My Story

Note: This page was written in 2014.  It’s so out-of-date that it’s embarrassing, but I’ve left it here because it’s still part of my story.  Since writing this, I’ve received many more treatments and found out I also have Lyme.  As of 7/18, I’ve survived three more PANS relapses, but now I’m doing well. So much has changed that rewriting this seems overwhelming, but I’ll update my story here soon!

At nineteen years of age, living with PANS/PANDAS has put me through more than anyone should ever have to face in a lifetime. When people ask me what PANS/PANDAS does to you, I think that a better question would be, “What does it not do?” This disease has touched every aspect of my life—physically, emotionally, mentally, spiritually, and socially—but it took eight years and fifteen doctors for me to receive a proper diagnosis.

My life wasn’t always this way. If anyone had a reason to believe she would never get so sick, it would have been me. At eleven years old, I was perfectly healthy and always smiling. I was a competitive athlete that had a large group of friends I loved. I had 20/20 vision, no allergies, no broken bones, and had never even had a cavity. Developing a life-changing illness was the last thing I expected.

But one night in July 2006, a few weeks before I started sixth grade, I developed a high fever of 104º F and began to hallucinate. I jumped out of bed and started screaming about people coming into the bathroom to throw books in the toilet. Thankfully, after a few minutes, I came back to my senses a little and went to sleep, and the fever dropped to 100º by the next morning.

Within a few days I felt completely fine, but several weeks later, I developed extreme fatigue along with joint pain. I had to give up my sports because I was so exhausted. Doctors ran every test imaginable, and everything looked normal. They wrote it all off as either “depression” or a simple virus that would clear up in time. But the nightmare was just beginning.

In February of 2007, one night, out of nowhere, I had a sudden onset of severe OCD and had my first panic attack. A single unwanted thought entered my mind, and I could not let it go. In an instant, I felt as though I had become a different person—that I was ruined and hopeless forever. Although I couldn’t bring myself to tell my parents about the thought, my mom noticed the next morning that I had suddenly changed. Indeed, I have never been the same.

As the weeks wore on, my condition only got worse. Before long, my mind was a constant cacophony of intrusive thoughts. I felt like I was losing my mind, because I had no control over the unwanted thoughts that constantly filled it. I was severely depressed. I was an insomniac. I felt compelled to jump out of my second-story window. I tried to taste things that weren’t food, such as shower gels and rocks. I thought I had to be going crazy, because I no longer understood anything I thought or did.

"Nearly every moment, I am battling demons." This journal entry from when I was 12 describes how frightening the intrusive thoughts were.
“Nearly every moment, I am battling demons.” This journal entry from when I was 12 describes how frightening the intrusive thoughts were.

My parents were quite frightened and confused by my behavior, so they took me for a psychiatric evaluation. Unfortunately, it took two months for me to be seen, and my symptoms had calmed considerably as the flare died down. Still, my OCD, although almost completely hidden inside my mind, was quite severe. Nevertheless, the psychologists missed it completely and diagnosed me with ADD and depression. Again, they blew off all the physical symptoms and history that should have pointed to PANS (not that they would have even heard of it). I shudder to think of how many other children have had a similar experience.

From 2008 until 2012, after the horrendous flare in 2007, on the outside, I seemed to be a normal kid again—even though torturous OCD thoughts continued to flow through my mind at nearly ever waking moment. I eventually just accepted the fact that I would always have these unwanted thoughts, and I tried not to think about what kind of bad person I had to be for having them… The concentration problems also remained, but with accommodations, I was able to get through school. Still, for those four years, in the back of my mind, I always felt like there was something wrong with me—that underneath the medications I took for my misdiagnoses, I was still sick.

When I was seventeen, one day, it became impossible to deny that something bad was going on inside of me. My OCD suddenly became extreme. I would constantly fidget and pace around the house for hours in an attempt to get rid of the obsessions that haunted me. It felt like someone was scraping their fingernails against a chalkboard inside my brain, over and over and over again all day long. Words are completely inadequate to describe the torment I had to endure.

After some research on the Internet, I figured out for myself that I’d had OCD for the past six years of my life. The intrusive thoughts were not my own. I was not crazy or bad for having them. After a couple weeks, I finally worked up the courage to talk to my parents and seek out help. After eight months of Cognitive Behavioral Therapy and Exposure Response Prevention, my OCD became manageable. Unfortunately, none of my doctors or therapists knew anything about PANDAS, and CBT/ERP is not a cure for it, so I continued having other symptoms.

During my first week of college in 2013, I came down with a sore throat. For months afterwards, I began having an increasingly hard time staying awake during the day, no matter how much I slept at night.  I could sleep for twenty hours at a time, and I still felt like I needed more sleep, which led to a misdiagnosis of narcolepsy. I had bad hand tremors, and I physically could not sit still without random muscles jerking. I lost my appetite for days at a time. I started having panic attacks again—though this time, they were unrelated to OCD. Towards the end of my second semester, I found out that I had contracted mono—a known PANS exacerbator.

Just when I thought things couldn’t possibly get any worse, they did. One night during the summer after my freshman year, I had the worst panic attack of my life: I was shaking all over, my arms went numb, and I was hyperventilating. When the attack ended, I started having involuntary muscle jerks in my legs. Over the next twenty-four hours, the movements spread to the rest of my body, and I also became unable to walk more than a few steps without my knees buckling underneath me. At the ER, I was diagnosed with a severe dyskinesia reaction to a medication and told I would be back to normal in a couple days. But things only got worse…

Falling
I fell at least fifty times per day from just trying to walk normally.

Two weeks later, when the tics seemed to have calmed down a lot, I was sitting on my bed one night when, suddenly, I was hit with the worst wave of depression of my life. I spent two hours crying in bed that night for no apparent reason. The next day, I told my parents I had “died.”

My personality was gone. I stopped eating almost entirely until I lost 10% of my body weight. I was completely out-of-it. People would talk to me, but it felt like a dream—like everything wasn’t real or was really far away. I sat on the couch just staring at random objects until my eyes became so dry that my contact lenses fell out. I forgot simple words for every day objects. I had fits of rage. I had to be watched all the time to be sure I didn’t hurt myself. The tics got worse. I still couldn’t stay awake. I fell so much whenever I walked that I needed to wear knee pads.

At this point, my parents refused to believe that I was just a depressed narcoleptic who also happened to have OCD and ADD and a tic disorder—along with walking issues no doctor could explain. They pushed for one doctor to do a five-day burst of steroids to see if my symptoms improved, which would indicate brain inflammation was the culprit. Sure enough, I came back to life after the third day—my depression and sleep problems completely disappeared, I was able to concentrate, and I only had a couple falls each day as opposed to fifty or more.

It was undeniably clear now: my body had betrayed me. My brain was under attack by my own immune system.

After being evaluated by a PANDAS specialist a few weeks later in July 2014, I finally got a proper diagnosis, and my road to healing finally began. Because I had lost so much weight and had been dangerously depressed, I was sent for an IVIG infusion the following week (usually when cases aren’t as severe, doctors wait until antibiotics haven’t done enough before IVIG is considered an option).

IVIG: Intravenous Immunoglobulin from 1000 donor antibodies...
The IVIG that will (hopefully) give me back my life

Today, I am continuing to recover and get my life back as I wait for the full effects of IVIG to kick in. I am expected to be completely symptom-free over time, though it could take as long as a year.

It’s been a very long and difficult journey to get to where I am today, but I refuse to feel sorry for myself. I believe with all my heart that before long, PANDAS will be a thing in my past that has made me a stronger person in the present and has made me look forward to a better future. I still have a long road back to full recovery, but I will never, ever give up. My doctor has told me I will get better. I’m going to kick PANDAS’s butt.

No child should have to live with PANDAS or PANS. I’m going to work and dream for the day when every doctor becomes aware of the disorder and knows how to treat it. As PANDAS expert Dr. Latimer said at a talk in 2013, “PANDAS is a tragedy not because of a lack of treatment options but because of a lack of recognition.” The condition is usually completely or almost completely curable. I will dream of the day when my story and the years it took for a diagnosis is a PANDAS anomaly and not the norm.

8 thoughts on “My Story

  1. My son (16) has battled scrupulosity ocd for over two years now. They say it attacks what is important…and faith is of great importance to him. It has taken a kid who enjoyed worship and being in church to a kid who stlll wants to go..but struggles the whole time with intrusive thoughts and does not have the same joy. We have been through several abx and , with the exception of azith for the first year or so of diagnosis, none have worked to decrease the OCD. Myco P has always been high for us and also HHV6 and lead levels were shown to be high. I don’t know if its time to go a more natural route (homeopathy, etc) or try another SSRI. Did you find that SSRI helped? I want to get him to a point where he can at least do the ERP. We have not been to that point to date.

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    1. Hi Angela, I’m sorry to hear that your son is also battling scrupulosity. It struck me when my faith was at its strongest, too, so I know how torturous it is. I hope your son realizes that the fact that he even wants to keep going to church and worshiping while fighting scrupulosity is a testament to how strong his faith really is––no matter how loudly his OCD may be screaming at him otherwise. I’m not sure what denomination you are, but one website that helped me work up the courage to do ERP for my scrupulosity is: http://www.net-burst.net/guilty/scrupulosity.htm

      Are you seeing a PANDAS specialist? There’s a list on pandasnetwork.org who may have more tools to help you. I would also recommend you consider finding an integrative doctor. I didn’t find much help with the SSRI’s, but 25 mg of Seroquel each night seems to ease my anxiety. I add Ativan when things get really bad, but it’s very easy to become dependent on it, so you can’t take it for too many days in a row. I also take Lamictal and Wellbutrin for my mood. Perhaps your son would be willing to try an easy exposure after taking some Ativan?

      The main thing with the ERP is to work up to things very, very slowly, starting with exposures that he knows he could do without much anxiety. (For example, it can just be delaying a compulsion by a few seconds at first and over time you delay it longer and longer until not doing at all isn’t a big deal.)

      Good luck! Let me know if there’s anything I can do.

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      1. Thanks for your reply. We do have a PANDAS doc here in the area that we have worked with since 2014. We also have a therapist who himself struggled with scrupulosity, but even going at it from an ACT therapy position rather than ERP has been very difficult and this is why we want to at least get to some baseline so he can get through even the “small” pieces of ERP. Ssri has not really helped a lot. The good thing is that it did not make it worse as in some cases. Did you ever try anything like homeopathic remedies or supplements?

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        1. I’m glad you have a PANDAS doc. Do you think he would be willing to try some Ativan or very low-dose Seroquel just so your son could get started with ERP? I felt like starting was the hardest part, and I was terrified about it. I haven’t done homeopathy, but I’ve tried a variety of non-homeopathic supplements like turmeric, fish oil, GABA/Taurine, and L-theanine. Inositol helped my brother with his OCD, but I never tried it myself. CBD oil seems to be very popular for anxiety/OCD in the PANDAS community these days, and there’s a lot of evidence for it, but I haven’t tried that, either, so far. I’ve been going to a Chinese medicine doctor for the last couple of months, and I think the acupuncture and herbs have been of some help with my anxiety.

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          1. I do agree based on what I have read and heed that ERP is priceless. Did you find that your meds or supplements reduced the intensity and/or frequency of thoughts? It seems that everything we have tried lately has not touched the thoughts.

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            1. Mostly what helped me was steroids: either a high-dose Prednisone burst (60 mg for five days) or a taper, or 1000 mg of IV Solumedrol. The thoughts returned last fall when I relapsed, but Solumedrol knocked them out almost completely. Taurine and GABA together may have helped a year or so ago, but not nearly as dramatically as steroids. Seroquel helps my anxiety, but I don’t know how much it’s done for the intrusive thoughts. My thoughts and mental compulsions have never gotten as bad as when I was in high school, before I had a clue about PANS, and I don’t know how much of it is because I learned how to cope so that the compulsions never spiral out of control, versus my PANS just morphed into other symptoms. Therapy was good in that if and when the thoughts do pop up, they no longer cause the same level of anxiety because I’ve learned they have no power in themselves. But you definitely have to be ready for therapy. There are some PANDAS Facebook groups with parents that know more about supplements and herbs for OCD than I do, if that interests you. I hope you find something that helps!

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  2. Wow so glad your on the road to you!… We are in the midst of a flare only to realize that my sons intitial flare started at 4 and we will be peeling the layers back to see who he really is… He was dx with autism… and had a case of strep that was severe, now in retrospect I see the cycling of flares,tho I think because he had so many anti bad and anti viral herbs we may have blunted it’s force… he is on antibiotics now, which is starting to Slowly make its difference…. we shall see…. the sad thing is both his pediatrician and neurologist knew of Pandas/pans and AE but steered us off the path! (they were of the more mainstream belief system)…

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    1. Hi Denise, thanks for the comment! I’m glad you all are on the road to healing now, but I’m sorry your doctors tried to steer you away from PANS initially. I wish your son the best of healing!

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