This week, I made the mistake of reading the PANDAS Wikipedia page, and now I’m boiling over:
They say that “school refusal,” or a deterioration in school performance, is a hallmark symptom of PANS/PANDAS.
Lately, with each day that’s gone by, I’ve slipped farther and farther into the abyss of my inflamed brain. I’m in a bona fide PANS relapse—there’s no denying it now.
As it turns out, I’ve had too much faith in my Lyme/co-infections antibiotic protocol. Continue reading “Is This a Nightmare Come True?”
For the last eleven years of my life, I’ve battled a debilitating yet misunderstood autoimmune disease called PANS. It’s a disorder where an infection or an environmental trigger confuses your immune system into attacking your brain. This leads to all sorts of problems like OCD, anxiety, depression, tics, involuntary movements, cognitive problems, and many more horrible things. It affects at least 1 in 200 people, but you’ve probably never heard of it. Many doctors haven’t, either.
Since the first day I became ill, shame was a mainstay in my life with PANS… Shame about irrational fears that no one understood. Shame that I felt no control over my mind or body. Shame that I couldn’t do what I once could. Shame that I lashed out at my parents and said things I never wanted. Shame that I was spending more time with doctors than friends. Shame that I’d become a different person that I hated.
This week, despite recently having the best few days I’ve had in several years, my OCD came roaring back, worse than it’d been since 2014. I started ticking again, too. People would say things to me, but their words made no sense. All the symptoms that I thought were gone returned to taunt me. Just as you think you have the upper hand with this disease, it can swoop in to tear you apart all over again!
At 93 pounds, I was so miserable and malnourished that I didn’t even know how ill I was. At the time, when I found myself sitting in an infusion chair receiving my third IVIG, I silently wondered to myself what I was doing there. How could I have PANDAS if I wasn’t “that sick”? Why was I getting such a heavy-handed treatment? But with my weight nearing the so-called “starvation” range, many of my organs weren’t working properly anymore. My psychiatrist warned that I’d be in the hospital soon.