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,

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!

The end of treatment (?)

In November of 2012, I announced my end of treatment with great fanfare!  How exciting it was to be DONE with antibiotics and to move on with my life.....permanently!  Well, that didn't last long, as about 7 weeks later, I experienced a mild relapse and went back on antibiotics.

I remained on antibiotics for another 12 months (just to be sure!), and added in the herbals Banderol and Samento for about 6 months.

So here I am again, ready to venture back into the world of antibiotic-free living!  I refuse to celebrate it, though, like I did last time.  In fact, I started tapering off the meds in December, and went off completely a couple of weeks ago without even mentioning it to anyone outside of my family.  It wasn't really a calculated thing.  I honestly just don't feel all that excited about the event this time around.

So why is that?

Well firstly, I can't be sure that my current good health will last once I stop the antibiotics.  Though I hope it will, you never know.  I don't want to feel a huge let down if a few symptoms creep back in a few weeks.  Secondly, Lyme doctors and researchers really don't know if a cure is even possible in chronic Lyme disease.  A reoccurrence might happen years down the road, requiring further treatment.  I think that Lyme will always have a place in my life, if not for the physical symptoms, then for the thoughts of it and how to keep it at bay.

So here is my Lyme ticker as of today.....the day that I "announced" my second attempt at stopping antibiotics.  I'm not going to stop the ticker from counting at the side of my blog, though.

 

Here's hoping that all goes well!  I'll keep you updated.

 

 

HealClick - Find help on the internet

I'm not sure where I'd be today if it hadn't been for the internet.  The information I gathered from the web was critical to my self-diagnosis of Lyme disease.

Whatever illness you have, or think you might have, finding possible answers to medical problems can be just a click away.  However, the information you google isn't always reliable.  It's important to check out the source of the articles you read, and the credibility of the author.

In the case of Lyme, the internet is a valuable resource because our GPs just don't have all that much information to give us.  Most doctors are not well versed in this illness, and most are unable to make a diagnosis despite the symptoms. 

Through my horrible Lyme brain fog, I sat at my computer in the early months of 2011 and researched the symptoms of Lyme, listened to an interview by LLMD Dr. Maureen McShane, found out how to send my blood to IgeneX, learned about the controversy surrounding Lyme, found a Lyme support group in a neighbouring state which led me to the LLMD I see today.  How could all of this have happened without the internet?  Certainly no one around here in Canada was guiding me in the right direction!

I was contacted recently by an individual involved in a new internet project called HealClick.  I have not had the opportunity to explore the website, but have read their information and watched their video.  Basically, this is a website that helps people network with others who are experiencing similar symptoms, and to find help for their illnesses.  This could be a big help to people with Lyme disease.

You can check it out at www.HealClick.com and watch their video here.  They are launching the site on Tuesday, January 14 at 8:00 a.m.
 
Here is some information that was provided to me about HealClick:

• HealClick is completely free and will always be.
• We are a site created for patients by patients. Our co-founders tried to find a site that filled their needs for social support and medical information sharing. After they couldn't find what they were looking for they decided to just make it themselves. 
• Our site is for patients only.  We don't recruit Doctors or researchers because we want to hear directly from patients about what works for them and what doesn't.
• Matching is what sets us apart. Our site tells gives you a percentage match to every other member. This way you know at a glance how similar you are with regards to your diagnosis, symptoms, and even treatments.
• Start any kind of topic. If you have a question or an experience to share, we want to hear it.
• Review any type of treatment.  Tell us about your experience, and compare your results with others.
• Our site offers unique social support. The founders, writers, and community managers are all patients.We foster a positive and caring atmosphere where people can share lighthearted humor and successes as well as support each other through hard times and setbacks.  
• The medical information that our members provide won't go to waste; it will be used to fuel new research! We will share the anonymized data with researchers that we believe have patients' best interests in mind. More information on how we de-identify data here.
• Privacy is incredibly important to us. Not just with regard to data for research, but with the entire site. Usernames, pictures, and profiles will never be made available to the public.