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.

Thursday, March 27, 2014

Lots of reading!



Way to go, Maclean's Magazine, for publishing a balanced article about Lyme disease.  The more we can educate people, the more people will take precautions.  After all, the best "cure" for Lyme is to never contract it in the first place.  Click here to read the article in Maclean's.

On a personal note, I thought I'd give you an update about my life with Lyme.  I stopped antibiotics around January 1 of this year, but re-started them a few weeks ago because symptoms started creeping back.  On top of that, I caught the worst cold ever 2 1/2 weeks ago, and it's still hanging on.  The cold, combined with the Lyme, has pretty much done me in the past 2 weeks. 

Yesterday, I had the worst fatigue I've had in a couple of years.  I came home from work, laid down on the couch, and could.not.get.up!  Hubby had to make dinner, do the dishes, run our son to an event, make the lunches, and drag me up to bed!  Thankfully, after a half-decent night's sleep, I'm feeling considerably better today, though still tired.

I'm trying to follow a detox diet currently, but I keep falling off the wagon!  The book that inspired me is called The Detox Diet by Toronto naturopath Natasha Turner.  Perhaps you've seen her on The Marilyn Show or Dr. Oz.  The book is fabulous, and I have no doubt that following the diet would do wonders for my (and everyone's) health.  So, I'll get back on it tomorrow and hopefully persevere a little longer this time.  With Lyme disease, it is very important to control inflammation by eating a healthy diet free of sugars and low in starchy carbs. 

I also purchased the book Why Can't I Get Better?  Solving the Mystery of Lyme and Chronic Disease by MD Richard Horowitz.  The book is much thicker than I realized when I ordered it, so it's not a quick read.  It chronicles Dr. Horowitz's practice treating Lyme for the past 25 years with lots of patient stories as well as valuable medical information.  If you have Lyme disease, it's worth it to have a copy of this hanging around for reference.  Dr. Horowitz has quite a sense of humour which shines through in various parts of the book.  Check out his Ballad of the Deer Tick on YouTube!

Hoping this post finds you well, with a happy heart despite circumstances.  Spring is just around the corner (at least I think it is!) and I know I am looking forward to warmer days, sunshine, flowers, and the yearly reminder that new life can spring from a cold, dark place.
 

Sunday, March 09, 2014

Thank you, MPP Steve Clark, for speaking up




MPP Calls For More Effective Diagnostic Testing For Disease

Clark PCC1354Queen's Park – Leeds-Grenville MPP Steve Clark has called on the Ministry of Health and Long-Term Care to improve the way Ontarians who suspect they have Lyme disease are diagnosed and treated.
In a Member’s Statement on Thursday, March 5, Clark said the health-care system is failing Ontarians with the disease, including many in Leeds-Grenville – which has been identified as a provincial hotspot for the ticks that carry the bacteria that causes Lyme.



Tuesday, March 04, 2014

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.

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.