PANS + Lyme: Recovery and 8 Years of Misdiagnoses

PANS can mean losing your very self… And then trying to get it back in recovery.

The other day, while filling out forms for an appointment, I froze, as I came upon the medical history section. How could I even begin to explain it all? Moreover, how could I fit everything on two little lines?

I somehow managed to list all three of my psychiatric medications, along with the five antibiotics I rotate in my Lyme protocol. Hesitantly, I also listed Lyme disease as a current medical condition, mostly to explain the many antibiotics. But then I paused… Do I really need to list PANS, too?

You see, in all three of the major PANS exacerbations I’ve had in the last ten years, I’ve not only dealt with crippling OCD, anxiety, depression, cognitive problems, and movement disorders, but I’ve lost my very self; I’ve felt and acted like a different person that no one recognized. Contrarily, I’ve recently started to feel like my “normal” self. Does that mean I’m better now?

During my worst times, it was like an invisible wall had shut me inside my own tormented mind. I was trapped within my own thoughts, yet completely outside myself. I saw the world, but I wasn’t part of it. Life had lost its colors, and my days ran together in a blurry mass of the black and white of OCD, and the gray of depression. My body was alive, but the person I had been was gone.

While 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 when I’ve returned; I slowly regain myself and watch symptoms die away at a glacial pace, and it eventually occurs to me that I’m fully present again.

By now, it’s been over a year since I caught Lyme disease and suffered my third major PANS episode, ten months since the high-dose IVIG that was meant to bring me back, and five months since I began Lyme treatment. And recently, I realized that I was finally myself again. So can I legitimately say I have PANS anymore? For that matter, do I really have Lyme?

I know too many people with PANS who are home-bound, yet here I am, driving around town and trying to meet new people just for fun. I know some with Lyme who can’t get out of bed, but I just ran my second half-marathon (albeit five days after an 103º fever herx). I know kids who would love to be able to go to school but cannot because they are too cognitively impaired from their illness—and then there’s me, with eight semesters of college completed and a 3.94 GPA. I know PANS and Lyme kids who literally want to die and can’t even bear to think about tomorrow, but I’m sitting here looking forward to a summer internship. How can I be sick?

Unfortunately, just because I’m “back” and appearing to function quite well doesn’t mean I’m better—far from it. My anxiety has gotten so bad that I’m now taking the anti-psychotic Seroquel each night to help make it manageable. Plus, I remain on Lamictal and Wellbutrin for other psychiatric symptoms. Most days, I continue to have a hard time walking, and I have so many (small) involuntary movements that I physically cannot be still. Oh, and quite often, my speech comes out nonsensical.

There was a time when I was that kid who wanted to die and couldn’t even manage to go outside—indeed, my severe anorexia meant I was slowly dying last summer. Now, I’m the walking wounded; I still get around and can put up a good fight, but I’m not completely okay, either. I have myself again, but I also have plenty of symptoms.

And so, I added “PANS/Autoimmune Encephalitis” right along with “Lyme Disease” on that form the other day. I’m so grateful to have returned to myself, but I’m seeing that healing a brain and an immune system is a long and arduous process (and there’s always the possibility of a flare or relapse). I await the day when my symptoms are finally gone.  So despite my apparently high level of functioning, yes, I really do still have PANS and Lyme—even though I also have myself again.

Comments on: "The Truth About My PANS Recovery" (9)

  1. My prayers are with you. I don’t have PANS but I have Lyme and co-infections. I hope you continue to improve.

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  2. So glad you feel like you have yourself again! What a journey you have been on. Continue to get the answers and care you need. Your path should continue to get brighter from here.

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  3. Melanie said:

    So unbelievably well said! You’re so insightful!! Glad you’re feeling somewhat better, every little bit helps. You continue to be an inspiration for all PANDAS, PANS & Lyme people (I won’t just say children) out there, suffering. Hope you get a reprieve in your symptoms soon, you deserve it!!!

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    • Thanks so much, Melanie! I’m glad you found this insightful. It can be hard to put my experiences into words, so it’s good to know that it came across! Thanks for cheering me on.

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  4. Beautiful that you are finding yourself again! Healing is a lifelong journey and the waves of health (especially with chronic illness) will ebb and flow. Thank you for posting this. It definitely helped validate and normalize some of my experiences too. ❤️🙂

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