PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

About

I’m a 22-year-old college student living with an autoimmune disease affecting my brain called PANS/PANDAS, as well as late-stage (chronic) Lyme disease. I’m blogging about the healing process and doing my best to live life to the fullest along the way!

My Story, in a Nutshell

I suffered from PANS for eight years before my diagnosis in 2014, and it manifested as various neurological and psychiatric issues such as OCD, ADHD, Anorexia, Tourette’s Syndrome, and hypersomnia (misdiagnosed as narcolepsy, hence my blog’s name). Just as I seemed to be “outgrowing” my issues, in 2014, I woke up one day with involuntary movements and became unable to walk, and soon after, I essentially lost my mind. Finally, on the verge of psychosis, I was diagnosed with PANS and began my journey back to health.

Since 2014, I’ve endured multiple treatments: three high-dose IVIG infusions, months of antibiotics, over a year of steroids, and a tonsillectomy.  I’ve had times when I was in remission, but I’ve also suffered two relapses, the second of which was triggered when I caught Lyme disease in 2016. In 2017, I’m doing so much better than I once was, but I still have a long way to go.

Why the Blog?

I started this blog around the time of my PANS diagnosis in 2014, and back then, as far as I know, there was no other PANS sufferer blogging about their journey themselves—just parents blogging about their PANS kids. It’s a lonely road being a teen/young adult with PANS, so I wanted to let others know they weren’t alone. And I hoped that I could be a voice for the PANS kids who were too young to articulate what they were going through.

As many as 1 in 200 children and teens have PANS, yet most doctors still don’t know enough to diagnose, let alone to treat it. Similarly, Lyme disease has reached epidemic levels, yet so many doctors remain uninformed. I’m hoping that with more of us sharing our stories, awareness will increase, and more people can get the treatment that they need.

Comments on: "About" (7)

  1. Hi Cheryl, can’t help dying when I was reading your blog, my son who just turned 21, has been suffering since he was 14. so many tests so many niddle poking for so many years, finally I discovered he has pandas through a parent whos son has pandas. I cannot tell you the very first time when I was watching the you tube videos of pandas, I was crying, up till 4 am “oh my Lord this is it!” my son lost it all ability to speak he became completely catatonic. we did plasmapheresis and one ivig, and we are leaving for San Fransisco tomorrow for another ivig. I miss his voice 😦 but I am also thankful that he now has eye contact, he smiles and he watches tv, and he is eating, ofcourse I feed him … God be with you, you are amazing human being for posting your experiance, everyone should! you are so right!!! you can save lives, desparate parents are so tired of stupid doctors that want to drug the kids with horrible meds. these are the parents that sit and google and find your blog, Wow how wonderful is that? Big hugs to you and thank you for this blog 🙂

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    • so sorry I meant to say crying not dying 🙂

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    • Hi Claris, thanks for such a lovely comment. I’m happy my writing means so much to you. That’s why I keep doing this… It sounds like your son has been through too much. I’m sorry he’s dealing with all of this, but I’m so glad he is getting treatment. I wish all the best of healing!

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  2. Hey there, my 14 year old kiddo just had his first IVIG 2 weeks ago- diagnosed at age 7 (but has had it since 3). His response is pretty amazing. He did the T&A in August earlier this year. I sure hope you stay at 95 and reach 100. Your writing is so much his story and SO much how I try and describe it to people trying to understand. I’m pulling for you. Keep sharing. I’m listening…

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  3. What a wonderful blog you have created. It is sure to help others! I am so sorry you suffered for so long and so thankful you are now on the right path to recovery.

    Like

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