When I was 10 years old my mum thought I had PANDAS, however this was dismissed as my Strep test came back negative (which I later learnt didn’t mean anything as I was tested years after onset and they were only testing for a recent Strep infection.) My GP put me on 2 weeks of antibiotics when I was 10 years old for suspected PANDAS, but the antibiotics didn’t help so it was thought that I didn’t have PANDAS/PANS. However, we now know that it was likely the wrong form of antibiotic (different antibiotics target different infections.)
At age 13, I still suspected PANDAS/PANS even though it had been supposedly “ruled out” at the time, even though it really hadn’t as you can have PANS without ever having Strep and you don’t always respond to the first antibiotic you’re given, but tic disorder specialists tend to assume that if you don’t have Strep and don’t respond to one course of antibiotics then you can’t have PANS - but it is often much more complex than this.
I remember reading stories from people with PANDAS/PANS and thinking that their story sounds exactly the same as mine as I had overnight onset severe OCD with personality change and dilated pupils, and my symptoms always got worse with infections.
At age 15 I was discharged from CAMHS as my tics were no longer a problem, due to eliminating factors that trigger inflammation and addressing traits of Scotopic sensitivity. I felt pretty confident at this time that my tics had some kind of autoimmune basis.
It was at age 17 though that it became clear that this was most likely PANS, because what happened then couldn’t be put down to Tourette’s in any way. At age 17 I was doing a work placement in a specialist Autism school. One of the students that I was supporting had suspected Impetigo (a Strep infection) and he wiped it on me (not intentionally.) Shortly after that, I got a sore throat and life as I knew it had ended.
After years of being free from OCD, it came back. It was very severe, I believed that my involuntary intrusive thoughts could contribute to the end of the world and that aliens in the afterlife would be angry at me. I was burning up with fear (quite literally - I felt like I was burning) and begging to be put into a medically induced coma until it ends. I also lost my coordination. I remember trying to get something out of the cupboard and completely missing as I had no coordination anymore. I felt like there were bugs on my arms and then started losing sensation throughout my entire body.
I became more irritable than usual and I was convinced that I was dying. I developed severe ADHD-like symptoms that I had never experienced before - they were so severe that it was almost traumatic. I couldn’t listen to music anymore as I would keep flicking through songs, unable to focus on them, I lost the ability to write much as I made countless typos and kept involuntarily zoning out due to lack of focus, my mind was constantly racing to the point where I would physically freeze as if my brain was shutting down from over-stimulation and I couldn’t stay still at all no matter how much I wanted to.
I also developed severe brain fog to the point where I couldn’t understand what people around me where saying. My mind split into 7 streams of thought, with different intrusive thoughts and flashing images that would happen multiple times a second - this is why conventional OCD treatments like CBT / ERP had no chance of working.
My vision changed and I developed derealization and depersonalization. I developed aching knees (joint pain is common in people with PANS) and I had episodes where I felt like another person was overtaking my body. I was pale, struggling to eat much, and had extremely dilated pupils. My tics returned severely after years of hardly ever ticcing and my handwriting regressed dramatically.
I had a horrible ankle infection which I got given penicillin for and this reduced my OCD symptoms quite a bit and also got rid of a bit of my brain fog and derealization. This is when I knew I was dealing with PANS. Of course, I live in the UK and can’t afford to see a PANS specialist, and I was also over 16, so the NHS have no services for dealing with something like this. I have never met an NHS doctor willing to diagnose and treat PANS in people so close to adulthood.
At age 20, I had evidence of Lyme Disease antibodies in my blood, so I believe Lyme plays a role in this all as well, it is often a factor for people with PANS.
The journey to answers has been frustrating and stressful - there are no services or specialist doctors under the NHS for adults with PANS. This all was blamed on Autism by the NHS... this isn't Autism.
Getting a PANDAS/PANS diagnosis and accessing treatment feels virtually impossible unless you are rich, a very young child, or have a straightforward case (unlike mine aha.)
Finding out about Lyme has helped me quite a bit though as treatment for Lyme is slightly more affordable (only slightly though) and works on eliminating bacteria, reducing inflammation, and supporting the immune system so a positive Lyme test was a blessing in disguise for me because it allows me to get treatment that will help my PANS symptoms without having a confirmed PANS diagnosis.