PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

There are some things doctors don't tell you about recovery...

There are some things doctors don’t tell you about recovery…

Last week, I celebrated the one-year mark since my first IVIG. It’s hard to believe it’s already been a year, yet my recovery has seemed to go so much slower than I thought it would.

There are many things that no one ever told me before my first IVIG. I was warned about the fatigue and nausea and headaches afterward and the post-IVIG flare that would come in a few weeks. I was even warned it could take a year before all my symptoms went away, but I was never told what that year might be like.

So I decided to write a letter to my pre-IVIG self. Everyone has a different recovery road. Some people heal in less time than I’ve taken, and others take longer. This is what I would’ve found helpful, but I’d love to know what my fellow PANS warriors wish they’d known before treatment, too…

Dear Me,

You’re in for a crazy ride. You’re sick right now (and don’t even realize how bad it is), but you’re going to get better. You’re going to return to yourself. There will come a day when you are tormented no more. There will come a day when you enjoy your life again. There will come a day when you can spend time with your friends. There will come a day when you are able to eat without getting nauseous and anxious. There will come a day when you don’t have involuntary movements during every waking moment.

But it’s going to be a hard journey that will require you to fight harder than you think you can fight. Along the way, you will have awful flares. You will have times when you are terrified of yourself again. You will have times when you want to give up. You will have times when you will be mad at your parents for wanting to save you. But you’re stronger than you’d ever dare to believe, and you’re going to come out of this more alive than you were before you got ill.

During those times when you seem to be getting worse or going in circles, remember that there isn’t a straight path to recovery. Sometimes, you will take two steps forward and one step back. Other times, you will take two steps back and one step forward. IVIG is the beginning of recovery—not the end. Unfortunately, recovery doesn’t happen overnight like the onset of PANS—it often happens so slowly that you won’t notice you’re getting much better.

Still, even if you know you’re moving forward and that PANS isn’t a permanent illness, there will be moments when you’ll be sure you can’t go on another day. When you feel like that, take some ibuprofen and remember how far you’ve already come. If you’ve made it this far, you can make it the rest of the way to healing.

It will be a long road, and you’re going to feel sad and angry and confused sometimes. Lean on the people who care about you, and don’t look down on yourself for fighting this disease. It isn’t your fault. Give yourself permission to take it easy, and don’t feel bad about it. You are battling a serious illness, and your body needs rest in order to heal.

There will be a lot of days when you don’t feel like yourself, but you are still in there. You are ill, but you are not broken or any less of a person for having this disease. Don’t give up. Better days ahead.

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Comments on: "What I Wish I Knew Before IVIG" (7)

  1. […] journey, but I almost dare believe I’m now 95-99% recovered. I’ve been through three high-dose IVIG treatments as well as eight low-dose IVIG infusions. I’ve endured tonsil/adenoidectomy, over a year of […]

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  2. […] each episode could start overnight and suddenly take me away, coming back to life post-IVIG has always been such a long and slow process that I’ve never been able to pinpoint an exact time […]

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  3. […] I’ve said in the past, IVIG is really only the beginning of recovery—not the end. I spent much of the summer trying to […]

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  4. Beautiful. Haha…thank God you’ve got something so big and profound to live so you’ve got reasons to express such big/profound THOUGHTs! that’s teasing…I imagine you know that! But WOW you write beautifully and eloquently! I’ve got tons to do but had to write that to you! And Joy & I plan to write much more-/about CATS and your advice & home (got pmt–thanks to Mom!-& now need apt agreement that we stay. Sooo need this! God knows. Cool stories. More later!) Love your format too-/writing to your younger self. I thought that often in my early career yrs//would’ve encouraged my jr high/HS self!!!

    Now I should write to today from myself after great lasting HOME milestones. I think that’s what GOD HIMSELF has been trying to give me//obviously so! More to come (typo MIRE to come? No-NOT mire–just wondrous MORE!). LOVE,

    JJ

    ViaApple

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  5. Beautifully written.

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