The Thirteen Year Riddle

I grew up in a very loving household. My mother was and still is the most nurturing and loving figure in my life. Anytime I had a problem, she would help me figure it out immediately. In 6th grade I went to the Angeles Crest Forest with my class. This was my first school trip without my mom, so my anxiety was eating me up on the bus ride there. I was full of nerves and homesickness, but also a little excited to feel independent on my own.The trip itself was interesting, we went on many hikes outside in tall grass, one kid, Tim, told me I shouldn’t have worn a white shirt because that attracts ticks. I nervously laughed and said “don’t scare me like that!” When I got home from the trip, I noticed two huge bug bites that were in the shape of a bullseye. There was one on my leg, and one by my elbow. We didn’t think much of it because this was before the high tech internet of today, and the panicky Web MD symptom search. My family all laughed at it with me and called me the lord of the rings, and they all thought it might have been ringworm. I never went to the doctors for it, as it went away over time.

At the end of 6th grade I started noticing my body slowing down. I got sick often, I couldn’t keep up with the other kids in P.E class, and I was starting to feel fatigued 24/7. My body also started to ache. This was unfortunate timing because I had just started puberty and my period, so my mom told me that these symptoms must be my body changing. Which made perfect sense at the time.

Through the years, I made many visits to the doctor and a few times I ended up at the hospital for various painful symptoms. Random things would occur in my body, unexplainable pains, aches, spasms, etc. None of my doctors looked into it. They always said “eat better. Sleep more. Exercise.” And I knew even then that something more was going on. Over the course of 13 years I would get blood work done about half a dozen times a year. And everything always came back negative, which made me feel like I was making this all up in my head.

I was absolutely miserable as time went on. Things would just keep getting worse with my body. The amount of inflammation and joint pain would keep me in bed when friends invited me out. I would fall asleep during family parties and couldn’t keep up with my friends, physically or mentally.

When I was in my 20’s I finally decided to call a Rheumatologist who told me I had fibromyalgia, which is essentially just a clump of symptoms that no one can explain. Some say its from trauma, but I have dealt with my trauma in therapy and really don’t think it would affect my body this severely. 

I guess having an “answer” gave me clarity, but it still felt like there was a missing piece of the puzzle. For years I kept thinking back to those bug bites I got as a kid. “There’s no way…” I kept telling myself.
In 2021, my symptoms had gotten worse, and recently I have begun to have rapid memory loss, as well as full body spasms/shocks at night.

My friend Lee messaged me on Instagram and referred me to this specialized doctor who treated him of his Lyme disease. I had done extensive research on Lyme prior to this conversation, and was absolutely convinced this was what I had for 13 years. 

I made an appointment with this doctor and got in pretty fast. They took extensive blood tests the day of my appointment, and by the end of the visit, I was shaking with nervousness. I knew that if nothing came back this time, I was going to be an emotional wreck. I waited a few weeks and then had my follow up appointment.
I waited patiently in the doctor’s office just tapping my fingers against my purse, legs shaking and my mind full of thoughts. He came in and told me that I have a high grade chronic infection, and I tested positive for a type of Lyme disease. Not the common disease, but a strain of it, and other diseases that the ticks must have been carrying. My face swelled up and I wanted to cry but I kept it in. He was so validating in how I’ve felt for 13 years. He called it an invisible disability, which people have laughed at when I’ve told them I am partially disabled. He told me the first step is to boost my immune system, and then kill off the bug. I can’t even begin to describe to you the amount of happiness I feel from finally having a real answer, and being on the path to recovery.
So as of now, I am in the treatment process. I am taking herbal supplements and tinctures, as well as 2 peptide injections daily. I am ecstatic to see my progress in a few months. 

Never give up when you know something’s not right. One doctor might tell you one thing, and another might tell you differently. I was trying to think of something positive that has come from all of this, because I have been stuck in a negative head space for 13 years. The only thing I have is that if anyone if suffering from chronic pain/fibromyalgia, go to a specialized doctor and get your blood drawn. You will be so glad you did. Now that I have this information and experience, I want to spread the word and maybe help someone who is reading this, and feeling the same way I do, lost in a medical mystery.