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.

A little advice for the holidays.....from someone who's been there

I want to take this opportunity to wish all of you a very Merry Christmas and many blessings in 2014! 

I know this may be a very difficult season for many of you who are sick with Lyme disease.  It's such a busy time of year.....shopping, baking, hosting, cooking, visiting.....and some of you are just not able to do it.  The fatigue of Lyme can be crushing.....I do remember!  So, let others do the work for you, and do what you can to find some enjoyment in the season, and in visiting with others.  It's good for the soul to be with others.

Perhaps friends could visit in short spurts over the holidays.  Maybe they could bring a meal that you can all share together.  When I was sick, one of my friends brought a lasagna meal, and we all ate together.  I sat at the table with a blanket around me because I was so cold, and I enjoyed the stories told.  I felt so horrible, physically, but the companionship was wonderful. 

Watch some Christmas movies as a family, and even though you are sick, try to cultivate that family togetherness that your children are craving at this time of year especially.....even if all you can do is lie on the couch.  Invite your little ones to snuggle up with you; after all, it's you they want, not things.

Try very hard to not worry about how all of this is affecting your young family.  Children are so resilient, and they adapt to new situations.  My kids have seen it all in their young lives.....believe me.....from Daddy in the hospital with no hair and 50 staples in his scalp, to Mommy and Daddy both being carted off in an ambulance while police babysat them until Grandma and Grandpa could arrive.....to Mommy being unable to cook, clean, or care for them in the usual ways.  (You can read our whole story here.)
 
With my husband and I both seriously ill at various times for 10 years, one might think that the children would be scarred for life.  This is not true.  If anything, it has made them empathetic and sensitive.  It has shown them the importance of service to others in difficult times, for we certainly had our share of help over the years.  It has shown them the meaning of family when their grandparents, aunts and uncles, and cousins came to help in our times of need.  It has shown them how God cares for us and carries us through the valleys of our lives.  Our kids have continued to thrive, do well in school, and be well-adjusted kids, all in all. 

Just continue to do what you can to show love to your children!  Snuggle, read them a book, watch a movie with them.  Even though you are not feeling well, just give them that reassurance that they are loved, and use this situation as a learning opportunity to prepare them for the inevitable valleys they will walk through in life.

I would like to finish off here by sharing a beautiful song with you by award-winning Christian artist Natalie Grant.  Oh my!  This song has touched my heart so much in the past few weeks and I hope it will touch yours.  It reminds us that as Christians, we have HOPE, and this hope endures even through dark times.  And this hope is not just an optimism, but it is the hope of knowing Christ, and knowing that He promises to be with us throughout our lives, in good times and bad.  He gives us the strength to endure.

I pray that you will know Christ and His hope this Christmas and throughout the rest of your life. 

A story of hope

I was recently contacted by Cameron Von St. James whose wife, Heather, is a cancer survivor.  Given the nature of her illness and the target audience of my blog, he thought that his wife's story would be a fitting reminder to Lyme sufferers that we need to have hope. 

As I watched the short video, it reminded me of my days as a caregiver to my husband who had cancer, which I wrote about a few posts ago.  The stats for my husband's cancer were not in his favour, and neither were Heather Von St. James' stats.  But we should never place our hope in statistics or the odds, because only God knows how things will play out, and in fact, the Bible states that the outcome is completely in His control. 

And I wouldn't want it any other way!

Does this mean that the results will always be favourable?  No, not always.  Are our prayers always answered?  Yes!  But not always in the way we want.  Regardless, my husband and I trusted God through our illnesses to sustain us, give us courage, provide medical care, and lead us down the right path.  But had He decided that it was time to call us home, well, as scary as that might seem, we were ready for that, too.  Submitting our lives to Him in our suffering gave us the ultimate peace and hope that we needed.

Dear Lyme sufferers, don't lose hope!  The road may be long, winding, bumpy, and sometimes scary, but there is always hope and a Heavenly Father who cares.

Thank you, Heather and Cameron, for sharing your story.  May you be blessed with many more years of good health.  To visit Heather's blog, click here.