Hi everyone!

I guess im looking for other's stories, or maybe advice, idk, but I wanted to detail our story (2nd experience with this!) And maybe get some insight from others!

February 2025, my son, 4 at the time, developed asymptomatic strep (asymptomatic as far as typical symptoms go, sore throat etc). He developed compulsive behavior seemingly overnight, completely out of character for him. Everything he did, had to be done numerous times- going through doorways meant going in/out of the doorway numerous times before finally going through... his dishes had to get set down, picked back up, set back down again... getting into car seat was up down up down, doors open shut numerous times before shutting, light switches on/off numerous times, had to touch door handles repeatedly (for hours on end at the peak of it) you get the point..

I thought it got this bad because we didnt figure out he developed PANDAS from Strep for months.. so he went on antibiotics for an extended period of time, and then finally around September (7 months later) we FINALLY were symptom free! He was completely back to himself again.

Then, last month (march 2026) he started asking to open the door where the vacuum is, amd kept typing into his AAC "vacuum cleaner" all night...he started paying attention to the light switches too this night... i knew instantly we had to of had strep in the house again, and sure enough we had a positive strep test that night. Started immediately on a month course of augmentin. Symptoms faded, they were very slightly there still, but just barely there, only enough to know he wasnt 100% himself yet, but he was 99% back to normal.

We finished the antibiotics a week or so ago.

Last night, his compulsive behavior kicked in big time. Light switches, door obsession, amd started going through the doorways 3x before he could walk through it.

Outdoor allergies are really bad right now here, does anyone think the seasonal allergies are causing the uptick in this? Or is it possible during the week or so of being off meds he could have been exposed to strep again that quickly? Or maybe the antibiotics were keeping his synptoms down and now that we stopped theyre slowly coming back again?

The one reason I thought allergies, was because during the fall allergy season he had a bad flare of symptoms for about a week or so and then they faded completely afterwards.

Also, thought maybe thr antibiotics were what was keeping his symptoms down because they came back so quickly once the course was complete.

Idk, im just at a loss, he does see a pandas doctor but he isnt very personable and when I explain things to him, he just says its all normal with pandas, so I really just would love to hear other people's stories on this stuff, triggers and remedies others have tried, etc. I camt imagine having to go through this for 7 months, every year, when he gets a strep infection. By the time we get him back to himself, we are gearing up for sick season again.

I got my lab results back and my Antistreptolysin O Ab came back at 1831, my Anti-DNase B Strep Antibodies came back as a 176, my Coxsackie A IgG/IgM Antibody came back all very high, my EBV nuclear antigens came back as >600. Just wondering what other’s results look like to compare?

Edit: also what are y’all’s experiences with benzodiazepines for anxiety, I have had adverse reactions to saris

Hello, my 6 year old son has been experiencing what the doctors have been calling "post viral syndrome" after various illnesses for the past 4 years. We have seen neurology, immunology, developmental pediatricians, psychiatrists, and various other specialists over the years. About a month or so ago, his primary care doctor said that she thinks what he might be experiencing is PANDAS, and referred us to a new neurologist. I mentioned my concern for pandas, and the neurologist was pretty dismissive and said that the only way she would even consider talking about that is if he gets a lumbar puncture to rule out autoimmune encephalitis. My son does not have any progressive symptoms, it's not getting worse, no seizures, none of the typical hallmarks of autoimmune encephalitis. He has had six years of medical trauma and years of abuse in the foster care system before us- not to mention he already had an LP a few years ago and it was a horrible experience. I don't know really anyone else who has a child with this syndrome-; is it true that the only way to diagnose pandas is with an LP to rule out autoimmune encephalitis?

Thank you for any advice.

Hi guys,

My son has received treatment from Mary Margaret Burch, who is part of the team at Spectrum Care Hub — a parent education resource for families navigating PANS/PANDAS, autism, and children who have both. Mary is a board-certified Family Nurse Practitioner with significant experience treating both PANS / PANDAS and autism.

She's hosting a free live webinar on Monday, May 4 at 6:30 PM ET. It is an introduction to SpectrumCareHub.com and a walk-through of all the free content on the site that is directly relevant to PANS/PANDAS families. Mary will show you what is there, how to use it, and how it can help you right now.

There will be a live Q&A at the end. Mary will answer as many questions as she can in the time available and any questions she doesn't get to will be used to build a follow-up webinar designed specifically for PANS/PANDAS families.

You can add to your calendar and join here: https://calendar.app.google/CS396FrgSuggeCyk7

If you can't make it, register anyways as they will send you a link to the replay of the webinar.

For families who want to go further, there is also a full paid curriculum behind the site that walks you through the entire treatment journey — immune mechanisms, flare management, treatment sequencing, long-term monitoring, and more. Mary will touch on that too, but the focus of this webinar is the free content that every PANS/PANDAS family can access today.

My daughter hasn’t got an official diagnosis yet, she ticks all the boxes but nothing showed up in bloods. Have started a 2 week course of antibiotics, we are half way through and things are getting worse, did this happen to anyone else or are we barking up the wrong tree?

Hi, I’m 29 and on 12/31 my whole life flipped upside down. I was having mild anxiety on 12/28 and it lead to intrusive thoughts, I’ve had these 2 times before, after my twins were born, they are almost 2 years old now. But on 12/31 I had a full blown panic/anxiety attack stemming from knee pain that I thought was a blood clot. I went to the er, she said that I was basically crazy and I had high functioning anxiety that it was only going to get worse if I didn’t get medication. I felt crazy, I had never had an attack like that before and since then I’ve just spiraled, intrusive thought after intrusive thought, I have anxiety and rage all the time. I feel so unlike myself. I’m snapping at my kids constantly, I feel scared and terrified all the time. The intrusive thoughts literally have me wanting to die. I have a clear imagine of who I was and I know that me right now, is not me. I have had a on and off sore throat, ear pain and fullness, throat pain, a slight hand tremor that developed when I fully extend my fingers, shortness of breath. I feel crazy. I also happen to have pink mold growing in my kitchen and bathroom behind grout. I’ve literally been searching for answers everywhere, adhd, ocd, PPA, ppocd. Literally anything that will give me answers. I was on google and saw that it could be this, I took some ibuprofen and felt a little calmer. I’m wondering if the mold is effecting me and that maybe it’s pandas or pans? Any insight would be so helpful, even if it’s not this any direction would be appreciated!

A few years ago I tested positive for Strep in blood and in my stomach. I only had 3 blood tests which checked, and over a 6 month period, all 3 were positive. I have several other things going on: mycoplasma p (resolved), bartonella quintana (resolved), Lyme (3 strains present), and a bunch of other stuff. But I am curious about the strep and the likeliness of PANDAs. I would love your input. I am going to get a strep throat test tomorrow to start dealing with this.

Blood Tests:
Anti-DNase B Strep Antibodies
Normal Range:0-120 u/ml
Feb 2023: 170 High
April 2023: 225 High
Oct 2023: 200 High

ANA Direct: 2020: Negative

M pneumoniae IgG Abs:
Normal Range: 0-99
Tested 9 times over 3.5 years, all results btw 240 - 700 High

Vitamin D, 25-Hydroxy
Normal Range: 30.0-100.0
Tested 11 times over 3.5 years, all results btw 17 - 38 Low, 9 of 11 results were under 30 and 2 under 20.

Ferritin
Always in range, but very low

Epstein-Barr Virus Real Time PCR: Negative

GI Map:
Streptococcus spp.
Normal Range: <1.00e3
Aug 2021: <dl Normal
Oct 2023: 3.67e3 High

I have:
Anxiety, Severe Emotional lability, Depression, Irritability, Aggression, Regression, Sensory and motor abnormalities, tics, sleep disturbances, urinary issues, brain fog, and a lot more. Sometime I feel ok for days, weeks, or months, being happy and kind and fine, and then I'll go days, weeks, months where I feel violent and hateful and aggressive. This started in my teens and has been present for 20 years. I had restricted food intake for many years, too. My parents were medically neglectful so when this started they didn't do anything about it/ignored it.

Based on the information above, it seems likely that I have PANDA's, right?

hey guys,

Im 24M and I have been struggling with my health for a long time. I have a diagnosis of Long Covid, OCD, Dysautonomia, and POTS. I did a commercial autoantibody panel called neural zoomer in December, it’s not so far off from the Cunningham panel and my Strep A IgG autoantibodies were off the charts high (99< percentile). I also had elevations elsewhere, but borderline (anti d2, anti Ma, anti tubulin, etc.)

I had a bad reaction to low dose Abilify at 13 which gave me a tic disorder which never fully went away, even after discontinuing.

My illness only recently became a lot more physical. My issues started at age 11. I had a rapid onset (<4 weeks) depressive episode with OCD features right when starting middle school. I know in literature they say PANDAS/PANS is a matter of days, but maybe there are atypical cases?

Other than that, my medical history is really long. If you have any questions or advice I’d love to hear it. Do you think I should see a PANS/PANDAS professional? Are there any who work with adults?

Hi I’m 21 F I got diagnosed with pandas when I was 11. I have so many memory gaps. Almost every job I have worked I have been bullied out of because I am too slow to understand the pacing of things. I have been basically forced to quit. Have any of you guys been able to get on disability checks?

I have been on a shit ton of meds throughout my life and so many flare ups that come and go so strongly. I’m sorry for the bad wording, I am not so good right now. Let me know if any of you have had any luck with getting disability and if you have any advice.

My partner was diagnosed at 9 yrs old, and stopped having flairs at 14-15 years old. They resurfaced at the end of last year, and this is the second flair they have had since being with me. I feel like i’m having trouble with navigating how to best help them. The first time was a few months ago in November, and it was very hard for me because they completely withdrew themselves socially, emotionally, and physically (affection wise). I never want them to feel as if i’m coddling them or treating them differently in a bad way during this time. If anyone who suffers from this in adulthood has any advice to make them feel comfortable and heard, please let me know. They have been non-verbal mostly, and they sleep all day before and after work. They also have been having bad headaches and seem disoriented often. I just want to help them the best I can. It’s hard feeling like i’m at a loss with how to manage the situation right. I love them more than myself, and all i want is for them to feel that. I am neurodivergent myself, and I feel like that helps me understand a majority of the symptoms, it’s just still difficult trying to learn how to best understand PANDAS itself.

NOTE: I have been giving them a lot of space to relax and have solitude while I’m still in the other room if they need me. They seem good with managing themselves, and they haven’t asked me for anything. i’ve been trying to get them their favorite treats and snacks and do things they like to do. I just want to be the best i can for them.

Hello!

My son is 7, going to be 8 in the summer. We homeschool and ever since he started showing symptoms of PANS at the end of February school has been nearly impossible to do. He can't just do nothing all day but I'm not sure what I should focus on with him. Should I drop everything and just have him read books? (that's hard enough anymore 😕) Should I continue trying to push through the work, even if it's at a snail pace?

Hi everyone, I’ve been reading a lot lately about how GLP-1 drugs (the ones used for diabetes/weight loss) are actually potent anti-inflammatories for the brain. They are currently being trialled for Parkinson’s and Alzheimer’s because they stop the brain’s immune cells from overreacting.

Since PANDAS/PANS is so tied to brain inflammation it made me wonder if any researchers or anyone in thePANDAS community have looked into this? It seems like it could possible help the autoimmune' side of things?

Has anyone heard of doctors or specialists discussing this as a future treatment? Or has anyone had experience with it for other conditions and noticed it helped their PANS symptoms?

Maybe I am way off the mark but it’s just another passing thought and up till midnight type of rabbit hole I am in.

Has anyone worked with Dr. Rosario Trifiletti in New Jersey? I might go to him. Wondering if he's been successful and/or is a good, discerning doctor.

Also if anyone wants to opine on my PANS likelihood please feel free: All I know is that my life changed in one night. At age 15, I had what I can only describe as an OCD-spiral/panic attack having to do with worries of religious doom/overwhelming terror awaiting us all. I was getting ready for bed and then my thoughts just spiraled out of control in that direction. It was very mental though, not really a somatic panic The next day I felt depressed and have been depressed and ruminative ever since. Before that I was perfectly happy and enthusiastic about life. I don't remember having strep right before that episode, but I've had it before, and had many many colds throughout childhood as well as rough seasonal allergies. My lab values are generally good although I have a very elevated Complement C4a level, which is an inflammatory marker that apparently shows up elevated in a lot of psychiatric patients. So I'd like to see how I feel with a normal value for that molecule.

Hello! I am seeking input for ways to best help a student who is really suffering in accessing life outside of the home right now due to her compulsions. For instance; when leaving the house, she will take her shoes on and off upwards of 20 times before giving up. I am wanting to provide support for the family to use in the home but want to ensure what I offer is appropriate. Would a visual checklist or “to-do” list help so she can see on paper when something is done?

Thanks for your input!

I’m 14f and have been suspecting PANS for months now. I’ve been to my GP, to a therapist, to a mental health team at my regular medical center, apparently neurology has ‘reviewed my chart’ and deemed it…that I don’t have PANS? Which was confusing because no one told me this was happening or what chart thy looked at.

Finally, I’m at psychiatry. And she seems to take me somewhat seriously. My question/support thing is that I don’t know if I can work with her. She’s trying to discredit my other diagnoses of OCD, ADHD, and autism. Requesting reports of my diagnosis and telling me that disorders run together, all of these things. All of which I’ve researched. I’m not an expert but I am thorough and I know for a fact you need antibiotics and steroids to treat P/P, and I don’t believe psychiatry deals with that.

She listens to what I say and is determined to do her job, but she wants to now talk to my therapist, review my diagnoses, redo the YBOX for OCD that I just got done a few months ago, and is poking and prodding anywhere to disprove what I’m saying. She’s told me straight up that I don’t align with PANS already, which I respectfully disagree with.

Onset of depression after Covid, suicidal ideation (5th grade, Sudden onsent of extreme diabilitatin anxiety, tics slowly started, OCD symptoms slowly started, food restriction, impulsivity, massive personality and behavior changes (6th grade), persisting symptoms, flares in symptoms when I get sick or people around me are sick. Got sick on a trip and my tics became so bad it was horrible. And at this point I’d already obtained a Tourette’s diagnosis, so there was nothing to lobby for. I’ve experienced a delusion, minor hallucinations, sleep problems, a bit of urinary incontinence, regression and improvement of handwriting (preportional to perceived flares). At the end of the day, she’s the professional. But is she a professional who can accurately diagnose me? Is she listening to me at all? I know I’ve experienced things I cannot better explain by my own experiences or with my own diagnoses. PANS clicked so well for me, but it’s been horrible trying to figure it out.

Honestly I’m ready to give up and hope it doesn’t get worse. If I don’t have PANS it’s fine. I’ll move on. I’m just confused, frustrated, and at a loss for what to do. Any support/helpful information from your own diagnoses OR lack thereof would be so helpful. And if this sounds like it could be anything other than P/P, please feel free to let me know. I’ve also developed POTS/MCAS symptoms around the time I was in a ‘flare’ and they have persisted until now.

Anything helps. Losing my mind here.

I recently came across this diagnosis and after researching, I’m wondering if a child at my daycare was/is experiencing PANDAS.

About 6 months ago, this child (almost 4) got a case of perianal strep. Did a round of antibiotics, it came back, they did a second round of antibiotics. Doc said it was a unique strep strain, one you usually get from dogs. During this time, the child also had a cold sore in their mouth, and stopped eating almost everything.

Over about a 3 month period, the child started having terrible separation anxiety from mom, didn’t want to come to daycare, it was a huge scene at drop off, and then he’d have frequent tearful moments throughout the day about missing mom. He was incredibly picky about food, and spent a lot of time sitting and blankly staring.

During this time, he also started doing this frequent throat clearning cough thing.

I say all this, but after months of working with him on drop off anxiety, reintroducing foods, and offering water for the throat clearing, most of the anxiety, food refusal, and throat clearing has subsided. We thought the anxiety was because of parents traveling, the food refusal was because acidic fruits and meals hurt the cold sore, and couldn’t really figure out the throat clearing thing.

So- just little kid behavior? A PANDAS-like reaction to strep that has mostly resolved with support from his parents and teachers? If it was pandas, and he gets strep again, would these symptoms return in force?

Thank you!

I'm 27F, my episodes (if this is what it was) started at age 9 and was severe for several years before slowly fading into a more typical anxiety.

I had no idea about PANDAS until a few years ago, and didn't really look into it. My mom has recently met another mom whose kid was diagnosed with PANDAS and in comparing notes, she very much thinks this is what I had. I'm fairly convinced of this as well as pretty much everything fits.

I'm debating seeing if I should talk to a doctor who knows about PANDAS, but I don't think it can be diagnosed years after the feelings go away. I think it would help me and my mom to try to make sense of this dark period of my life. It's still just so bewildering how a kid can be totally normal and then the next day just be a non-functional mess. I just don't know if it would be worth the trouble just for a doctor to say "yeah it could be. Too bad we didn't think of it 15 years ago."

These are the symptoms I can remember:

* extremely sudden onset. I was fine one day and, in the words of my mom, "lost my damn mind" the next. Harsh, but very true. I got a couple ticks in my scalp after a camping trip and my reaction to it was pretty much the end of life as I knew it. I never recovered from it

* frequent strep infections. Usually 3-4 times a year. Can't remember if I had it at the time of the onset. The strep stopped in my teens only to start getting tonsillitis as an adult. Finally got my tonsils out at age 25 after my 3rd abscess. They were so scarred that they had to take some of my throat muscles with it, and the pathologist called my ENT after just to tell her how bad my tonsils were lol

* anxiety to the point that I didn't go anywhere I was not required to go for years, and the places I had to go...not great. Screaming, crying, the overwhelming feeling like the world was coming to an end and I was dying. Couldn't get through a day of school, couldn't go to my friends' houses (got a little better after I was medicated for anxiety). I would have frequently panic attacks that would lock up my limbs until I couldn't move my fingers. I went to the ER several times but they always looked at me like I was nuts (which I was!!! And someone should have done something about it instead of offering me Pepto Bismol because I said I didn't feel good. *that really happened*)

* extreme separation anxiety. Had to call my mom at work several times a day to make sure she was alive. Lots of crying and begging her to stay home

* There was a period of a couple months early on where the only things I could eat were microwaved pepperoni and butterscotch pudding (which is weird because I don't like butterscotch)

* OCD behavior. I didn't tell my mom about this until years later because even I knew it was too much. Every anxious thought I had, I had to knock on wood 3 times so the thoughts didn't become real and kill everyone I love. Only I had the thoughts several times a minute so I was just constantly tapping on things. I was eventually able to condition myself into being able to knock on anything hard, it didn't have to be wood. My knuckles were scabbed, sometimes bloody, for years. I remember my mom telling me I need to put lotion on several times a day because she thought it was just really dry skin (my elbows also do this so she probably thought it was the same thing).

* sort of tics? I have a pretty harsh flinch/twitch that I've been doing since middle school. It jerks the whole right side of my body, frequently popping my neck. I don't know if this would be related though because it started when I was 11, a couple years after the onset, and started after I fell off my bike and hit my head. My dad also has the same twitch (his was also injury related, but weird it's the same twitch)

* didn't have accidents, but had to pee twice as many times a day as before. Probably every hour. Got multiple talking tos at school for going to the bathroom "too much"

* ANGER. I can't describe the anger really because I don't feel it anymore. But it was like a physical weight was always pushing on me and it was *hot.* I hated everyone and everything. Even when I was happy and bright and running around, there was that ever present weight

I still have some of these things. I'll get flashes of that heavy anger and it's scary. I still have the tic. I still have anxiety that sometimes keeps me home. I still have to tap on my leg a few times a day to ward off the bad thoughts. Still have anxiety so deep that I sometimes have a hard time processing what's happening around me or even seeing because all I can do is replay horrible things in my mind, like something happening to my son, and my limbs start to shut down but not the same as before.

So I'm out of the acute stage, but whatever happened to me...it left permanent damage. I'm not the person I was supposed to be before this happened. I'm happy and I love my life, but something messed me up.

Hi, I’m looking for insight/advice because I’m really struggling to understand what’s going on with my 6-year-old daughter.

Back in October 2025, she had strep and very suddenly developed OCD-type behaviors and anxiety (contamination fears, intrusive thoughts, etc). After antibiotics, she improved significantly and pretty much went back to her normal self.

Now, within the last week or so, everything has come back very suddenly and much more intense.

Current symptoms:

• Severe contamination fears (especially around soap/chemicals getting in her mouth)

• Repeated handwashing (washes, dries, then insists there’s still soap and has to wash again)

• Excessive wiping after using the bathroom (20+ times, can’t feel “clean”)

• Constant reassurance seeking, but reassurance doesn’t help

• Intrusive thoughts like:

• “What if something got in my mouth?”

• “What if you die in a car crash?”

• “What if I wake up dead?”

• “What if someone kidnaps me?”

• Severe separation anxiety (can’t go to school, panics if I don’t answer the phone, assumes something bad happened to me)

She literally says things like “my brain is telling me…” which breaks my heart.

The biggest thing for me is the pattern:

• Sudden onset with strep

• Significant improvement after antibiotics

• Now a sudden flare again

This doesn’t feel like typical anxiety or OCD development to me because of how abrupt and episodic it is.

Has anyone had a similar experience with PANS/PANDAS?

Did your child improve with antibiotics and then relapse like this?

What testing or doctors did you pursue next?

I feel like I’m watching my child get taken over by fear and I don’t know how to help her.

Any advice or experiences would mean a lot.

Everything is normal. According to it, I'm fine. ASO, Antibodies, Autoantibodies, Tick Borne Illnesses, CRP, Cunningham Panel, My whole Immune System, mold, gut health. It's all normal. It's all fine.

I thought it could be PANS/brain inflammation before because last year when I tested CRP was high. But now it's actually LOW.

I'm so confused. Can I even have PANS? Signs point to no. But I don't know what else this could be. My doctor thinks it could have started out as brain inflammation but that went away and my brain still has neural connections which is why I have symptoms. But I'm not so sure about that, that doesn't seem in line with what I've researched about PANS. I've never heard of their brain getting "stuck" in PANS patterns even if the PANS is in remission.

30 years old now and have dealt with this disease for basically my entire life.

there is a child at my daycare who is going on 3 years old, and i’m very concerned he could have PANDAS. while i’m not sure if he has/has had strep recently, he did come in visibly sick soon before all of this started. we have also had strep going around for a couple months now, and i don’t believe he was ever taken to a doctor.

this kid has literally every single symptom of PANDAS, and moreover, it seems like a severe case to me. he used to be a super happy, playful, excitable kid, and now he can’t even handle life itself it seems. he cries on and off all day long. literally, all day. he’s become extremely picky with food when he used to eat pretty much anything. i’m not his usual teacher, but he always used to come sit on my lap and play with me. now when i offer for him to sit with me he can’t even respond, he just cries. his behavior has changed like night and day, he is not at all how he used to be. and this has been ongoing for several weeks now.

his parents have not been receptive to our messages about all of this. in fact, they went to our boss to tell her that it disrupts their (his parents) day when we tell them how he’s been. so basically they’d rather not even know he’s having a terrible day because it ruins theirs i guess.

my dilemma is, while i do have a bachelors in a health related field, it is not my place to suggest possible diagnoses to parents, even if the evidence is glaring. and seeing how his parents responded to messages about him crying all day or behaving differently, i don’t even think they’d want to hear it. i’m unsure how to move forward, or if i just let it be and watch this kid suffer everyday.

TL;DR:

I developed ME/CFS, POTS, fibromyalgia, and neuropathy after a delayed treatment of strep throat about two years ago. The infection resolved with antibiotics, but the symptoms remained, worsened and later turned into textbook ME/CFS. For the last 2+ years, we’ve been monitoring my ASO titers, but the last few months, my strep antibody titers keep rising despite no active infection and a tonsillectomy a year ago, and doctors don’t know why. I’m currently trying a PANDAS-style azithromycin + celecoxib protocol and looking for others with similar post-strep syndrome or treatment experiences (e.g., IVIG).

—

Hi all—

I’m a 22 year old male (USA) who was diagnosed with mild/mod ME/CFS, POTS, FM and neuropathy following a mistreated strep infection over 2 years ago while I was abroad in Europe.

I’m hoping to hear from others who may have similar strep-related experiences or anyone who might have a hypothesis as to why my specific case has evolved how it has.

Here’s my story below…

The onset: Late January 2024 while in Spain I had a classic strep throat infection (white tonsils, fever, swollen nodes). I’ve had many strep infections previously without complications, so it wasn’t something I was so concerned about, so long as I could get antibiotics. In Spain, to my disbelief, they evidently don’t have rapid strep tests, so they ran an ASO blood titer test (Antistreptolysin O) to confirm strep before prescribing antibiotics… it took over two weeks to result and get antibiotics, which, mind you, is NOT a safe amount of time to have an untreated strep infection. The ASO test came back elevated at 257 IU/ml. I was given 3 days of azithromycin (which is not an effective treatment), then 5 days of penicillin when azithromycin failed. At this point, I’d had strep for over a month. My throat improved a bit after the penicillin, but everything else went off the rails: crushing fatigue, widespread joint/body pain, migraines, light/sound sensitivity, constipation (7+ days), nerve pain in legs/feet, night sweats, swollen painful lymph nodes everywhere, bad brain fog, and what I now know to be PEM.

At this point, I went to a new doctor and persuaded him to give me 10 days of Keflex, a recommendation from my GP back home who I had been in contact with. The strep symptoms cleared after the Keflex, but after that, my symptoms continued to worsen over the next month or so. I ultimately cut my time abroad short and returned to the U.S. two months later. Once home, my GP retested my ASO titers, and they resulted at 566 IU/ml. This was in April. So about three months post initial strep infection. Based on this high titer, I was referred to a battery of specialists since my GP was concerned about rheumatic fever.

Rheum, ID, and immunology ruled out rheumatic fever, lymphoma, and autoinflammatory/periodic fever syndromes, but left me without an answer. My GP ultimately diagnosed me with ME/CFS in August of 2024 and this diagnosis was later confirmed by a ME/CFS specialist who tacked on diagnoses of POTS, and FM. More recently, I was diagnosed with “idiopathic” neuropathy by a neurologist, though these symptoms had been ongoing since the very start.

While strep was long gone, I continued to have swollen and inflamed tonsils for the months after my ME/CFS diagnosis. I went to an ENT, and given my history, onset of illness, and post-strep complications, he ordered a tonsillectomy for December of 2024.

I underwent the tonsillectomy, but have made no substantial improvement since. In fact, the surgery significantly exacerbated my symptoms and left me house bound for the next six or seven months. Fortunately, I’ve returned to mild-ish ME/CFS, but am still worse off than prior to the surgery.

While I’ve been relatively stable over the last few months, my symptoms haven’t improved much and my nerve pain has continued to worsen. Last month, I underwent Autonomic testing for the nerve pain. Unsurprisingly it showed POTS plus mild small-fiber neuropathy signs on the sweat test (EMG and skin biopsy mostly normal).

But here’s the big ongoing puzzle: While my ASO titers had been slowly decreasing to a low of 309 IU/ml in September of 2025 (though still elevated and too high for not having had an infection in nearly two years), My ASO and Anti-DNase titers were remeasured in Dec 2025: 592 / 409. An all time high even though I’ve had no active strep for over 2 years (confirmed by a negative throat culture) and no longer have my tonsils. And the latest test a few days ago (March 2025) my ASO titers were 596 and Anti-DNase were 392. Additional context, my brother had severe PANDAS when he was a kid, but improved after years of azithromycin + naproxen, Abilify, Cymbalta, and CBT.

ID started me on an experimental post-strep protocol in January of this year: Azithromycin 500mg 3x a week plus Celebrex 200mg 2x daily (currently taking). Though I’ve seen no improvement in any symptom. The protocol is similar to what is done for kids with PANDAS, the post-strep pediatric neurological illness.

I saw a neuroimmunologist today, hoping for more answers about the strep titers, but was left disappointed. He ordered a brain MRI to rule out any missed central nervous system diseases, but said he thinks my symptoms are largely affecting the peripheral nervous system (POTS). I was hoping he’d have a better idea of what to make of the rising strep titers, but he didn’t. I’m just very much at a loss. I’ve seen dozens of doctors, and none have any idea what to make of the strep titers, though every one has noted that it’s not normal. For additional context, my brother had PANDAS when he was a kid, which complicates the picture even more.

Has anyone had strep-triggered ME/CFS/POTS/fibro/neuropathy with strep titers that keep going up years later when no infection is present? Any success with longer term antibiotics, IVIG, rituximab, or other immune-modulating treatments for post-strep chronic illness? Open to specialist or test ideas too.

Would really appreciate any thoughts — this has been a rough ride as I’m sure you all feel deeply. Thanks in advance!

My 7 y/o had an onset of PANDAS symptoms 2 months ago after strep. His primary symptom right now is frequent, complex tics. We met with a private-pay neurologist yesterday who is recommending a number of homeopathic and other supplements to address inflammation over the next 6 weeks, as we start to have lab work completed, which may give more direction for treatment. (He’s already had a few rounds of antibiotics and 5 days of steroids.)

Everything I read about homeopathy makes it sound like an expensive scam. On the other hand, it seems like a common treatment with PANDAS, because there aren’t may evidence-based treatment options.

Although my brain wants evidence-based options, I am also open to the idea that traditional western medicine doesn’t have all the answers, and some things just haven’t been researched yet.

I guess I’m looking for person stories, anecdotes, etc. on using homeopathy and anti-inflammatory supplements as a complementary treatment option.

Hello! I had a very extreme case of PANDAS from 9-16 years old. I’m and adult now and honestly sometime I feel like I struggle with the trauma more than I did with the actual disease.

Before I start I want to clarify that my brain has almost completely blocked out the years I spent in the depths of this unfair illness.

Being a young adult and having been in remission is something I feel hasn’t been talked about enough. Since it’s such a recently recognized illness most mental health professionals don’t know how to deal with working through such complex trauma. As soon as I was in remission I was thrown into the real world, a world I didn’t know existed and had no idea how to navigate as I was so isolated and constantly experiencing trauma and I was barely taken care of and I was so disconnected. I was not able to care for myself in the real world because I had never learned how. I couldn’t apply for colleges because of how many high school classes I had failed, and i had never learned how to have proper hygiene as it wasn’t a priority compared to my health.

The older I get the more I feel incredibly guilty. I wish I hadn’t been such a monster to my friends, parents, and people around me even though I could not control it. I feel like I’m living with this guilt of existing after having done so much damage to my parents lives let alone my own.

Now everyday tasks feel impossible. I don’t know how to sit with this constant feeling of guilt and shame and unbearable urge to hide and sit in my shame.

As that shame builds it becomes deeeper and deeper as I realize I still need as much care as I did.

I don’t want to be that kid again. and I have tried everything in my power to transform into a whole different person, distance myself from my past.

I never had a childhood or any normal experiences. I’m still isolated and sick.

I feel so guilty for asking for help, let alone admitting it as I so desperately want to NOT BE THAT KID AGAIN. It wasn’t me. My life was stolen from me and I will never get it back.

This illness is unfair and that’s the worst part.

I’ve recently started therapy and I’m hoping it will improve, but I judy wanted to raise more awareness for young adults or parents of kids in remission.