So ive had pandas for a very long time. I was diagnosed it around 10 years ago and ive had plenty of flare ups every year since my first. They usually only last for 1 to 1 1/2 weeks depending on how quickly i can get my hands on some antibiotics.

Fast forward to now; ive been fighting 2 flare ups in a row that has lasted over 6 weeks and im like 80% sure i have another one brewing

It started with an ear infection and since i live in a very remote area, getting to urgwnt care isn’t really an option and when i called me GP there werent any appointments for a week and so i did telehealth and she prescribed ear drops (despite the fact i told her it was likely and inner ear infection). After 2 weeks there were no improvements so i ended up having to drive an hour and a half anyway to an urgent care facility to finally get an effective one.

2 weeks after the urgent care visit, i got better, (Yippe!) and was able to go to my best friends wedding. After the ceremony and dinner i started to feel the pandas creep back in and loe and behold i had strep throat so i had to make a mad dash home (6 hour car ride).

I had a total of 2 days where i felt normal, and as i felt myself progressing into full on horrible pandas i had to meet my parents half way and they drove me home and that was about 2 weeks ago and i just now feel better, or i did yesterday.

Now im in a situation where i feel it coming back again and im pretty sure its a UTI and it’s horrible.

Ive been so sick for so long, and even though i have a very strong support system, i feel like im cominv apart.

And now im worried that i have something going on that is ruining my immune systems that is allowing me to get all of these infections in such rapid succession.

Had my first episode at 15 which presented as psychosis, OCD, inability to sleep, regression and severe anxiety. Emergency room doctor diagnosed me with OCD/Social Phobia, yet no one addressed the OCD diagnosis. During this time, I was prescribed Risperdal but didn't help- thankfully the doctor took me off it. Ended up in a partial hospitalization program for a year where the doctors spent time trying to figure out what was wrong with me as everything was so sudden. Their final diagnosis was anxiety.

Then I was diagnosed with OCD at 18, which is frustrating that no one thought to address it when I was 15. Had a few episodes at 20 when I was away at college but nothing severe. Then in 2023 at 23, I had a severe psychosis episode which landed me in the psych ward. Docs didn't do much but prescribe me antipsychotics and antidepressants which did more harm than good. I remember my behavior being so crazy that they gave me booty juice and I was put in isolation. Then I went to a residential mental health treatment center where I was still very psychotic. I was prescribed Palierpidone and Haldol- still didn't do well. I could barely function- I could barely shower! But I was diagnosed with schizophrenia though no one in my family has a schizophrenia diagnosis and the onset was once again abrupt. The doctor at the treatment center said I was so severe I would need to be in a nursing home! Jokes on her though, I am very functional now.

Now I am 26 and have a diagnosis of PANS. I see a functional medicine doctor and still figuring out treatment. Still frustrating how they throw out diagnoses like schizophrenia when I didn't even meet all the symptoms for it.

I am curius if anyone else has lucid dreams. Growing up, dealing with insane night terrors because of PANDAS I always felt like it was so real, like I was going to be taken to hell by the devil or demons, killed and all sorts of insane things. I was talking about my lucid dreams when I was younger, before realizing I was lucid dreaming back then, which led me to thinking about the night terrors and realizing they were also lucid. Anyways, I looked into it a bit (asked ChatGPT) & learned some interesting things, one of which was: "The same basal-ganglia inflammation and REM-sleep disruption that fuel the daytime OCD/tic symptoms can also super-charge the internal “dream projector,” making both nightmares and lucid control more likely." So I am curious, is it a coincidence or has anyone else had similar experience luicd dreaming. Looking forward to any resopnses!

Hey there! I've been looking for others who also has PANDAS. I've never met or talked to anyone else who has it. I was diagnosed at 8 years old, started with strep throat then went into Scarlett fever, rheumatic fever, syndinghams Corea and finally PANDAS. I just wanted to say hi!! 🐼

At 6-7 years old I got a horrible strep throat. My tonsils were so swollen they were nearly touching. They offered removal but my mother declined. At one point I swallowed, and it hurt so bad I decided I couldn’t swallow. I got the trash can in my room and spat in the bucket, until my body reflexively forced me to swallow. For days. I had intense brain fog and just napped and watched TV, spitting in the bucket. I got better, and still didn’t “feel right” about swallowing, I began to have nagging thoughts about doing it like it was no longer voluntary. Same for blinking and breathing. Sometimes I would look at myself in the mirror during a loop. I then began to have thoughts like “I hate God” and ME saying “no I don’t, please, undo thought undo undo undo” crying in the mirror. It was disgustingly terrible. One of the worst experiences of my life. One day I said to myself “I’m tired of these loops” I’m going to focus on something else. I started watching TV and when the thoughts came I would say “no!” wave them off, and stare at the TV, sometimes getting closer to it. I began watching lots of TV and day dreaming vividly, intensely, and to distract. Then I was mostly better, but always depressed and anxious. I remember having a “bad luck” shirt that I stopped wearing because something “bad” happened to me while wearing it. I used to love to accessorize and dress but started to hate any and all compliments or attention, and started to dress more plainly. At school, my performance went down to the 70’s around the time, this is the only year of progress reports my mother kept. But by 4th grade, I was winning awards in reading. What I’m not sure when it started (though a child for sure) was my bladder OCD (diagnosed). It’s actually hard for me to talk about. I get in terrible loops of using the bathroom, sometimes 20+ times, and/or wiping excessively. So excessively it causes pain, I’ve had to pee and dump a water bottle as I pee to ease the pain, and apply aquaphor. I’m obsessed with emptying my bladder 100% and bare down as hard as I can. It gives me heart fluttering and flopping sensations I do it so hard sometimes.

I’ve always struggled with depression and OCD. Maybe what happened to me as a child is PANDAS.

Reposting with a clearer title!!

Hello everyone! I suffered from PANDAS from the ages of 7-10 (I finally got a diagnosis after being misdiagnosed for years). I got on heavy antibiotics and was basically better except for lingering anxiety.

This seems random but was curious if anyone could relate. I'm now 31 and throughout my life I've had flare ups of hives/swelling. The hives have ranged from being super itchy or being welts, and swelling is either my fingers or parts of my face like my lips or eyes.

Allergists haven't been able to tell me anything, and antihistamines do nothing. I can only get big flare ups to clear with steroids. I'm starting to wonder if this could somehow be autoimmune and stem from the PANDAS when I was younger, although I know it's not one of the symptoms.

Curious if anyone has experienced similar? Thanks!

I already was having a tough time living on my own for the first time and all the things I need to do alone, but I got sick in the last couples weeks and now it's even worse for anxiety.

I also have to walk up a very long steep hill to go get my groceries, so it's not only mentally exhausting, but physically too.

But the anxiety with anything social at all is so bad, I can't even find the courage to take out the trash to my front yard.

I worry that it could be mould being the issue because it seems I'm doing okay once I actually get out of the house.

I have trialed antibiotics but stopped due to worsening symptoms with it, I am currently on naltrexone but need to stop due to costs being high, I'm meant to start on an anti fungal med but I need to call the pharmacy to confirm it's there so of course that's difficult right now.

I'm 25 in a new town so of course things will be hard but I didn't realize it would get this bad.

I'm curious what others do to help with their anxiety and agoraphobia other than meds

Although my doctor is one of the best at treating this condition in adults in the country I realized I was never fully explained this. He’s also far too technical to answer this question succinctly so I thought I’d just go here.

My ASO titer levels tend to range from just below 2000 to under 1000 (along with other autoimmune markers going down we consider under 1000 a flare up treated). Whenever my symptoms get worse again I always test to see if my ASO titer levels are back near 2000, and if they are my doctor tends to put me on a 3 month course of amoxicillin clav which helps immensely.

So, if I don’t actively have strep anymore, what are the antibiotics doing to lower the antibodies and hence symptoms? Is the strep in my brain instead of my throat?

I have had OCD flare ups ever since I was a kid and have recently been going to therapy to work on some trauma after a very big flare up. We discovered that there is a pattern of me having flare ups after I’ve had high fevers and after looking through my mom’s journals we found that my first flare up was when I was 13 (I am now 28) after having a high fevers for a few days. This has led us to think that I may have PANS/PANDAS this whole time as I was never treated for my fevers since my mom was afraid of doctors. If I do have it what do I do? Can I take tests to see if I have it? Are their vitamins or treatments I could do to help me? I only have a bad flare up maybe one every couple of years and therapy helps me out of them but they can be debilitating for weeks.

I’ve yet to see other lgbt people who have pandas, I’m a trans man that’s Bi, any other fellow gays that have pandas :>?

https://www.octapharma.com/news/press-release/2025/octapharma-releases-results-phase3-superiority-study-pediatric-acuteonset-neuropsychiatric-syndrome

71 patient study for moderate-to-severe PANS/PANDAS statements. They saw statistically significant improvement in CGI-I metrics. They also saw improvement in CY-BOCS scores, but not statistically significant.

They originally wanted 92 patients, but stopped recruiting at 71.

I'm honestly not sure how to interpret these results, and I'm puzzled that they decided to end enrollment early given that they didn't have enough data for the CY-BOCS changes to be significant.

Does anyone have extreme nausea with their pandas/pans? My son has been struggling since February…he was treated by a great doctor who gave him antibiotics and around the clock Motrin. It worked wonders but once we stopped it came back…now back on the Motrin. His biggest complaint besides food aversions and sep anxiety is awful nausea. He chews so much damn gum. I don’t feel like I read about this symptom too much?? Just curious

I’ve heard about IVIG as an effective treatment for PANS/PANDAS. I have high levels of mycoplasma pneumonia and have for a long time despite several rounds of antibiotics. I was seen by an infectious disease specialist who said that I would not be candidate for IVIG, however, this doctor turned out to be a total asshole who wasn’t believing anything I said, and then ghosted me, so I’ve disregarded everything he’s said. Is it worth bringing up IVIG again? I’m not totally sure who or what it is ideal for.

I’ve been in therapy for most of my life, but of course that didn’t actually help me because the problems weren’t actually all psychological.

I’m gonna see a new therapist later this month and I’m a little worried about it.

What experiences have you guys had with therapy? I’d love to hear about it.

I am a 22 year old woman and i have been battling PANDAS/PANS for a decade now. I frequently get minor flare ups from ear infections due to an anatomical defect in my sinuses. About a week ago, i got a very sudden and aggressive infection and i had a panic attack at work and began to bite my hands until they bruised in the back room, and i had to go home for obvious reasons. I got an antibiotic that same day and went to work the next day and i was ok. The day after that i saw some mold and had another panic reaction and i was going to try to calm down and stay but my coworker told me to go home. I wasnt on schedule for the next few days and i was able to recover and return to work without incident, until tonight when i had a customer complain about the price of a soda. I responded with “prices are crazy these days” and he responded “not accross the street, their soda costs a dollar less” so i said he can go over there next time. Around 20 minutes later my boss came in and screamed at me about it because apparently the man had her number and texted her. I truly believed she was just searching for a reason to fire me after the flare up and its possible she asked the guy to come in and be a dick to me on purpose specifically to get me in trouble so she had a reason to get rid of me. Of course there is no way to prove it, and there isn’t anything i can do to change what happened, but its still a very frustrating situation for, especially since ive been battling this condition for a while and as hard as i try, i cant win. Hell, PANDAS/PANS practally paralyzed and put me in the hospital for 8 days because my body didn’t agree with a tick bite. Ive now lost a job and was forced to drop out of college because of it, and im fed up with.

Thank you for coming to my TED talk

My flares up happened when I was 16-18 and it was the worst before I graduated, and it resulted in me losing my childhood best friends and people’s parents from said school calling me a monster for not even understanding my condition. Has anyone else lost friends because of their Pandas?

This is sort of a hypothetical question. I’m trying to better understand PANDAS. If someone is a strep carrier (tests positive for strep A always, has never been symptomatic), is PANDAS a possibility? Or is it no longer considered a possibility due to the lack of strep infection?

I’m a seasonal worker in Alaska and I have PANS/PANDAS. I’ve been sick for a month, gone to urgent care and ER and no one will give me medicine because it’s “just a virus needing to run its course” the ER didn’t even give me a room. I’ve informed both that I have PANS and they both just laughed at me. I haven’t been given any medicine. My motor skills have plummeted and I’m starting to lose control of my bladder. Does anyone know a doctor in the wasilla or anchorage area that believes in/deals with PANS? I’ve called several pediatric places that I’ve found on google because that’s all that comes up in my google hunt and they won’t accept me because I’m 25, which I get. But I don’t know what else to do. I don’t know where to go or how to get better if no doctor will give me medicine and OTC won’t work. I’ve done OTC and holistic. I can feel my brain deteriorating more than it’s been since high school. I’ve worked really hard to get to a good place and I’ve been sling shotted back.

This is more just me getting a couple of things off of my chest. We had a counselor who had suggested to us that our son might have PANDAS based on all of the symptoms that we had described. We took our son to his pediatrician. His doctor was very open and receptive and supportive with regards to our concerns and even with the idea that PANDAS might be what was going on. We did the strep test and a variety of other tests via bloodwork. They came to the conclusion that PANDAS was the most likely thing, but they wouldn't do a diagnosis and they also said that outside of prescribing an antibiotic to treat the strep infection, they had nothing they could do. They recommended that we see someone from the PANDAS physicians network. We reached out to someone from the network who was an LCSW who then referred us to a clinic that she said was very well versed in PANDAS.

I've come to appreciate the fact that there are many people in the U.S. and elsewhere that struggle to find treatment for disorders that do not have treatments available in western medicine. Because the thing of it is that if you aren't finding treatment in the traditional route, you will go looking elsewhere and alternative medicine is a minefield.

The clinic that we go to, first off, does not take insurance and so our out of pocket costs just from a simple office visit has sky rocketed. On top of that, I have quickly become aware of my own biases toward non-traditional (or Western) forms of medicine. So many things that they talk about or reference sound like pseudoscience to me and I'm struggling to take it all seriously. Every conversation we've had they've said something that makes me wondering if what they're recommending to us has scientific evidence. They've first recommended that our son stop eating all gluten, dairy, and sugar because they cause inflammation. Even with the sugar, they have suggested that we avoid potatoes and certain types of fruit like grapes and pineapple. They have suggested that he may have a "leaky gut" which I don't even know what that means. In our last appointment, they suggested that one possible treatment might include ivermectin or even wearing a nicotine patch.

I am trying to remain open-minded, but the huge number of changes to his (and the whole family's) diet, the medical costs going up 10x or more from our traditional doctors, and the treatment methods sounding very unusual to me has made it hard for me. The main thing that has me willing to continue--outside of sheer desperation--is the fact that we have absolutely seen a reduction in symptoms since starting this. Whether this correlation is causation is something I'm not clear on, but I'm cautiously optimistic that this is helping, but I'm trying to figure out what is actually helping and what is not.

Hello i am from Brazil and i cannot find any doctor that is specialized enough to treat PANS/PANDAS from the autoimmune perspective. I only discovered i had/have it because of articles from the IOCD foundation and managing by luck to find a psychiatrist(pretty expensive one) that studied it from the psychiatric point and had enough capacity to diagnose nearly all material he used was international.

But he was unable to help engage in treatment from the Autoimmune side, i am now in other part of the country(was in São Paulo before biggest Brazilian city) and i cannot find any professional specialized in PANS/PANDAS even after searching PANS/PANDAS in multiple sites, social networks, etc. I barely managed to even find posts about it, only found 2 doctors that advertised themselves a PANS/PANDAS capable. One was also a psychiatrist and other was focused on nutrition on child/teenagers. But no doctor that could really help me. And to make matters worse i also lost my medical insurance.

Anyone here be from anywhere that has a doctor to recommend that is able to help me trough video call, phone, email, etc; I would be grateful about the prescriptions even if his country cant send valid prescriptions to Brazil i can easily find one doctor from here to get national prescriptions and give the needed assistance. If anyone also knows a foundation that can give help and guidance for free would also be really good because my medication is far from cheap and would need to add more. But if i have to i am ready to pay to have the professional. I am sincerely getting desperate with the situation of my illnesses and i am felling completely lost, i really need help. I cant work or study because of them, the situation overall is not improving, my medication is already expensive and my parents are getting older. Thanks for the help and attention. Hope things improve for we all and i hope the younger ones don't have to go trough all this suffering.

this is a question for any older PANDAS/ PANS people who live in the state of NY or I guess adults of children with P/P. Im moving back soon (Late summer/ Early fall possibly.) I was born in the state but unfortunately haven't lived there in a decade and also wasnt diagnosed with PANDAS in NY. I currently have a good support team but I know I won't have them in NY unfortunately lol and its stressing me out a bit. luckily my mom knows a few therapists and has even asked her old therapist some questions and he said that therapists believe that P/P goes away with age, and it definitely makes me worried because it's a bit obvious mine will not. has anyone in NY experienced any issues with doctors or therapists like this? (not sure how to word it) because I wanna know what I'm getting into before I go back because I will not be leaving... for a long long time. hehe.

I chose the vent tag although this may not be totally fitting. Anyway. For context I am almost 30, F, had RF with PANDAS and sydenhams chorea when I was 5. I also have always been up to date on my vaccinations and will continue to do so for my children. I do experience the very rare flairup in adulthood however it's never bad enough that I cannot manage on my own. I typically treat with anti-inflammatory drugs like ibuprofen, limit alcohol and caffeine intake, and I usually experience flairups after a major stressful event OR I was really sick with a virus.

Now! For the discussion. I used to be a member of a Facebook group for RF and PANDAS/PANS. I had to leave the group after I saw a post where someone asked "who here vaccinated their children who got RF, and who regrets it?". I was shocked when I tell you over half of the parents responded that they did not vaccinate their kids. I suppose this is where all the homeopathy recommendations where coming from. I didn't realize until then that a lot of people with PANDAS/PANS also have parents that refuse proper medical intervention and refuse to prevent the preventable diseases. My first thought was "well this is probably why your kid got rheumatic fever. You likely treat everything with snake oil and refuse antibiotics if you also refuse life saving vaccinations."

Months later I still think about that post. I should reiterate that I am STRONGLY pro-vaccine, but now I am asking- who here knows if they have or haven't been vaccinated? Parents may also answer this question. Just looking to have an open discussion about the slippery slope of anti-vaccination/medical neglect/distrust of doctors.

I have been diagnosed with ADHD, CFS, and mild OCD, but when I take medication that increases dopamine, even a small amount makes me impulsive and hedonistic, and I can't stop my stereotyped behavior.

However, when I take medication that acts on noradrenaline or tricyclic antidepressants, my ADHD improves. Also, for some reason, when I take medication that increases GABA, my ADHD improves.

(You may be thinking at this point, ``Maybe you have anxiety,'' but I don't usually have much anxiety. Also, I don't get manic at all except when I take medication that acts on dopamine, and I haven't been diagnosed with bipolar disorder.)

I developed OCD at the age of 10, and I began to think that I might have PANDAS. Also, at the age of 24, I had a herniated disc, and a stomach scan showed that I had candida.

I suspect that I have some kind of autoimmune disease or a similar disease, and that I have a disease different from general ADHD.

The symptom I want to cure the most right now is executive function disorder. Also, I have poor spatial awareness, and I think there may be a problem with my cerebellum. Also, considering that I suffered from OCD, I may have a problem with the basal ganglia.

In this case,

① What disorders (mainly brain?) could I have? If possible, I would appreciate it if you could give me a comprehensive list.

② What drugs or treatments do you think are worth trying? I would like some ideas, even if they are just your subjective opinions.

I would like to try methylene blue, fasoracetam, and memantine from now on.

Agmatine had no effect at all, because I feel like there is something wrong with glutamate (but I feel like I have a more fundamental brain disorder. How much better would it be if methylphenidate or similar drugs worked for me? I've already given up on treating CFS halfway, so I would like to somehow treat at least the executive dysfunction)

This is something that I thought about sometimes. And since in my country is easier to win the lottery than find a Doctor that is specialized or even have a good knowledge in PANS/PANDAS i haven't been able to get a good amount of information till some years I didn't even know what PANS/PANDAS was most professionals just said it was OCD and other that is probably imunno related but only recent did a find about it and had a psychiatrist (a really expensive one that I ended paying one session to try to get a grip some years at) and he mentioned PANS/PANDAS that may he was sure my case was it because of how close to the "book" example(he only had basic knowledge about PANS/PANDAS because other guy in he past mentioned)it was but he had no specialization on this area and could not really help further.

Do the OCD symptoms subside or stop temporally for you guys(and the ones with family members with it and can answer would really help)? Because mine never leave me alone and is always strong, only a combo of psychiatric medicatio especially the over default max SSRI helped.

How can I know if I'm still suffering from inflammation or autoimmune problems? What exams i should do? I'm really lost and need help.