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.

Tuesday, September 16, 2014

What will your treatment look like?

I know how scary it is to go to your first appointment with your new Lyme-literate medical doctor (LLMD) and come away with a handful of prescriptions.  So many thoughts swirl around in your head:
  • Are all of these drugs really necessary?
  • Why so many?
  • Can my poor body handle all of this?
  • How am I going to afford this?
  • Am I crazy to do this?
  • Am I crazy not to do this?
Yup, I get it!  But honestly, I think that by the time you visit your LLMD, you're at the end of the line of those who can help you; you've seen every Tom, Dick, and Harry specialist out there.

After visiting two LLMDs and getting the dreaded diagnosis, and after thinking about the scary treatment options ahead, my self-talk sounded something like, "What do I have to lose?  Absolutely nothing.  Could I feel any worse?  Could life be worse?  I'm in pain.  My anxiety is through the roof.  I'm off work on sick leave.  My family is taking care of my house and kids because I can't do anything.  I have nothing. to. lose."

You might be wondering what Lyme treatment may look like for you.  The International Lyme and Associated Diseases Society (ILADS) had just published new guidelines for treating chronic Lyme disease.  Now please don't confuse ILADS with the IDSA (Infectious Diseases Society of America). 

ILADS = good
IDSA = bad 
Doctors in Canada are unfortunately bound by the rules of the IDSA for Lyme which is why they get in big trouble if they prescribe long-term antibiotics for Lyme.  (Hopefully Elizabeth May's Bill C-442 will change this.)  IDSA guidelines state that Lyme is hard to catch, easy to treat, and 3 weeks of antibiotics is enough to kill all of the Lyme bacteria.  From my personal experience and the experience of thousands of others, these guidelines are FLAWED.  If you want to understand more about the politics behind all of this, do watch Under Our Skin, an award-winning documentary about Lyme disease.
But I digress......
To learn more about the new ILADS guidelines, and to read them for yourself, click here.
To check out another set of guidelines, created by LLMD Dr. Marty Ross from Seattle, check out his website Treat Lyme and Associated Diseases.  *Dr. Ross is now asking for an inexpensive subscription ($20/year) to access the full contents of his website and treatment manual.  He is trying to recoup the cost of running the site.  It is a very valuable resource and has been so helpful to me.  He also holds free webinars a few times a month that you can sign up for.  He's a fantastic doctor.
If you're interested in knowing what my own treatment journey was, check out this blog post.
The key to getting well is to
1) Obey your physician and follow all of his/her advice carefully. 
2) Persevere; things will improve over time.
All the best to you on your journey.

Saturday, September 06, 2014

Another year down!

Wow, I let the summer go by without "celebrating" my Lyme anniversary.  How could I forget about that?  I started treatment on June 1, 2011.  It is now September 6, 2014.  According to my Lyme ticker on the left, I have been in treatment for 3 years, 3 months, and 5 days. 

I'm not really in active treatment right now.  Based on my symptoms, I really do feel that I'm in remission.  However, I do still take 100 mg of minocycline daily for "insurance".  I don't want to relapse AGAIN!  Even in remission, I've never felt 100%.  I hover around 85-90% most of the time in recent months.  But I'll take it!!!  I still get tired (could be from the minocycline), and I am stiff, sore, and achy (could be from some other meds I'm on), but once I get moving I'm OK.

So it was back to school for me a week ago, not as a student but as a teacher.  I've felt good enough to increase my workload a bit this year, so hopefully I won't have any regrets about that as the year progresses.  I do have to be more vigilant about doing everything I can to maintain my health:  eat well, sleep enough, and get exercise. 

Sadly, here is my report card for these this summer:




Eating well


Just too much summer indulging, eating out while on vacation, ice cream treats for the kids (and therefore me), visits to Starbucks, and the list goes on!

Sleeping enough


Well what can I say, it was my summer holidays.  Bonus marks here!



Did I mention that I hate exercise?

I think I've fallen into these bad habits because I'm quite thrilled to be a NORMAL person these days, and not a SICK person, you know?  But I do realize that moderation is the key, and I can still have my cake and eat it too if I plan more wisely and don't overindulge, as well as take the time to bake "legal" treats for myself that are low in sugar and carbs.  It can be done!

If you're trying to get well from Lyme, please DO NOT follow my awful example.  Give your body a fighting chance! 

Today is a new start!  I'm planning to follow a low-carb detox diet for the next 10 days to get myself prepped for losing weight in the coming months, and I'm planning to do some form of exercise every other day.  Perhaps I'll give you my next report card on January 1!

Here are some snapshots of things we enjoyed this summer.

Visited beautiful Niagara Falls

Spent an afternoon in picturesque Niagara-on-the-Lake

Visited our Parliament Buildings in Ottawa

Got lost in Gatineau Park looking for Prime Minister W. L. Mackenzie King's summer cottage

Pretended to be a teacher in a one-room school house at the
Canadian Museum of History in Ottawa
Completely blew my diet with a bowl of poutine in Québec!
If you're reading this and don't know what poutine is, it is French fries with cheese curds smothered in gravy - a Québécois creation that can now be found on menus outside of Québec.
Said goodbye to a truly beautiful, historical city. 
So proud to be Canadian!