I have had FND for 12 years, but was misdiagnosed for 8 of those years. I had my first official FND spell at the age of 10, and I am now 22. My spells present themselves as non epileptic seizures on the left side of my body happening primarily at night. It will happen during the day if I am sick, stressed, or don’t exercise everyday. My FND started out mild, but over the years, it progressed and spread to my left leg and neck.
My journey has been a long and complicated one of neurologist visits, psychologists, visits to the Mayo Clinic for overnight sleep studies, different theories tried by a functional neurologist, and Neurofeedback therapy…but nothing made my symptoms better, and it was found that I had some gut issues that needed to be fixed. I was told that once these girls issues were fixed, my symptoms would improve…but they didn’t.
This summer I went to an alpaca farm for a wedding. After the wedding, I became very sick for a month, and every test came back negative and was told I was not sick despite having a constant fever, chills, nausea, and worsened spells. My functional medicine doctor I work with now recommended I get tested for Lyme Disease as a last resort and suspected that I may have had Lyme for a while now since I mentioned I experienced a mystery rash when I was 6 that no doctor ever found out where it came from. I got the test, and turns out, I have had untreated Lyme Disease for 16 years! Lyme explains my FND perfectly. Late stage Lyme gets into the nervous system, and commonly causes neurological symptoms. This is what happened to me, as I contracted Lyme at 6 and had my first spell 4 years later. Lyme also explains why my FND gets worse when I’m sick. Immune systems can’t multitask well, so whenever I get sick, my nervous system gets stressed out because my immune system has been still trying to fight Lyme for 16 years and won’t stop fighting until it’s gone. Any added stress to my body makes Lyme aggravated in my nervous system which flares up FND! I am not on a treatment program called “Cowden Program” to rid myself of chronic Lyme, and hopefully most of my FND symptoms.
I never would’ve thought an alpaca farm would be the answer to FND after 12 years- let alone Lyme Disease. I feel so blessed to have answers so now I can go back to doing all the things I loved doing before FND like traveling, last minute plans, and just enjoying life more without stressing about FND all the time. I encourage those who still are seeking answers to consider getting a Lyme Disease antibody test. Happy FND Awareness Day! Find the good and blessings in disguise around you, and this disorder becomes so much more manageable!
By Lauren, Minnesota, USA