I’ll never forget the night it all hit.
I had just gotten home from a good friend’s wedding, and I suddently felt like I had been injected with a gallon of espresso. My hands started trembling uncontrollably, and I was filled with a sense of anxiety and dread. I tried going to sleep several times, and then I finally gave up around 5am. I was a high school teacher at the time, so my Saturday and Sunday mornings were particularly precious, and it was highly unusual for me to be up early. I went to Starbucks and sat at a table reading and sipping coffee until about 6:30 am at which time I headed over to my parents. Let’s just say that they were shocked to find me sitting in the living room when they awoke several hours later.
That day began months of bizarre and unusual symptoms that no one could quite figure out. The months following were filled with constant tremors, a mind that never slowed down, very little sleep, and working out until I couldn’t stand up to try and wear myself out. The lack of sleep made me feel like I couldn’t think, couldn’t function, and I definitely had moments where I thought my sanity was on the brink. That fall, when school started up again, I would often show up to school before it was light out. Many nights were filled with no sleep, and I started to feel more and more worn down and unable to function. As my body struggled, I was then hit every single week with some new virus or bug. My students often commented that they knew I was coming down the hall, because they could hear me coughing before they could see me. And I often had to hide my hands due to the uncontrollable tremors.
My doctor continued to test my thyroid as we all assumed that my family’s history of thyroid disease was the cause. But no amount of thyroid medication, up or down, was changing any of my symptoms. My labs continued to show a body with hypothyroid, while my body kept feeling like I was living with hyperthyroid on steroids. About 6 months after my initial onset of tremors, I went and saw a family doctor, who unbeknownst to me, was just entering the world of infectious disease and Lyme. After listening to all of my symptoms, she ordered tests through Igenex and the western blot. My results the next week came back positive solidly positive for Lyme along with two coinfections, erlichia and babesia. I remember leaving her office that night with a script for antibiotics wondering what in the world Lyme disease was. I remember feeling like it was a bit of a dream. I had honestly never even heard of that disease, and there was no information given to me to figure out what I even had! I went to my parents and told them that I had Lyme disease, which led us to a whole bunch of google searching. None of what I found was good, and my symptoms, which were largely neurological in nature, looked even worse. I was completely lost, scared, and even more, felt very alone.
This began a 5 year battle with this nemesis of Lyme disease. By the time I started treatment, my body was already wiped. My doc had us tackle the babesia first with medications like Mepron and large doses of several antibiotics. I’ll never forget the flourescent yellow color of the Mepron when I poured it out each day to take it. My best friend and roommate walked in one day to find me crouched on the couch with all my pills in my hand. She asked what I was doing, and I told her that I was praying that these pills wouldn’t make my stomach hurt so terribly as they had the day before. I had good days and bad days, and 4 months later, tested negative for the babesia. This allowed us to move onto the erlichia, which was even higher doses of antibiotics. Again, this was filled with good and bad days. I was still catching every flu and bug that came my way, and it seemed impossible to know if I was getting better or worse.
I learned things like “herxing” and flares. Herxing was particularly difficult in the beginning, since I felt like I was taking steps backwards instead of forwards. It took several years to take down the erlichia and we continued to hold the Lyme at bay in the meantime. About two years into this journey, I met and started dating my now husband. Since I was so limited in what I could eat, we would often have dinner at my house of steamed veggies and chicken.
While it was an unusual dating experience, it’s important to know that life does go on in the middle of the battle!
He understood that there was the possibility of my body shutting down on any given night, and that I would need to crawl into my bed, turn on my Lord of the Rings, and pass out. Because as anyone who loves Lord of the Rings would know, Frodo seemed to understand the difficulty of my struggle! As silly as it sounds, he seemed to be the one who understood how very tired and worn out I was.
Over the next two years, we changed antibiotics several times, I continued to go up and down, and I never knew how the day would go when I woke up in the morning. Because of my constant tremors and racing mind, I was on three different medications for sleep along with an herbal sleep support. It felt like I put myself in a coma every night and waking up in the morning was nothing short of torture every day. The second day of our honeymoon, I woke up with stomach pain that was almost unbearable. It sent my husband of two days on a trip to the pharmacy, chatting with my doctors while I stayed in bed for the day. And just a couple of days before that, I had been enjoying my wedding and feeling great.
About 4 years after my treatment started, my body said it was done with antibiotics. My gut was nothing short of destroyed, and I regularly felt like someone had poured poison into my intestines. We decided with my doc that we’d try penicillin IM injections, and boy was that fun! I got 4 injections each week, my hubby on one side and my sister, who is a nurse, on the other. I would say that this was the big turnaround where I started to feel like a normal human again. My gut was able to take a break, and I was able to start coaching volleyball again. While tired in the evenings, I wasn’t crawling into bed every time I got home. Instead of forcing myself to slowly walk around the block, I was finding that I could muster up a little energy for a regular workout.
Over the next 6 months, my tests never came back negative, but I felt better and better, and my husband and I decided to try and get pregnant. I slowly weaned off all the sleep medications, and we pulled back on the IM injections. I got pregnant, and we did a monthly IM injection to keep things under control. Once I was consistently feeling movement around 20 weeks, I got one last shot. I felt my daughter literally go crazy in my stomach right after the injection, and my gut told me that it was time to stop. She was reacting to the toxic load on my body, and I could not continue. Fortunately, my doctor was fully supportive of my decision as a mother, and I have not had a shot since that time almost 9 years ago.
We were prepared for a huge backslide after my delivery, but I never did. My whole medical team was beyond shocked. I attribute this to my shift in thinking of trying to maintain wellness instead of battling sickness. I went on to live a relatively normal life as
I have not been treated for the past 8 years, though I have had several small flares over the past 18 months. Those have been managed with the tools that I talk about here in this blog. Things like diet, supplements, homeopathy, vitamins, and essential oils. I now use these tools to help our family of 5 stay healthy, and out of this journey, I became a certified health coach, blogger, and essential oils educator as a result of my journey. My utmost desire is that no one would ever feel so alone and lost as I was driving away with that diagnoses almost 15 years ago. There were very little support groups, resources, or landing places for those of us walking with Lyme 10-15 years ago, and it’s time for that void to get filled.
It is my utmost desire to provide tools and resources for those who are either battling Lyme and trying to find answers or those who know that it’s time to make better choices for themselves and their family.