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!

3 comments:

  1. Praying for strength! I don't know you personally, but as a fellow Christian, I make sure to remember you in my prayers! Upon reading your blog I just had this sudden thought.... have you heard of "Toxic Binding Powder"? I recently watched a documentary on one family who also experienced Lyme disease, and this Binding agent help her greatly in her recovery. Here is the website if you are interested: http://www.justinandchrista.ca/. The video is quite graphic in detail, but if you go to the FAQ link, it gives you more information on their road to recovery and this Toxic binding agent.

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    Replies
    1. Thanks Lydia,
      I forgot to mention that I am taking activated charcoal for detox as well - it works similarly to toxic binding powder. I wasn't aware of its availability and use until I was well over a week into the herx. If it doesn't help to detox me fast enough I will also look into the powder as another option. I really appreciate the support, also in the form of your prayers as well.
      God bless...
      Roze

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  2. Christina bensonMarch 8, 2017 at 7:17 AM

    I just read your story and you've got me balling...I am experiencing extreme mental issues just after 4 days of Burbur-Pinella and haven't even started the AL yet. Im a non specific celiac on top of major allergies to over 85% of all food, some water with clorine and I can't take ANY chemicals. Now after a year, 20K in bills ..we still don't know if I have lyme, mold in body from a previous home and work or if I have heavy metals. I have experience almost every symptom except I want to go to Scotland and Ireland...Australia can wait..LOL. but seriously....I thought I was the only one with feelings and emotional die off...evendors my husband Thomas does not know how to help me anymore...Than you for being so honest about all this....prayer and time will heal all... even if it feels like we are temporarily insane. My prayers go out to you...God bless

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