Wednesday, 8 January 2014

A (Not So) Brief History?

So before I post anything else, I thought it would be a good idea to give everyone a bit of a background on me, my life, and my health. I know all of us have our own individual stories and experiences when it comes to Lyme and chronic illness in general. It's funny though, when i read other people's stories, no matter how different their journey has been from mine, I can usually always relate and find similarities between theirs in my own. We're all going through this crazy journey individually and yet somehow we're all connected, and I find comfort in that.

So, where to begin?

Basically until I was 13 years old I lived a completely normal, and happy life. I went to school, was in girl guides, did swimming lessons and attended dance classes, was forced to go through piano lessons but eventually got out of them by throwing tantrums, and most of all, I was healthy. Health was something that never even crossed my mind, because it was just something i had always had. To give an idea of how "healthy" i was, i was only on antibiotics once the first 15 years of my life (for a minor ear infection), and one year I even won a "perfect attendance" award for never missing a day of class that year.

Then summer of 2003 I went on a 2 week vacation to New Brunswick with my family. During that time i developed a weird lacey rash all over my arms and legs. It got really itchy, and i felt generally unwell for the 2 weeks it lasted. I went to a few different doctors and even the ER as i was pretty uncomfortable, but no one could figure out what it was. Eventually, it went away on it's own, but we never really figured out the cause.

Soon though, i started to notice something was off with my health. I had developed a few random symptoms, the main ones being nausea and some dizziness/weakness. In the fall of 2003, going into grade 8 i found myself feeling sicker more often than usual. I had morning gym classes a few days a week and found myself getting dizzy and weak during and after class. Then i started just feeling weak and nauseous often. I started missing a couple days of school here and there. Still it wasn't enough for us to think much of it.

Then one day in February of 2004 i woke up in the middle of the night with horrible nausea and felt like i was about to pass out. I thought maybe i had the stomach flu. The nausea lasted a week, and then 2 weeks and then 2 months. I also had other symptoms. Dizziness, weakness, fatigue, some stomach pain, headaches, blacking out. I went through dozens of tests- x rays, blood tests, urine samples, ultrasounds, barium swallows, ECGs EKGs, endoscopies. And nothing was coming up. The doctors couldn't figure out what was wrong. The doctors told my parents and I that I was suffering from social anxiety, and I was afraid to go back to school. I was so upset. There was nothing I wanted more than to go back to school! I had always enjoyed school. I missed my classes. I missed my friends. I missed my LIFE!

I went through more tests and more false diagnosis' over the next year or so, and finally at the end of 2005 I had a tilt table test and was diagnosed with POTS, Postural Orthostatic Tachycardia Syndrome, a form of Dysautonomia. Although I was happy to have a name for what i was going through, I eventually learned that Dysautonomia is normally a secondary condition, meaning there is something that brings it on in the first place. One of these possibilities is Lyme Disease. My POTS specialist tested me for Lyme, but he wasn't an expert, and just did the standard Elisa test. It came back negative. We never thought anything of it again. We continued trying to treat the symptoms of my POTS with different medications without much success.

High school as a struggle. I tried to go to school full time at first. I wanted so badly to be able to sit through classes but by lunch i was always exhausted and had to come home to lie down. I missed too much school so i was forced to drop out of "regular" high school. I ended up getting a home tutor and registered for online courses. I went into school at lunch time to see my friends. I was grateful I was well enough to at least spend lunch hour with them. But by the end of the hour the weakness and nausea would set in and i'd be forced to go home to rest.

By the time it was time to start college I had really began to develop a passion for health and nutrition. I signed up for an online program that allowed me to take courses from home to become a Registered Holistic Nutritionist. To this day this is still such a passion of mine.

In 2012 though I was seeing small signs that my health was deteriorating more. I was finding myself feeling anxious often, which was never a symptom of mine. I was also noticing i was having "flares" of symptoms more often where I would be stuck in bed with the nausea and weakness. I was scared.  That is when i really started looking into the possibility  Late Stage Lyme Disease. The more I read about it the more I felt like it could be the missing puzzle piece for me. I was finally tested through Igenex Lab in 2012 and although my Western Blot test came back negative overall, my CD 57 was extremely low (31). Ny ND explained to my that because I was sick for so long, my immune system was shot. It was barely producing the antibodies anymore because it had all but given up. This is why she did the CD 57 test as well. This test is used because chronic lyme infection is the only known cause of a low CD 57. A normal result is between 100 and 200. Anything under 60 is indicative of chronic lyme. Mine score was 31. Between this, my symptoms and my health history my doctor diagnosed me with Late Stage Lyme Disease.

The diagnosis was bitter sweet for me. One one hand I was so grateful to know what had been causing all of my health problems for the past 8 years. But on the other hand I was scared as hell. Scared that i had this dangerous, potentially life threatening bacteria coursing through my blood and body. Scared that I now needed to go through treatment that, like chemo for a cancer patient, would make me feel worse long before it made me feel better. And scared that i wouldn't be able to handle the emotional and physical roller coaster that was ahead of me.

I spent the better part of 2012 researching. Lots and lots of researching. I quickly found that those that had been sick for years like me, seemed to benefit the most from natural antibiotics and healing modalities. Antibiotics did work for some, too. But it seemed more successful in those that had been sick 1-2 years or less. I decided that I needed to at least start with the natural route. My body was just too weak and too depleted to be able to take on strong antibiotics anyway at this point. I knew I needed to build it back up if that was ever going to be a part of my treatment protocol.

Unfortunately, in January of 2013, my health took a turn for the worse. I'm not really sure what the cause of this was, as at the time I hadn't made any huge changes. Maybe i was stress, or maybe it was just all the years of illness without treatment catching up with me, but all my symptoms got worse, and I seemed to develop a new one: horrible abdominal pain.

I've spent the last year in treatment for lyme disease as well as several co-infections including Babesia, Bartonella, Mycoplasma, and chronic Epstein Barr. I'm lucky enough to have support from my parents who have made several trips to the US with me, to see different doctors and practitioners to try to help me get my life back piece by piece. I have made some improvements. But so far they have been small. The 2 main things I have noticed are desperately needed weight gain, as well as a decrease in the horrible stomach pain. I still suffer from horrible nausea and weakness daily, some days worse than others, but unfortunately I didn't had any "good" days in 2013.

This year, I am determined to get my health back. I can honestly say 2013 was the worst year of my life. No one should have to suffer so intensely. And I'm glad that most will never know that kind of pain. But there is also a lot to be learned from suffering. And that is what I have to focus on during this journey.

I made this blog to document my life with Lyme and all the little aspects of my healing journey, I have posted Youtube videos in relation to my health for years, but at times i don't necessarily feel well enough to sit and talk in front of the camera. I still plan to make videos, but thought i would start a blog too, for myself and for anyone else who may find it helpful! My one wish for 2014 is that all of us suffering find our own paths to complete health and healing <3

-Shannon

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