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.

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