.  In the U.S., there are now 12 states that have laws in place protecting physicians who treat Lyme disease.)

It's easy to contact your MP.  You can do so by e-mail.  Find the name and address of your MP here.

Elizabeth May Tables Lyme Bill

Well it finally happened TODAY!  Elizabeth May, Green Party leader, tabled a private member's bill to develop a national strategy for Lyme disease.  I'm ecstatic, and even a little teary.  I can hardly believe this day is here, finally.  It is 40 years since the first diagnosed cases of Lyme disease, in Lyme, Connecticut.  It has taken THIS long for people to finally come to the realization that this is a health crisis.  So many people are suffering, needlessly, due to lack of education and understanding.  I'm not going to even go into the whole political mess of Lyme disease - the corruption, the conflicts of interest, the insurance companies.  I'm just going to enjoy my evening and breathe a huge sigh of relief, knowing that someone in a position of power has finally gotten the ball rolling on this.  Praise the Lord!

Please help us! Very important!

To my blog readers and Facebook friends, could you please take a few minutes to read the following newspaper article.  It is regarding Elizabeth May's upcoming announcement (tomorrow) of her private member's bill to help rectify the awful Lyme disease situation in Canada.  The bill will be voted on sometime between this fall and spring 2013.  If it passes, we could see a dramatic change in the way Lyme disease is diagnosed and treated, and those afflicted would be able to receive appropriate care in Canada........FINALLY!  Please, please, please take a few minutes to contact your federal Member of Parliament and send a note encouraging them to SUPPORT this bill.  I have also included a link to the Parliament of Canada so you can find your MP and his/her e-mail address.  Thank you so much!

Paula

Sooke News Mirror - Lyme disease in private member's bill
Parliament of Canada (See the box "Find an MP by postal code")

Elizabeth May Has Heard Us!

I learned from the CanLyme website today that Green Party leader Elizabeth May will be presenting a private member's bill in Parliament regarding Lyme disease.  I must say that this actually brought a tear to my eye.  I was thrilled when Sarnia MPP Bob Bailey decided to do this same thing in the Ontario Legislature, and I've been collecting signatures for his petition.  However, this issue really needs to be addressed "nationally".  There needs to be an accepted standard of care for ALL Canadians.  I hope and pray that the government will listen and make the changes needed to end all of the suffering that Lyme disease has caused many Canadians.  Here is the excerpt from Elizabeth May's website:

May: Raising Awareness about Lyme Disease

May is Lyme Disease Awareness Month and Green Leader Elizabeth May (Saanich-Gulf Islands) is doing her part to help.
May will introduce a Private Member’s Bill calling for the development of a national strategy to address the challenges of the timely recognition, diagnosis, and treatment of Lyme disease. The bill also calls for funding for provinces and territories to implement the strategy.
"Lyme disease can be devastating. 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,” said May.
Lyme disease is a bacterial infection that is that is spread to humans and animals through the bite of certain types of ticks, particularly the black-legged tick. Notoriously under-diagnosed and under-reported, the disease can cause serious symptoms if left untreated including recurring arthritis and neurological problems.
The risk of exposure to Lyme disease is highest in parts of southern and south-eastern Quebec, southern and eastern Ontario, south-eastern Manitoba, New Brunswick, Nova Scotia and much of southern British Columbia.
Warming temperatures are leading the increase in range for the black legged tick. Scientists are endeavouring to create enhanced surveillance tools, such as risk maps. A national strategy could support this work and ensure that people can be vigilant in areas where the tick is becoming established. If doctors know that the local risk has increased, they can help with early diagnosis and prevention.
Early treatment of antibiotics can avoid potentially serious long-term disabilities or even death. Chronic Lyme disease requires improved diagnostic testing and treatment.
“Scientists are warning that a warming climate will expand the geographic range of Lyme disease-carrying ticks further into Canada, so it is imperative that we are proactive,” said May.

The CanLyme website has also issued this urgent notice:

Urgent request: To all Canadian Lyme patients, please send a current photo of yourself to be used in a collage of those affected by Lyme disease to from a backdrop as Lyme sufferer Nicole Bottles delivers a speech in Ottawa. Her speech will be given at a press conference June 20th, 2012 at which Elizabeth May, leader of the Green Party of Canada, will announce a new Lyme Bill to be introduced into Parliament that will force the hand of the federal government to do what they should have been doing 25 years ago.

Nicole's mother, Chris Powell is asking that people please send digital photos to her. Also if you can, please attend the press conference in Ottawa, June 20th, 2012. Contact Chris Powell for more details.  Click here to go to CanLyme.

Nicole Bottles has a great blog called Bite Me.  Check it out.  And don't forget to SEND IN A PHOTO!