Saturday, January 17, 2015

Picc lines and Plattsburgh

Another Trip to NY:
Last week saw Eric and I heading off to NY for my regular six week visit with my Lyme Literate Medical Doctor.
According to my symptom rating sheet (hands up who is good at those...?) I haven't really improved much in the last six weeks so the doctor has decided to change one of my IV medications from Ceftriaxone to Clindamycin.  She is hopeful that the new antibiotic will cover both my neurological and physical symptoms better so that I can again move forward. The down side of this is I will be administering the IV medication 7 days a week, 2X daily, so I will not be getting a break from dragging around my IV pole for awhile.  In addition to Clindamycin, I will be continuing with Azithromycin intravenously Monday through Thursday.  With the IV flushes and glutathione bags I will be doing up to 5 bags a day.  All this IV medication is, of course, in addition to the oral antibiotics (4 kinds - malarone, minocycline, nystatin, metronidazole), supplements, probiotics and enzymes that I ingest daily as well.
 I am finally finished with my favourite *wink* liquid oral medication - Mepron so I am quite thrilled about that! Mepron is used to treat Babesia as it is an antibiotic used to treat parasites.

The trip itself was relaxing and enjoyable.  We were thankful for better weather conditions than last time and the flash freeze did not affect the roads we traveled on.  I took along frozen meals and snacks appropriate for my specific diet so that I would not have to buy any food and could maintain my diet.  They were microwaved in the hotel room for my evening meal and breakfast and I took a soup for each lunch packed in a thermos.  We have figured out the best way to make the trip - stopping in Cornwall on the way to Plattsburgh (just before the border) and in Kingston for the night on the way back.  This way we are adequately rested and as an added bonus able to make it through Toronto on time both ways to miss the rush hours of traffic!

Picc Line Problems:
The day after arriving home my picc line started leaking as I tried to administer my morning IV.  As the IV lines are one unit this meant that the entire central picc line had to be replaced.  As my picc line was installed in USA, it was not guaranteed that they would do the procedure in Canada.  We decided that I should head to the ER St Catharines so that if they were unable to  help me I could continue on to Buffalo hospital where I had it installed initially.  Thank-you Janet, for changing your plans so that you could drive me to St. Cath! We spent 4 hours waiting to hear the verdict....they were unable to do the replacement procedure that day but I was given a temporary line to last me for up to a week until I could get an appointment to have it done here in Canada.  Thanks to my new family doc I was scheduled the next day in Hamilton General where a lovely team of picc line pro's took care of me.  It was fortunate that I was able to get in so quickly because my arm was swelling already from displacement of the temporary picc line.  Apparently temporary lines are not conducive with on-the-go treatment.  It would definitely not have lasted me a week...

....Double picc lines - notice my IV bag warming up in my ugg boot... ;)

Having the picc line installed in Canada has great benefits for me:

  • If there are any issues with the line I can be seen immediately
  • Community Care Access Center nurses have specific details and instructions of how to help me take care of the line.  When I began treatment CCAC was not involved and I shudder to think of how we were taking care of my picc line (which is a direct line to my heart) before then...
  • My new line will last up to a year so if IV treatment is needed for longer than the one year we are hoping for, we have bought ourselves the possibility of another six months.
  • A financial savings of $3,000 that it cost to install the initial line in Buffalo
 The kids enjoying the rink in our backyard
Insisting that the sunshine meant a picnic lunch was a good idea - why not?!
Niagara Falls to see the lights - what a blessing to be out and about!

Tuesday, January 13, 2015

So Much Help!

Organic veggies from a local farmer and the gardens of friends
My freezer - Full of pre-made meals and organic meats - many of them made and delivered with love from our church family...
Once weekly fresh meals - prepared for Eric and the children and also a special meal according to my strict diet restrictions - thanks to all of those who continue to take on the challenge of creating something delicious out of very limited ingredients!
 My special 'bread' - a time and energy consuming project to bake - made with love as needed by loving friends and family. 
 Dressing changes - once a week dedication from my favourite local nurse - volunteer basis to save me from having to travel to Vineland weekly - thanks Rachel!
Weekly house cleaning and help with household chores from a dedicated crew who insist on coming whether I insist I can 'probably manage' or not! It is a struggle to keep up and so nice to be blessed with the peace of a clean and organized home.  Thank-you!!!
Our dear children - so well taken care of that we are able to focus on treatment while remaining together as much as possible - our many thanks
Ongoing financial assistance to make treatment possible so that we are not burdened with the extremely high costs of treatment - thank-you dear family, friends and church community! 

 All of this is proof that we are indeed very blessed by God.  Tears come to my eyes as I consider how well things have fallen into place - how well we are cared for and supported.  In addition to all of this we are blessed with words of encouragement, cards, flowers, gifts and above all prayers.

We prayed so long for God to open the eyes of the doctors/specialists so that they would be able to figure out what was wrong with my body.  We were willing to accept that answers and the possibility of healing was not in His plan for our family but in His perfect timing, which we do not understand, He has done that, and more.  Thank-you most of all to our Father - who instituted the body of the church also as a means to help us be a hand and foot to one another.

"He makes the whole body fit together perfectly. As each part does its own special work, it helps the other parts grow, so that the whole body is healthy and growing and full of love" Eph 4:16 NLT

Saturday, January 10, 2015

Horrid Herxheimer

What is a Herxheimer's Reaction?
Die off or herx reactions are your body's reaction to bacterial die off.  They can be the same symptoms you usually have but more intense.  They can last up to a couple of weeks.  You may have new symptoms that you hae never had such as sleep disturbances, extreme anxiety or new sensations such as numbness, tremors or tingling.  Usually the first herx is worse and over time as the symptoms of lyme decrease so does the intensity of the herx.  Many times it is also worse with starting new medications.

I experienced an alarming period of over two weeks recently (hence the no blogging for the past month...) in which I had new and worsening neurological symptoms.  These symptoms consisted of things such as severe trouble concentrating, inability to process thoughts, confusion, loss of memory for things such as which side of the road to drive on or leaving a task half done without realizing.  I also experienced some scary panic symptoms when I wasn't able to sort out my thoughts or feelings.  I felt trapped in my brain and it would often lead to me yelling (such an embarrassing admission - I acutely felt my sinfulness during this period in particular and felt out of control of my mind and spirit).  I was unable to read, focus on driving and had to pay very close attention when I was being spoken to or I would space out and couldn't figure out how to respond to conversation.  The level of concentration needed for short conversations left me exhausted and with severe heaviness/fog/mild headache in my brain.
 The children love to help with the saline flush after my antibiotics :)

The only way to overcome and release the tension in my brain at these times (which were frequent during the day) was to watch a segment of a show on the computer or listen to something soothing ie. music or a sermon. I could feel the tension leave as my brain re-directed on something that I didn't have to think about and I would be able to carry on for a little while again.  Noise or two things demanding my attention at once caused me to overload which created stress and anxiety that I was unable to process and work through on my own.  I was also emotionally unstable and drove myself and Eric crazy with the amount of bawling I would do at random times.  I became obsessive with moving to or visiting Australia and would frequently plan in my mind how to make it work even though I knew it would be impossible this year.  I felt extremely out of control mentally.  For over 3 years I have struggled with being out of control of my physical body but for me this was worse....

I needed frequent naps and fell into a worse pattern than usual of insomnia. I would get dizzy and lightheaded when I attempted to continue with my daily walks around the neighborhood.  We were forced to shut down our home somewhat - I could no longer handle visitors or any social events and the kids were again taken care of by J&Y Deboer (without their support and willingness to take our kids at a moments notice I know we would be unable to cope with taking care of our children during this grueling treatment).

It took us about a week to realize that this was a herxheimer reaction.  We were confused and alarmed by the intensity of the worsening of my neurological symptoms.  Before treatment I was not aware of too many neurological symptoms besides memory loss and dizzyness.

Flushing my body while enjoying the sun on our deck...

What to do during a herx?
Once we figured out that I had a great load of toxins trapped in my body - we began to concentrate on ways to detox.  I added to my list of daily IV medicaitons a lactated ringer flush, I drank as much freshly squeezed lemon water as I could take in, went in the sauna daily to sweat it out and took hot epsom salt baths.  At this time I was greatly helped by my good friend Amanda who took on the role of reading up on the causes and solutions to my increasingly severe symptoms,  This was ever so helpful at a time when I had no energy or cognitive ability to study or process any information.

Friends caroling on our doorstep - a sure way to induce bawling!

After just over two weeks the severe symptoms began easing and I am now dealing with much lower grade neurological difficulties again.  Thank the Lord - that was a very scary time for our family!  Thank-you all for your ongoing prayers and support also - especially during the severe herx it was comforting to know that others were carrying me when I had no strength or ability myself.  For awhile there I thought I had lost my faith and affection for the Lord and it was comforting to hold on to the promises of the covenant - we are in good hands and loved even when we do not love in return.
"What is your only comfort in life and death? That I belong, both in body and soul, in life and death to my faithful Saviour Jesus Christ...." - Heidelberg Catechism LD 1

God bless you all xox
Flowers for my birthday - I was 27 when the severe symptoms began - this year I celebrated 31 years.  I spent a quiet day while continuing my treatment routine at home and reflected with thankfulness on the many blessing that remain.  We look forward with renewed hope to the year ahead of treatments for this late stage lyme and Lord willing a cure - I am well on my way!