Should I look into PANS/PANDAS?

[tortellini]

Hi- I am writing this post on behalf of myself. I am 21 years old and I think I may potentially have PANS/PANDAS. However, all of the information that I am looking at pertains to kids.  I was talking to someone who has PANDAS and they told me to look into PANS as what I experienced in the past sounds like it could potentially be that. However, I am skeptical as when I read about PANS/PANDAS, it seems like this is a sudden onset and many of the symptoms are severe. I've been anxious my entire life, however there are certain points of my life where I feel as though I went from somewhat anxious to extremely anxious.  I do not remember much of when I was younger- this is just going on things that I have been told. 

 

Over the summer of 2014, when I was 15 years old, I had a psychotic break. I have to admit at that time, I was under stress, but the stress was not all that profound. This psychotic break caught everyone in my family off guard as I seemed like such a typical teenager- I had friends, I was doing sports, and I just finished up my freshman year where I earned a high GPA. Nothing seemed abnormal with me. My mom said it was like overnight I changed. She took me to the ER to see what was going on and the doctor just diagnosed me with OCD/social phobia. My mom took me home and thought I had made improvements, but then in the blink of the eye, I completely regressed.  I went into full psychosis. I was no longer able to make conversations with anyone- the only words in my vocabulary was "No" and "I don't know". I couldn't dress myself, I couldn't shower myself- I could not do any of the things that I once had no problems with.  Schoolwork wasn't even in the picture. My mom took me to a psychiatrist where I diagnosed me with Psychosis NOS and recommended that I go to a psych ward. However, the psych ward did not help. I was pumped with all kinds of  antipsychotic medications and no improvement whatsoever. All the medication did was turn me into a zombie. The medication did not help.  To give some clarity on what happened before going to the psych ward, I was constantly showering saying that I had this smell, I was slightly throwing punches at my mom,  I was convinced that there were people following me and broadcasting my every thought, and I remember needing to sleep with my parents because I thought that the FBI was trying to break into my house to give me a lethal injection. There's more to the psychosis but I think what I provided is enough to get a gist of what was going on. Flash forward to after the psych ward- I had an EEG and brain MRI, medically everything came back normal. Neurologist referred me to a psychiatrist. Most doctors that I saw had no idea what was going on with me. Then I entered this partial hospitalization program- once again, I was barely talking- my only words were "No", "I don't know". Something that I remember looking back is me looking in the mirror and thinking my pupils were big. I felt as though my appearance changed. I don't know if this was the psychosis but my mom also noticed enlarged pupils. This partial hospitalization program did not know what was going on with me either. The psychosis took a while to go away, but then in the winter of 2015, I was diagnosed with generalized anxiety disorder.  I was prescribed Zoloft/Klonopin. Honestly, I never felt as though those medications helped me. The doctors/ psychologists/social workers at the program said that the psychosis was triggered by years of bottled up anxiety. I got treatment for the anxiety and was relatively fine until 2018. 

 

 

In 2017, I went off to college and felt ready for college. Honestly, for a lot of people the transition is difficult, but for me it wasn't. I felt comfortable. However my OCD progressively got more severe. Then second semester 2018, I remember going to the health office because I was sick--> I remember slightly vomiting, ears hurting, and having a sore throat. I wasn't prescribed anything as the doctor at the health center said I was fine. I know correlation is not causation, but after I got sick, I feel as though my OCD/anxiety got worse. I spent days awake unable to fall asleep performing rituals and was unable to eat. I went to the ER and was sent home where I then decided to take a medical leave to get more intensive OCD treatment as the OCD was too much for me to bear. This is weird as I look back on, but when I was 18, I got my wisdom teeth out and was prescribed antibiotics. I felt as though my OCD/anxiety lessened with the antibiotics, but after I was finished with the antibiotics, I feel as though my OCD/anxiety/other symptoms went back to where it was before the antibiotics.

 

Then spring 2019, I passed out on my university's bus and was taken to the ER because of a too fast heart rate. The hospital staff wanted to test me for Lyme and I left because I felt as though they were just running tests to run tests. Fall semester 2019, I got sick again and the urgent care doctor near my campus diagnosed me with an upper respiratory infection. Just before then, my OCD/anxiety got bad once again, I was experiencing lots of anger which is uncharacterized of me. The urgent care doctor prescribed me antibiotics (Augmentin to be specific) and once again I felt as though my symptoms improved.

 

Some other things that I experience/experienced  is slight tics, brain fog, sensory issues, attentional issues, very slight rage, and irritability. Around a week ago, I was experiencing a sore throat and I noticed  slight rage (I did not understand why I was so angry), increased OCD/anxiety and  slight separation anxiety with my mom.

 

I mean based on what I wrote here- is it worth looking into PANS? I feel as though what I experience is not as severe as lots of the stories that I read about and for the most part I am able to function. There is more too, but I feel as though what I wrote here is the most important.

Edited April 2, 2021 by tortellini

[ejh]

Hi. I think it is worth looking into PANS/PANDAS. It is hard to say but the symptoms getting better with antibiotics and worse after you are sick suggests there may be an inflammatory component. 
 

Good luck