I have had the privilege of getting to know Cici a little bit this year, and we had chatted about her sharing part of her PANS PANDAS BGE experience with ASPIRE and our community. We locked on the critical topic of the importance of reaching out for help at the start of the flare rather than waiting until symptoms become aggressive to tell someone you need help. Wishing away symptoms can’t replace treatment and support. And the unfortunate reality is that symptoms often do return, which puts us in a place of continued fear that our life will once again be turned on its end in the blink of an eye, thus causing trauma. So, keep your support system in the loop to access treatment as quickly as possible. – Gabriella True
My name is Cici from the Instagram account @bge.disability, and I’ve been riding this PANDAS/BGE rollercoaster for 11 years. I was first diagnosed in 2010 when I was nine years old and I am currently in recovery from my third flare. When I look at my history with PANDAS, I consider it both a chronic illness and a major source of trauma in my life. Those of us with PANDAS are always in fear of our next flare. We work extremely hard to get ourselves back to our normal lives, and in an instant, it can all be taken away from us, and we have to go all the way back to where we started, barely able to do the things we need to do to stay alive. That’s the hardest part for me, knowing I can lose my progress at any moment
I was so relieved in the spring of 2018 when my immunologist cleared me and said I was fully recovered from my PANDAS journey. He discontinued antibiotics and discontinued my visits with him. So, in the fall of 2019, when I started to show symptoms again, I did my best to hide it. I didn’t want to go back to the place I was in in the spring of 2015 and the spring of 2010. I was off at college, and I did not open up to my family about some of the symptoms I was experiencing. My friends noticed some of my symptoms, such as paranoia about security cameras, psychosis, and self-harm. I also had frequent infections such as impetigo that covered my whole face, not just my nose. They encouraged me to get help from a therapist or a doctor. I brushed it off, and that was my biggest mistake. Things got progressively worse. When I finally reached out to a therapist, she continually encouraged me to go back to my immunologist, but I was too ashamed and too anxious to go back because I thought going back would be like admitting that I was sick, and I was going to have everything taken away again.
I got to a point where I was unable to take care of myself. I had food restriction, which is a symptom I hadn’t had during previous flares, and eating was terrifying because I was afraid I would get sick or poisoned from all of my food. I had compulsions that made me unable to live a normal daily life. I am still recovering from the sensory problems I had during this flare. I had voices talking to me, and I had thoughts of injuring myself. I developed dermatillomania, which left me with red marks on my face. I stayed in my room and did not visit any of my friends. My grades in school started to slip, and classes were almost impossible. I was unable to participate in any of the hobbies I used to enjoy. I was sleeping all day and awake all night.
At that point, I finally decided to go back to my immunologist and seek treatment. Once I got back on my old treatment path, which includes prophylactic antibiotics (I take clarithromycin) and lots of anti-inflammatories (I take ibuprofen), I started to get back the parts of me that I lost. I also added a new antidepressant Mirtazapine, on top of my Sertraline, got back onto a better sleeping schedule, and gained back my ability to eat my favorite foods. I started to have an easier time leaving my room and venturing to other parts of my house. I even was eventually able to take one class that semester and ace it! I recovered enough to get my Covid vaccine, and now I can see my friends for a few hours at a time! I am able to focus enough to play my favorite video games and started a ceramics class which I enjoy a lot. I am also able to run my own Instagram account educating people on PANDAS/BGE! This summer, I feel good enough to hold down a part-time job babysitting.
My main point is that I am privileged and lucky enough to have access to treatment from a doctor who cares about me and that I can trust and is one of the leading experts in PANDAS. And for a long time, I avoided going to see him because PANDAS is a trauma, and I have a lot of traumatic memories in his office, not because of him but because of the memories associated with being sick. But, going to get treatment gave me my life back. If I had held off longer, I don’t know if I would have stayed alive.
PANDAS is unbearable, especially when you face it alone. It is so, so important that if you have a doctor who can treat you for PANDAS/BGE, you take advantage of that privilege. Stay in contact with them, no matter how difficult and traumatic it is. If you start to experience symptoms, visit them as soon as possible. I lost myself because I did not reach out for support when I needed to. If I reached out sooner, when I started having infections that coincided with psychosis, paranoia, and self-harm, I could have avoided my symptoms getting so bad that I had an extremely poor quality of life. Learn from my mistake, and reach out to your support system and treatment team when you need to.