I’m a 23-year-old Californian fighting an autoimmune disease affecting my brain called PANS/PANDAS. I also have Lyme Disease. I’m blogging about the healing process and all my misadventures along the way and doing my best to live life to the fullest! PANS is mistakenly considered pediatric, so I want to shine a light on the reality of PANS in adults.
My Story, in a Nutshell
My first symptoms came on when I was nine, but it took a decade to figure out what was wrong. Over the years, my undiagnosed illness manifested as various neurological and psychiatric issues such as OCD, Depression, Anxiety, ADHD, Anorexia, Tourette’s Syndrome, and hypersomnia (misdiagnosed as narcolepsy, hence my blog’s name). My symptoms came and went during that time, but by high school, I’d made a good life despite my challenges.
But all of that changed when I was struck with an extreme case of OCD that came on overnight when I was seventeen. I spent a year in therapy and got better for a while, but little did I know my struggles had just begun.
After my first year of college, in 2014, out of nowhere I developed wild involuntary movements and lost the ability to walk. Soon after, I essentially lost my mind, going through my days with an inexplicable mental torture too painful to convey in words.
The world stopped making sense to me, and I never seemed to be completely awake. I had panic and rage attacks for no reason, sometimes running out of the house screaming and threatening to take my life. I felt trapped inside my thoughts, yet completely outside myself.
I’d gone from being a happy, straight-A student to being mentally, emotionally, and physically disabled in a matter of days. No medications seemed to help. My doctors threw up their hands and said they had no idea what was wrong with me.
And then I was diagnosed with PANS by an expert, at nineteen years old, and I began my long journey back to health.
PANS/PANDAS (aka Post-infectious Autoimmune Encephalopathy) is an autoimmune condition where an infection triggers the immune system to attack the brain. This causes numerous debilitating neurological and psychiatric symptoms that are often mistaken for a mental illness—but PANS/PANDAS is a physical autoimmune disease that’s treated medically.
In 2016, I was “struck by lightening” again when I contracted multiple tick borne infections including Lyme Disease. This has since made PANS even more difficult to treat, and because the infections went undiagnosed for nine months, it has been very difficult to clear them from my body. Nearly three years after the bite, the fight continues. The fatigue from the infection is a significant impairment in my life, but I’m doing my best to struggle through grad school anyway.
Since 2014, I’ve endured multiple treatments for PANS: eighteen IVIG infusions, months of antibiotics, over a year of steroids (both in pill and IV form), and a tonsillectomy. I’ve also been treating my Lyme Disease with various cocktails of antibiotics and supplements. I’ve had times when PANS was in remission, but I’ve also suffered three major relapses:
- When my first IVIG “wore off” in early 2015. (I recovered by December.)
- When I caught Lyme disease in spring of 2016. (I recovered from PANS after a year.)
- For unknown reasons in the fall of 2017. (I’m 90-95% better as of July 2018).
Nevertheless, while fighting these debilitating conditions, I somehow had enough decent days, along with an iron willpower, a high-tolerance for suffering, and some fantastic support, that allowed me to stay in college. In December 2017, I graduated with a Bachelor of Science, Summa Cum Laude. I’m now writing a book on how I’ve managed to do all of this while so sick, in the hopes that I can help others with chronic illness fulfill their education dreams, too. Achieving what I have has been immeasurably difficult, but it gives me hope that my life has not been ruined by my diseases.
I don’t know what my future holds. I don’t know how many more treatments I’ll need. I don’t know when/if I’ll ever get permanently better. But I do know that my diseases don’t define me. They may have stolen many years and opportunities from me already, but I refuse to let them ruin the rest of my life. PANS and Lyme have sent me on major detours and created seemingly insurmountable obstacles at times, but I cling to the dreams I had before I got sick, I push forward, and I tell myself that someday, somehow, I can still get to where I want to be.
Why the Blog?
I started this blog about PANS right as I was diagnosed in 2014. I was scared and overwhelmed, and I wanted to read about another adult with PANS showing and telling me themselves that I would be okay. But back then, there was no other PANS sufferer blogging about their journey themselves—just parents blogging about their PANS kids.
I was a writer… So why not start a blog and hopefully bring some hope and awareness to others someday?
Indeed, it’s a lonely road being a teen/adult with PANS, so I wanted to let others know they weren’t alone. And I hoped that I could be a voice for the PANS kids too young to articulate their experiences.
As many as 1 in 200 children and teens have PANS, yet most doctors still don’t know enough to diagnose, let alone to treat it. Similarly, Lyme Disease has reached epidemic levels, yet so many doctors remain uninformed. I’m hoping that with more of us sharing our stories as I am, awareness will increase, and more people can get the treatment that they need.
I hope that my blog will be an encouragement and a source of hope. Will you join me for the journey?