Friday, January 29, 2016

The Whole Story..

Update and Overall Story of what the heck is going on with me these days: Over the past month or so we have been looking into the possibility of Lyme Disease. It seems to be the only thing that actually covers all of my symptoms and unfortunately, 5 years ago I was bit by a tick and didn't notice it for a few days. I did end up very sick afterwards but because I didn't have the bulls-eye rash that Lyme Disease is often recognized by, no one suggested to me that it could be Lyme Disease. I now know that the bulls-eye rash only shows up on approximately 30% of people who become infected. Since that summer when I ended up having to leave the camp I was working at because I was so exhausted and sick all of time, I continued to worsen. On and off I experienced stomach problems, joint aches, fatigue, cramping and general pain. My doctor's blamed this on the fact that they thought I had Endometriosis. Once the surgery was performed to remove the endometriosis, things improved a little with a combination of continual birth control to balance hormones and the sucess of the surgery. I was still tired and sore, but nothing compared to what I had experienced before. After about a year and a half of mostly pain-free living, I began to experience all sorts of symptoms that we couldn't find an explanation for. I was tested for everything under the sun that my doctor's could think of. Again, they came back to blaming Endometriosis. They assumed that a flare had been causing my problems and another surgery was booked. I had this surgery last year in April. This time, they decided to biopsy the tissues they were removing and it turns out that I didn't have Endometriosis at all, but instead I have a rare disease called Endosalpingiosis. Either way though, it caused me pain but it did not cause the pains that I had been experiencing specifically. I had hoped that just like after my first surgery, things would let up and I would start to feel better again; but things took a turn for the worst. I ended up with multiple post-op infections and was put on antibiotics that made me sick and weak. I couldn't regain my strength after surgery, still haven't. And since then I've gotten infection after infection. The following summer (this past summer 2015) I experienced a boat-load of new symptoms such as muscle spasms, twitching, hand and arm tremors, this awful pinching headache on the left side of my head right at the front, short term memory loss, trouble focusing and concentrating, problems with word-finding, stuttering and jumbled speech, bladder problems, continued digestive problems, muscle aches, joint pain, stiff joints and extreme sudden jolts of pain that had absolutely no explanation. Upon hearing of all these new symptoms, my doctor began to consider the possibility of Multiple Sclerosis. Multiple Sclerosis causes the demyelination of the nerves in the brain and spinal cord causing the symptoms that I had been experiencing. An MRI was booked and fortunatey we were able to rule out the small possibility of a tumor but not fully rule out MS. We are still waiting on a Neurologist consult to run more tests to either completely rule it out, or possibly diagnose it. Through all of this, I had tried to refrain from googling symptoms and making up my own opinions as to why this was happening to me. I no longer had any hope that my doctor was going to figure out what was going on with me. Someone suggested to me that I be tested for Lyme Disease. As I began to research Lyme Disease and how it happens and what it causes; it felt as if I were reading the story of my life over the past few years. I had no idea that something as small as a tick could change someone's life so drastically and cause a chronic illness. After researching and reading countless articles and getting in touch with some people who live with Lyme Disease, I began to seriously consider the possibility that this could be what has been causing my problems all along. I went to the doctor and requested to have the ELISA test (enzyme-linked immunosorbent assay) and the Western Blot Test. Now, because of the research that I had done, I found out from a naturopath that I had been in touch with that the Canadian testing for Lyme Disease is very inaccurate. The Western Blot test is only done if the ELISA test comes back positive (The ELISA test uses a change in colour to identify antibodies and is only technically reliable a few weeks after you have first been infected). The Canadian Western Blot Tests tests for something called Borrelia Burgdorferi which is the bacteria that causes Lyme Disease, the problem is that the Canadian test only tests for ONE strain of the bacteria, strain B31. Which is just ridiculous. So, of course my Canadian Lyme Disease Test came back negative. You should also know that this test very often comes back with a false negative. Thankfully there is an American Lab that offers a chance for Canadian's to have the real testing done for Lyme Disease. Unfortunately though, it comes at a cost. These tests are very thorough and expensive. This is where I am at now. Unfortunately since the worsening symptoms occured back in the summer, I had to quit my job, I haven't been able to work since September. Because of the cost of perscription medications and my lack my medical benefits, I've had to use my savings to pay for meds and supplies that I need to remain comfortable through the pain and keep up with my regular bills and student loan. I don't exactly have hundreds of dollars laying around to pay for these tests. I have a very amazing and generous friend who has offered to pay for half of the test and I am so grateful and thankful to her for being here for me throughout all of this. But there is still a remainder of funds needed. My awesome cousin Emily has offered to create some chronic-illness themed Valentines cards that will be available for purchase online and the proceeds will go to cover the remaining cost of the tests. There is a chance that the test could come back negative and I am working on preparing myself for the possibility of that, but there is also a chance that we will finally find the answer we have been looking for all these years. In the case that we do get our answer, we are going to require a lot more funding. Because Canada does not want to accept Lyme Disease for what it really is, a chronic illness, the treatment costs are extravagent and often times Canadian resident's who have the disease need to travel to the States for doctor's appointments and treatments which all cost a lot of money. Hopefully, in that case, I will be able to set up a fundraising campaign and fundraising events to help out. I just want to say that I appreciate every single one of you who has taken the time to check out my blog posts or read my updates or just simply ask me how I'm doing. This has been a long and stressful couple of years and especially the last few months things have been very difficult. But I remain hopeful that I will find an answer and that I will be able to work towards improving my quality of life.

I also want to take this opportunity to spread a little awareness of Lyme Disease, because even if Lyme doesn't end up being my diagnosis, it is a horrible disease that I believe deserves to be accepted in Canada. Please, if you live in a wooded-are or spend a lot of time camping, hiking, or in the forest -- make sure you take the time to check for ticks and practice tick prevention by wearing bugspray with deet and when you can, long sleeves and pants to avoid bites. I had no idea all the years that I worked at camp and living in a forest literally my entire life that a tiny insect could cause such turmoil in someone's body. If you do encounter a tick bite, don't hesitate to go to the doctor immediately to properly have the tick removed and to be tested and given antibiotic treatment immediately. The sooner it is treated, the less likely you are to become chronically ill.


Thank you again for all of those who have supported me finanically, emotionally and spiritually during this time. I appreciate it more than you will ever know and your prayers and well wishes mean the world to me.



No comments:

Post a Comment