NEPANS is so thrilled that our friend, The Dreaming Panda, has written a guest blog for us. This is our first story written not by the parent but by the person with PANS herself. We of course will continue to share PANS from parents too!
A few years ago, I was poking around twitter looking up PANS/PANDAS posts and came across The Dreaming PANDA. I read one blog entry then went back and read several more. It was the first time I had read something by someone with PANS. I had talked to many kids about their experiences but seeing her struggles and triumphs dealing with PANS while attending college, all written down really inspired me to keep working for people with PANS. Since then she and I have emailed and kept in touch. She is truly an inspiration for everyone. She has had some dark dark day but always keeps fighting, keeps hoping and keeps encouraging others to keep going, to keep Reaching Recovery. Please read her story and share with others. There is hope. And as she says, "Take courage! You’re not alone; you’re stronger than you know, and there’s hope for life after PANS. This disease is not the end of our stories." Thank you for sharing your story with us. It is an honor to have you guest blog for us. - Gabriella True
After eight years of mental illness and symptoms that over a dozen doctors failed to explain, in 2014, I was diagnosed with PANS. My symptoms had come and gone since I developed the disease at age eleven, so I’d successfully completed my first year of college a couple of months before my diagnosis. At nineteen, I’d been sure that my future was full of possibilities, but after what seemed like a mild case of mono, instead, I lost my mind that summer. My whole world shattered.
Out of nowhere one afternoon, I went from being filled with dreams to becoming inexplicably suicidal and terrified at the thought of simply continuing to exist. My entire body was suddenly consumed with wild involuntary movements, and I couldn’t walk. I was delusional and convinced I was going to die, but the indescribable psychiatric torture that had overtaken me was so intense that the delusion was the only thing that gave me peace.
My PANS was so severe that my specialist gave me high-dose IVIG right away, and she said it would start to help in six weeks. I naively assumed that after a few months, I would have my life back, and things would be how they were before. But more than three years later, I’m still fighting.
There are so many things that no one told me about what it takes to beat PANS—far more than I could possibly fit into one post—but for anyone out there beginning the healing process, there are three key pieces of wisdom that I’ve discovered along the way.
It might be a long road, it won't be easy, but you WILL get there.
1) It might be a long road.
My doctor warned that it could be several months for the full effects of my first IVIG to kick in. Indeed, a year and-a-half passed before I truly went into remission, and recovery was so slow that I often felt like I wasn’t making any progress. Nevertheless, after two high-dose IVIG infusions, months of antibiotics and steroids, a tonsillectomy, and some therapy to eliminate what was left of my OCD, I did finally get better in 2015.
I wish I could say that was the end of my journey, but a few months later, I contracted Lyme disease in 2016 and relapsed. My progress has been just as slow this time around, but the long road to healing is more endurable and less discouraging now that I know what to expect.
Recovery isn’t a straight line—there are lots of ups and downs and twists and turns, but if you keep fighting, the road ends in a beautiful return to health
I hope sharing my story can bring awareness to PANS/PANDAS and inspire people to keep going because one day, it will get better.
Hi! My name is Lily, I’m 23 years old and I have PANS. I’ve been hospitalized so many times I can't even count, seen doctors of practically every specialty recognized in the US, and had nearly every type of medical test run on me. I’ve spent 20 years fighting this, with only 5 years since official diagnosis, but today I’m in remission and this is my story.
I wasn’t actually diagnosed until I was 17, but my parents suspect I’ve had PANS since I first had a flare at 13 months. In the 1990s and early 2000s, PANDAS was only beginning to be researched, so my parents dragged me to doctor after doctor with no answers. The most prominent symptom was a head twitch that occurred after any acute bacterial infection, coupled with severe separation anxiety, episodes of rage and significant OCD tendencies. With no seizure activity and the behavioral symptoms chalked up to personality or growing-up, my symptoms faded in and out with each frequent infection.
After having chronic bronchitis for a year and getting the last of my Gardasil vaccines, I started shaking all over my body. It was the perfect storm. I was a senior in high school and the doctors were at a loss. They gave me Valium to put me to sleep each time I started shaking but offered no solution to the endless tics. I missed more than 45 days of school and desperate for answers, my mom started researching online. Once she found PANDAS, everything fell into place. The diagnosis fit me like a glove and we headed out to my family doctor to confirm and start treatment.
If only it was that easy. The primary care physician was convinced PANDAS, which had just started making the news, was a hoax and instead insisted I was faking it and needed to be sent to the hospital for a psychiatric evaluation. He scolded my mom for “trusting Dr. Google” over his expertise and only agreed to an ASO titer blood test after 30 minutes of begging.
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