About

Hi. I have late stage Lyme disease. When I was 10 or 11 I wandered into the forest with my cousins, in Selkirk, Manitoba. I cleared the way for them, every leaf and branch tumbling onto my skin, my sweater, my shoes. My cousins emerged from the forest with a sense of adventure and clean hair and skin. I was not so fortunate. I had been home for several hours when I scratched the backside of my ear to find a strange sensation. My mother and I would then see that in my ears and around my ears were at least seven or eight ticks. After much screaming, each one was pulled (and not properly) from the inside of my lobes and around it. I have a clear memory of those little things scrambling over the family room table, running for their horrible little lives. We caught them in ziplock bags and flushed them down the toilet. And that was that.

I began to get progressively more sick over the years, starting with stomach aches, knee pain and headaches. In school I was the sick girl and or the crazy girl, for that matter. If I was American, it would have been hundreds of dollars spent on me having various tests done and seeing various specialists. Still, these appointments amounted to very little, some psychological diagnoses and write-offs as a hypochondriac. I was tired all the time, napping at odd hours, constantly sick with some sort of cold and prone to panic attacks. So of course, I was just depressed and a little bit attention seeking, yes? Maybe I was depressed, but that wasn’t the only issue and it sure wasn’t the means.

I went to university in Ontario and still continued my trek for a diagnosis. When I was in my second year, I developed extreme bouts of arthritis which no specialist could explain. I had a rheumatologist in both Manitoba and Ontario and neither had valid explanations for my symptoms. Lupus, reactive arthritis and anything done by testing was overruled. All my tests were negative, yet the evidence was there. The medical system is bent on having serological evidence, which is ridiculous considering blood work is usually a small part of a diagnosis and is relative only to particular diseases. They could not always see visible swelling on joints, largely because I did not have any. I did have days where there was obvious redness, which I would document or simply show the doctor if the circumstances allowed me to do so. It became so bad that some days I could not walk, or open doors. So, enter first diagnosis of unspecific arthritis. By third year university, I was beginning to lose focus with my train of thought. Ironically, at the end of the semester which “ended” my third year, I had thought whatever was wrong with me was getting better.

I was taking medication to keep me focused  my “ADD” (next diagnosis) and awake for my numerous sleeping problems. Alongside Periodic Limb Movements, I had sleeping issues similar to Narcolepsy in that anywhere at anytime I was ready to sleep and had to struggle to stay awake. The medication worked, for a little bit, and I let myself take summer courses. It was around this time that a whole slew of new symptoms would develop, my health getting so bad I would have to drop out my courses half way through the semester. As the year had progressed, I had developed serious issues of memory loss. I would go places and wonder, why am I here, how did I get here? Soon I had trouble comprehending my readings, or in general, any sort of reading material. My beloved novels made no sense to me.

I began to mix up words, interconnecting words together that did not belong together, or misplace them in a sentence. I would replace similar sounding words in a sentence, and misspell or misunderstand the most basic of words, something I had not done since I was probably about seven years old. My muscles would twitch regularly in addition to aching, moving up and and down on their own. I developed ptosis, or a drooping eyelid (due to nerve issues) and began to have moments of blurred vision, along with strange floaters in my left eye. Peripheral neuropathy in my toes and hands; some days I could not feel my toes or my fingers. I would lose feeling in my entire arm, or on the other hand, feel too much and have incredible shooting pains in my ligaments. At one point, I was sent to the hospital from the doctor’s office as I was having similar symptoms of a stroke- overbearing headache, slurring of the words, pain. Ah, the headaches. The headaches, the dizzy, the lightheadedness. All of this, of course was just a fraction of my everyday, and just some of my symptoms. ( By now I had a slew of diagnoses; chronic fatigue syndrome, fibromyalgia, arthritis, severe allergies, asthma, depression, panic attacks, add, irritable bowel syndrome, sinus issues, periodic limb movements, ulcers…)

Oddly enough as it is, it took a GI surgeon to bring up Lyme disease. After surveying just some of my symptoms and my background, he began to ask me odd questions about camping in Manitoba and being in the forest. He then asked me if I had ever been bitten by ticks, prompting me to rehash a memory I had long forgotten. Lyme disease, he told me, was a chronic, systemic disease. In laymen terms,  the infection makes it’s way around your body, starting with the immune system and eventually making its way to your nervous system. (And everything in between, of course.) Looking at my symptoms, my experience and my various diagnoses, he determined that it was most probable I had one systemic disease rather than many different ones. After this encounter, he suggested I see someone that can specialize in Lyme disease. My family doctor, thankfully, listened and via Canlyme’s recommendations, he sent a referall to pretty much the only Lyme specialist in Canada. He happened to be in Toronto. It took ten plus years, and many “failed” tests but I eventually had a diagnosis. While my ELISA (notoriously negative, and especially more so in late stage Lyme) was negative, my symptoms made case for a clinical diagnosis- 50ish out of the 70 set by CanLyme. My MRI showed up clean, meaning I simply did not have permanent damage to the brain. Which was good, of course, because that can be hard to reverse. Canada, of course, always wants serology reports, and I’m not sure if I should say thankfully, but Rocky Mountain Spotted fever antigens were present in my blood (0.65 or something of the sort) meaning I have some sort of coinfection.

I then started my treatment of doxycyline, leading to many days hunched over the toilet at home..oh yes, had to take a semester off and fly home as I could not function. I was flying between provinces every few weeks to see my LLMD. And here I am now. Many days of herxing and vacillating symptoms, I’m still struggling. I still add words where they do not belong, get lost and have aching bones. It’s all still there, just…not as much, I’m back in school and unsure of whether or not I should be. I’m not better, but I’m working on it. I’ll never be 100%, I know, but I’m still trying to keep up with everyone else. But there it is, and here it begins, my journey to live a normal life…as much as possible, anyways. Some days I’m jaded, some days I’m optimistic, and most a mix in between. It’s a work in progress.

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6 responses to “About

  1. Ashley van Tol

    Hi Deena,

    I want to post a link to your learn page on Lymenaide’s facebook page. Wanted to check that it’s cool with you first.
    http://www.facebook.com/pages/Lymenaide/137229171760?ref=ts

  2. Hi Deena,

    Your blog is excellent. I hope you have some update posts, soon! You have an amazing voice.

  3. hey, deena,

    you commented on my blog quite a while ago. it is really nice to know there is some semblance of community and someone that knows what this is like, even though i would never wish this on my worst enemy. if you’d ever want to talk, please shoot me an email…sipedisich at gmail dot com. i could use a friendly ear but i also understand if your energy is too shot to keep up correspondence. i hope you’re doing okay.
    best,
    scout

  4. Mike

    There is a Lyme petition at the following address:
    https://petitions.whitehouse.gov/petition/reform-infectious-disease-society-america-treatment-guidelines-lyme-disease/Pj9jG0pX

    The petition will only be up until 2/10/13, and we need 25,000 signatures for the White House to review and respond.

    This is the best chance for raising Lyme awareness I have seen, so please spread the word!

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