About Me

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Hey Everyone, welcome to my blog. Where the goal is to share how my life has been, and continues to be, impacted as a result of chronic Lyme disease.

Tuesday, May 1, 2018

My Story Part 1


It’s hard to know where to begin.  
I can’t tell you when Lyme entered my life, because I don’t remember being bitten.  The more we look back over my health history, the more we are led to believe it began at a very early age.  Lyme bacteria is very good at hiding and laying dormant for long periods of time.  At the age of 5 I began to have back problems which led to a diagnosis of scoliosis at age 6. Since then I’ve kept up (on and off) with physio and chiropractic care.  The degree of my back was not very serious, so it always surprised the doctors how much it affected me (probably Lyme already).  In early 2014 I had very serious pain which meant being bedridden for about a month. Those were very dark days for me.  We found a specialist an hour out of Ottawa. He did all kinds of work on my back, and he also regularly adjusted my skull (the pieces would get jammed, and need to be seperated). Sometimes I would have bruises on my forehead from things moving around up there.
Besides that I did struggle with lots of headaches and got ear and throat infections fairly often....But these didn’t seem like unusual problems, so life went on.

On May 27th, 2016, I suffered my second concussion when a heavy metal shelf came loose and banged my head at work. Initially I didn’t black out or vomit, but I did have a bad headache.  The next day I went to work thinking it was just a headache.  I became very sick while working, so on the way home I went to a walk in clinic. They right away diagnosed me with a concussion, and wrote me a note to take a few days off work.  And I honestly thought that would be enough (since I had recovered very quick from my concussion a couple years before). After the week was up I tried go back, but each time I tried I got so sick (including blacking out on multiple occasions).  Then I was diagnosed with post concussion syndrome. The next few months were a bit of a blur. I managed to counsel at a summer camp for 1 week that summer.  At the camp I was bitten by another bug which I thought was a spider (but it could have been another tick). I immediately started experiencing severe neck pain. When I got home I continued getting sicker and sicker. I kept trying to go back to work, but got to the point where I was daily calling my family to pick me up early.  I clearly remember the times where my manager (at homesense) would take a pillow off the sales floor and put it under his desk so I had a quiet and dark place away from my co-workers and customers....and I would wait there until my family would pick me up.  Finally, I stopped going to work. But I hadn’t officially quit yet.  I would call in weekly with updates.  But eventually as time went on I was seeing no improvement at all and got tired of giving my managers the same phone call every week telling them I couldn’t go in. So I quit that job.  At the same time I also stepped down from my position with a local pro life organization. 

Between May 2016-November 2017 I cant even count how many times I had to rush in to the hospital. I was experiencing so many horrifying symptoms.  Serious head pressure, heart attack-like symptoms, breathing problems, complications of my mental illness, and many other things.  No doctors could figure out what was wrong with me.  Finally we decided to go back to the specialist outside of Ottawa.  He had been following my health for years, and so when he saw that I wasn’t improving he began to suspect Lyme.  Around that time I also started a new treatment for my concussion, which included physio, chiropractor, acupuncture, dry needling, and more.  But months went by and I still wasn’t improving at all.  Then I was symptomatic ally diagnosed with Lyme disease. However, the doctor who diagnosed it wasn’t ready to risk his practice (for treating Lyme), so he sent me to meet a naturopathic doctor just outside Toronto. This second man was originally a medical doctor, but after being bullied and brought to court he decided to give up his license o he could continue treating Lyme.  I met with him several times, and he did further testing, but right before I actually started my treatment he backed out of my case.  I was too complex.  I think especially my mental illness concerned him.  He called up a colleague in Ottawa who saw me within a week (despite her long waiting list).  She did more blood work which confirmed Lyme and multiple co-infections,  So I started a variety of treatments with her. Including, IV vitamins (multiple days a week), IV and oral antibiotics, new diets, and more.  This continued for six months.  Part way through (after a lot of fighting) I finally got a PICC line placed to spare my veins from so many pokes.  

From the beginning of October, until the end of November I had my longest hospitalization in the psych ward (due to a severe mental breakdown).  During my hospital stay the staff wouldn’t give me antibiotics, and so the PICC line had to come out. (I’ll talk about my hospitaL stays in a further post).

Once I got home I went through a very dark time. I didn’t know what treatment was left or if doctors even cared.

In January 2018 a friend (Roze) told us about an alternative treatment in Edmonton. So that’s what I did next.

Now I’m home and keeping up with supplements, detox, medication, and appointments with my psychiatrist. 

I will leave it at that and share more in the upcoming weeks.
Sent from my iPhone

4 comments:

  1. Thanks for sharing your story Sjanie! You are often in our thoughts and prayers. Even our kids pray for you by name. Keep fighting and know you are loved!!!

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  2. Thanks for sharing Sjanie. I think of you and pray for you regularly. Know that you are never alone. Trusting God for healing and restoration for you,

    Lynette

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  3. Thankful you have the cognitive ability to share your story ~ that alone is very healing.
    And thankful you have a host of supporters in this difficult journey.
    May the Lord use this trial to refine and strengthen your faith and trust in Him. If it's His will may He restore your health. If not, may He give patience.

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  4. So glad you can share this information about this agonizing and debilitating disease. Wishing you the Lord's nearness and healing. We will visit next week.

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