It’s been ages since I’ve been able to write a blog and I figured it was time that I let you all know what’s been going on with me because I’ve been on a roller coaster ride like none other.
First off, I got some really nasty emails on Christmas day from the only members of my family that were still talking to me and it triggered something in me, and I ended up getting really sick. It started as horrendous pain in my hips and legs and then there was pain all over my body. Next I started to lose the use of my legs and it wasn’t long before I needed a cane for walking because I couldn’t lift my feet and had to drag them along the ground when I tried to walk. Then my mind started to go, and I couldn’t figure out what the words to things that were common in my everyday life, such as spoon, fork, coffee, bath, etc. It was horrendous.
Following that I started to lose the use of my hands, starting with my left one and by the beginning of May, trying to do anything with my hands was a struggle, especially things like holding a pen, or a cup of coffee. I tried to pretend that it wasn’t as bad as it was, but my husband Gary wasn’t being fooled at all and he told me later, that he was really worried that he was going to lose me.
When my symptoms first started I saw a physiotherapist, because I felt the pain in my hips was related to (all) the work we were doing on the house, but he told me he felt that my issues were systemic; my whole body, not an injury from building our house. So I left his office and got in touch with my family physician and over the next couple of months, I had 5 panels of blood done, a Lyme serology, an EKG, a full body x-ray and I had been put on the list for a full body MRI.
It had been two and a half months since my pain had started and I felt like a friggin pin cushion, but I finally had a diagnosis and that diagnosis was Lyme disease. I was so relieved because the pain that was running rampant through my body had been and still was unbearable. I had been to the emergency department three times in just over two months, but all three times they sent me home saying “there was nothing going on in my body that would cause me any pain,” and to take Advil for pain – if I needed it.
I waited a few days after I’d received the diagnosis from my physician before calling to find out when they were going to start treating me but she said she wasn’t sure. She went on to say that the public health department had called her; not only to scold her for doing a Lyme serology in the “middle of winter,” but to tell her they still weren’t willing to see me unless I tested positive a second time.
In North America we have a two-tiered test for Lyme disease and if you’ve read anything in the news you will also have read that the testing for Lyme is antiquated and extremely inaccurate. Currently it’s a two-tiered test, with one of the tests being an ELISA and the other being a Western Blot and if you don’t test positive for the first test; the ELISA, they don’t even do the Western Blot. Furthermore, they don’t very often get a positive on the ELISA and when they do, they make the patient do the test again, to make sure it isn’t a false positive.
This is what happened in my case and my family physician said I needed to do the test again in order to be seen by an infectious disease specialist through the public health department.
I had started doing research on Lyme as soon as I got my diagnosis and I wasn’t surprised that they were making me jump through hoops, but I was starting to get pissed off. It was now the end of March and I’d been in excruciating pain for over three months and although I had a diagnosis, I was yet to be treated.
Two weeks after my Lyme diagnosis and almost four months after my symptoms reared their ugly heads, I got an appointment to meet with an infectious disease specialist. Unfortunately, she told me that my symptoms weren’t part of Lyme disease and even if they were, it was impossible for me to have Lyme disease because she said there were no ticks where I lived. I tried to tell her that I was pretty sure I’d been bitten by a tick when I travelled to New Brunswick in 2016, but she dismissed me like I was some sort of imbecile when I told her I’d only had flu-like symptoms; that I never saw a tick or a bulls-eye rash. What confused the heck out of me was when she said we needed to close the chapter on Lyme disease because it was something else.” I asked her what that something else was and she said she wasn’t sure, but she said they were going to do some tests in order to find out.
I left her office crying my eyes out because I’d been dismissed like a naughty child and I STILL didn’t have anything to help me with the pain I felt all over my body. I walked towards the front doors where Gary was waiting for me and when he saw me, he was fuming and wanted to head straight to our physician’s office, but he knew that after the way we’d been treated over the last three plus months it would only be a waste of time, so we headed back home …to wait for them to call and let us know what was next.
Another month and a half went by and I continued to decline, but even though I was leaving messages for the infectious disease specialist and my family physician, no one was returning my calls. I was starting to show symptoms of Alzheimer’s, such as memory loss, difficulty finding words and putting sentences together, and my husband and I were getting really fearful.
I researched as best I could and when all else failed, I joined a Lyme group on Facebook but when I read through the posts and found out that I wasn’t the only one not being treated for Lyme disease, I felt like there was absolutely no hope, and I started to give up.
Then one day shortly after I’d almost given up on getting any sort of treatment, I saw a post for bee venom therapy (BVT) on my Lyme group’s Facebook page and well - the rest is history!
It’s now been just over three months since I started BVT and I’m walking without a cane, my hands are almost back to normal and I’m speaking in full sentences again. And – wait for it… I’m writing again and not just blogs. I’m almost finished my survivors guide to living with PTSD, plus I’m working on a couple of other books; one being a fiction based on a true story, called “The Turquoise Lockers; A Story About Incest, Sexual Abuse and Narcissistic Personality Disorder (NPD).”
Once again, I have come out on the other side of adversity. Despite (more) threats from nay-sayers and getting sick with another illness caused by the stress from said people, I have proven to myself that I’m not just a survivor, I’m a thriver. Additionally, going forward, I will no longer allow threats to stop me from living my life or telling my story, because after all, it is MY life, MY story and MY truth.
Stay safe and stay strong. Thanks for following.
P.S. I’m going on hiatus for a month so that I can (finally) finish my first book but if you need me, just send me an email @ https://www.davinalytle.com/contact