This semester, I wasn’t at school until October… Though I’d never missed a single day of sitting in the classroom.
After returning home from my summer internship in August, where I’d felt almost 100%, I noticed symptoms creeping back in. At first, I waited it out to see if they would pass, but I kept getting worse and worse, slipping farther and farther into a tormented mind that I no longer recognized.
By October, I was completely gone.
Suddenly, I had symptoms that were totally unmanageable:
- Not being able read my textbooks/do homework
- Feeling “out-of-it” and struggling to understand the world around me
- Out-of-control involuntary movements
- Rage attacks/severe mood swings
- Literally wanting to die because my existence was excruciating
After consulting my neurologist, she said I’d need a powerful biologic drug called Rituxan, but I had to be home to start it. In the meantime, there was a temporary solution that might let me finish the semester: IV steroids for PANS.
So for the past eight weeks, I’ve spent one afternoon each week at an infusion center, getting 1000 mg of Solumedral.
The idea was that doing this weekly mega dose of steroids would calm the autoimmune reaction causing my symptoms without making me more susceptible to infections—and without damaging my bones, as daily steroids can do. (I already have serious bone loss in my spine from anorexia and a year of daily Prednisone.)
As I type this, thanks to weekly Solumedrol, I’m now functioning at 95%. My recovery has been nothing short of a miracle, though as with all the other treatments I’ve tried, there were a lot of ups and downs.
Here’s how my recovery unfolded..
Week 1
Astonishingly, within hours of the first dose, I was able to do my homework for the first time in weeks. My depression was suddenly gone, and my involuntary movements stopped within a couple of days.
I got well enough to regain insight into how far gone I’d been, and I was shocked. I recovered from symptoms I didn’t know I had.
My personality returned. I felt like I’d just woken up, or that I’d come home from a long, dreadful vacation.
Unfortunately, a few days later, the positive effects of the steroids wore off, and I was just as sick as I was before the first dose of steroids. Was this how it would be for the rest of the semester—a few good days each week and then becoming tormented once more?
Week 2
Thankfully, after the second treatment, I came back to myself again. I still had a lot of anxiety, and I still felt like my mind wasn’t as clear as it should be, but I was no longer living in constant despair. Just as in the previous week, the effects started to wear off as it got closer to my next treatment, but I didn’t slip as far as I had the first week.
Week 3
After the third treatment, my mind was completely clear. I started enjoying my hobbies again and even became interested in my chosen field once more (this is always the first thing to go when I’m sick and the last thing to return). I felt a little “off” and unfocused by the fifth day, but it was barely noticeable compared to the regressions I’d had in the first two weeks.
Week 4
By the fourth week, I was back to getting A’s on my assignments. I became more engaged with life, and I was able to follow along in lectures and contribute to class discussions.
It seemed like the whole PANS relapse had never happened.
What Do You Mean Recovery Isn’t Linear!?
But if there’s one thing I’ve learned in the last three years of my PANS recovery, it’s that progress is never linear. Sometime in the fourth week of treatment, I caught some kind of cold and went way backwards again.
The fifth steroid treatment barely helped.
The sixth one had only a slight effect.
It’s still not clear what happened, but somehow, whatever caused the flare died down, and my seventh and eighth infusions were successful. I’m now back to 95% again.
Words for the Wise…
And so, if any of you are about to start a similar regimen, my best advice is to realize that even if steroids help quickly, it can take some time for the full effects to kick in. You have to be patient.
If there are flares along the way, try not to get discouraged. You’re talking about healing a brain and calming a raging immune system—I don’t know if it’s possible for anyone to make a full recovery quickly if you’re as bad as I was.
Now What?
I have one more infusion this week, which is also my last full week of college classes! Then, it’s exam time and…. GRADUATION!
I know I wouldn’t be graduating if it weren’t for this treatment. And as painful as the relapse was, coming out of it has given me a renewed sense of gratitude for everything—especially the fact that I’m well enough to be cramming and stressing out about finals right now. I’m so grateful for another chance at life!
But am I cured? Is this treatment the last thing I’ll need to kick PANS out of my life for good? Probably not. Weekly IV Solumedral was only supposed to be a temporary solution that would allow me to finish school—and it looks like that’s exactly what it’s done.
Maybe I won’t relapse after my last dose. Maybe I will. Who knows? I’m still working with my doctors to figure out what’s next.
So we shall see what we shall see….
Thank you for writing such an inspiring blog! I have a 16 year old son who has been flaring on and off since October. He is really struggling with the cognitive issues and feels as if he’s losing his mind. He has terrible anxiety and insomnia. Do the steroid infusions affect sleep? To me it seems it would heighten his anxiety and insomnia though I understand that they reduce inflammation. Somewhat scared to try – although we have to do something quick. He’s going to have to quit school if not.
And thank you for reading my blog! 🙂 I relate all too well to the feeling of losing your mind, and I’m sorry your son is going through that. Steroids can definitely cause anxiety and insomnia, even for people who don’t have PANS. For me, they decreased the worst of my severe anxiety, but I did feel like, in the day or two after a couple of the infusions, I was a little “edgy.” It was a different kind of feeling than what I get with PANS, though. I had some trouble with insomnia and mild mania induced by the steroids, but for me, the side effects wore off in a day or two, and the benefits continued much longer. I managed the insomnia by adding melatonin on top of the Seroquel that I always take each night to help me sleep. Steroids were a lifesaver for me and fixed the cognitive issues after a few infusions, and they stopped that feeling of losing my mind. They took me from failing in school to earning straight-A’s. It was unbelievable! If he’s suffering terribly already, it may be worth a try to give your son some relief, if your doctor is suggesting it.
Also, IV steroids are much different from daily Prednisone in pill form. From what my doctor told me, weekly IV is supposed to have much fewer negative side effects long-term. I have borderline osteoporosis from taking Prednisone pills every day for over a year, so I hope your son doesn’t have to do it every day.
Sorry, I posted this by mistake on the wrong post of yours earlier! So I’m re-posting it here where it actually goes.
It’s interesting that “interest in your chosen field” is the first thing to go, and the last to return. For me it’s just about the opposite–for me the first things to go are the ability to stay organized/keep on top of mundane things (like cleaning up my apartment, keeping track of the things I need to get through the day) and the ability to adapt to the world without a chip on my shoulder.
Interest in my field is one of the last things to go, but what goes long before that is ability to work in my field productively. So I become very much a “dreamer”, who has a ton of hypotheses (many of which, probably, would strike others in the field at best as grandiose, and at worst as “crazy”), yet don’t have the “follow through” to really pursue any of them. Succeeding in an academic environment requires being able to work with others, and even working alone requires the ability to write code, grind through the tedious aspects of math, etc. Those abilities go long before the overall curiosity about the subject.
I think that’s part of why I have difficulty relating to many other people with Lyme and similar chronic illnesses, they are more like you. And most other autistics I meet, they’re not at the point where they have lost those abilities to stay focused and organized to the same degree. Have you ever seen the movie “Adam”?
Interesting. Perhaps a better way to describe what I experience is that I remain somewhat interested in my field, but I’m too depressed to do much, which makes me feel terrible. So I don’t want anything to do with it when I’m like that because it just makes me more miserable to see that I can’t really do what I want. So I do relate to not having the follow through!
Yes, I imagine it is frustrating feeling like no one else has the same symptoms as you do in regards to your interest in and ability to work. I’m sure there are others out there, though!
And no, I haven’t seen that movie. Maybe I’ll have to look into it after graduation…
Good luck with your exams and graduation! You’ve made it this far, I’m sure you’ll be able to finish strong! And even if you can’t, that doesn’t meas you aren’t a strong person, because you are!
Thanks so much! Exams are going really well so far. 🙂
I will be giving you a much-deserved virtual standing ovation at your graduation and wish you healing and good health in the days, weeks and months to come.
Thank you so much! Your encouragements over the last few years have meant a lot as I’ve fought my way through school and recovery.
So, did u get the Rituxin?
I’m glad the IV steroids helped you but I’ve read/been told they are contraindicated in Lyme disease. I know they can help PANS so I guess it’s a fine balance.
I hope you continue to feel better for a long, long time!!
No, I didn’t get Rituxan, and I’ve decided not to do it unless all else fails because of the possibility of still having underlying infections. Right now, the plan is to try the Coimbra high-dose Vitamin D protocol: https://www.coimbraprotocol.com/
It’s been successfully used for Lyme, and it puts 95% of people with MS into remission. It sounds too good to be true (and maybe it is), but there’s a great deal of research and thousands of people who have been helped by it. No one’s done it for PANS, but it seems like a better thing to try before something as drastic as Rituxan. I’ll post more details about all this soon when I know more about what’s next!
And yes, it’s definitely rare to do steroids when you have Lyme and generally not recommended, but my LLMD said I’m more PANS than Lyme at this point. Going forward, I’m hoping to do less of them and only use them to tamp down the inflammation caused by treating the infections…
Thanks for the good wishes!