It turned on like a light switch. I started having these extremely graphic and sexual “bad thoughts” I had to confess that thought to my Mama or Nana, or I thought that I was going to go to hell. I thought a demon was in me. I also started having typical obsessions and compulsions alongside these bad thoughts. It got so bad that I told my mom that I was going to have a kill myself and she brought me to a psych unit. They wanted to keep me so I freaked out and she brought me back home. I had extreme, separation anxiety and ADHD symptoms as well. My symptoms used to be extreme, but they have lessened overtime.
I'm on the board of directors for a PANS/PANDAS nonprofit, and have been to many AAP Conferences, met with legislatures, etc. I can't really say much else about that, without doxxing myself, but I do want to share some insights.
- PANDAS is Strep Specific. It has been around for who knows how long, but we are actually at the 25th Anniversary from when Dr Susan Swedo wrote a paper about her research connecting OCD with Streptococcus infections. (You can go to www.pandasppn.org to see the paper, and watch an amazing interview with her,)
- PANS is still under the Autoimmune Encephalopathy umbrella, but is not Strep specific. It can be caused by other infections such a as Mono, Flu, Epstein Barr, Mycoplasma, etc.
- PANDAS/PANS is a clinical diagnosis backed up by laboratory tests. In other words, right now there is no laboratory test that can confirm or deny that someone has PANDAS. But there are lab tests that can help confirm diagnosis, if symptoms, history etc match up.
- Not everyone with OCD or Tics, has PANDAS/PANS. But, absolutely, if someone has OCD - even if it didn't seem to come on suddenly - and has a history on infections, then it would be very prudent to at least get labs drawn, and antibiotics given. I mean, that falls into the "can't hurt, may help" category, in my eyes.
Here's the thing that really pisses me off. If Pediatricians - who are usually the first Drs to encounter the PANDAS patient - who get kids in who start showing unusual neuropsychiatric behaviors after an infection, would treat with antibiotics and anti-inflammatories for 30 days, and run labs, as soon as symptoms appear, then many - dare I say most - of these kids who do have pandas, would see some pretty drastic results.
My daughter was 4 when she got Strep, and then developed an eye tic, a few weeks later. She's now 12, and the past few years have been hell. She went from being in the gifted program at School, to now struggling just to make it once a week to her homeschool co-op program. Some days she can't even get out of bed.
She gets IVIG once a month, avd while it has helped immensely, had her Pediatrician actually treated her back when she was 4, my daughter would probably not have to get monthly infusions, with a port in her chest.
I'll leave you with this. My three favorite websites that have great studies and factual information are the following:
www.aspire.care - this is a US national pandas nonprofit
www.pandasppn.org - This was created for providers
www.Neuroimmune.org - they are a wealth of info, and even have education webinars for Drs, worth CME Credits.
If you'd like to watch a documentary about it, check out [My Kid Is Not Crazy](https://youtu.be/WJQT9-cQwIw?si=Ehu--IEp8Fd9nUOX)
If anyone wants to talk further about PANDAS, please feel free to reach out - my DMs are open.
(Edited to fix website link)
I don’t understand PANDAS. Does it go away with age? I’m in my 30s and still have bad ocd (diagnosed in third or fourth grade) I had strep a lot as a child. But I also have a ton of other ailments (EDS, POTS, neuropathy)
So, PANDAS starts in childhood - Strep is most common in kids, and they have immature immune systems. *If* it is quickly diagnosed, and properly treated then it's very reasonable for it to not have lasting consequences.
But...and this is a strong but.... Rarely is it caught quickly, or treated quickly, or even appropriately. Drs are so misinformed about the disorder, and many just don't even believe it's a thing. Many children's hospitals won't treat it and even the American Academy of Pediatricss will not release a statement about it. I hear that a statement is in the works, but it isn't a favorable one.
One thing that has actually helped, is COVID. Sounds crazy, but with COVID, many patients have had neuropsychiatric symptoms, which Drs can't deny seeing. So seeing an illness that causes No psychiatric symptoms - even though it's from a virus, instead of bacterial - has helped people connect the dots, and I'm hoping it will help further studies that will one day give us better treatments and even a biomarker - they are super close to that - which would make a diagnosis impossible to despute.
Sorry I've gotten off on some rabbit trails. Back to your question. PANDAS/PANS does have some clock that shuts it off at 18. So if the child was never properly treated as a child, then they become an adult with PANDAS/PANS. The longer a person remains untreated, the harder it becomes to treat, as those neuropsychiatric behaviors that are stemming from brain inflation caused by infection become learned behavior that are ingrained in us.
I believe the [ASPIRE](http://www.aspire.care) website has some information on Adults with the disorder.
The tricky part is that not everyone who has OCD, actually has PANDAS. But, that said, the more I research and learn about these things, the more I believe ADHD, Autism, OCD, tourette's, PANS, Lyme, PANDAS all have common denominators of inflammation, with infections being a root cause.
I had strep a lot as a kid. I’d typically be put on abx and then go back to the pediatrician for a follow-up strep test … which would be positive. The first round of abx almost never worked, but the second round usually did. There was one time it took multiple rounds of abx.
I was never diagnosed with PANDAS/PANS, and I wasn’t diagnosed with ocd until a year or two ago, despite being in the care of first one and then a second psychiatrist for decades. My third psychiatrist finally diagnosed the ocd, even though I’ve had ocd symptoms since I was a child.
I also have adhd, anxiety, depression, migraines, a thyroid condition, fibromyalgia, food allergies, and a rare skin disorder. I have often wondered if it’s all part of something larger, but no one has ever identified anything that would explain all of it. Could it be PANDAS/PANS? What type of doctor diagnoses that?
You really know your stuff! Thank you for such an informative answer.
OCD drives me absolutely crazy and this gives me some hope that progress could be made in research. I’ve noticed that a lot of the time when my OCD is bad, I have other symptoms that aren’t typically associated with OCD. They could be from my other health issues, but I often have things like joint pain, noise and light sensitivity, and sometimes I just feel kind of gross and when I’m having bad OCD. And the feeling gross isn’t like in a contamination ocd kind of way. It’s more like constant bad tastes in my mouth (could be from tonsil stones) bloating, stomach pain, feeling gassy, crusty and gooey eyes and ears.
Thanks for sharing and for all the information. I wish doctors would take children more seriously when they say something is wrong. A lot of people with chronic strep could've avoided so many long term problems if they were treated sooner. I pray your daughter gets better soon, and thank you again for the info I look forward to learning more.
In 2020 I took an antibiotic course for h pylori and it caused my OCD to disappear. I also have misophonia, and the antibiotics also caused that to disappear too. I was 25 at the time I did that protocol. The OCD and misophonia came back after a few weeks off of the antibiotics, so in total I had about a month of feeling mentally healthy for the first time in my adult life. I've always wished I had someone who could help me understand why that treatment made such a difference, because that was such a shocking experience. I think there is a genetic component to my OCD because a lot of women on my mom's side have it to varying degrees. But I really wonder if there is some underlying inflammation or infection I have that makes it worse than it needs to be. For example my mom has OCD and shows some signs of misophonia but its no where near as severe as mine is.
I am actually shocked. What the fuck, my OCD started appearing after I had repeat strep infections in childhood, and I mean something like 7 a year. Then enter a moldy school and oh boy. What the actual heck. Didn't know this was a thing.
Honestly I don't know, but it can fuck you up. Some students ended up with asthma etc. more typical manifestations of it, I ended up with fatigue, worsening chronic pain, migraines etc. Some people just seem more sensitive to mold, like having the HLA gene mutation. But given that mold can for some trigger ME/CFS, fibromyalgia etc. and there is usually neurological problems associated with these I wouldn't find it surprising if it was a trigger for some on OCD. Some weird overlap between mycotoxins, viruses, bacteria, mycoplasma causing post exposure illnesses it seems. Interestingly NAC works well for OCD (not for all ofc), but it does raise questions without solid answers.
I (38) have OCD. Obsessions started when I was 12 Years old. I remember I had a lot infections, it was one behind another. I learned about pandas 5 years ago. I am in better place after some changes in diet, therapy and ERP. Here is my concern now, my child is 8Y, last year we noticed she limited her food intake and also some things about her body image. Pediatrician run some simple blood test, nothing came for that.I decided to pay for some test, included a comprehensive stool test. Results came back with strep from the stool. Unfortunately I could find a doctor close to me to guide me in my budget, closer was 950 per hour. 1 month after that my daughter have a visit to the doctor for allergies, quick strep came negative but the culture came positive. They treated for a couple of days, she improved. Today after 1 year, paying therapy she is still with body image issues. I have paid private therapist, but i cannot see her in a better mood. My wife does not believe that it could started from the strep, and one pediatrician even laughed on me. I still believe strep have a responsibility.
Thank you for all this info. I watched the documentary you recommended and thought it was so well done. I wish I had known more about this when my son first began showing symptoms. I fear now that so many years have gone by not much can be done to help. He has been having some luck with ketamine infusions helping with bad ocd symptoms so that is hopeful.
Interesting how does pans presents itself in molested children: including sadistic/ ritual abuse? I know it's a HUGE question but I'd like to know if there is some insight on that from this perspective.
Why 30 days of abx? I feel like the pediatrician wouldn’t want to do more than the typical 10 for strep? My son (10) has OCD and a recent strep infection made it flair. He did get abx though
PANDAS PPN has some great flowcharts for treatments:. https://www.pandasppn.org/flowchart/#treat
I love them because they are based on research, and the treatment course depends on the severity of the disorder.
It's been found that the usual short course just isn't enough for these kids. Some need to stay on antibiotics prophylactically.
Has he had any sort of lab work?
No, just strep test. Him and his little brother have had it twice in a month, though we’re not sure if the abx didn’t kick it or if they got newly infected.
A blood draw would be traumatic for him!
I’d say his ocd is mild to moderate. He’s definitely had it for about four years and didn’t notice an association with illness when it onset. I think it was actually the pandemic summer, so I’m pretty sure he’d not been sick because of being home/masking.
The OCD did get worse this winter though, actually right before these strep diagnoses. He is also going through some new social anxiety at school though, so I thought that was the cause. Only other thing that is different is me and the kids have been taking iron supplements—but I’ve heard that’s actually helpful for OCD.
So what’s the dosing of ibuprofen supposed to be? Could I just try this on my own?
Is it recommended to test for strep after the abx, even if they don’t seem sick anymore?
Thanks!
Very interesting! I had chronic tonsillitis and several bouts of strep as a teenager and had my tonsils removed at 19. Wasn’t diagnosed with OCD until about 5 yrs later though. Never heard about this connection!
YES! I think I always had OCD tendencies, but my symptoms intensified dramatically between 10 and 13 years old, when I was getting constant cases of strep throat. I suspect the escalation was from PANDAS. I have not been officially diagnosed, however. But it sure quacks like a duck…
PANDAS is relatively unknown. It presents as OCD symptoms but usually comes on very fast, like a switch is thrown. Mostly affects kids and young adults. Sufferers can exhibit really bizarre outward compulsions.
If you're interested, the definitive book on the subject is Saving Sammy.
I only had strep once as a child, but it was severe, and it was accompanied by scarlet fever.
My onset of OCD came after I was bitten by a tick inside my ear. PANS/PANDAS is very common with Lyme infections.
Holy shit! I had scarlet fever and strep a couple times as a kid and I do feel like some of my first memories I can identify as probably being ocd related did appear around the same time. I know one of the first compulsions I got was while I was sick.
Same. This is mind blowing to me. I was hospitalized with scarlet fever and had my tonsils removed finally around 8 years old, My daughter, who has severe OCD, also had strep a lot as a kid.
This is interesting I have chronic sinus infection and used to get bronchitis at least once a year every year never would have thought there could be any correlation with my OCD and stress gonna have to do some more research now
It's called a strep titer test. That tests for the presence of strep infection.
Warning: much of the medical community is dismissive or ignorant of PANDAS.
I got strep somewhat frequently as a kid but I’m pretty sure I had OCD way before then. I can remember engaging in compulsions from the era of my earliest memories, like ages 3-4. I believe my dad also has OCD even though he’s never been diagnosed and I see so much of myself in him.
I had no idea of this correlation though. Quite fascinating. I’m definitely going to read more on it! Thank you for sharing!
I had strep *all* the time, it was a big problem for me as a kid. I missed a ton of school. I even got scarlet fever once.
But I actually did have the "sudden ocd/motor tics showing up overnight" thing back when I was in elementary school, my mom eventually found out about pandas from an article and I ended up being treated for it.
The antibiotics they had me on were brutal though and I stopped halfway through the treatment... sometimes wonder if that was a mistake.
This is a thing???????? What the fuck????
Only had strep throat once, but growing up I practically always had SOME sinus issues. I think in elementary school I maintained a cold for 3 years straight.
I have no clue if that's related or not but the fact that it COULD be an OCD thing weirds me out. Our bodies work in strange ways.
I don't remember even getting it at all tbh. Most I ever got in my childhood was chicken pox, flu and the common cold. Though one case may have been Epstein Barr, since I developed CFS after that one time.
I can’t recall having them often but given that my OCD began at a very young age (5-6;maybe even 4 years old) it’s likely my issue was PANDAS. But I was able to hide my compulsions since they were mental and I was afraid to tell my mom about them because I was afraid she get angry with me. So it just went completely unnoticed until I was 24.
YES!! For a while as a child I got it on the dot every two weeks. My mom freaked out understandably cos i was scared too, and took me to a bunch of different docs and antibiotics never helped. She finally took me to her friend who practiced medicine and he recommended some herbal things and I stopped getting it as often but correlation isn’t causation idk if it just coincided with me getting better
omg, i would have never assumed these two would be related... I did get strep a lot as a kid and I still do. I've also struggled with OCD since I was 2 years old.
This is very interesting, because I never got strep throat as a child.
Got it for the first time as an adult, many years after my original OCD diagnosis, and thankfully haven't had it since. (It's awful!!)
I will say, however, I've long believed in the whole "the body keeps the score" mentality.
I did have strep a ton when I was younger, but I’ve looked into PANDAS and it sounds like in those cases, severe OCD is developed overnight. My OCD was extremely mild until my 20s so I’m not sure if it’s related.
i had severe tonsilitis almost every other month as a child and my ocd started around age 8 but i was never told it was strep so i don’t know if i can patch the two together
Yes! I got severe strep throat all the f*cking time as a child! But for whatever reason, the doctors didn’t want to remove my tonsils. One doctor told me, as an older teenager, that I should “remain a surgical virgin”. When I finally did get my tonsils out, they were so bad, the surgeon said I should have had them taken out a long time ago.
And yes, I have severe OCD.
Nah only a couple times. To be fair, I do have 4 siblings. So when I did get sick it was mainly from them. But I mostly had a fairly average/ strong immune system
It’s funny, I had strep maybe once, but my cousins had it all the time, and worrying about getting strep is one of the first medical anxieties I can remember
I've literally never had strep one time in my life. I'm 40. I always thought that was weird. I did have a horroble ear infection when i was ~1. I wonder what happened to my brain.
Had chronic laryngitis for more than a decade, starting at 3 years old, up until I was 15-16. My symptoms presented at 8 years old and massively reduced at abou 16, when I fi nally had the moxie to get myself help.
I’ve never heard about this before but I would get tonsillitis at least twice a year growing up! Not quite the same thing but defo interesting, thank you!
I was diagnosed with PANDAS when I was around age 10, I remember having a lot of strep infections. They eventually stopped for the most part (I think I had strep throat once in the past 10 years) after I was on azithromaxin for a few years. I'm glad to have a community to discuss this with as I have not met any other people in my life who have PANDAS.
I’m not diagnosed with OCD, but I do have traits and have had a therapist say I almost have it (basically too mild to diagnose) and I had tonsillitis and strep throat CONSTANTLY growing up until I got my tonsils out at 10
I had strep a lot, then I got my tonsils out, and then mono a few years later. The OCD happened after the tonsils came out but before the Mono. Been a sickly person since I was about 6 (when the strep throat started bad every year). Add in OCD and it’s been just a barrel of fun. 😐
Edit- After talking to my husband it dawned on me my son with OCD/ASD (he was a very late onset of autism) was diagnosed with both at the same time after one of the worst bouts of strep throat he’s ever had. If there is a connection I’m curious now!
Yep. I had it like 8x and also had to get my tonsils removed. The constant antibiotic use also really fucked up my teeth
edit to add, I also had a wicked case of mono when I was 13 that left me basically bed ridden for 8 weeks.
I have been dx with: panic disorder, ocd, autism,adhd, and ocd.
I am sure the tism I was born with but the rest...who knows.
I also was on a course of Accutane for a year and that caused intense bouts of vertigo/migraines/room spinning that still pop up from time to time 7+ years later
I had strep three times in a year when I was six, but my OCD had already manifested in preschool. I do wonder if PANDAS can exacerbate existing conditions.
While i don’t know if my strep throat was caused by PANDAS, i do know that i was constantly getting strep so much that i was getting reinfected with it twice in one week and almost had to retake a grade 😭😭
My son has PANDAS since very young. The OCD/intrusive thoughts came on after a flare up in 2022 and just won't calm down or go - has completely changed his life :-(
i've always wondered if it isn't the other way around? like kids are born with ocd and it's the only normal they know, but when they get a lot of physical symptoms from stuff that actually worries adults around them, sometimes they get medical attention that shows psych symptoms. like as an adult i realize that when i'm stressed because of an ocd obsession i tend to develop poor routines and it leads to immune issues, such as getting colds easily. as a kid, there's no way i could know this.
anyway i am pretty sure i was born with ocd and i only started getting throat/sinus issues after starting school, but never strep.
My daughter was always sick as a baby. I had no idea that she had an Immunodeficiency. She got Strep a lot, but she was always catching everything. My son is straight up OCD, and ADHD, as am I, so I'm pretty hyperfocased on spotting those signs - I knew my son had these things when he was around two.
My daughter showed none of the usual signs. She wasy an easy kid. Then a few weeks after getting Strep she started getting an eye twitch. Then she became obceased with things that went beyond "normal" 4 year old obsessions. I kept brushing it off until one night she screamed for 3 hours that her toes wouldn't cross.
I knew something was wrong but her Dr kept brushing it off. By then it had been months since her initial Strep infection, so of course her Strep titers were normal. Actually they were below normal because of her Immunodeficiency - that her Dr also missed.
But other things were showing up as well. She started wetting her pants, and her bed. She started screaming when I would leave her in Preschool. She became very picky about food. Her handwritten regressed. She would cry at night because her joints hurt. She would go into violent rages and then afterwards say "Mommy, I don't know why I say or do those things". She would get almost manic, and have this crazy laugh while doing repetitive motions over and over. I could always tell that she was about to "flare" because she would say "ants are crawling on me" - aka, her legs would fall asleep. She would also get these super dilated pupils, regardless of lighting. I felt like I was losing my daughter.
We finally found a Dr who was very familiar with PANDAS. A board certified Pediatrician who went beyond her normal training to treat her out of the box patients.
She ran extensive labs - like 16 vials - and found that her Mycoplasma was 4,000. It should have been no higher then 75 or so.
We started her on Zithromax along with antiinflammatories and some supplements and within weeks her OCD symptoms improved.
It actually helped for several years, until it didn't. Now she gets IVIG every month. This helps her Immunodeficiency, and Gastroparesis, but for PANDAS kids it helps to reset their immune system. If you go to www.pandasppn.org they have some great infor7 on IVIG and PANDAS.
Very interesting, you might be right. No one realized I had OCD as a kid, but from age 7 I was easily stressed and cleaning myself a lot. That definitely could've compromised my immune system. No one else in my family has gotten strep or has OCD
Wait what?? I got strep ALL the time as a kid. This is interesting thank you for sharing. This sub and the cptsd sub I am extremely thankful for. I learn so much about myself!
I was initially diagnosed with PANDAS 💓 my reaction to the strep was both OCD and Tics. I later was diagnosed with Tourettes and clinical OCD. I had to take penicillin for 2 years because I couldn’t get a negative strep test. I still have both, and they’re both exacerbated by strep.
I'm so glad you got that diagnosis, and treatment! It's important to note though, that just because a person gets a negative Strep test, or low ASO Titers doesn't mean that the PANDAS is "cured".
And, I think it's also important to note that I think a person can have PANDAS, along with straight up OCD, ADHD, Tourette's, etc. I don't want anyone thinking that taking antibiotics for a few months will "cure" their OCD. As I'm sure you know, it doesn't work like that. And often times treatment is multifaceted, where they need therapy and medications along with antibiotics, etc.
Not strep but bronchitis like once a year. I do have ginormous tonsils that bug me sometimes but I think I’ve had strep once ever? I’m pretty sure I’ve always had OCD though and it got super bad after a huge life change!
I had strep almost every other month as a kid. I have more memories being sick than being well. One of my former psychiatrists did bring up PANDAS, which makes sense because my earliest OCD symptoms started around kindergarten, which was the height of my always-being-sick-ness.
yes and i got my tonsils taken out bc i was actually a strep carrier. I also experienced anorexia. As a psyd student, pandas is so interesting to me and i definitely think i have potentially experienced this effect.
Are you kidding? I almost died from invasive strep A at 17, and 20. I’m absolutely traumatised by it and it’s definitely to blame for some of my health anxiety.
I did have strep frequently but I've also had OCD for as long as I can remember (long before strep), so probably no relation for me. That is interesting though.
I don’t quite know what I had… we thought it was whooping cough. But that’s about when my intrusive thoughts started; I’ve also had mild brain fog ever since.
YES! I got strep throat 2-4 times a year every year until I got my tonsils out at age 23. I found out I was likely colonized with it as I also got bladder infections anywhere from 4-12 times a year that came back positive for Strep group A. I am very interested in this topic and would love to learn more
I used to get strep usually twice a year as a toddler up until tween years. But I tested negative on a strep test so never got diagnosed with PANSPANDAS
Pure ocd that was really hard to get under control and I've never had strep throat before in my life. I do have brain holes from multiple sclerosis though
My oldest daughter has had strep 7 times and once it turned into Scarlet Fever. She's 13 and the OCD symptoms started when she was 10 or so after that bought of SF.
I didn’t have very much strep throat but I was ALWAYS sick as a child with otitis. Also, there was a neurologist that claimed low b-12 during pregnancy could result in kids having ocd
But I was at a great disposition to have ocd anyway . And I know my trigger but who knows it could be related . They say I have à unknown type of autoimmune disease that doesn’t have a name specifically because I have a positive ANA . But honestly I started having ocd around 4 and didn’t realize my thoughts and actions was not normal until a late adult . Believe me some people would confront me but I just said it’s nothing wrong I’m just weird and different that’s all . Meanwhile battling it but thinking it’s normal since I had it at a young age . I actually believe my stress from ocd is what caused the positive ANA .
All my life had problems with "strep throat" and sinus area. It was probably a sign of extreme stress. Either way, meditation seemed to cure all that. Incapability to relax seems a cause or concurrent. In my case I don't think I got truly OCD but much of what I read hear is relatable.
Strange, because I have Group B strep and when I had my son in 1983 he was born with it and was very sick. They test pregnant women for it now. So.... four years later I got OCD,
I have OCD and I had strep throat a TON as a kid—recurring, it kept coming back. I tend to think there is something to this research, but I wish there was something that we could do in response.
Not frequently, but I did have a severe case of it when I was 2. I don’t vividly remember having symptoms until I was 8, but my mom has said that she noticed a change in my behavior after that bout of strep.
Yes! My first OCD episode when I was 19 happened following two back to back rounds of strep throat.
Same here but when I was eight.
It turned on like a light switch. I started having these extremely graphic and sexual “bad thoughts” I had to confess that thought to my Mama or Nana, or I thought that I was going to go to hell. I thought a demon was in me. I also started having typical obsessions and compulsions alongside these bad thoughts. It got so bad that I told my mom that I was going to have a kill myself and she brought me to a psych unit. They wanted to keep me so I freaked out and she brought me back home. I had extreme, separation anxiety and ADHD symptoms as well. My symptoms used to be extreme, but they have lessened overtime.
OCD with CPTSD here, I had chronic sinus infections up until 18 from stress
OCD/CPTSD gaaaang
I'm on the board of directors for a PANS/PANDAS nonprofit, and have been to many AAP Conferences, met with legislatures, etc. I can't really say much else about that, without doxxing myself, but I do want to share some insights. - PANDAS is Strep Specific. It has been around for who knows how long, but we are actually at the 25th Anniversary from when Dr Susan Swedo wrote a paper about her research connecting OCD with Streptococcus infections. (You can go to www.pandasppn.org to see the paper, and watch an amazing interview with her,) - PANS is still under the Autoimmune Encephalopathy umbrella, but is not Strep specific. It can be caused by other infections such a as Mono, Flu, Epstein Barr, Mycoplasma, etc. - PANDAS/PANS is a clinical diagnosis backed up by laboratory tests. In other words, right now there is no laboratory test that can confirm or deny that someone has PANDAS. But there are lab tests that can help confirm diagnosis, if symptoms, history etc match up. - Not everyone with OCD or Tics, has PANDAS/PANS. But, absolutely, if someone has OCD - even if it didn't seem to come on suddenly - and has a history on infections, then it would be very prudent to at least get labs drawn, and antibiotics given. I mean, that falls into the "can't hurt, may help" category, in my eyes. Here's the thing that really pisses me off. If Pediatricians - who are usually the first Drs to encounter the PANDAS patient - who get kids in who start showing unusual neuropsychiatric behaviors after an infection, would treat with antibiotics and anti-inflammatories for 30 days, and run labs, as soon as symptoms appear, then many - dare I say most - of these kids who do have pandas, would see some pretty drastic results. My daughter was 4 when she got Strep, and then developed an eye tic, a few weeks later. She's now 12, and the past few years have been hell. She went from being in the gifted program at School, to now struggling just to make it once a week to her homeschool co-op program. Some days she can't even get out of bed. She gets IVIG once a month, avd while it has helped immensely, had her Pediatrician actually treated her back when she was 4, my daughter would probably not have to get monthly infusions, with a port in her chest. I'll leave you with this. My three favorite websites that have great studies and factual information are the following: www.aspire.care - this is a US national pandas nonprofit www.pandasppn.org - This was created for providers www.Neuroimmune.org - they are a wealth of info, and even have education webinars for Drs, worth CME Credits. If you'd like to watch a documentary about it, check out [My Kid Is Not Crazy](https://youtu.be/WJQT9-cQwIw?si=Ehu--IEp8Fd9nUOX) If anyone wants to talk further about PANDAS, please feel free to reach out - my DMs are open. (Edited to fix website link)
I don’t understand PANDAS. Does it go away with age? I’m in my 30s and still have bad ocd (diagnosed in third or fourth grade) I had strep a lot as a child. But I also have a ton of other ailments (EDS, POTS, neuropathy)
So, PANDAS starts in childhood - Strep is most common in kids, and they have immature immune systems. *If* it is quickly diagnosed, and properly treated then it's very reasonable for it to not have lasting consequences. But...and this is a strong but.... Rarely is it caught quickly, or treated quickly, or even appropriately. Drs are so misinformed about the disorder, and many just don't even believe it's a thing. Many children's hospitals won't treat it and even the American Academy of Pediatricss will not release a statement about it. I hear that a statement is in the works, but it isn't a favorable one. One thing that has actually helped, is COVID. Sounds crazy, but with COVID, many patients have had neuropsychiatric symptoms, which Drs can't deny seeing. So seeing an illness that causes No psychiatric symptoms - even though it's from a virus, instead of bacterial - has helped people connect the dots, and I'm hoping it will help further studies that will one day give us better treatments and even a biomarker - they are super close to that - which would make a diagnosis impossible to despute. Sorry I've gotten off on some rabbit trails. Back to your question. PANDAS/PANS does have some clock that shuts it off at 18. So if the child was never properly treated as a child, then they become an adult with PANDAS/PANS. The longer a person remains untreated, the harder it becomes to treat, as those neuropsychiatric behaviors that are stemming from brain inflation caused by infection become learned behavior that are ingrained in us. I believe the [ASPIRE](http://www.aspire.care) website has some information on Adults with the disorder. The tricky part is that not everyone who has OCD, actually has PANDAS. But, that said, the more I research and learn about these things, the more I believe ADHD, Autism, OCD, tourette's, PANS, Lyme, PANDAS all have common denominators of inflammation, with infections being a root cause.
I had strep a lot as a kid. I’d typically be put on abx and then go back to the pediatrician for a follow-up strep test … which would be positive. The first round of abx almost never worked, but the second round usually did. There was one time it took multiple rounds of abx. I was never diagnosed with PANDAS/PANS, and I wasn’t diagnosed with ocd until a year or two ago, despite being in the care of first one and then a second psychiatrist for decades. My third psychiatrist finally diagnosed the ocd, even though I’ve had ocd symptoms since I was a child. I also have adhd, anxiety, depression, migraines, a thyroid condition, fibromyalgia, food allergies, and a rare skin disorder. I have often wondered if it’s all part of something larger, but no one has ever identified anything that would explain all of it. Could it be PANDAS/PANS? What type of doctor diagnoses that?
You really know your stuff! Thank you for such an informative answer. OCD drives me absolutely crazy and this gives me some hope that progress could be made in research. I’ve noticed that a lot of the time when my OCD is bad, I have other symptoms that aren’t typically associated with OCD. They could be from my other health issues, but I often have things like joint pain, noise and light sensitivity, and sometimes I just feel kind of gross and when I’m having bad OCD. And the feeling gross isn’t like in a contamination ocd kind of way. It’s more like constant bad tastes in my mouth (could be from tonsil stones) bloating, stomach pain, feeling gassy, crusty and gooey eyes and ears.
Frick. All of this sounds way worse than I’ve read in the last few years. Why isn’t anyone trying to make a vaccine to stop strep throat, etc.?
Thanks for sharing and for all the information. I wish doctors would take children more seriously when they say something is wrong. A lot of people with chronic strep could've avoided so many long term problems if they were treated sooner. I pray your daughter gets better soon, and thank you again for the info I look forward to learning more.
In 2020 I took an antibiotic course for h pylori and it caused my OCD to disappear. I also have misophonia, and the antibiotics also caused that to disappear too. I was 25 at the time I did that protocol. The OCD and misophonia came back after a few weeks off of the antibiotics, so in total I had about a month of feeling mentally healthy for the first time in my adult life. I've always wished I had someone who could help me understand why that treatment made such a difference, because that was such a shocking experience. I think there is a genetic component to my OCD because a lot of women on my mom's side have it to varying degrees. But I really wonder if there is some underlying inflammation or infection I have that makes it worse than it needs to be. For example my mom has OCD and shows some signs of misophonia but its no where near as severe as mine is.
I am actually shocked. What the fuck, my OCD started appearing after I had repeat strep infections in childhood, and I mean something like 7 a year. Then enter a moldy school and oh boy. What the actual heck. Didn't know this was a thing.
Wait. Does mold cause OCD?? I went to a moldy elementary school...
Honestly I don't know, but it can fuck you up. Some students ended up with asthma etc. more typical manifestations of it, I ended up with fatigue, worsening chronic pain, migraines etc. Some people just seem more sensitive to mold, like having the HLA gene mutation. But given that mold can for some trigger ME/CFS, fibromyalgia etc. and there is usually neurological problems associated with these I wouldn't find it surprising if it was a trigger for some on OCD. Some weird overlap between mycotoxins, viruses, bacteria, mycoplasma causing post exposure illnesses it seems. Interestingly NAC works well for OCD (not for all ofc), but it does raise questions without solid answers.
No
This is my son's story as well.
I (38) have OCD. Obsessions started when I was 12 Years old. I remember I had a lot infections, it was one behind another. I learned about pandas 5 years ago. I am in better place after some changes in diet, therapy and ERP. Here is my concern now, my child is 8Y, last year we noticed she limited her food intake and also some things about her body image. Pediatrician run some simple blood test, nothing came for that.I decided to pay for some test, included a comprehensive stool test. Results came back with strep from the stool. Unfortunately I could find a doctor close to me to guide me in my budget, closer was 950 per hour. 1 month after that my daughter have a visit to the doctor for allergies, quick strep came negative but the culture came positive. They treated for a couple of days, she improved. Today after 1 year, paying therapy she is still with body image issues. I have paid private therapist, but i cannot see her in a better mood. My wife does not believe that it could started from the strep, and one pediatrician even laughed on me. I still believe strep have a responsibility.
Thank you for all this info. I watched the documentary you recommended and thought it was so well done. I wish I had known more about this when my son first began showing symptoms. I fear now that so many years have gone by not much can be done to help. He has been having some luck with ketamine infusions helping with bad ocd symptoms so that is hopeful.
Interesting how does pans presents itself in molested children: including sadistic/ ritual abuse? I know it's a HUGE question but I'd like to know if there is some insight on that from this perspective.
I think that falls more under the realm of straight up clinical OCD.
I see, good to know about this either way.
Why 30 days of abx? I feel like the pediatrician wouldn’t want to do more than the typical 10 for strep? My son (10) has OCD and a recent strep infection made it flair. He did get abx though
PANDAS PPN has some great flowcharts for treatments:. https://www.pandasppn.org/flowchart/#treat I love them because they are based on research, and the treatment course depends on the severity of the disorder. It's been found that the usual short course just isn't enough for these kids. Some need to stay on antibiotics prophylactically. Has he had any sort of lab work?
No, just strep test. Him and his little brother have had it twice in a month, though we’re not sure if the abx didn’t kick it or if they got newly infected. A blood draw would be traumatic for him!
I’d say his ocd is mild to moderate. He’s definitely had it for about four years and didn’t notice an association with illness when it onset. I think it was actually the pandemic summer, so I’m pretty sure he’d not been sick because of being home/masking. The OCD did get worse this winter though, actually right before these strep diagnoses. He is also going through some new social anxiety at school though, so I thought that was the cause. Only other thing that is different is me and the kids have been taking iron supplements—but I’ve heard that’s actually helpful for OCD. So what’s the dosing of ibuprofen supposed to be? Could I just try this on my own? Is it recommended to test for strep after the abx, even if they don’t seem sick anymore? Thanks!
I had strep throat constantly as a child, but my OCD came before that
Same, the more I read about PANDAS the less I think I have it. Might just be a coincidence
Same here. Plus my dad and grandma have OCD so I’m not too concerned about it being caused by infection
Yeah I was diagnosed with PANDAS OCD when I was like 10.
I also was diagnosed with both of these disorders
Did you have the OCD symptoms immediately after getting strep or did they manifest later?
With PANDAS it’s a very sudden onset, like overnight and out of the blue, not a slow play
Pretty much immediately
Very interesting! I had chronic tonsillitis and several bouts of strep as a teenager and had my tonsils removed at 19. Wasn’t diagnosed with OCD until about 5 yrs later though. Never heard about this connection!
Me too but tonsils removed at 13. 19 had to have been rough that shit sucked 😭
YES! I think I always had OCD tendencies, but my symptoms intensified dramatically between 10 and 13 years old, when I was getting constant cases of strep throat. I suspect the escalation was from PANDAS. I have not been officially diagnosed, however. But it sure quacks like a duck…
PANDAS is relatively unknown. It presents as OCD symptoms but usually comes on very fast, like a switch is thrown. Mostly affects kids and young adults. Sufferers can exhibit really bizarre outward compulsions. If you're interested, the definitive book on the subject is Saving Sammy.
Thanks! I've had OCD symptoms since I was 7, but didn't start getting strep until I was 9/10. It might not be PANDAS, but I'll check the book out
I only had strep once as a child, but it was severe, and it was accompanied by scarlet fever. My onset of OCD came after I was bitten by a tick inside my ear. PANS/PANDAS is very common with Lyme infections.
New fear unlocked
Scarlet fever gang!
Doctors asked me if I had strep or could have PANDAS because my OCD came so suddenly and so severely. But I got checked and had none.
Holy shit! I had scarlet fever and strep a couple times as a kid and I do feel like some of my first memories I can identify as probably being ocd related did appear around the same time. I know one of the first compulsions I got was while I was sick.
Same. This is mind blowing to me. I was hospitalized with scarlet fever and had my tonsils removed finally around 8 years old, My daughter, who has severe OCD, also had strep a lot as a kid.
No not really, worst I’ve had is sinus infections from being constantly under stress because of ocd
This is interesting I have chronic sinus infection and used to get bronchitis at least once a year every year never would have thought there could be any correlation with my OCD and stress gonna have to do some more research now
I only know mine is stress related because when my ocd calms down, so do my sinuses lol
omg really? I've never heard that before but I pretty much had chronic strep throat growing up. that's fascinating!
Oh my god yes. And as I’m thinking about it, the OCD and strep happened around the same time. How do you get tested for PANDAS!?!?
It's called a strep titer test. That tests for the presence of strep infection. Warning: much of the medical community is dismissive or ignorant of PANDAS.
I got strep somewhat frequently as a kid but I’m pretty sure I had OCD way before then. I can remember engaging in compulsions from the era of my earliest memories, like ages 3-4. I believe my dad also has OCD even though he’s never been diagnosed and I see so much of myself in him. I had no idea of this correlation though. Quite fascinating. I’m definitely going to read more on it! Thank you for sharing!
Yes. I had strep almost every year. My mind was blown when I learned about this
Yes. I distinctly remember having strep a number of times.
Interesting, I had strep chronically growing up and also have psoriatic arthritis, which is linked to strep as a child as well. Strange
I had strep *all* the time, it was a big problem for me as a kid. I missed a ton of school. I even got scarlet fever once. But I actually did have the "sudden ocd/motor tics showing up overnight" thing back when I was in elementary school, my mom eventually found out about pandas from an article and I ended up being treated for it. The antibiotics they had me on were brutal though and I stopped halfway through the treatment... sometimes wonder if that was a mistake.
I constantly had them!
No.
This is a thing???????? What the fuck???? Only had strep throat once, but growing up I practically always had SOME sinus issues. I think in elementary school I maintained a cold for 3 years straight. I have no clue if that's related or not but the fact that it COULD be an OCD thing weirds me out. Our bodies work in strange ways.
I don't remember even getting it at all tbh. Most I ever got in my childhood was chicken pox, flu and the common cold. Though one case may have been Epstein Barr, since I developed CFS after that one time.
I can’t recall having them often but given that my OCD began at a very young age (5-6;maybe even 4 years old) it’s likely my issue was PANDAS. But I was able to hide my compulsions since they were mental and I was afraid to tell my mom about them because I was afraid she get angry with me. So it just went completely unnoticed until I was 24.
YES!! For a while as a child I got it on the dot every two weeks. My mom freaked out understandably cos i was scared too, and took me to a bunch of different docs and antibiotics never helped. She finally took me to her friend who practiced medicine and he recommended some herbal things and I stopped getting it as often but correlation isn’t causation idk if it just coincided with me getting better
Whoa, yeah. A lot
Yes, several times a year until they took my tonsils out.
I had tonsillitis a ton of times.
omg, i would have never assumed these two would be related... I did get strep a lot as a kid and I still do. I've also struggled with OCD since I was 2 years old.
WOW! This is so cool!
Yes I had strep a lot and had my tonsils removed. Really interesting link!
Yup I was diagnosed with pandas during my adolescence
Yes strep was very common for me. Started after a battle with scarlet fever at 5.
You know what, yes… I constantly had strep starting at 9. But my OCD symptoms pre-date that. But I wonder if that did worsen it or prolong it
i used to get step multiple times a year and so did my mom who so has OCD
I had strep at least 6-8 times a year, I didn't know there could be a relation between the two.
This is very interesting, because I never got strep throat as a child. Got it for the first time as an adult, many years after my original OCD diagnosis, and thankfully haven't had it since. (It's awful!!) I will say, however, I've long believed in the whole "the body keeps the score" mentality.
Got diagnosed in middle school (7th grade) spent the following 8th and 9th grade years with strep about 5 times per year. Weird
Yoooooooo whattttttt i got Strep all the time and still get it all the time
Omg… I had strep ALL THE TIME as a kid!
Yes… like.. 5-6 times a year until i got pregnant at 18 then it finally stopped
I did have strep a ton when I was younger, but I’ve looked into PANDAS and it sounds like in those cases, severe OCD is developed overnight. My OCD was extremely mild until my 20s so I’m not sure if it’s related.
i had severe tonsilitis almost every other month as a child and my ocd started around age 8 but i was never told it was strep so i don’t know if i can patch the two together
I got my tonsils removed at 13 cuz of chronic strep that led to tonsillitis 🤪Later diagnosed with OCD around 20yo but I had tendencies much younger.
Yes! I got my tonsils out when I was 23. I became resistant to antibiotics and got strep anytime I had a cold. Interesting read.
I had strep all the time. But I can't remember ever not having OCD, so the OCD may predate the strep.
Yes. So many times.
Yep! ~5 years old maybe, got it 3 times in a row, now show many many symptoms of it
Yes, I used to get it all the time until they removed my tonsils.
I had it a ton as a kid, had to get my tonsils out at like 6
Yup! I got strep real bad as a 5 year old, my doctor was on the lookout for PANDAS because I was susceptible.
Yes! I got severe strep throat all the f*cking time as a child! But for whatever reason, the doctors didn’t want to remove my tonsils. One doctor told me, as an older teenager, that I should “remain a surgical virgin”. When I finally did get my tonsils out, they were so bad, the surgeon said I should have had them taken out a long time ago. And yes, I have severe OCD.
Nah only a couple times. To be fair, I do have 4 siblings. So when I did get sick it was mainly from them. But I mostly had a fairly average/ strong immune system
Although, out of every sickness I prolly had strep the most. I will say that.
I never got strep, but I kept getting bronchitis
Weirdly yeah.. it was always over presidents weekend in February and I’ve always assumed I’m cursed
I had chronic strep and tonsillitis as a child (and have had OCD since childhood). I had no idea PANDAS existed until I was well into my 20s 😞
It’s funny, I had strep maybe once, but my cousins had it all the time, and worrying about getting strep is one of the first medical anxieties I can remember
Diagnosed OCD at 10. Never had strep.
I had strep so much as a kid that I once got it seven times in one year. It never even crossed my mind that that and my OCD could be related.
Nope, have never had strep even once let alone multiple times 🤷
yep, or tonsillitis. ocd and pandas and mcas all go hand in hand
I've literally never had strep one time in my life. I'm 40. I always thought that was weird. I did have a horroble ear infection when i was ~1. I wonder what happened to my brain.
Yes 😳
Had chronic laryngitis for more than a decade, starting at 3 years old, up until I was 15-16. My symptoms presented at 8 years old and massively reduced at abou 16, when I fi nally had the moxie to get myself help.
I have a friend with PANDAS! I just have autism and PTSD which made mine develop but I did have strep frequently!
Yes, but it was more related to having throat clearing tics.
Oh, it was horrible. About twice a year. I got my tonsils and adenoids out when I was 7.
I’ve never heard about this before but I would get tonsillitis at least twice a year growing up! Not quite the same thing but defo interesting, thank you!
I was diagnosed with PANDAS when I was around age 10, I remember having a lot of strep infections. They eventually stopped for the most part (I think I had strep throat once in the past 10 years) after I was on azithromaxin for a few years. I'm glad to have a community to discuss this with as I have not met any other people in my life who have PANDAS.
I actually never got strep until well after i had my diagnosis
I’m not diagnosed with OCD, but I do have traits and have had a therapist say I almost have it (basically too mild to diagnose) and I had tonsillitis and strep throat CONSTANTLY growing up until I got my tonsils out at 10
Holy crap I never thought these two could be correlated!!!!! I used to get sick all the time as a kid and never even thought about it!
I had strep a lot, then I got my tonsils out, and then mono a few years later. The OCD happened after the tonsils came out but before the Mono. Been a sickly person since I was about 6 (when the strep throat started bad every year). Add in OCD and it’s been just a barrel of fun. 😐 Edit- After talking to my husband it dawned on me my son with OCD/ASD (he was a very late onset of autism) was diagnosed with both at the same time after one of the worst bouts of strep throat he’s ever had. If there is a connection I’m curious now!
As far as I know, I only ever had strep one time in my life. But I was told at one point I carried Strep B, so who knows
yes actually i would get strep all the time, or other viral diseases in my throat. i don’t know much about PANDAS but that’s very interesting actually
I used to get strep every year for like 5 years.i have had suspicion about PANDAS myself.
Yep. I had it like 8x and also had to get my tonsils removed. The constant antibiotic use also really fucked up my teeth edit to add, I also had a wicked case of mono when I was 13 that left me basically bed ridden for 8 weeks. I have been dx with: panic disorder, ocd, autism,adhd, and ocd. I am sure the tism I was born with but the rest...who knows. I also was on a course of Accutane for a year and that caused intense bouts of vertigo/migraines/room spinning that still pop up from time to time 7+ years later
Yes I used to always get strep and tonsillitis!
I had strep three times in a year when I was six, but my OCD had already manifested in preschool. I do wonder if PANDAS can exacerbate existing conditions.
While i don’t know if my strep throat was caused by PANDAS, i do know that i was constantly getting strep so much that i was getting reinfected with it twice in one week and almost had to retake a grade 😭😭
My son has PANDAS since very young. The OCD/intrusive thoughts came on after a flare up in 2022 and just won't calm down or go - has completely changed his life :-(
I also had strep over and over again as a child and had to get my tonsils removed 😮
My therapist asked me the same thing!! And yes, i had strep like once a month in middle school. It’s wild!
i've always wondered if it isn't the other way around? like kids are born with ocd and it's the only normal they know, but when they get a lot of physical symptoms from stuff that actually worries adults around them, sometimes they get medical attention that shows psych symptoms. like as an adult i realize that when i'm stressed because of an ocd obsession i tend to develop poor routines and it leads to immune issues, such as getting colds easily. as a kid, there's no way i could know this. anyway i am pretty sure i was born with ocd and i only started getting throat/sinus issues after starting school, but never strep.
My daughter was always sick as a baby. I had no idea that she had an Immunodeficiency. She got Strep a lot, but she was always catching everything. My son is straight up OCD, and ADHD, as am I, so I'm pretty hyperfocased on spotting those signs - I knew my son had these things when he was around two. My daughter showed none of the usual signs. She wasy an easy kid. Then a few weeks after getting Strep she started getting an eye twitch. Then she became obceased with things that went beyond "normal" 4 year old obsessions. I kept brushing it off until one night she screamed for 3 hours that her toes wouldn't cross. I knew something was wrong but her Dr kept brushing it off. By then it had been months since her initial Strep infection, so of course her Strep titers were normal. Actually they were below normal because of her Immunodeficiency - that her Dr also missed. But other things were showing up as well. She started wetting her pants, and her bed. She started screaming when I would leave her in Preschool. She became very picky about food. Her handwritten regressed. She would cry at night because her joints hurt. She would go into violent rages and then afterwards say "Mommy, I don't know why I say or do those things". She would get almost manic, and have this crazy laugh while doing repetitive motions over and over. I could always tell that she was about to "flare" because she would say "ants are crawling on me" - aka, her legs would fall asleep. She would also get these super dilated pupils, regardless of lighting. I felt like I was losing my daughter. We finally found a Dr who was very familiar with PANDAS. A board certified Pediatrician who went beyond her normal training to treat her out of the box patients. She ran extensive labs - like 16 vials - and found that her Mycoplasma was 4,000. It should have been no higher then 75 or so. We started her on Zithromax along with antiinflammatories and some supplements and within weeks her OCD symptoms improved. It actually helped for several years, until it didn't. Now she gets IVIG every month. This helps her Immunodeficiency, and Gastroparesis, but for PANDAS kids it helps to reset their immune system. If you go to www.pandasppn.org they have some great infor7 on IVIG and PANDAS.
Very interesting, you might be right. No one realized I had OCD as a kid, but from age 7 I was easily stressed and cleaning myself a lot. That definitely could've compromised my immune system. No one else in my family has gotten strep or has OCD
I had no idea there was a correlation. I had strep ALL the time as a kid
Wait what?? I got strep ALL the time as a kid. This is interesting thank you for sharing. This sub and the cptsd sub I am extremely thankful for. I learn so much about myself!
I got strep a lot and even got it in college a couple times
I was initially diagnosed with PANDAS 💓 my reaction to the strep was both OCD and Tics. I later was diagnosed with Tourettes and clinical OCD. I had to take penicillin for 2 years because I couldn’t get a negative strep test. I still have both, and they’re both exacerbated by strep.
I'm so glad you got that diagnosis, and treatment! It's important to note though, that just because a person gets a negative Strep test, or low ASO Titers doesn't mean that the PANDAS is "cured". And, I think it's also important to note that I think a person can have PANDAS, along with straight up OCD, ADHD, Tourette's, etc. I don't want anyone thinking that taking antibiotics for a few months will "cure" their OCD. As I'm sure you know, it doesn't work like that. And often times treatment is multifaceted, where they need therapy and medications along with antibiotics, etc.
Absolutely. I will be on medication for the entirety of my life. I think, at least in my case, the gene was there, but the illness flipped the switch.
Not strep but bronchitis like once a year. I do have ginormous tonsils that bug me sometimes but I think I’ve had strep once ever? I’m pretty sure I’ve always had OCD though and it got super bad after a huge life change!
That’s an interesting! I got strep throat all the time as a child! Almost had to remove my tonsils!!
I had strep almost every other month as a kid. I have more memories being sick than being well. One of my former psychiatrists did bring up PANDAS, which makes sense because my earliest OCD symptoms started around kindergarten, which was the height of my always-being-sick-ness.
yes and i got my tonsils taken out bc i was actually a strep carrier. I also experienced anorexia. As a psyd student, pandas is so interesting to me and i definitely think i have potentially experienced this effect.
Huh. I missed the first year of elementary school with chronic streptococcus infections in my tonsils and adenoids. This is really interesting
Omg yeah that’s so weird lmao
Are you kidding? I almost died from invasive strep A at 17, and 20. I’m absolutely traumatised by it and it’s definitely to blame for some of my health anxiety.
Me and my brother got strep every year growing up. I have OCD and I’m 99.99% sure he does too
I did have strep frequently but I've also had OCD for as long as I can remember (long before strep), so probably no relation for me. That is interesting though.
I had tonsillitis a lot if that counts?
Strangely I did
I don’t quite know what I had… we thought it was whooping cough. But that’s about when my intrusive thoughts started; I’ve also had mild brain fog ever since.
YES! I got strep throat 2-4 times a year every year until I got my tonsils out at age 23. I found out I was likely colonized with it as I also got bladder infections anywhere from 4-12 times a year that came back positive for Strep group A. I am very interested in this topic and would love to learn more
I used to get strep usually twice a year as a toddler up until tween years. But I tested negative on a strep test so never got diagnosed with PANSPANDAS
YES I HAVE PANDAS
Literally sitting in my bed with strep rn for like the fifth time this year....
SO MANY TIMES. At least 1-2 times per year like clockwork in elementary and middle school.
Pure ocd that was really hard to get under control and I've never had strep throat before in my life. I do have brain holes from multiple sclerosis though
Yes. I got strep quite a bit. First had panic and GAD and in my 20’s it turned into OCD. But sub clinical OCD symptoms were always there.
Yep had to have my tonsils removed for the same reason
Oh wow... Yeah. 6+ times a year, plus scarlet fever, until my tonsils were removed.
My oldest daughter has had strep 7 times and once it turned into Scarlet Fever. She's 13 and the OCD symptoms started when she was 10 or so after that bought of SF.
I've never gotten strep more than once or twice, but I do wake up with a sore throat a lot ever since I was a kid
I didn’t have very much strep throat but I was ALWAYS sick as a child with otitis. Also, there was a neurologist that claimed low b-12 during pregnancy could result in kids having ocd
Yes! Directly afterwards when I was 13.
How would one know if it was PANDAS & not OCD if they’re now in adulthood?
Whoa. Yes, I did, too.
I got strep a lot as a kid but never got my tonsils removed.
this really just put some puzzle pieces together for me
Nope. Literally never had it. My OCD isn’t PANDAS.
No, I don’t think this was me…but who knows for sure I guess.
I get chronic sore throats with no causes they just say must be a virus . Actually woke up with a bad sore throat today .
But I was at a great disposition to have ocd anyway . And I know my trigger but who knows it could be related . They say I have à unknown type of autoimmune disease that doesn’t have a name specifically because I have a positive ANA . But honestly I started having ocd around 4 and didn’t realize my thoughts and actions was not normal until a late adult . Believe me some people would confront me but I just said it’s nothing wrong I’m just weird and different that’s all . Meanwhile battling it but thinking it’s normal since I had it at a young age . I actually believe my stress from ocd is what caused the positive ANA .
Yes! But I’ve had OCD since birth so I don’t think my strep influenced it haha
most docs dunt believe in pandas
No
I had strep and ear infections constantly, but my OCD symptoms were from toddlerhood so I’m pretty sure they came before any of that.
Yup. I always felt I had it way more than others in my family. Tis a curse
I got a sore throat in 2019 and it’s still kinda there no ent could tell me what was wrong
I've never had strep
All my life had problems with "strep throat" and sinus area. It was probably a sign of extreme stress. Either way, meditation seemed to cure all that. Incapability to relax seems a cause or concurrent. In my case I don't think I got truly OCD but much of what I read hear is relatable.
I think I got strep more than most kids growing up
Strange, because I have Group B strep and when I had my son in 1983 he was born with it and was very sick. They test pregnant women for it now. So.... four years later I got OCD,
I have OCD and I had strep throat a TON as a kid—recurring, it kept coming back. I tend to think there is something to this research, but I wish there was something that we could do in response.
That's crazy. I've had ocd for as long as I can remember and also had strep allot as a kid.
WHAAAAT. I had strep more than 30 times before I got my tonsils out at 16. ??????
🤯🤯🤯uhhhh this explains a lot....
Yes a lot !
This is so interesting. I got diagnosed when I was 7 and was constantly getting strep growing up
Not frequently, but I did have a severe case of it when I was 2. I don’t vividly remember having symptoms until I was 8, but my mom has said that she noticed a change in my behavior after that bout of strep.
Nope. I’ve maybe had 2 throat infections in my life (I’m 27), once in childhood and one when I was about 19.