PANS + Lyme: Recovery and 8 Years of Misdiagnoses

Celebrating 3 years of blogging and the beginning of the end of my battle?

Three years ago today, I published my first post on this blog.

At the time, I was in a downwards spiral, falling apart and losing my mind. My doctors were baffled and running out of treatment options, and I was threatening to take my life. But then, my family figured out I had PANDAS/PANS. Thus began a three-year fight to regain everything my illness had so suddenly stolen from me.

Back then, it seemed I was the only 19-year-old on the planet who was fighting for their life against this allegedly pediatric condition, PANDAS/PANS. There were no blogs written by patients—only parents. I wanted to read from someone writing about going through what I was going through; I wanted someone to show and tell me that I would be okay. Since I could find no such blogs at the time, I figured I might as well be the person to change that so that something good might come from my ordeal one day.

Today, in 2017, I can say it’s been quite a 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 steroids, month after month of antibiotics, and countless therapy sessions. Although I still take medications and follow a Lyme disease antibiotic protocol, today, I’m able to live my life, and I’ve managed to accomplish things I never would’ve dared to dream when I started this blog.

So I wanted to take a moment to thank all of you for reading The Dreaming PANDA and for offering your encouragement and prayers over the last three years. I’ve probably never met any of you, but your support has meant the world to me. Thank you for taking the time to read what I write, and sometimes, to reach out to me. It can be lonely to deal with a life-altering disease, but this community has kept me going—and I sincerely hope my writing has helped you in some way, too.

I’m not quite ready to stop this blog just yet—in fact, I’m not sure if or when I ever will, since I have more readers than I ever thought I would when I first started. I don’t ever want to stop raising awareness, and I have every intention of continuing to bring hope to those of us who’ve been affected by PANS and Lyme.

For this reason, I’m planning to write a memoir in the near future, and I intend to post excerpts along the way. With any luck, however, I’m now living in the final chapter of my recovery journey.

I know a lot of you are probably out there wondering if you or your kid will ever get better and live a productive life—just as I wondered when I began writing three years ago. You might feel hopeless and think that no one can get past this. It’s often been an impossibly hard journey, but you know what? Yes, I’m okay now. And you can get there, too.

Comments on: "3 Years Later… The Beginning of the End?" (15)

  1. Thank you so much for your encouraging words. My 10 year old daughter suffers from pans and it’s nice to hear from some one who has recovered from it. Thank you!

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  2. Charlotte said:

    Awesome for you! I’m always hoping that my beginning of the end of my Lyme, Bartonella, and PANS but I was just diagnosed about a month after I started 6th grade, in September 2016. I wish you luck in your recovery!!!!!

    Liked by 1 person

  3. Kim R. Loring said:

    Your blog has been so helpful to me to understand all that Pans/Panda patients go through.
    I am so happy for you that things are going well and headed in the right direction. I look forward to your blogs each and every time they come up in my email.

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  4. I’m so happy you’re doing well! This just made my day to read this (after a very hard day with my little one)! And gives me hope for my sweet little girl…that she WILL get better. Best wishes to you for continued healing. Thank you for sharing your message.

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  5. Thank you for all the insights you have been sharing with us. I am so happy to hear you are well. Because you have shared it has given me hope for my grandson.

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  6. So grateful you have found a path toward healing, and a means to share your story to support others!

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  7. You’re thanking us? Thank YOU for all you’ve done to raise awareness of PANDAS/PANS and especially for all the hope you give to others.

    Liked by 1 person

  8. Melanie said:

    Thank God! So wonderful to hear. My child just diagnosed with Bartonella, a co-infection of Lyme. Lyme pending. These are better tests. The Bartonella & Lyme tests were all negative in the past.
    PANDAS/PANS since 2009. Been a long hard road. I hope this is the beginning of my child’s end with chronic illness!!
    Any words of wisdom, encouragement or advice welcome!

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    • Just going back through my comments and realizing I never properly answered this… Sorry to hear that your kid was just diagnosed with those infections, but I hope having those answers will be the beginning of the end of his chronic illness, too. Have you done Igenex testing yet and found a doctor who specializes in Lyme? Hopefully you have. I don’t know, I think the best advice I can give, cheesy as it sounds, is to keep on keeping on. People DO recover, though it never seems to be as quickly as anyone would like. And on the worst days, remember that not every day is that awful. I like to try to tell myself that if things can get worse, then they can also get better. Hang in there!

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