Last Friday, I would’ve said I was 100% symptom-free. I went the whole day with no tics or OCD symptoms or depression, and most astonishing of all, I could pay attention in class. My mind was the clearest it’d been in years.
But just as I’d put my life back together after the last flare, it suddenly fell apart.
On Sunday, I began to notice myself having mild short-term memory problems. And then I had a few tics. Monday night, my roommate got sick with an 101º fever, swollen tonsils, and white patches in her throat. Meanwhile, I was becoming more depressed by the minute. A culture of my roommate’s throat on Wednesday confirmed the unthinkable… Strep.
I couldn’t believe my luck (or hers, for that matter). She’d never had a known Strep infection, but she happened to get her first one in college while living with a PANDA who’s been known to lose her mind around the bacteria. Why did this have to happen?
I was sliding ever closer to the cliff from Monday onward, even before I found out my roommate was sick. I began crying for no reason and couldn’t concentrate. My memory was so bad that I forgot how to make a salad I’ve made every day for the last two months, and I couldn’t even remember the topic of a paper I’d been writing all semester. There was no denying that my brain was inflamed again.
I hate how PANDAS is a seemingly endless cycle of grieving the loss of who you are, then rejoicing when treatment resurrects you. When I’m alive, I never know how long I have to live. Will I be in remission for three months, or will it be three days? When I wake up tomorrow, will the infection-of-the-day take me away? I never know.
The worst of all is the sensation of losing myself when I flare; I don’t have symptoms—I no longer have myself. And it’s all the more painful because I’m always completely aware of the fact that I’m mentally dying. I’m wide awake as my heart is torn from my body.
Even so, this flare, though debilitating, has not been nearly as bad as the flares I had before my tonsillectomy. Yes, I lost myself, but I didn’t fall quite as far. I can’t explain it, but this time, the wall that shuts me into myself during a flare wasn’t as thick as it used to be.
Although I was so anxious one day that I ran out of one of my classes and couldn’t come back, I never got to a panic attack like I used to. Although I was extremely depressed to the point that I shut myself into my room for hours, curled up in a fetal position on my bed, and stopped doing my school work (despite normally being a top student), I didn’t become suicidal like I used to. And although I had some trouble walking due to loss of coordination, my legs didn’t go completely limp and paralyzed like they used to.
Objectively, I’m still better than I used to be, even if Strep made me flare. But I’m devastated to have had yet another flare just as I’d recovered from the last one. I’m devastated that my body still makes autoantibodies when exposed to Strep. I’m devastated that I still have PANS at all. How much longer can I keep living with it?
For better or worse, PANS is a part of my life, and though I’m doing everything in my power to push it out, I guess I’ll just have to keep doing Prednisone bursts and antibiotics and all my other treatments and live with it as best I can for now. What choice do I have? I’m beyond exhausted, but I somehow have to believe that life won’t always be this hard. I have to believe that somehow, something good will come out of this illness that still won’t leave me alone.
I wish no one ever got PANS, but I can only hope that what I’m going through and my ability to write about it might positively affect someone else someday—and that it does so even now.
And I have to hope I’ll never again be in such close quarters with Strep in my apartment—for the sake of my roommate’s throat and for the sake of my own sanity.
13 thoughts on “When Strep Attacks…”
Thank you! From a fellow PANS girl
Your welcome. I followed your blog. 🙂
Thank you So Much for writing about this. My daughter is 16 diagnosed October 2012 and struggling. We’ve done tonsils/adenoids, IViIG twice and plasmapheresis. Her life is just passing her by. Your writing is so articulate and helps me to understand why she can’t turn off a light switch or touch handles. I hope that soon all of the PANDAS will find the exact treatment each one needs to be 100% again.
I’m glad my writing helps you understand, Kris. I’m sorry your daughter has been through so much and is still going through PANDAS. I hope someday soon it will be easy to figure out what treatment each of us needs to get better. Wishing you all the best in finding the right one for your daughter.
I hope your symptoms are not around for long. My 9 year old grandson has Pandas and reading this helps me further to understand. Thank you. Please continue to blog . It is such a help.
Thank you, Mary! I’m glad my writing helps you understand. Best wishes for your grandson’s recovery.
Its as if you and my son are living parallel lives. well, not exactly…he’s 13 years old and not quite as articulate as you, as he can only express anger and saddness. But ocd, tics, anxiety, mental confusion, depression, clumsiness (the list goes on ad infinitum) are all symptoms he lives with. He recently had his first Prednisone burst but after 5 doses he could no longer tolerate the medicine. He remains on antibiotics, Aleve and lithium. There has been little improvementt since he was first diagnosed in Sept 2012. Losing hope…
It’s so sad what this disease does to so many people. I wish my story were unique, but it’s not, and I’m sorry your son is living it, too. Have you done IVIG or plasmapheresis yet? What about tonsillectomy? My doctor has always told me that people DO get better and recover from PANS. No one is stuck with it for the rest of their lives unless they’re undiagnosed and/or don’t get the right treatment. But as you know, the problem is finding what the right treatment is, which can take an agonizing amount of time to figure out. Hang in there. You’re not alone. Your son will beat this one day!
What antibiotic are you taking?
I was taking Cefdinir when the flare started but have just switched to Azithromycin. The Azithro seems to be helping so far.
Your ability to so eloquently verbalize what you are going through is a great help to many, I am sure. I’m just so sorry you’re still going through this………….wishing you good health again soon!!!
Thank you, Janet! I hope you’re right, and I hope this is just a short rough patch and not a trend.