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.
Have you heard of Kerri Rivera? She has a protocol that is brilliant for PANS/PANDAS. She uses it for Autism, but it works for PANDAS too. Check it out, it’s unlike any other treatment out there.x
No, I have not. Have you had success with her protocol? I’ll check into it. Thanks!
Yes, we are having lots of great improvements since starting a few months ago. I finally have hope that there is light at the end of the tunnel. You can have a Skype consult with her for a more personalised protocol for you. The book is a few years old and a couple of minor things have changed. There’s a third edition on its way.
I forget if I said last comment that you can download her book for free.
Good luck and best wishes.
Thanks so much for the information! I’m glad yoe’ve found something that’s helping. I’ll look into the book.
Best wishes to you all, too!
Honestly, I really hope you try this. Kerri sees people completely recover from PANDAS (Lyme too). And the protocol is so cheap and effective, without bad side effects. It would be worth a try before deciding about other drugs. I know we will see full recovery next year. The results so far have bee nothing short of miraculous – with no hardcore drugs or abx. My whole family is on her protocol and seeing so many random ailments clear up along the way – it’s wild and exciting!
May you find full health again, and hope on the journey!
Thanks so much, Fleur! I definitely think I’m going to hold off on the Rituxan for a while. It scares me, and there’s no guarantee it will work. It’s encouraging to hear that you all are getting better without all these scary drugs. I hope you all continue to heal, too!
I’m sorry to hear that you’re not doing well. On the other hand, I have to question whether suppressing the immune system is the right things to do in the long run. Yes, it might buy a bit of time because it suppresses the immediate damage from the immune system, but on the other hand, if you have some sort of microbial imbalance (meant loosely–it may be a true pathogen infection or something like the wrong ratio of certain bacteria in your gut), it could make things worse by allowing this to persist unchecked.
Thank you! Yes, I question it, too. The IV steroids have definitely been helping so far, and my Lyme symptoms have not worsened (all I have left is mild joint pain in a couple joints). I do believe the steroids are my only hope of graduating from college at this point, so I don’t have much choice until December. I’m still treating Babesia and Lyme, and I’ve started the Paleo Autoimmune Protocol to help repair my gut. I’m hoping all of this will work in tandem. And then maybe if it does, I won’t need Rituxan!
Are you cooking/preparing your own meals?
I didn’t really start improving until I moved out from my parents’ home and could try eliminating foods until I found some sort of balance. It turns out there’s some weird set of things that were triggering my symptoms.
Have you had a chance to read my email to you?
I see you did answer my email. I hope that your Lyme will continue staying better!
Put your fears to rest. After 5 years we finally bit the bullet for ds14 to have Rituxan. Combined with monthly high dose IVIG it has been miraculous !!!!!
His symptoms are very similar, but his diagnosis is Autoimmune Encephalitis .
It may take more than one round and we may have to move on to stronger drugs, but we continue to fight the good fight. As do you. Warrior on dreaming panda!!!!!
Thank you so much for this encouragement! It is reassuring to hear success stories like this after reading about some of the frightening side-effects that Rituxan could theoretically cause. I’m so glad it has helped your son so much, and I hope he keeps getting better. Thanks again!
Sending virtual hugs <3
Thank you! <3
I am so sorry to read this but am very thankful that you have a doctor that knows how to treat you. I’ll be praying for you.
Thanks so much for reaching out and praying for me, Amy!
So so sorry to hear – it’s just not fair. I will keep you in my thoughts as you forge ahead!
Thank you, Janet. Thanks for thinking of me!