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!

Increasing in Strength

With great thankfulness I am able to report that I am increasing in physical strength!  I have been working on physiotherapy and spending time on my recumbent bike every day for the past 7 weeks and I am noticing a huge improvement in my physical stability and strength.  In the past these exercises have induced further exhaustion and fatigue rather than improving my abilities so I am cautiously excited as I begin to notice my endurance increase weekly.  I find I am able to push my body where formerly I could not, and enjoy the challenge of again working the muscles that have wasted - this time my determination and diligence is producing results!

I have also been able to walk with much more stability than before and can keep up a fairly good pace as I do a daily walk around the neighbourhood!

The children are enjoying doing more physical activities and are so excited to see the results of the many months of treatment!  We are enjoying doing some more 'normal' activities together.  I got a little ahead of my abilities when I kicked the soccer ball around with Damon and strained my hip and knee joints but with rest and care I am fine again and am reminded not to let my heart coax my brain into allowing me to do something before my body is physically able....

Unfortunately,  I have also been experiencing an increase in muscle cramping on the left of my spine, from my neck down.  My left side has been weaker over the past few years and seems to be flaring up again - including my MCP (thumb) joint, requiring bracing from time to time.  I need to schedule rests during the day and use heat packs to relieve the rock-hard knots that are forming in my thigh, back and neck muscles.  Today the muscle twitching returned, this time for most of the day in my left abdomen - wearing my body down with its incessant flickering.

After two improved weeks and a welcome relief from Bartonella Brain, by this afternoon the heavy 'brick' brain fog has returned, and with it the crazy feeling of being so very easily overwhelmed with thoughts, people, chatter, children, noise.  An acquaintance with Lyme disease has likened the mental shut-down and overload that follows to something like the way one with autism would feel - which is why I seek quiet and peace to ease the pressure and stress... I am hoping and praying the pressure in my brain and the increase in physical pain and exhaustion are caused by herxheimer die-off from treatment or the remaining Lyme continuing its cycle through my body.  These are Lyme symptoms so I am trusting that in continuing my treatment regime they will not remain for long.  We have just begun to integrate our two youngest children back into home full-time and it would be very disappointing to have to give them up again.

Jer 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."

Footprints in the Sand

My niece reminded me of this poem the other day.

It has had special meaning for me over the years.

It is good to be reminded of the Lord's love and the special attention He pays to each and every detail of our lives....

Luke 12:7 "Indeed, the very hairs of your head are all numbered. Don't be afraid; you are worth more than many sparrows."

Footprints

One night a man had a dream.
He dreamed he was walking along the beach with the Lord.
Across the sky flashed scenes from his life.
For each scene, he noticed two sets of footprints in the sand:
one belonging to him, and the other to the Lord.

When the last scene of his life flashed before him,
he looked back at the footprints in the sand.
He noticed that many times along the path of his life
there was only one set of footprints.
He also noticed that it happened at the
very lowest and saddest times in his life.

This really bothered him and he questioned the Lord about it.
"Lord, You said that once I decided to follow You,
You'd walk with me all the way.
But I have noticed that during the most troublesome
times in my life, there is only one set of footprints.
I don't understand why when I needed You most
You would leave me."

The Lord replied, "My son, My precious child,
I love you and would never leave you.
During your times of trial and suffering,
when you see only one set of footprints,
it was then that I carried you."

-- Author Unknown

                                        ....enjoying a summer bbq with friends

An Appointment in Plattsburgh

It has been a week now since my appointment with Dr McShane in Plattsburgh, NY.  The trip was exhausting for me, both physically and mentally - although physically I noticed quite a significant improvement from how I managed the journey six weeks prior!  When I get discouraged because of slow progress, it is helpful to remember a point in the past and notice the ways I have improved since then....  On the journey in September  2014 I spent almost the entire trip lying down on the back seat of the car, this trip I was able to sit/recline - although with increasing discomfort because of bloating and muscle cramping - even for the additional 6 hours it took us to get home because of a snowstorm! This is significant indicator of my increased strength.

The roads became slippery and traffic stopped to a crawl from about an hour past Toronto on-wards...We had been watching the weather carefully because of the massive snowstorms experienced in Buffalo during the days that we were travelling.  We were praying for a safe journey and so thankful for the blessing of arriving at home without incident.  

Ps 121:8 "The LORD will watch over your coming and going both now and forevermore."

I traveled with Jeanne from the Lyme Clinic in Hamilton and enjoyed spending time getting to know her better.  Jeanne 55, also suffers from Lyme disease and is two years into treatment, about 90% recovered....Without the support of family or a church community to help with physical and financial needs, Jeanne struggles with the effects of Lyme on her health and it has devastated her financially as well as strained relationships with those close to her.  During her appointment with McShane, she learned that she has to go back on treatment (she has been off of antibiotics for two months) as some of her symptoms are flaring up.  Due to the lack of financial support or recognition of this disease and treatment in Canada, this news caused some stress for Jeanne.  Jeanne is one of many in Ontario suffering because of the financial burden and physical debilitation that Lyme disease causes.  The strain and hardship of the lack of financial and physical support, alongside the symptoms of the disease itself create terribly difficult situations for those suffering with Lyme Disease in Ontario.  I am blessed beyond measure - to belong to such a godly, giving Christian community where my needs and the needs of my family are so abundantly taken care of! I am obviously in no position to help out in my current state but Lord willing, in the future I would like to find a way to pass on the love and charity that I have received, as well as the hope and comfort of the gospel to those who are affected by Lyme in our local area.....It is so hard to watch people suffer without the support they need.

Phil 4:19 "And my God will meet all your needs according to the riches of his glory in Christ Jesus."

For the three days the journey took, I was about half an hour with the doctor and all I remembered was that she is happy with my progress.... I myself have noticed an increase in strength and stability and was able to give the doctor a good report.  Because I am beginning to improve so well, we will not be making any changes to my medication or supplement routines, with the exception of adding some digestive support and sleep aides.  Due to exhaustion, lyme brain and lack of co-ordinating my file on the part of the nurse, I left the appointment in a bit of a daze and unsatisfied, not knowing what just went on and with many unanswered questions that I had so carefully prepared.  I was not able to take in much at the time of the appointment but I have access to an online patient portal so I am able to have contact with the doctor that way if I have any concerns.  It is State law that I must have an appointment in person every six weeks because I have a picc line so at least we accomplished that.... 

 My stomach did not do well with hotel food - I am not able to digest food without the assistance of lots of digestive enzymes and despite taking enzymes like they were candy, I experienced increased inflammation and bloating.  Culprits? Salad (which is harder to digest), more nuts than usual as well as non-organic or gluten free vegetables, meats and seasonings.  A reminder to be very diligent with my diet!  Cheating in any way causes too much extra stress on my body.... Unavoidable on a journey such as this but it did take a number of days for my digestive system to re-stabilize after the trip.