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, January 20, 2014

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.

Saturday, January 11, 2014

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 hereThey 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.