About

I’m a 22-year-old Californian college student fighting an autoimmune disease affecting my brain called PANS/PANDAS. I also have Lyme Disease. I’m blogging about the healing process and all my misadventures along the way and doing my best to live life to the fullest!

My Story, in a Nutshell

I suffered from PANS for over eight years before my diagnosis in 2014, and it manifested as various neurological and psychiatric issues such as OCD, Depression, Anxiety, ADHD, Anorexia, Tourette’s Syndrome, and hypersomnia (misdiagnosed as narcolepsy, hence my blog’s name). My symptoms came and went over the years, and by high school, I’d made a good life despite my challenges.

But just as I seemed to be “outgrowing” my issues and had finished my first year of college, in 2014, I woke up one day with involuntary movements and became unable to walk.

Soon after, I essentially lost my mind, going through my days with an inexplicable mental torture too painful to convey in words.  The world stopped making sense to me, and I never seemed to be completely awake.  I had panic and rage attacks for no reason, sometimes running out of the house screaming and threatening to take my life.  I felt trapped inside my thoughts, yet completely outside myself.

I’d gone from being a happy, straight-A student to being mentally, emotionally, and physically disabled in a matter of days.  No medications seemed to help. My doctors threw up their hands and said they had no idea what was wrong with me.

And then I was diagnosed with PANS by an expert, and I began my long journey back to health.

PANS/PANDAS (aka Post-infectious Autoimmune Encephalopathy) is an autoimmune condition where an infection triggers the immune system to attack the brain.  This causes numerous debilitating neurological and psychiatric symptoms that are often mistaken for a mental illness—but PANS/PANDAS is a physical autoimmune disease that’s treated medically.

In 2016, I was “struck by lightening” again when I was bitten by a tick over Spring Break and contracted multiple tick borne infections including Lyme Disease.  This has since made PANS even more difficult to treat, and because the infections went undiagnosed for nine months, it has been very difficult to clear them from my body.  Nearly two years after the bite, the fight continues!

Since 2014, I’ve endured multiple treatments for PANS: eleven IVIG infusions, months of antibiotics, over a year of steroids (both in pill and IV form), and a tonsillectomy.  I’ve also been treating my Lyme Disease with various cocktails of antibiotics and supplements.  I’ve had times when PANS was in remission, but I’ve also suffered three major relapses:

  1. When my first IVIG “wore off” in early 2015. (I recovered by December.)
  2. When I caught Lyme disease in spring of 2016. (I recovered from PANS after a year.)
  3. For unknown reasons in the fall of 2017.  And I’m still fighting to get better.

Nevertheless, while fighting these debilitating conditions, I somehow had enough decent days, along with an iron willpower, a high-tolerance for suffering, and some good support, that allowed me to stay in college.  Not only this, but I’ve accomplished things I wouldn’t have dared to dream: I graduated in December of 2017, Summa Cum Laude, and I’ve been nationally-recognized for my work.  Achieving all of this has been immeasurably difficult, but it gives me hope that my life has not been ruined by my diseases.

I don’t know what my future holds.  I don’t know how many more treatments I’ll need.  I don’t know when/if I’ll ever get permanently better.  But I do know that my diseases don’t define me.  They may have stolen many years and opportunities from me already, but I refuse to let them ruin the rest of my life.  PANS and Lyme have sent me on major detours and created seemingly insurmountable obstacles at times, but I cling to the dreams I had before I got sick, I push forward, and I tell myself that someday, somehow, I can still get to where I want to be.

Why the Blog?

I started this blog about PANS right as I was diagnosed in 2014.  I was scared and overwhelmed, and I wanted to read about someone with PANS showing and telling me themselves that I would be okay. But back then, there was no other PANS sufferer blogging about their journey themselves—just parents blogging about their PANS kids.

I’m a writer…  So why not start a blog and hopefully bring some hope and awareness to others someday?

Indeed, 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 too young to articulate their experiences.

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 as I am, awareness will increase, and more people can get the treatment that they need.

I hope that my blog will be an encouragement and a source of hope.  Will you join me for the journey?

9 thoughts on “About

  1. Thank you so much for this. I couldn’t find anything that was reassuring. I wished I had a gauge for adult PANDAS and I hope this will help me to some degree. I’ve been in turmoil for years and I have so much I want to achieve in my life, but I haven’t been able to do much because I’ve been hindered by illness. I feel like I’ve been lazy and haven’t achieved much in my life and I’d like to know when I may get better so I can make up for lost time.

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    1. And thank you for reading! I started this blog because I wanted something like it when I was first diagnosed, but it didn’t exist. My hope has always been that it might help people feel less alone. But I’m sorry that you’ve been hindered by your illness. Fighting PANDAS is one of the hardest things anyone can do, so even if you’re not doing nearly as much as you would like in your life, I don’t think you’re lazy. I hope things start getting better for you soon!

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  2. 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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    1. 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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  3. 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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