Welcome to my blog! This is a place of information and hope for fellow Canadians who are suffering from Lyme disease. I want to share with you the knowledge I have gained during my fight with this debilitating, frightening, and misunderstood illness. I hope you will be blessed.

Monday, March 03, 2014

Compare and Contrast

At the risk of sounding like a teacher (....oh ya, I am a teacher), please read the following two letters and note the similarities and differences.  Both letters were written regarding Elizabeth May's bill C-442 (to create a National Lyme Strategy in Canada), which, by the way, was presented for second reading in Parliament today.  Perhaps this little exercise will help to demonstrate the great "divide" in the world of Lyme.

A letter to me from Conservative MP Susan Truppe

Dear Ms. ________ , 

Thank you for your email concerning MP Elizabeth May’s Private Members Bill – Bill C-442, The National Lyme Disease Strategy Act. I appreciate the time taken to share your views with me and for showing interest in this healthcare policy proposal.

First let me assure you, our Government is committed to the health and safety of all Canadians. Putting the interests of Canadians and their families first is always top of mind.

The Public Health Agency of Canada is working to support the provinces and territories in addressing Lyme disease. Our Government is committed to working collectively and collaboratively with our healthcare partners to find meaningful solutions.

We have invested over $4.5 million for research related to Lyme disease since 2006. In addition, we have established improved surveillance specifically aimed at Lyme disease so that action can be taken quickly and effectively.

In regards to Ms. May’s Bill and the call for a national Lyme disease strategy, we are currently reviewing its merits.

Most importantly, our Government will continue to actively engage with provincial and territorial partners in monitoring the spread and development of Lyme disease. Canadians can rely on this Government’s management of healthcare priorities and continued leadership.

Once again, thank you for taking the time to write in.

Yours sincerely,

Susan Truppe, M.P.
 
 
An open letter from Dr. Murakami (Canadian Lyme-literate medical doctor and Lyme educator) to Members of Parliament who will be voting on Bill C-442

To all Politicians Voting on the Bill 442.

February 12, 2014

SYPHILIS THEN, LYME NOW


The serious epidemic of Lyme disease is present now but not "prominent" in Canada because the Medical divide that exists in our association. Doctors are told that Lyme disease is a non-existent rare infection and without a proper ELISA test (which is grossly inadequate) the diagnosis of Lyme disease is being... misdiagnosed.

The federal government has stated that Lyme disease is a clinical diagnosis and a positive lab test is beneficial but not necessary in the establishment of a diagnosis but unfortunately there are differences of thought by our peers.

We have adopted the American IDSA guidelines for practicing physicians and in Canada we have adopted these guidelines without any previous discussions of having our own Canadian guidelines.

We must become more educated and clinically aware of this most rapidly growing vector borne infection. Most recently, the naysayers in the United States have admitted to 300,000 cases annually up from 30,000. This would reflect automatically 30,000 (10%) as a minimum number of cases in Canada and yet only about a few hundred cases are annually reported across Canada which is extremely low and misleading.

Patients are suffering needlessly, expending monies across the border and into Europe for proper treatment and diagnosis. This cannot continue and as physicians we must be more aware that the symptoms of Lyme disease which is and are being misdiagnosed. To give an example, MS in Canada is the absolute highest in the world, 240-340 cases per 100,000 and we have the lowest number of Lyme disease in the world (WHO).

The big divide has led to the necessity of the legal system stepping in to protect Lyme Literate doctors. Twelve USA states have become involved since the medical profession will not openly discuss all aspects of this disease. Statutes and laws are now in place for the protection of Lyme literate physicians and their charts cannot be taken, doctors cannot be cross-examined, their licenses cannot be taken away.

It is simply a matter for our profession to discuss this disease as we have with all other diseases in the world. Clinicians must include Lyme disease and co-infections in the differential diagnosis and be cognizant of all the symptoms that can occur since it is a multi-organ system failure that occurs.

At the present time, patients suffer needlessly; mentally, physically and financially with the most common cause of death being suicide. The answer appears to be very simple that we must dialogue openly and regularly.

On the side of being optimistic there are increasing numbers of medical doctors and naturopathic doctors treating Lyme disease. This would indicate a greater understanding and acceptance for this disease and it is hoped that this will continue with greater alacrity, education and hopefully better lab testing with mutual medical understanding by the "divided" physicians. There is no time for complacency.

Yours truly,

Dr. Ernie Murakami, MD, BA in Bacteriology and Immunology
Clinical Associate Professor Emeritus University of British Columbia
President, Dr. E. Murakami Centre for Lyme

I would Like to add that in my travels in every Province across Canada that every lecture was attended by a minimum of 50% and up to a maximum 75% Lyme Disease sufferers. The only Provinces that I have not attended was PEI and Quebec but I have corresponded with many patients from both of these provinces. The results were assessed by a show of hands before meetings and Wendy Atkin from Kinston Ontario told her story to an over filled room of which there was the 75% Lyme sufferers. The Ambassador Hotel donated the room which held 250 people and another 100 were refused entry. Yet every day there are doctors telling their patients that there is virtually no cases of Lyme disease in Canada. How long must we live with this misinformation causing severe suffering of Canadians caused by the DIVIDE in our medical profession.


Monday, February 17, 2014

Olympian fought Lyme Disease and won!




Since we're in the thick of the Sochi Olympics, I wanted to bring your attention to a very brave and determined woman, Angeli Vanlaanan.  Angeli is a halfpipe freeskier who made the U.S. Olympic team after a 3 year battle to regain her health.

What an inspiration and message of hope this is for all Lyme sufferers everywhere.  Yes, it is possible to regain your health, your strength, your life. 

To watch Angeli's documentary about her illness, click here.

To visit Angeli's website, click here.

All the best to you, Angeli!  We are very proud of you!
 


Wednesday, February 12, 2014

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!

elizabeth may

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.

Personal Testimony of David LeggettMany 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,
Elizabeth May

Wednesday, February 05, 2014

And the saga continues...

Gee, wasn't it just a couple of weeks ago that I wrote about going off my antibiotics....hopefully for good?  Thank goodness I didn't bother to celebrate because it would have been a terrible let down!

A week ago, a few symptoms crept back.....vibrations in my legs and body, and weird head vibrations when I'm falling asleep (which prevent me from actually getting to sleep).  Sleep meds have helped immensely and I'm taking some herbs/supplements to help my symptoms:  Banderol and Samento, and curcumin (along with all of my regular supplements).

My LLMD told me to wait it out and see if the symptoms would go away on their own.  Perhaps they are stress-induced.  Yes, it's been a stressful month.....4 family birthdays, report cards, and added workload due to my hubby having a brutal flu for a couple of weeks.  Lack of sleep, lack of regular exercise (although I am trying!), and a little too much sugar in the diet could also be contributors to my problem.  It's time to clean things up!

I have my next doctor's appointment in 2 weeks, so I guess I'll see what he will want me to do about this.  Go back on antibiotics???  I hope not!  But I'll do whatever I need to do to keep these symptoms at bay and be able to live a normal life.

I'm so enjoying the normality....even banality....of life these days, and never ever want to take the simple things for granted again!