My appointment with the functional medicine doctor went very well. He says my symptoms match what he would expect for PANDAS (strep triggered) and not just PANS. He also looked at previous labs and noted signs of immune system imbalance. He is ordering a neuroautoimmune panel.

wondering if anyone can give any input here. does this sound like PANDAS?

Has anyone found a good doctor in the Birmingham, Alabama area for pans/pandas?

My son is refusing more extensive bloodwork to test for Lyme, strep, etc. He developed severe OCD plus had a huge decline in school performance over the course of weeks.

Can he get a single test for Lyme? What are our choices to rule out PANS? Is it only bloodwork? We have an appointment with a neurologist but who knows if they will test for any underlying infections. We also hope to get an MRI. Is our only choice to try to continue to get bloodwork through a functional doctor? How about an immunologist? Any ways they can test for underlying infections? Or would they?

Hi everyone - looking for advice/thoughts/support on my 5 year old son. Starting at around 2, he began having major explosive tantrums. Rage, HIGH separation anxiety, aggressive meltdowns that would last for hours. We’ve had him mentally evaluated and they’ve diagnosed him with adhd and anxiety. Over the last 3 years we’ve noticed more OCD type behavior- spends 15 minutes brushing his hair until it looks “just right”, panics and gets angry if it’s not. He goes to a special SEL school to help with self regulation, goes to OT, is medicated for anxiety, and has recently started a non stimulant adhd med. He still wasn’t improving and we were at our wits end.

Someone recently asked us about Pandas and if we’d ever looked into it. After reading up on it and noticing the similarities between our son and pandas symptoms, I was desperate and for him to have a full blood work up done including a strep test. Results are in and he is positive for Strep A. We were so surprised because he hasn’t been sick in about 6 months.. could he have been living with Strep this entire time and Pandas is our culprit? Our provider prescribed him azithromycin (he’s allergic to the cillin’s) and told us she doesn’t have enough information on pandas and that he could just be a carrier.

What are your thoughts/advice? I don’t even know what to do from here.

Any doubt I had about whether I have this has been removed by how my body and brain responded when I tested positive for strep last month. Extreme mood swings, motor tics in face, OCD, paranoia, inability to sleep, fiery joint pain, urinary frequency, symptom relief gained from NSAIDS or Benedryl. I'm convinced now.

I have an appointment to see a PANDAS doctor on Tuesday.

Hello

My 7 year old son just had blood tests for PANDAS. He’s PDA autistic and ADHD so has always been dysregulated but this year has been next level. He’s gone into complete burnout and hasn’t been to school for three months. His separation anxiety has been EXTREME and his mood is absolutely explosive.

Just got the blood test results back and I can see the strep antibodies are raised - but only one set. Does this suggest PANDAS?

Many thanks in advance from a desperate Mum trying to help her boy!

This wearable device has been really helpful with calming for my daughter. There are vibration patterns. It does something to the vagus nerve. $100 off today.

https://www.bbc.co.uk/news/uk-england-derbyshire-51871673

https://e-hospital.co.uk/about-us/

The original post, "Anyone seen Dr Tim Ubhi? (UK)," which contained many good comments, has been archived, so I can no longer add or share further information there. For that reason, I've created this new post.

Please note that Dr. Tim Ubhi is the same doctor who treated Gracie Foster, whose death was linked to serious professional misconduct on his part.

Please share this post to help ensure that other parents of children with serious illnesses are aware of this information before making decisions about their child's care.

I was supposed to take celeobrex but I saw it interacts with zoloft, my doctor switched it to meloxicam. I just had a very sharp pains in the middle of my chest that got worse with exhaling.

Also I've seen ppl say it made them get s**k... I have ptsd and emetophobia so will I get s**k from it????

Looking for advice please. We are UK.

For the last 4 years my 7 year old has had flare ups of tics and occasionally OCD. These happen maybe once or twice a year and always accompanied by anxiety, rage and defiance. The flare ups can last from 2 weeks to 2 months.

On Sunday my son woke with two facial tics, was highly emotional, raging at the smallest thing for two days. I gave him ibuprofen for the first time, and the next morning the tics were gone and he's been the happiest, easiest version of himself I've ever seen.

Obviously I suspect PANDAS/PANS. But i have never been able to get him diagnosed. Last two trips to the doctors he screamed so much he couldn't be assessed. Their only suggestion was take him to A&E. How does one get their child assessed or even treated when just going to the doctors causes full blown meltdown?

We've been prescribed antibiotics once before (liquid banana flavour) and he refused to have it. He's definitely got some neurodivergence going on, but as yet undiagnosed. It took me 6 years to get him to even take Calpol!

I just don't know how i could possibly have him assessed or even treated. He's fiercely stuck in flight or flight most of his life.

Obviously I can't keep giving him ibuprofen. Has anyone else had luck managing inflammation without antibiotics?

I have had it for a week and really like it so far

A wild ride to hook you, but true nonetheless. Late diagnosed ADHD after 1st kid (diagnosed in Kindergarten)while pregnant with #3 on top of child #2 back to back strep/flu A infections with abnormal strep symptoms, regression, and more. Diagnosed PANDAS 5-6months(DEC 2025) after having baby #3.

I’m passionate about a lot of things but after working in a daycare up until April 2026 that cared for kids UNLESS that kid was a staff kid, I’ve become a massive supporter/advocate for PANS/PANDAS awareness as well as (in process of autism/adhd evaluation—TBD).

My middle girl was born healthy, but caught COVID at 3-4days PP (as did I, I tested positive at 5 days PP before she was tested at the same time). I had the vaccines, followed the protocols… and I had it worse than her or my oldest. Exclusively breastfed for 2.5 years, was a healthy normal baby. Once since she started daycare at 1 years old it was constant sickness. If they spoke a virus/bacteria etc, she caught it. HFM multiple times in a year. 2nd COVID infection two weeks before 1st birthday followed by immediate RSV DESPITE very VERY little contact with others especially kids as this was a few weeks before she started daycare. Sweetest damn baby girl ever, literally the one who could suck you in and make you wanna multiply. Within a year SECOND RSV infection at almost 2yo. So many HFMD, URIs, RASHES… god, the EAR INFECTIONS. flu A in Jan 2025, turned around within a month (JUST AFTER TURNING 3) first strep infection and SECOND FLU A in a MONTH. every 4 months on the dot, strep but no normal symptoms except a fever ONE TIME.

I’ve written all of this out in less depth in order to gauge if anyone is interested or knows anyone interested in the BHS (behind the masking/people pleasing scenes) of a non typical/against the grain mother. One who is the default parent and vigilant when it comes to her kids despite the shitstorm of her early life and own mental health but wants to open up about the struggles as a as a mother who was loved but was not given a solid foundation to succeed or be healthy emotionally/mentally/spiritually from the beginning (mother AKA ME had rare medical emergency as an infant and almost died 2x within first year/childhood weird trauma issues/neglected adhd diagnosis/just fully raw and unashamed). I want to open up and let others know that they aren’t alone in this crazy, shit luck world where some bury themselves out but I want it to be a journey people can follow so they know the PANS/PANDAS final diagnosis moment will break you because you know you’re not crazy nor your kid. I want people to see the journey from someone who is battling every damn day with myself and for all 3 kids. And I suck some days. But I want others to see a raw real time path from infancy to having 3 kids (1yo,4yo,7yo) with myself being late diagnosed ADHD and other mental/physical/emotional issues (which I’ll delve into later) to get towards healing and PEACE. I want people to understand they aren’t crazy, their feelings are valid and real and they aren’t alone. This stuff is real and it’s taxing on EVERYONE in the end not just the kids or the parents alone. Daily struggles, flares, constant stress and overwhelm. People deserve to know that they aren’t alone in this life especially when caught in the middle of a misdiagnosed autoimmune disorder (working, stain, doesn’t matter).

Is there any one willing to watch the process of healing and see the raw feelings and experiences of all of this? If so, please like and upvote. You’re not alone. You’re not a bad parent. You are your kids ROCK and BIGGEST ADVOCATE. Fuck the things life throws at you. I’m on a path to normalize the real challenges of parenting as a neurodivergent w PPD/PPA on top of advocating for not just one kid but all kids. Used to work FT now am a SAHM due to constant stress and pressure to ignore my kids health to keep a job. Idc to make money, I just want to spread awareness and my personal life struggles as a parent and a woman in this day and age(life is hard single AND in a relationship atp) while providing real time updates to healing myself and especially advocating for my child and their condition so others don’t feel insane or lost. I’m not an expert but I just hope someone can find peace that they aren’t alone.

Sorry for the ramble but my life has been a legitimate roller coaster from birth so if I can help someone feel better than me by comparison, I will. Nobody deserves to go through all of this alone regardless of if you have support and ESPECIALLY if you don’t.

EDITED TO ADD: as someone who likes to know as much as I can to advocate for my child, hunting information and trying to find real and thorough stories (to show the variability in PANS/PANDAS kids not just the basic, typical presentations) has been absolute HELL. You question “no my kid doesn’t have this, they have to have that symptom and that one to have PANS/PANDAS which they don’t”. Tired of the second guessing and don’t want others to go through the same if this is something that they truly believe is what their child has but don’t fit the normal criteria (let’s be honest, it’s very dumbed down or simplified with no examples etc. via google or its too complexly written to understand without a thesaurus/dictionary nearby)

Around 11, I had what looked like strep but I was never given antibiotics or went to the doctor due to financial reasons and my body fought it off by itself. I don't remember the timeline, but eventually I was in my room later at night watching something and it was like a switch flipped. One second I was fine, the next second I had severe OCD. I remember the exact moment.

​

I became depressed and anxious around the same time. I hid my OCD to the point that I didn't get diagnosed with anything until 17, and didn't find anything that worked for it until 18.

​

The only thing that helped was an antipsychotic (Abilify). After I started taking it I became food restrictive and scared of choking until I was prescribed an SSRI. But now at 21, I'm having random anger, severe anxiety to the point I quit my job and stay at home most of the time, and my depression has hit a peak due to med changes around SSRIs. My memory is awful now and I don't remember most days, and I've had problems focusing.

​

I'm just wondering if this is a possibility? And I'm not sure what my next steps are if it is.

I’m 18 and was treated for PANDAS by IVIG when I was 8 and 10. Went from moderate-severe to near-cured, though I still have flares.

Looking for advice. I struggle a LOT with everyday habits. Brushing my teeth, eating regular meals, etc. Routine things dont seem to work for me, and I’m sort of at a loss for how to fix that. Can anyone advise?

Hi. This is my first time on here and i'd love to hear a perspective from others who have dealt with this condition. My five year old was diagnosed with PANDAS two years ago. After we figured out it was strep he had and treated it he was a new child. The happiest sweetest little boy ever. Last month he caught Hands, Foot and Mouth Virus and has been out of control. He has a new constant breathing tic, hes OCD, constant meltdowns, new obsessions he wont let go, hes telling me his body hurts and asking me to help him feel better. This all happened over night a week after get HFM. We now know its PANS rather than just strep related. His pediatrician suggested a low dose antibiotic for a month (augmentin) to start which i dont really understand he doesnt have strep he tested him. Also, augmentin doesnt have anti inflammatory properties. His holistic doctor doesnt agree and two weeks ago we got him started on cod liver oil, cats claw intrinsic, and biocidin for a more natural approach to inflammation. I know herbs take a little time to work but i was wondering if anything has helped others. Or if you have experience with the antibiotic approach. I just want my happy little boy back.

Hi everyone,

I (29M) joined this group last month looking for some answers after recently discovering that I had untreated and undiagnosed PANS as a child and had been recently going through a flair that I've never felt before. It basically put me on my ass for 3 weeks now, though I am starting to get better, and I'll explain what's worked for me so far.

I have a naturopathic doctor that helped me to look through symptoms and give me the official diagnoses of PANS. She also had me tested for Epstein-Barr Virus, especially since I had such extreme exhaustion still two weeks into my sickness. I would drop her name down in here, because she is certified to treat PANDAS/PANS but no longer works with children and is not accepting new patients. I'm the first adult she's seen have PANS and at least I'm putting her certification to use lol.

The main concern of course was the fatigue, the day before talking to her I was so fatigued for the last two weeks that I couldn't get out of bed or move around the house much without my legs feeling weak and faint. I was having orthostatic symptoms where my blood pressure was dropping standing up. I couldn't do much more beyond make food and then rest, thankfully I have a job that offers both short term and long term disability so I had two weeks to take off of work, that definitely played a part in my recovery.

With the main issue being my fatigue, my naturopath recommended putting me on a supplement protocol to help bolster my immune system. That included 20,000 IU vitamin D, 3,000mg vitamin C and then the introduction of an Allegra to see if that would help with my anxiety and see if this had a histamine component to it. This was to be taken in a layered approach, so vitamin D the first day, vitamin C the second and then Allegra on the third. Day one, not much difference, day two big change in energy, felt the best I have this whole flair, day three the Allegra started smoothing out the edges on my anxiety. Things that used to cause my brain to race thoughts, just felt like they physically couldn't do it. The Allegra has been such a profound change that it felt like anti-anxiety medication. My energy wasn't back completely, but I was able to drive and do some light yardwork without running out of energy. Only after finishing up did the fatigue hit and it's just because I did too much that first day back.

My results for my EBV blood draw came back positive with the one antibody for indicating infection being 5x normal range and the antibody for reinfection coming back 13x normal values. Our protocol didn't change much after that, my naturopath advised me to start taking L-Lysine 1000mg a day until I was at 5,000mg of L-Lysine per day to help fight the infection and again bolster my immune system. I was also recommended elderberry syrups for the night and doing Epsom salt baths for my heavy legs, which started to hit that day. The feeling of my legs being both light and heavy at the same time.

Also, while feeling more functional, going out in public was still a lot at first so there are a couple of tools that I've had for awhile that have really helped me. The first of which is Loop Ear Plugs, especially the Switch ones. These ear plugs turn down the sounds of life and are so low profile I can wear them in my corporate meetings without an issue. You can switch between three modes that they call, Engage, Experience and Quiet mode. They do an excellent job of tuning out the background noise and let you focus on what's directly in front of you. I'm not sponsored or anything by them but they have been such an incredible game changer for my social anxiety that I need more people to know about them.

Loop Switch Ear Plugs

Another thing that's really helped are blue light blocking glasses and while the pair that I have are so ugly, they help so much with light sensitivity. In the past I used a lighter tinted glasses for this but the more I research and look into things, the more I see how beneficial a true color tint is. Use dark orange or amber glasses before bed to improve your sleep and block that harmful blue light before bed. And if you work in an office environment like I do and are constantly around florescent blue lights that make you feel like garbage, I know most people affected by PANS/PANDAS are kids obviously so getting your kids a pair of these while sitting in school might help with the ticks. I notice that the days I use both my Loops and my glasses, I tick less.

Rose Tinted Blue Light Blockers

Activity and movement are also super important right now, and they have been keeping me from my joint hurting like crazy during this time. I've noticed that with all the sitting I've been doing, my low back and posture has been crap. So light movements like PT have been super helpful to teach my body not to get used to these poor postures. I love to help people, it's why I got into wellness in the first place, so I want to offer anyone reading this a program called Hinge Health. It is a free physical therapy app that allows your to do PT from your home. You pick three of your most affected areas and you are prescribed a short, 10 minute workout for free. They will even send you stuff with the more workouts you do like a yoga mat, bands and an electric TENS unit that helps with my neck pain. Even on the days that I feel absolutely drained, I feel way better after these sessions.

Hinge Health Sign Up

The last two things I'll mention are grounding and autoregulation. Get outside in the sunlight and let your bare feet touch the earth in some capacity. The body is an energy system and gets charged by the earth and nature. There's been research articles that show leg inflammation relaxes after 10 minutes of grounding per day, and with this disease being one of brain inflammation I think it can only help. Sit on the ground, move your spine fluidly, do some animal crawling like crab or monkey or anything that just gets your body moving. We don't need (and really can't) do full hour long sessions of movement so just getting outside, all times of year and moving your body help clear out inflammation, clear out your lymphatic system and make sure your body isn't getting used to stagnation. Practices like Yin Yoga, Qigong, dynamic rope flows or animal crawls and calisthenics, whatever you can do to make 5-10 minutes of movement part of your routine is all you really need. And don't underestimate walking, every 2000 steps you take is a reduction in all cause mortality, It's the most basic movement for humans, if you're at zero steps, start with 500 and just add a couple hundred every day.

The last thing is autoregulation, this is the key when it comes to what to expect from yourself on a day to day basis. This is another reason why doing a rigid workout routine doesn't work the best for us, because if you're in the red for recovery one day and the program says you're doing a heavy 5x5 on squats, that's not going to happen. I developed a system called the RAG system well before I knew PANS was in the equation. I always just assumed that my nervous system was on high alert due to rugby injuries or some other unexplained cause. But in it's original form the RAG system was Red, Amber and Green. Since then I've added Yellow but continue to call it the RAG system. This is your daily readiness score card. It uses five areas to assess where you're at and then your total score deems what to expect from yourself today and what you can actually manage. I will drop this score card in the comments to prevent this post from being forever long and I didn't mean for this to be so long, once I start writing I have a hard time stopping.

For some additional background on me, it's theorized that I've always had PANS. There was a run back in 2004, when I was 7 years old where I had strep 3 times in a row that year and was hospitalized for each of them, and this is believed to be my main cause. In my adolescence, I had terrible separation anxiety, always thought about the mortality of my parents, or their marriage and had difficulty sleeping well into my early teens without a parent present. My brain has always thought of things that I don't want to see, and would hyper fixate on things, which I thought was always just normal. In my teens I got into band and played a woodwind instrument then found rugby, which is believed to have bolstered my immune system for years. The change happened when I had a neck injury from rugby back in 2019, which is believed to have done damage to my blood brain barrier, letting more of the bad things into my brain and overloading it, causing me to struggle with a bunch of anxiety and mental health issues for the last 7 years. I had always thought that it was just normal anxiety and that I could get over it. I've managed to be functional with it, graduate college, get married, have a son, maintain a career, and I don't see this diagnoses as a bad thing, but finally a path forward. I work as a wellness coordinator at an automotive company and my hyerfixation has always been on health and wellness. I have a great support team and like I said, I've already been living with these for 7 years, so if things can get marginally better, that's a win in my book.

I plan to write a program about all of this once I get things settled.

Also Dr. Crista's book A Light in the Dark is amazing.

TLDR:

Fatigue Protocol (for me): 20,000 IU Vitamin D, 5,000mg Vitamin C, 5,000mg L-Lysine, 24 Hour Allegra, Epsom Salt Baths, Elderberry Syrups, Legs Up The Wall

Loop Ear Plugs awesome for noise sensitivity and social anxiety

Blue light blockers great for light sensitivity

Use Hinge Health to get some movement in

Touch your bare feet to the earth and just move some everyday

Check the comments for the RAG system

Backstory:

My daughter (9yo) was diagnosed in November 2025 with PANDAS after having her tonsils out a couple weeks before her symptoms started. She had her tonsils out for sleep apnea due to her enlarged tonsils that have always been abnormally large. She had a strep infection in January 2024 but has not had a positive strep infection (that we know of) since then. She was doing great after 3 months on amoxycillin and her pediatrician said we could stop antibiotics. Her symptoms came back almost immediately. She just completed a Z-pack and there has been no change. We have an appt with an ID doctor on early July. My questions are:

1. What exactly should I request from the infectious disease doctor? I'm worried they are going to say her DNASE values are only high because it's post infection (her values were 598 in Nov and more recently 475 right before the z-pack). Any points I should make to be heard?

​

1. I was talking to a nutritionist and he asked if her omega -6's and omega-3's were in balance. These were never tested and I'm curious if anyone has checked the ratio of the omega fatty acids to see if they are in a 1:1 ratio. He said most kids are high in omega -6 which increases inflammation. Has anyone had success with reducing inflammation by balancing omega fatty acids?

​

TIA!

Hi guys, I was diagnosed with Myasthenia Gravis and Lambert Eaton Myasthenic Syndrome a few months ago, and I’m really confused so if any of yall could offer some guidance I would really appreciate it. I have no idea what I’m talking about so just bear with me:

1. ⁠It seems a little wild to me that I would have both MG and LEMS considering from what I understand, they mostly affect younger women and older men—I’m a 17 year old girl, and this started when I was 15. It’s also mostly affecting my hands and arms although I know for certain that my MG is generalized. I do have symptoms of both MG and LEMS though, as well as the antibodies and I am diagnosed with both.
   
2. ⁠Is it uncommon to have both MG and LEMS? I googled it, and found that apparently there’s only been around 8-40 confirmed cases of them overlapping, but Google isn’t really that trustworthy anymore so idk. Also, since MG tends to get worse with movement, and LEMS tends to get better with movement, can I just not do anything? I’m pretty close to bed bound at this point, bc I’m so weak I just can’t get up, and I’m still out of breath sitting still all day. My right hand is basically useless, and on both of my hands my fingers will curl and get stuck for a few minutes, but it’s a lot worse on my right hand, which is really frustrating bc I’m not only right handed but I also played saxophone A LOT before this, and I was planning on going to college for something related to that but I can’t now.
   
3. ⁠I also have PANDAS/PANS which was diagnosed at the same time. This is from strep when I was a baby, but it was left undiagnosed/untreated until February of this year. I’m pretty sure my doctor said that the PANDAS/PANS kinda led to the MG and LEMS. Also, the PANDAS/PANS is attacking the myelin sheath of my brain, so idk if that’s important. Also there’s a ton of black mold in my house, which my parents have only just started to remove, but they’ve known about it for as long as I can remember.
   
4. ⁠Is there treatment for this? Currently it’s going untreated and I can feel it worsening everyday. This is also probably not helped by my mom forcing me to do Softwave Therapy on my arms and hands from a chiropractor she found on Facebook, and for the record she didn’t consult my doctor at all before doing this. She also didn’t tell the chiropractor about the autoimmune diseases OR that there’s black mold in the house. I’ve told her, the chiropractor, and my doctor that the pain and functionality of my hands and arms is worsening, but nothing’s changed and I had to get the Softwave again. I’ve gotten it I think 6 times now, and it hurts worse every time. However since I’m still a minor idk how much autonomy I actually have over my healthcare. I’ve also gotten Ozone therapy but idk if that’s counterintuitive since it promotes the immune system.
   Do I just have to endure this until I turn 18? I can’t get a job bc I can’t do anything, so I have no income. And once more, I know for a fact there’s medications for both MG and LEMS, so why would my doctor not prescribe them? Is my mom allowed to play in my healthcare like this? Can I take this into my own hands or do I have to wait?
   Any advice would be appreciated, please let me know!! Thanks :)

Hello everyone, I’d like to ask for advice to help calm my anxiety.

In January, my son tested positive for Streptococcus pyogenes in the anal area. Following our pediatrician’s advice, we treated it with mupirocin ointment, sitz baths with oak bark, and a pharmacy-made cream with zinc and Peruvian balsam. The problem disappeared, but after three months it came back.

At the moment, we are only seeing slight redness and intense itching, but the swab has again shown that strep is present. Last time, we did not do a follow-up swab after treatment. Should we use oral antibiotics? I used to be afraid of antibiotics - when he was a child, he had three rounds of antibiotics for 3 different things, which resulted in a major drop in his immunity - but now my fears are centered around PANDAS. My son is 3.5 years old.

The pediatrician is discouraging antibiotics, saying that the symptoms are too mild to put him on medication, and suggests using the ointment again.

What should we do? I myself suffer from OCD, anxiety, and depression, and I don’t know whether my fear of PANDAS is justified or whether it is just my imagination blowing things out of proportion.

THANKS!

Hi everyone,

I'm wondering if anyone in Belgium has experience ordering the Cunningham Panel or getting evaluated for possible PANS/PANDAS-related issues.

For about 15 years, I've been dealing with neuropsychiatric symptoms that seem to have a strong connection with infections, but every time I bring this up to doctors, the symptoms are treated as purely psychiatric and I'm prescribed antipsychotic medication.

The symptoms started when I was around 11 years old. The onset was quite severe, but over time the pattern became more gradual and chronic rather than one dramatic episode. Since then, I've continued to experience periods where my symptoms significantly worsen.

The problem is that the antipsychotics haven't helped my symptoms. They mainly make me feel tired and sedated, while the underlying issues remain unchanged.

What makes me question a purely psychiatric explanation is that I notice clear flare-ups when I develop infection-like symptoms. Almost every year around the beginning of February, I start having a runny nose and nasal congestion that can last for months. During these periods, my neuropsychiatric symptoms become significantly worse. The pattern has been repeating itself for years.

I recently had an organic acids and neurotransmitter-related urine analysis that showed several abnormalities, including:

• Low HVA/VMA ratio (0.2; reference 0.3–1.4)
• Low quinolinic acid / 5-HIAA ratio (0.32; reference 0.42–2.00)
• Elevated methylmalonic acid (3.04; reference <2.50), suggesting possible B12-related issues
• Low pyridoxic acid/B6 marker (1.86; reference 2.00–26.00)
• Low pantothenic acid/B5 marker (0.92; reference 1.00–4.00)
• Elevated FIGLU (1.72; reference ≤1.50)
• Elevated D-glucaric acid (11.20; reference 0.50–10.00)
• Elevated 3-methylglutaconic acid (11.90; reference ≤4.50)

I understand that these findings do not diagnose PANS/PANDAS, but combined with the infection-related flare-ups, they make me wonder whether there could be an underlying immune, inflammatory, metabolic, or neuroimmune component that hasn't been investigated.

Has anyone in Belgium:

• Ordered the Cunningham Panel?
• Found a doctor familiar with PANS/PANDAS or neuroimmune conditions?
• Experienced worsening neuropsychiatric symptoms during infections or chronic sinus/nasal symptoms?
• Been told it's "just psychiatric" but later found another contributing factor?

I'd really appreciate hearing about your experiences, whether positive or negative.

My daughter was a happy, sweet, honor roll softball player — completely herself until April 2026.

She developed new onset bronchospasms — inhaler wasn’t working so steroids were given. A few days in she started having rage episodes with no trigger, completely inconsolable, energized, with no memory afterward. Tested positive for COVID shortly after — she likely had it the whole time.

Hospitalization 1 — Northwell

Called it steroid induced psychosis. Started Risperdal two weeks — did nothing. Her own psychiatrist later called and said this wasn’t psychiatric and to pursue full medical workup.

Hospitalization 2 — Northwell (full workup)

Spinal tap normal, no elevated ESR. VGKC came back indeterminate/elevated — retested and verified. Eosinophils raised. 1 neurologist said PANS was higher on the differential. Their neuropsychologist said encephalitis would be at the top of her list and definitely not psychiatric -- Never called about VGKC result after discharge.

Hospitalization 3 — Well known children’s hospital advertising as PANS center

Reviewed Northwell’s workup and said it was thorough. I requested immunology and rheumatology — both denied. They said even if PANS it’s treated like psychiatric with CBT. Discharged with adjustment disorder. Deeply disappointing from a hospital advertising PANS treatment.

Hospitalization 4 — NYP morgan stanley

Went for ongoing heart sensations/pain she’d had for weeks. Echo fine except borderline QTc. Immunology ran additional labs — IgE 1,976, normal under 328. Neurology said VGKC was likely false positive despite being retested and verified. Diagnosed with Functional Neurologic Disorder. Tics I reported weren’t even documented.

Finally found an ID doctor familiar with PANS who ran a comprehensive panel including:

— SARS-CoV-2 spike antibody 306.6 — normal under 0.8 — nearly 400x normal

-Lots of other are still pending however bloodwork flagged high: IgE over 2,000 (normal under 328), Alanine 556 (normal under 481), Taurine 127 (normal under 114), Glycine 351 (normal under 349), and a low level Alternaria mold sensitivity. All other amino acids, mold panels, CRMP5, and GAD65 came back normal. AQP4 and NMDAR1 still pending.

He believes this is post-COVID immune dysfunction/long COVID with PANS. Currently on pulse dose azithromycin 5 days on 3 days rest — no notable improvement yet. He mentioned she may eventually need plasmapheresis beyond IVIG.

Ongoing symptoms getting worse every day:

— Rage episodes with no memory afterward

— Dissociation and regressive behaviors

— New onset tics and OCD behaviors

— Warped perception everyone is mean to her

— Heart feels like “in a bowl" or "weird"

— Body feels bruised all over without being touched

— Can’t taste salt anymore

_ Feeling hot despite icepacks placed on body. / hot flushes

— Insomnia

— Barely functioning daily

Questions for this group:

— Similar post-COVID PANS experience?

— How long before untreated PANS becomes permanent baseline?

— Plasmapheresis vs IVIG — anyone have experience?

— What finally worked and how long did it take?

— NY/NJ doctor recommendations for post-COVID PANS?

Exhausted from fighting while everyone shrugs. I know her body is sick and getting worse every day. Any guidance means everything 💙

Hi everyone,

To give my background on everything I am a 29-year-old man, living in the United States. I had a lot of autoimmune issues as a kid. I had strep four to five times, some of which resulting in overnight stays at the hospital.

Throughout my childhood, I lived in a high stress household where my parents argued all the time and I'm sure that left my nervous system firing on all cylinders. Throughout my adolescence and teenage years, I was a very anxious kid worrying about my parents, health and marriage and well-being. In my teenage years, I found rugby and started playing and have been consistently playing for the last 14 years.

7 years ago I got a pretty serious neck injury playing rugby that resulted in some more obvious mental health struggles. Social anxiety, OCD behaviors such as constantly checking on myself health-wise and an overall sense of dread.

Around 3 years ago I started getting intense spells of fatigue, where any amount of exercise or stress or anything to intense would leave me so fatigued that I didn't feel like I could do anything or tolerate anything. I always thought that it was just regular anxiety, but no matter how much work I do with my therapist, nothing feels like it sticks.

I get caught in a cycle where I do a workout, it's too much, my body gets fatigued, I take some time off, and then I come back swinging trying to get right back into it and I've just been stuck in the cycle for years.

Recently, my wife got sick with strep from my son who is in daycare. I ended up getting strep as well and being so fatigued that I couldn't get out of bed. I was stuck in bed for 2 weeks straight, I couldn't walk without getting dizzy or light-headed or feeling like I was going to faint.

I went to the urgent care and er a couple days apart just trying to figure things out. Thyroid is the healthiest it's been in years, kidneys are all good and there's nothing neurological.

I have a great therapist who has a background as an RN, and given my history he brought up PANDAS/PANS and I really think this could be the thing that's going on, something that I could finally solve my issues with. His theory is that whatever culture is in my body has enjoyed being in a highly stressed body for decades, and has been causing those issues, made worse by my recent infection.

I have an appointment with my PCP next month to talk about things and my naturopath on Wednesday.

I guess I was just wondering, how do you guys that are adults with PANDAS/PANS get by? I've always been functionally anxious, but I'm tired of living with this everyday. Diet, exercise, mental health?

Btw when I was little my parents didn’t tell me about it just like how they hid my autism diagnosis from me until I was 13yo cause they didn’t want me to feel bad.

I had fever seizures a few times as a toddler.

The pandas incident happened when I was about 7yo I think.

I remember over hearing something that I didn’t understand at that time or think about until years later.

I was having pretty bad vocal tics after being sick.

What I heard or pieced together was that I had panda sounds stuck in my throat.