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. Since July, I thought my reemerging symptoms were a temporary reaction to the antibiotics, so I pushed forward. But then I kept getting worse and worse. My Lyme specialist eased up on my protocol and told me to do more detoxing. When this didn’t help, I tried taking a break from Lyme treatment altogether, but no matter what I’ve done, I’ve only gone farther downhill.
I thought my Lyme diagnosis and the treatment that ensued would be the nail in the coffin of my eleven years of chronic illness. I thought I would graduate college and get on with my life without continuing to fight PANS or Lyme. I thought I would never need more IVIG or other PANS treatments. It could only be in a nightmare that I would get sick again…
But what if your nightmare comes true?
In the last few weeks, I’ve taken a turn for the worse, and now I’m but a shell of who I was this summer, when I would’ve said I was 95% in remission. I’m still alive, but it’s like life is happening without me, because I’m not really here anymore. I’m a top student, but I’m unable to do any school work, so I’m making terrible grades. I just don’t care about much of anything these days. All I think about is surviving.
My psychiatrist has been suggesting for almost two months that I was probably having autoimmune issues, and I haven’t wanted to hear it. This isn’t happening, I told myself. I can’t be in a PANS relapse. Maybe it’s just a nightmare, and I’ll wake up and see it isn’t real.
But when I started getting panic attacks, failing assignments, ticking like a clock, and having intrusive OCD thoughts running through my mind during every waking moment—and steroids were the only thing that alleviated my symptoms—I knew I couldn’t run from the truth anymore.
And so, this week, I bit the bullet and found myself in front of my PANS doctor, yet again:
“How long have you been sick now?” my neurologist asked as I slumped into her office.
I sighed. “Eleven years.”
“And how many times have we done IVIG?” She scrolled through my records on the computer.
“Three high-dose, eight low-dose.”
“Rituxan,” she said. “That’s what it’s going to take for you.”
My stomach did a somersault. Wasn’t Rituxan only for the worst cases? Was I really that sick? How did I get to this point?
Rituxan is a drug that kills off your immune system’s B cells, which are what create antibodies. It’s used for several autoimmune diseases and some types of cancer. For PANS, the idea is that when your body eventually re-generates new B cells after treatment, they won’t be attacking the brain as they were before. Thus, Rituxan lets your body rebuild a new, healthy immune system.
“Okay,” I swallowed. “But if we have to wait until I finish school in December…” I paused, looking out the window as I tried to form the sentence. “I can’t keep living like this until then.”
My doctor nodded. “I want a picture of you with your diploma. We’re going to get you there.”
So in the meantime, my doctor explained, I’ll do six weeks of high-dose IV steroids: 1000 mg of Solumedral one day each week. This should dampen the inflammation in my brain without suppressing my immune system. I’m also going back to treating Babesia, and if I have a Herxheimer reaction, I know there’s still an infection—in which case I won’t do Rituxan quite yet.
And so, I left the appointment with my PANS doctor filled with both hope and despair: hope, because maybe the steroids will make it possible for me to get through this semester and graduate—and maybe Rituxan really will be the end to this eleven-year war. But I feel despair because truth be told, Rituxan and its side-effects terrify me.
I’m glad that I have a way forward, but honestly, it’s a horrible feeling to realize that I’ve relapsed to the point where this drug may be what it takes to recover…
Yes, this is my nightmare come true.