|Taken from 'homebase', where I do most of my writing|
I am an 18-year-old high-school grad, who is trying to change a part of the world, while putting herself back together again. I was diagnosed with Lyme disease over 2.5 years ago, but had been suffering for quite a while before then. My symptoms came on so gradually that, at first, I barely noticed the changes. Very quickly they became a part of daily life. I had headaches, nausea, and joint pain for some time before I really started going downhill. In 2006, I was diagnosed with ‘exercise-induced asthma’, which we now was early Lyme. This is a common misdiagnosis for Lyme suffers, particularly in children. In the fall my grade 10 year, in 2007, I began to slowly develop a host of other symptoms: an increase in headaches, nausea, and joint pain, dizziness, concentration issues, memory problems, coordination problems, muscle aches, and general confusion to name a few. These problem only grew worse and worse, and grew into quite a long list over the next few months; heart palpitations, ‘air hunger’, strange heat and cold sensations, rib soreness, memory problems, difficulty walking, co-ordination & balance issues, stabbing pain in the feet, swollen joints, shaking, and more besides.
I was tested for numerous disease and offered multiple alternate diagnosis or suggestions of one by the dozen or so specialist I saw over those years; chronic fatigue, asthma, pneumonia/bronchitis, maybe eating disorder or perhaps Arthritis/Lupus, environmental sensitivities, growing pains etc. All of these hugely missed the mark. With well over two-thirds of the classic symptoms of Lyme disease, it is astounding that none of these doctors picked up on the most simple diagnosis. My mum even took in a Lyme disease checklist to each doctors appointment, although it was only glanced at by the physician, before being handed back. When you hear hoofbeats, think horses not zebras. This expression would have more merit in this situation if doctors weren’t incorrectly informed about how many people are affected with Lyme disease, and other tick-borne illnesses. They are constantly told that it is ‘rare’ in Canada, which doesn’t exactly encourage them to dig deeper.
Even as I became sicker and sicker, not able to walk or remember things, and in excruciating pain, I was still being denied care in Canada. The doctors here had all but given up, and I was supposed to get on with my life and ‘start living with my disability’. My family physician actually threw up his hands in frustrating and said, “Well, all the tests come back negative and I’m not sure there’s anything else I can do…”. In a last-ditch effort, I was taken to see doctors, who would end up turning my life around, in Seattle, San Francisco, and finally Connecticut, where we lived for 10 months. There are very few Lyme-literate doctors (LLD’s) in North America, but I was very lucky to end up seeing several of them. I have no doubt in saying they saved my life, and have started to put me back on the path to health; I am ever grateful for their care and support. I ended having two co-infections, Babesia and Bartonella, which usually go hand-in-hand with Lyme disease, as they are all transmittable by ticks. I find that the symptoms associated with the co-infections cause me much more trouble than the ‘Lyme’ part. If people haven’t heard of Lyme disease, though, they are really going to be scratching their heads when I mention ‘Babesia’ and ‘Bartonella’, less well known but just as serious as the big ‘L’.
The Journey back to health is rather like a Lord of the Rings-esque quest: the path is twisted and rocky, sometimes you get lost or there are steep cliffs on either side, and Sauron is yelling loudly and making mountains of misery and pain fall on top of you (well…just checking to see you if you were still paying attention!) and frankly, nobody’s sure whats going on half the time. Around every bend, after every victory, there are setback and relapses.
Wildly and unexpectedly, my life veered off the course I had planned on. I could see myself losing the life I enjoyed so much. I enjoyed hiking in East Sooke, kayaking, running with my dog, the swings at the park, hanging out downtown with my friends, lying on the beach, playing the French Horn and piano. I loved learning and my high-school, my friends, and the seriously awesome classes I took there. I had picked my junior years’ IB classes that I planned to start in the fall of ’08, and was stoked!! I was highly anticipating taking IB Music, biology, literature, Spanish and history.
Everything about Lyme disease is highly controversial in Canada. It is nearly impossible to get a Canadian diagnosis of Lyme disease, because the criteria is so specific: a rash, and two blood tests. Forget about the symptoms…who needs physical evidence? Doesn’t this seem a little unusual to you? Most physicians wrongly assume that 80% of people bit by ticks will get a ‘bulls-eye’ rash, when that number is actually much lower than 45%. I did not have the rash, and thus my suggestion of having Lyme was instantly discounted. The symptoms do not seem to be of much importance to most Canadian doctors. The ironic expression “Listen to the patient, they are trying to tell you the diagnosis’ comes to mind here. The Lyme disease testing protocol is a two step process; the ELISA and the Western Blot tests. After asking ever specialist we visited to give me an ELISA blood test, I finally took the test, only to find my result negative. The test is known to be deeply flawed for well over 2 decades, and also throws up false positive and negative results, causing more dispute. The test’s criteria for a ‘positive’ result is so restrictive, that it is considered to be a lottery jackpot win if you turn up a positive. However, if you do happen to win the lottery, you are given a second blood test; the Western Blot. Once getting a pass on both the tests (coupled with the rash, and other symptoms) you are considered by the health agencies to have Lyme disease. It’s no wonder that there are only 4-6 cases per year in British Columbia! Thankfully, as the amount of awareness grows the amount of cases properly diagnosed and reported goes up.
I am still quite ill, but my doctors are hopefully that I will make a full recovery in a few years. I still have another few years of IV meds and even longer of oral antibiotics to look forward too, but I suppose it is a small price to pay for a working body! Everyone says that you have nothing without your health, and its definitely true. That doesn’t mean I have been sitting around for the last 3 years doing nothing. I mean, I have been sitting all that time, but never without at least a book in my hands! Everything is very exhausting for me, so whatever I do, I do for just a bit of time, then rest. I love hanging out with my amazing (and super supportive <3) friends doing normal stuff; talking, listening to music, baking, going to a park or mall, talking, laughing etc. I spend a lot of time doing various arts and crafts projects, especially knitting and sewing, drawing/painting, and doing massive collages. Piano is my greatest passion though, and I spend as much time as I can playing my beloved Debussy, Schuman, Schubert, Beethoven and Ravel. I’m sort of working on my grade 9/10 Toronto Conservatory piano, but I play for the pure love of it. My fingers can still fly over the keys, perhaps not as agile or speedy as they once were, but music still flows from my fingertips. I don’t know what I’d do if I didn’t have that. I’ve also been trying to raise awareness about Lyme disease, which is getting easier these days, as more and more people have heard about Lyme.
I look forward to getting back to a ‘normal’ life. I wish other ‘Lymies’ well on their journey, and would encourage them, if they have time, to start a blog of their own. It’s really helpful to be able to share my thoughts and feelings with others, and it is a wonderful way to connect with others who are in your same situation.
Thank for stopping by my blog. Hopefully learning something about Lyme disease would keep you or your loved ones from getting it. ~
If you have any questions, or would just like to share your response/journey with Lyme, please feel free to contact me at firstname.lastname@example.org.