Jump to content
ACN Latitudes Forums

Should I look into PANS/PANDAS?

Recommended Posts

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 by tortellini
Link to comment
Share on other sites

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

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Create New...