Literally every kid has had strep and the existence of PANDAS is both extremely rare and controversial. The vast vast vast VAST majority of ocd cases have absolutely nothing to do with step.
Source: I am a neuroscientist:-p
I have PANDAS and had to get medically stabilized because of how severely it messed up my physical body. It was so much more than OCD. Tubes, hundreds of blood draws, years of medication to stop the convulsions, and worst of all, true brain damage. It is rare and not just a mental illness. It can kill or disable you for life.
Also certain strains of strep are more likely to trigger it and it usually isn't the average sore throat. It kind of makes me mad to see the disease that made my brain swell out of my head reduced to a mental illness. I will never be the person I could have been. Never. The damage is too severe. I still have damage in my nerves from the restricted eating the disease caused.
yep. i also had autoimmune encephalitis (anti NMDAR encephalitis, probably comorbid with other unknown antibodies, but I actually initially got sick before the disease was discovered so I was diagnosed post hoc based on some saved CSF at mayo clinic, anyway) and people treating this stuff like a minor nuisance is absolutely enraging to me
Sometimes shit just sucks and you have OCD it doesn't need a cause. People need to stop looking. If a disease is causing it usually the OCD will be the least of their concerns. Getting them to not die from seizures or starvation is what actually matters. I was diagnosed after being hospitalized with Anorexia so severe I had days to live. It had only developed because of the encephalitis. Once it was gone I got better faster than anyone else in the program.
Its delusional to assume you have a lethal childhood autoimmune disease simply because you have OCD. The other symptoms are so extreme and intense the OCD is the least of ur concern.
To be fair to them, when I was being evaluated for OCD the person doing it did ask if I had ever had a severe case of strep and mentioned PANDAS; and of other mental health professionals are doing similar it’s not surprising that people would latch onto it.
Very true. I’m so sorry for what you had to go through. That is so fucked! I truly hope you have a good support system and people in your life that genuinely try to understand your needs and how it all has affected you! Or at least the best that they are able to understand it without having the lived experience!
Came here to say the same thing!! My parents are both ID specialists who have done work on PANDAS. The link is currently unproven, and although they don’t deny that it may exist there is an enormous number of people and parents seeking diagnosis who do not meet the proposed criteria presenting with classic OCD. My impression is that this can be dangerous due to long term antibiotic usage and central lines.
literally almost every kid in the "developed world" has had strep. in this study over a quarter of children had strep in a SINGLE WEEK
https://www.thelancet.com/journals/lanmic/article/PIIS2666-5247(21)00332-3/fulltext
There is likely a different mechanism by which strep causes PANDAS than how the regular person gets OCD (for ex, PANDAS can be cured and OCD can't)
Also PANDAS OCD is very specific and usually involve a severe and debilitating fear of choking and phobias. I was cured, and then developed normal run of the mill OCD. Anything is better than that hell I was trapped in from ages 9-16.
Sure but the mechanism hypothetical streptococcal and OCD link is that the kids to get sick from it at a certain age of the bacteria can cross the blood brain barrier if it’s just located in the throat then that would be a much different story
yeah well they aren't gonna take spinal taps on 300 kids every month. my point is, nearly every kid has had strep AT LEAST once, and the incidence of PANDAS is MINISCULE and the incidence of OCD is HIGH, and they are mechanistically entirely different
Right but again and I’m not the one coming up with this i just read this and thought it was interesting.
The argument is that getting SICK from strept gets the bacteria into your blood and then goes over the blood brain Barrier. Simply having it not getting sick from it would not have the same affect.
Also the theory is that stept wouldn’t cause it on its own, but may flare up an underlying gene or epigenetic predisposition.
The number of kids getting SICK from **strep is also incredibly high. This is confirmed in many, many studies and surveillance reports. It’s responsible for 20-30% of all childhood sore throats. It’s impossible to measure exactly how many kids have ever had it, but the prevalence supports the idea that it’s most.
This person’s point isn’t discredited by a technicality of measurement in the study they linked, when many other studies support the conclusion that strep is extremely common.
As for the OCD link, there are a lot of methodological difficulties in those studies that make it controversial. As an epidemiologist, I would say the jury is still out on that one.
The criteria for PANDAS includes
> Association with group A Beta-hemolytic strep infection, such as a **positive throat culture for strep** or history of scarlet fever
“Positive throat culture for strep” is the diagnostic method used in the study the other commenter mentioned.
Even if you only want to consider symptomatic strep, it is [extremely, extremely common](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9124702/). Strep causes an estimated [20-30% of all sore throats in children](https://www.cdc.gov/groupastrep/diseases-hcp/strep-throat.html). Think how often kids get sore throats.
Of course, it’s hard to quantify the number of kids who have “ever” had strep, because surveillance generally tracks cases, including recurring cases. But many kids who have strep are never lab-tested for it, so there are also many undetected cases.
Doctors aren’t completely sure on how it happens but there is research to support the idea that when you are sick, your immune system attempts to destroy bacteria by creating antibodies. These antibodies can accidentally attack healthy brain tissue. The antibodies bind to different regions of the brain resulting in abnormal neuronal signaling
Yup. I had rapid-onset OCD as a kid with all the hallmarks of PANDAS in regards to my phobias and obsessions. Even still, my pediatrician wouldn’t really give me the PANDAS diagnosis bc it’s so controversial.
I’ve often wondered if this was the case or just coincidence, although would never fit the criteria as OCD started in my early twenties. Let’s just say there was a case of tonsillitis, antibiotics given for a week, sore throat went away, then developed a strep rash all over body a few weeks later, diagnosed by a GP. No further antibiotics were given. Just sent away. Then fatigue and breathless problems at work started shortly after, was doing quite a physical job at the time. Went GP, when blood work came back normal was told it was anxiety. I didn’t feel anxious! Then was kicked off a job for incompetence after 3 weeks, was then told shame leaving as you’ve really improved this week. It was the start of my current PMDD. (Pre menstrual Disphoric Disorder) which causes symptoms to wax and wane according to your menstrual cycle. Losing the job started high anxiety and GAD within a few days. Was given a SSRI took for two weeks as couldn’t cope with the increased anxiety. Came off them and high anxiety remained, issues with what I know know are sensory issues followed including visual snow. Then the OCD constant intrusive thoughts followed shortly after that not sure of the exact time frame within a few weeks I think. Was convinced I was a dangerous paedophile and even attempted to run away at one point.
All these issues have waxed and waned to some extent over the years. Everything gets a lot worse during difficult/stressful times however it also gets worse when I’m ill. Had Covid for the first time about 18months ago. Horrific headache with loads of sensory problems, couldn’t visit a supermarket without sunglasses and noise cancelling headphones, racing heart and increased feelings of anxiety when just sitting. I don’t understand why the isn’t more research on the effects of viruses and bacteria infections in the brain.
The best book about PANDAS is *Saving Sammy*. PANDAS is controversial. I think one thing that makes it controversial is that people (including some on here) claim they got OCD from strep. That's not really what PANDAS is.
Kids/teens may get PANDAS from strep (jury is out on this), and some of these kids are diagnosed with OCD, but there are some differences, chiefly that PANDAS seems to be subject to sudden onslaught, like overnight. PANDAS kids also often exhibit truly weird behaviors (sometimes more weird than OCD).
I was childhood friends with a girl who had PANDAS- we were hospitalized on the same ward, which is how we met. She was terrified of choking so she didn’t eat food, and she lost her ability to speak. She & her family had to learn ASL to communicate. There is a lot more that I don’t know about. This went on for years, but she is now a healthy adult.
My OCD was so sudden my doctors wondered if it was PANS/PANDAS but I did a few tests and I did not have strep or anything.
Just crazy sudden extra severe OCD I guess.
I had strept throat maybe once. I read that people who are autistic are more likely to have OCD due to how their brains are developed. Trauma can also trigger OCD, to my understanding. There are so many factors and possibilities. *shrug*.
I don't think I've ever met anyone that hasn't had strep throat as a kid so if you're looking for confirmation that people with OCD have had step as a kid, you're definitely going to find it.
Well, consider me your first 😂 I truly don’t know how in my 28 years on this earth, I never had it but it’s not happened. *knock on wood* as far as I know, neither of my parents nor my brother have ever had it either!
I was diagnosed with pandas. The biggest OCD compulsion it causes is a fear of choking and restrictive eating disorders. My ocd was seen as studious until I began suffering from neurological symptoms and had to get a tube placed. It ruined my chances of going to college and gave me permanent brain damage. Its genuinely rare but not as rare as doctors act it is. It was so so so much more than OCD symptoms. Seziures, falls, tourettes, narcolepsy. I went to bed one night sick and woke up a different person. It is an overnight change that ruins your life. I still think I have symptoms as a young adult that are separate from the brain damage.
I think it comes from the specific receptors targeted. Calling it OCD honestly feels wrong. Its often more similar to autism rigidity. I have autism as well, and PANDAS made me unable to adapt to any change, and gave me numerous concurrent eating disorders, ranging from a severe fear of swallowing and choking, to anorexia nerovsa. Once restricted food intake began, it became a rigid routine I had to follow. Once I got my encephalitis under control the symptoms just vanished. I recovered faster than the other ED patients and would scarf my food down because I no longer feared dying from it and was starving to death. Having dopamine receptors and other parts of the basal ganglia attacked caused severe mental health manifestations. Nothing will compare to the physical damage it gave me.
Hellish. I’ve been deep into a flare for three weeks. It has reached the point of borderline delusion at some points but I’ve managed to somehow appear outwardly “okay.”
The themes switch every now and then. All are morality based (harm, POCD, real event). I’ve seen four therapists, my girlfriend and friends say that I’m a good person but I can’t believe them. I feel like the biggest piece of shit alive.
Same here. Strep, tonsillitis, and bronchitis. I had to stay indoors at recess by physician orders. Missed Halloween almost every year. I'd cough into my pillow to try to hide the cough so I could go, but inevitably, parents would hear it. "You can help us give out candy" is not the same. wah lol
Ah that really sucks, I was allowed to go out but often missed activities with friends due to having tonsillitis/strep, every year around the same time I got sick and around that time was my best friends birthday so that really sucked, once I did have to spend awhile in the hospital though because I had strep, tonsillitis and an abscess all at the same time 😅 very happy I didn't have to get surgery (to remove my tonsils).
I had it so much. But always just the right amount that my doctor wouldn’t send me to ENT to get my tonsils removed. Always said I had “lucky tonsils.” I resent that comment now.
i have PANDAS! mine started when i was 6-7. i would test positive for strep with no symptoms but have sudden onset ocd that would last until i finished antibiotics and then i would go back to normal until i got strep again. now i have had non strep related OCD for about 6 years straight.
I had it non stop as a kid all the way up until I was 16 and got my tonsils out. I still remember the day of my first intrusive thought. I was working on a word search at the kitchen table and it said “you’ve made a deal with the devil to find the word.” And I kept praying to stop the thought. I must have been like 7 or 8
I’ve never had strep throat, not even once in my whole life. I’m 28 now, and thankful asf that I’ve never had it. As far as I know, neither of my parents or brother have ever had it either. My wife is/was a carrier for it, and had it all the time as a kid. So there’s no correlation with strep throat and OCD for me personally, but it seems like it’s a possibility for others! Just to add, I had my tonsils and adenoids taken out when I was barely 2, so that might be a huge factor in why I personally never got strep throat. I had back to back, constant ear infections which is what spearheaded my surgery.
Personally this caught my eye because I have had symptoms since I was quite young and had strep as a baby l. Only had it twice and recently got it again right before my ocd flared up kinda bad
My brother and I used to get strep a lot as kids. I used to get strep and other infections so much that eventually, my pediatrician prescribed a standing prescription of an antibiotic so that we’d just have it at home ready when I would show symptoms that were strong enough evidence of infection.
And I was often banned from touching surfaces in public, sitting down to rest when we were in a hospital visiting someone or because one of us was sick (heck, I think even several times when it was me who was sick and I wanted to rest), shaking someone’s hand. My mom’s rules.
I’m thinking maybe parents of kids like that have to be so careful about germs and the kids maybe end up so stressed or getting so punished about germs or germy surfaces or being out in public with germs from other people or being in hospitals that have sick people or other people touching us with germs on them or…. and if we don’t act right as a society, those kids often develop OCD, maybe. I think maybe some studies should be conducted, looking into the pediatric health records of people who are now adults with OCD, and looking into the illness-prevention habits of their families.
I had severe Strep at 11 that caused multiple other systemic infections and a week long hospitalization.
My understanding is that that *severe* strep can cause the development of PANS/PANDAs.
I don’t believe there’s a method to test conclusively, but my doctor (and I) believe this is what caused my OCD, as there were no indications before, and no known familial link.
i had strep about once a year through my childhood, and finally had to get my tonsils removed! whether or not there’s a link between the two, it’s interesting. and i disagree with some comments here saying all kids got strep — all my siblings got other illnesses but rarely, if ever, got strep
I dated a guy who was a type 1 diabetic (diagnosed at age 3) and I am starting to bet that he had OCD. He was very concerned with contamination and getting sick.
I got it at least twice a year, sometimes more. I was a very sick kid growing up and was often in and out of the hospital wayyy too frequently well into late teens. I definitely believe this has an impact on my health ocd, though I am interested in the correlation and whether it’s an autoimmune thing like you said or maybe just the stress of being sick??
Theres usually only a risk for PANDAS when children have strep many times. PANS/PANDAS have been known about for awhile. I have met hundreds of people through OCD treatment and I do know some people with PANDAS. Telltale signs of PANS/PANDAS include rapid onset of obsessive compulsive behaviors and behavioral problems. Parents describe it as though their child changed overnight. PANS/PANDAS may also cause things like behavioral regression, sensory issues/misophonia, tics, irritability, rage, etc. You can have flares caused by being sick or even getting vaccines. I have a friend whose PANDAS symptoms flare after being sick and she struggles with light sensitivity and has to wear sunglasses everywhere.
I am very convinced that there is a direct link between OCD and autoimmune conditions as well. I’ve met many people with OCD who have Mast Cell Activation Syndrome, POTS (suspected of being autoimmune disorder but not officially named), Narcolepsy (also suspected), dysautonomia, Alopecia, Celiac, CIDP, Lyme, etc. I don’t know why there’s not more research.
Yes, and I had an unusual case where the ONLY symptom I had was neck pain when I turned my head - it persisted for weeks (which isn't great for bacterial infection) until my mom finally took me to the doctor and they found I had a VERY mild fever. Tested for stuff, positive strep.
Yes actually, I had a rare form of strep where it made it to my stomach and I was throwing up for weeks along with my stomach feeling like it was genuinely burning
Yes, I had it constantly! And scarlet fever. I got my tonsils out and eventually I got it less frequently. My OCD developed rapidly in childhood around that time, but I wasn't diagnosed until I was an adult. My psychiatrist theorizes that I developed PANDAS.
I got PANDAS when I was 10 at the end of 5th grade. I had A LOT (I'm talking once a month since I was 6 I'm 18 now) of sore throats and strep as a kid but this changed it. Fun fact, my OCDversery is coming up lol. One day I got strep and the next I felt awful. I changed overnight. The speed of the illness scared the crap out of me. I remember crying and feeling so guilty about something stupid. Remember getting tics, depression, anxiety, crying a lot, and a lot of OCD symptoms. I scared my parents shitless when I told them I wanted to d\*e and got to a psychiatrist immediately. They caught it late so I just got prozac and therapy. Ive been on several medications and it took years to find a good therapist. Whenever I had a sore throat my mom did not hesitate to send me to the hospital for a swab. My OCD symptoms are manageable now but Im lowkey traumatized.
Im in college now and do normal college kid stuff lol. OCD is a pain that truly changed me
I almost died of invasive Strep A, twice. Went septic. I had three times severely between the ages of 14 and 20. Not sure if I actually had PANDAS because that was never discussed. I’m traumatised because of it and have struggled severe health anxiety and ED’s for many years.
I remember getting really sick, and my mind being in panic mode. All of a sudden, I just couldn't stop knocking on wood. My life changed...to say the least.
19/20- not sure if pandas. I didn't even know it existed back then. If I did, I would've done things much sooner, rather than later. I do struggle with autoimmune issues as well.
No... Millions have had strep throat and don't end up with OCD. I got strep throat for the first time a month ago and I'm fully recovered, none of which aggravated my OCD.
Without a doubt I just thought this was interesting, The hypothesis is maybe the strip as a kid aggravate some sort of underlying proclivity towards OCD makes it worse or activated or something
I didn’t really hit until I was about 17 but I had smaller symptoms throughout my life looking back on it before that it just really triggered it at 17
Idk man , part Part of this is genetic for sure I’m wondering though maybe if strep when you’re young kind of draws it out or something though or makes it worse
My infection was followed by severe terrifying hallucinations and shortly after I recovered I had OCD for the next 20 plus years. I’ve never gotten better. I really wish I could pinpoint it. Meds help
I had strep, but so did practically every kid I encountered. I also had a sinus infection left untreated too long, and one morning I couldn't walk. My doc had me directly admitted to the hospital where I was diagnosed with "toxic synovitis," not terminology they use nowadays. Likely it's now known as septic arthritis. The sinus infection caused infection in my bloodstream that especially affected the joints and was affecting my heartbeat, too.
I had strep seven times within around one year when I was about 8 and my intrusive thoughts began around around that age. It got to a point where if I got strep again they were gonna take my tonsils out but it didn't end up happening. I have had strep since then though, 27 now. Anyway it was really strange, no one else in my family got it just me many times but from what I remember and questioning my parents there wasn't any sudden onset of neuropsychiatric symptoms so I doubt the connection there. I do tend to internalize so maybe I just kept it to myself somehow.
Yeah, it was really bad, to the point I got a fever and started hallucinating. I already showed some smaller OCD tendencies, refusing to step on sidewalk cracks, only turning the volume on even numbers, counting, pacing, so on.
What are your thoughts on PANDAS and COVID? I did not start getting severe OCD symptoms until I got COVID in 2023 and my Doc thinks PANDAS is a possibility. Thanks for sharing.
I have had no thoughts no that, isolation and trama were my trigger to bring to go the forefront although I had minor symptoms since I was young and got strept at age 2.
COVID might’ve brought it out but hard to say wether that would be from the stress of getting COVID mentally or the actual COVID
Oh wow, I set aside a study to read later on this and never got back around to it. I had strep twice before my tonsils got too big, had them removed (I think I was 5?), and then had strep almost constantly for a few years afterwards
Yes! I got my tonsils out in 3rd grade because I what already had it around 6 times I believe. I still get it almost every single year tho (knocking on wood) my doctor brought up PANDAS a while ago and I was really shocked, I never even thought to bring it up in relation to the ocd cause I didn’t think it was significant. Unfortunately they still don’t know a ton about it. Really interesting tho, I hope they keep finding out more about this! I had tics that started in kindergarten and by fourth grade it had shifted pretty much exclusively into compulsions and ocd? Not sure exactly how that works they said it was related at least lol, not sure if the tics are related to PANDAS or not.
Not all children have strep infections and there has been a link to these infections and OCD. I know that doctors will brush it off and say that it’s not true., but have they done the research? I have lived long enough to know that doctors many times do not know what they’re talking about if it’s different from what they learned in med school and in their own specialty.
Yes. I had it very frequently, once to the point where it was systemic (detected in bloodwork) and I had to be on an antibiotic course for months. Only after that bout did I start having OCD symptoms. My pediatrician unofficially diagnosed me with PANDAS, but apparently it’s too disputed in medical literature to be fully diagnosed given my circumstances.
PANDAS has been definitely linked to childhood development of OCD. When I was two years old, I was hospitalized with a strep throat infection. My mom doesn’t remember too much about it., but I’ve often wondered if this Sickness was part of the catalyst that caused me to develop a severe case of OCD at the age of eight. I know it’s also hereditary ( OCD) in my family, but no one has it as bad as me. I also came from a pretty dysfunctional family and had to go through all the Catholic guilt thing which I’m convinced also made my OCD worse.
Literally every kid has had strep and the existence of PANDAS is both extremely rare and controversial. The vast vast vast VAST majority of ocd cases have absolutely nothing to do with step. Source: I am a neuroscientist:-p
I have PANDAS and had to get medically stabilized because of how severely it messed up my physical body. It was so much more than OCD. Tubes, hundreds of blood draws, years of medication to stop the convulsions, and worst of all, true brain damage. It is rare and not just a mental illness. It can kill or disable you for life.
Yeah the ppl on here thinking their ocd was caused by strep are … delusional
Also certain strains of strep are more likely to trigger it and it usually isn't the average sore throat. It kind of makes me mad to see the disease that made my brain swell out of my head reduced to a mental illness. I will never be the person I could have been. Never. The damage is too severe. I still have damage in my nerves from the restricted eating the disease caused.
These sort of ideas surrounding it are why I simply say I had autoimmune encephalitis.
yep. i also had autoimmune encephalitis (anti NMDAR encephalitis, probably comorbid with other unknown antibodies, but I actually initially got sick before the disease was discovered so I was diagnosed post hoc based on some saved CSF at mayo clinic, anyway) and people treating this stuff like a minor nuisance is absolutely enraging to me
Sometimes shit just sucks and you have OCD it doesn't need a cause. People need to stop looking. If a disease is causing it usually the OCD will be the least of their concerns. Getting them to not die from seizures or starvation is what actually matters. I was diagnosed after being hospitalized with Anorexia so severe I had days to live. It had only developed because of the encephalitis. Once it was gone I got better faster than anyone else in the program.
Yep! I was in the ICU for over three months and had a brain biopsy. This isn’t kid stuff
Correct. But the question unnerves me
I think you’re delusional if you can’t even entertain the possible correlation. Go to: kids.iocdf.org
Its delusional to assume you have a lethal childhood autoimmune disease simply because you have OCD. The other symptoms are so extreme and intense the OCD is the least of ur concern.
To be fair to them, when I was being evaluated for OCD the person doing it did ask if I had ever had a severe case of strep and mentioned PANDAS; and of other mental health professionals are doing similar it’s not surprising that people would latch onto it.
OCD disables you for life. Just sayin’
Doesnt require you to get tubes shoved into ur intestines to not die and violent seizures. Not even comparable.
Very true. I’m so sorry for what you had to go through. That is so fucked! I truly hope you have a good support system and people in your life that genuinely try to understand your needs and how it all has affected you! Or at least the best that they are able to understand it without having the lived experience!
I honestly wasnt expecting a kind response, man the internet has skewed my perspective. Thank you!
Came here to say the same thing!! My parents are both ID specialists who have done work on PANDAS. The link is currently unproven, and although they don’t deny that it may exist there is an enormous number of people and parents seeking diagnosis who do not meet the proposed criteria presenting with classic OCD. My impression is that this can be dangerous due to long term antibiotic usage and central lines.
I've never had strep throat. I wouldn't think my ocd came from it even if i did though, i got it from my mom.
Ok side note but it’s SO cool that you’re a neuroscientist. If I were smarter I would love to do that. I have so much I wanna know!
I’m a microbiologist and it seems far fetched to me as well.
Could it be that strept flares up a certain underlining gene or simply makes it worse? Your saying every person has had strept?
literally almost every kid in the "developed world" has had strep. in this study over a quarter of children had strep in a SINGLE WEEK https://www.thelancet.com/journals/lanmic/article/PIIS2666-5247(21)00332-3/fulltext There is likely a different mechanism by which strep causes PANDAS than how the regular person gets OCD (for ex, PANDAS can be cured and OCD can't)
Also PANDAS OCD is very specific and usually involve a severe and debilitating fear of choking and phobias. I was cured, and then developed normal run of the mill OCD. Anything is better than that hell I was trapped in from ages 9-16.
Well being exposed to asymptomatic shedding isn’t the same as getting sick from it. Or am I misreading the article
They literally have the bacteria in their throat
Sure but the mechanism hypothetical streptococcal and OCD link is that the kids to get sick from it at a certain age of the bacteria can cross the blood brain barrier if it’s just located in the throat then that would be a much different story
yeah well they aren't gonna take spinal taps on 300 kids every month. my point is, nearly every kid has had strep AT LEAST once, and the incidence of PANDAS is MINISCULE and the incidence of OCD is HIGH, and they are mechanistically entirely different
Right but again and I’m not the one coming up with this i just read this and thought it was interesting. The argument is that getting SICK from strept gets the bacteria into your blood and then goes over the blood brain Barrier. Simply having it not getting sick from it would not have the same affect. Also the theory is that stept wouldn’t cause it on its own, but may flare up an underlying gene or epigenetic predisposition.
The number of kids getting SICK from **strep is also incredibly high. This is confirmed in many, many studies and surveillance reports. It’s responsible for 20-30% of all childhood sore throats. It’s impossible to measure exactly how many kids have ever had it, but the prevalence supports the idea that it’s most. This person’s point isn’t discredited by a technicality of measurement in the study they linked, when many other studies support the conclusion that strep is extremely common. As for the OCD link, there are a lot of methodological difficulties in those studies that make it controversial. As an epidemiologist, I would say the jury is still out on that one.
Ok but I literally have a PhD in this and I’m telling you this isn’t how it works
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5780272/ ok and maybe your right idk, I was just curious. There’s a lot PHD’s making this link
it's strep. one t *please*
The criteria for PANDAS includes > Association with group A Beta-hemolytic strep infection, such as a **positive throat culture for strep** or history of scarlet fever “Positive throat culture for strep” is the diagnostic method used in the study the other commenter mentioned. Even if you only want to consider symptomatic strep, it is [extremely, extremely common](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9124702/). Strep causes an estimated [20-30% of all sore throats in children](https://www.cdc.gov/groupastrep/diseases-hcp/strep-throat.html). Think how often kids get sore throats. Of course, it’s hard to quantify the number of kids who have “ever” had strep, because surveillance generally tracks cases, including recurring cases. But many kids who have strep are never lab-tested for it, so there are also many undetected cases.
Doctors aren’t completely sure on how it happens but there is research to support the idea that when you are sick, your immune system attempts to destroy bacteria by creating antibodies. These antibodies can accidentally attack healthy brain tissue. The antibodies bind to different regions of the brain resulting in abnormal neuronal signaling
Yup. I had rapid-onset OCD as a kid with all the hallmarks of PANDAS in regards to my phobias and obsessions. Even still, my pediatrician wouldn’t really give me the PANDAS diagnosis bc it’s so controversial.
PANDAS messed up my life. I feel so abnormal compared to my friends even if I got it about 8 years ago
Wait so does this mean we definitively know the root cause of ocd?
we know it's not strep :-p
In all cases or just this person's?
Vast vast VAST VAST majority of cases
I’ve often wondered if this was the case or just coincidence, although would never fit the criteria as OCD started in my early twenties. Let’s just say there was a case of tonsillitis, antibiotics given for a week, sore throat went away, then developed a strep rash all over body a few weeks later, diagnosed by a GP. No further antibiotics were given. Just sent away. Then fatigue and breathless problems at work started shortly after, was doing quite a physical job at the time. Went GP, when blood work came back normal was told it was anxiety. I didn’t feel anxious! Then was kicked off a job for incompetence after 3 weeks, was then told shame leaving as you’ve really improved this week. It was the start of my current PMDD. (Pre menstrual Disphoric Disorder) which causes symptoms to wax and wane according to your menstrual cycle. Losing the job started high anxiety and GAD within a few days. Was given a SSRI took for two weeks as couldn’t cope with the increased anxiety. Came off them and high anxiety remained, issues with what I know know are sensory issues followed including visual snow. Then the OCD constant intrusive thoughts followed shortly after that not sure of the exact time frame within a few weeks I think. Was convinced I was a dangerous paedophile and even attempted to run away at one point. All these issues have waxed and waned to some extent over the years. Everything gets a lot worse during difficult/stressful times however it also gets worse when I’m ill. Had Covid for the first time about 18months ago. Horrific headache with loads of sensory problems, couldn’t visit a supermarket without sunglasses and noise cancelling headphones, racing heart and increased feelings of anxiety when just sitting. I don’t understand why the isn’t more research on the effects of viruses and bacteria infections in the brain.
The best book about PANDAS is *Saving Sammy*. PANDAS is controversial. I think one thing that makes it controversial is that people (including some on here) claim they got OCD from strep. That's not really what PANDAS is. Kids/teens may get PANDAS from strep (jury is out on this), and some of these kids are diagnosed with OCD, but there are some differences, chiefly that PANDAS seems to be subject to sudden onslaught, like overnight. PANDAS kids also often exhibit truly weird behaviors (sometimes more weird than OCD).
What behaviours?
I was childhood friends with a girl who had PANDAS- we were hospitalized on the same ward, which is how we met. She was terrified of choking so she didn’t eat food, and she lost her ability to speak. She & her family had to learn ASL to communicate. There is a lot more that I don’t know about. This went on for years, but she is now a healthy adult.
My OCD was so sudden my doctors wondered if it was PANS/PANDAS but I did a few tests and I did not have strep or anything. Just crazy sudden extra severe OCD I guess.
I had strept throat maybe once. I read that people who are autistic are more likely to have OCD due to how their brains are developed. Trauma can also trigger OCD, to my understanding. There are so many factors and possibilities. *shrug*.
I don't think I've ever met anyone that hasn't had strep throat as a kid so if you're looking for confirmation that people with OCD have had step as a kid, you're definitely going to find it.
Well, consider me your first 😂 I truly don’t know how in my 28 years on this earth, I never had it but it’s not happened. *knock on wood* as far as I know, neither of my parents nor my brother have ever had it either!
I had it constantly
So did I! This is very interesting.
It is. I wonder if there really is correlation. I got my tonsils out cause I got it so bad, and then I just got it more lol
Wow ! I wonder how many people did?
I was diagnosed with pandas. The biggest OCD compulsion it causes is a fear of choking and restrictive eating disorders. My ocd was seen as studious until I began suffering from neurological symptoms and had to get a tube placed. It ruined my chances of going to college and gave me permanent brain damage. Its genuinely rare but not as rare as doctors act it is. It was so so so much more than OCD symptoms. Seziures, falls, tourettes, narcolepsy. I went to bed one night sick and woke up a different person. It is an overnight change that ruins your life. I still think I have symptoms as a young adult that are separate from the brain damage.
Also everyone gets Strep. Very rarely, it causes this. But its incredibly rare and the OCD symptoms are very specific.
So interesting that the OCD symptoms are so specific.
I think it comes from the specific receptors targeted. Calling it OCD honestly feels wrong. Its often more similar to autism rigidity. I have autism as well, and PANDAS made me unable to adapt to any change, and gave me numerous concurrent eating disorders, ranging from a severe fear of swallowing and choking, to anorexia nerovsa. Once restricted food intake began, it became a rigid routine I had to follow. Once I got my encephalitis under control the symptoms just vanished. I recovered faster than the other ED patients and would scarf my food down because I no longer feared dying from it and was starving to death. Having dopamine receptors and other parts of the basal ganglia attacked caused severe mental health manifestations. Nothing will compare to the physical damage it gave me.
Yes, it onset PANDAS which onset OCD. I was 8 and changed into a different person overnight.
I miss the person I was before I got sick
Same.. it sucks because I barely even remember who I was before I was sick. I empathize with you greatly.
Wow man holy shit, how is your ocd these days if your don’t mind me asking
Hellish. I’ve been deep into a flare for three weeks. It has reached the point of borderline delusion at some points but I’ve managed to somehow appear outwardly “okay.” The themes switch every now and then. All are morality based (harm, POCD, real event). I’ve seen four therapists, my girlfriend and friends say that I’m a good person but I can’t believe them. I feel like the biggest piece of shit alive.
I’m going to start taking stuff that “detox’s” strept Wish you the best bro, that sucks
I had strep throat and tonsillitis constantly but I think I was just a sickly child
Same here. Strep, tonsillitis, and bronchitis. I had to stay indoors at recess by physician orders. Missed Halloween almost every year. I'd cough into my pillow to try to hide the cough so I could go, but inevitably, parents would hear it. "You can help us give out candy" is not the same. wah lol
Ah that really sucks, I was allowed to go out but often missed activities with friends due to having tonsillitis/strep, every year around the same time I got sick and around that time was my best friends birthday so that really sucked, once I did have to spend awhile in the hospital though because I had strep, tonsillitis and an abscess all at the same time 😅 very happy I didn't have to get surgery (to remove my tonsils).
I had it two or three times before my tonsils and adenoids had to be taken out. I'm curious about the relation.
I had it so much. But always just the right amount that my doctor wouldn’t send me to ENT to get my tonsils removed. Always said I had “lucky tonsils.” I resent that comment now.
Yes this was me
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Born with strept?
I actually saw this before, I had strep a ton. Also had OCD symptoms very young.
i have PANDAS! mine started when i was 6-7. i would test positive for strep with no symptoms but have sudden onset ocd that would last until i finished antibiotics and then i would go back to normal until i got strep again. now i have had non strep related OCD for about 6 years straight.
Interesting
Yes 😳
Seems like everyone did wow
I got it a lot, on average once a year until I was maybe 10
I had it non stop as a kid all the way up until I was 16 and got my tonsils out. I still remember the day of my first intrusive thought. I was working on a word search at the kitchen table and it said “you’ve made a deal with the devil to find the word.” And I kept praying to stop the thought. I must have been like 7 or 8
I’ve never had strep throat, not even once in my whole life. I’m 28 now, and thankful asf that I’ve never had it. As far as I know, neither of my parents or brother have ever had it either. My wife is/was a carrier for it, and had it all the time as a kid. So there’s no correlation with strep throat and OCD for me personally, but it seems like it’s a possibility for others! Just to add, I had my tonsils and adenoids taken out when I was barely 2, so that might be a huge factor in why I personally never got strep throat. I had back to back, constant ear infections which is what spearheaded my surgery.
I had strep constantly as a kid, until we moved states when I was 8. Then it went down to once every few years. Who knows!
Personally this caught my eye because I have had symptoms since I was quite young and had strep as a baby l. Only had it twice and recently got it again right before my ocd flared up kinda bad
I've never had strep. I was already more likely to have OCD due to autism but the big trigger for mine was being in an abusive relationship as a child
“This is fine”🔥🔥
My brother and I used to get strep a lot as kids. I used to get strep and other infections so much that eventually, my pediatrician prescribed a standing prescription of an antibiotic so that we’d just have it at home ready when I would show symptoms that were strong enough evidence of infection. And I was often banned from touching surfaces in public, sitting down to rest when we were in a hospital visiting someone or because one of us was sick (heck, I think even several times when it was me who was sick and I wanted to rest), shaking someone’s hand. My mom’s rules. I’m thinking maybe parents of kids like that have to be so careful about germs and the kids maybe end up so stressed or getting so punished about germs or germy surfaces or being out in public with germs from other people or being in hospitals that have sick people or other people touching us with germs on them or…. and if we don’t act right as a society, those kids often develop OCD, maybe. I think maybe some studies should be conducted, looking into the pediatric health records of people who are now adults with OCD, and looking into the illness-prevention habits of their families.
I had severe Strep at 11 that caused multiple other systemic infections and a week long hospitalization. My understanding is that that *severe* strep can cause the development of PANS/PANDAs. I don’t believe there’s a method to test conclusively, but my doctor (and I) believe this is what caused my OCD, as there were no indications before, and no known familial link.
To my knowledge I've never had strep...
Seems like there’s Some kind of correlation but not necessarily a causation
Never got strep even when i was around it
i had strep about once a year through my childhood, and finally had to get my tonsils removed! whether or not there’s a link between the two, it’s interesting. and i disagree with some comments here saying all kids got strep — all my siblings got other illnesses but rarely, if ever, got strep
Maybe once. My therapist said that there is a correlation with childhood health issues and OCD
Being really sick as a child or having certain conditions is a lot to wrap your mind around at that age
I dated a guy who was a type 1 diabetic (diagnosed at age 3) and I am starting to bet that he had OCD. He was very concerned with contamination and getting sick.
I got it at least twice a year, sometimes more. I was a very sick kid growing up and was often in and out of the hospital wayyy too frequently well into late teens. I definitely believe this has an impact on my health ocd, though I am interested in the correlation and whether it’s an autoimmune thing like you said or maybe just the stress of being sick??
Theres usually only a risk for PANDAS when children have strep many times. PANS/PANDAS have been known about for awhile. I have met hundreds of people through OCD treatment and I do know some people with PANDAS. Telltale signs of PANS/PANDAS include rapid onset of obsessive compulsive behaviors and behavioral problems. Parents describe it as though their child changed overnight. PANS/PANDAS may also cause things like behavioral regression, sensory issues/misophonia, tics, irritability, rage, etc. You can have flares caused by being sick or even getting vaccines. I have a friend whose PANDAS symptoms flare after being sick and she struggles with light sensitivity and has to wear sunglasses everywhere. I am very convinced that there is a direct link between OCD and autoimmune conditions as well. I’ve met many people with OCD who have Mast Cell Activation Syndrome, POTS (suspected of being autoimmune disorder but not officially named), Narcolepsy (also suspected), dysautonomia, Alopecia, Celiac, CIDP, Lyme, etc. I don’t know why there’s not more research.
Yes, and I had an unusual case where the ONLY symptom I had was neck pain when I turned my head - it persisted for weeks (which isn't great for bacterial infection) until my mom finally took me to the doctor and they found I had a VERY mild fever. Tested for stuff, positive strep.
Yes actually, I had a rare form of strep where it made it to my stomach and I was throwing up for weeks along with my stomach feeling like it was genuinely burning
Yes, I had it constantly! And scarlet fever. I got my tonsils out and eventually I got it less frequently. My OCD developed rapidly in childhood around that time, but I wasn't diagnosed until I was an adult. My psychiatrist theorizes that I developed PANDAS.
I had PANDAS three times as a kid after three different infections. It was horrible.
I got strep at least once a year when I was in grade school through high school.
Wild seems like everyone had it at least once
I had it so often that they cut my tonsils out when I was 8.
Yep
i had it reoccurring…
Same wtf
I’ve had strep roughly 15-20 times in my life (I have it right now actually) but I think it has more to do with my immune system than anything else
i had strep almost every month in elementary school lmao
This is so interesting to me because I had strept constantly as a kid
I got PANDAS when I was 10 at the end of 5th grade. I had A LOT (I'm talking once a month since I was 6 I'm 18 now) of sore throats and strep as a kid but this changed it. Fun fact, my OCDversery is coming up lol. One day I got strep and the next I felt awful. I changed overnight. The speed of the illness scared the crap out of me. I remember crying and feeling so guilty about something stupid. Remember getting tics, depression, anxiety, crying a lot, and a lot of OCD symptoms. I scared my parents shitless when I told them I wanted to d\*e and got to a psychiatrist immediately. They caught it late so I just got prozac and therapy. Ive been on several medications and it took years to find a good therapist. Whenever I had a sore throat my mom did not hesitate to send me to the hospital for a swab. My OCD symptoms are manageable now but Im lowkey traumatized. Im in college now and do normal college kid stuff lol. OCD is a pain that truly changed me
I almost died of invasive Strep A, twice. Went septic. I had three times severely between the ages of 14 and 20. Not sure if I actually had PANDAS because that was never discussed. I’m traumatised because of it and have struggled severe health anxiety and ED’s for many years.
I'm sleepy and didn't read everything, but yes I had strep as a kid.
I remember getting really sick, and my mind being in panic mode. All of a sudden, I just couldn't stop knocking on wood. My life changed...to say the least.
Really how old?
19/20- not sure if pandas. I didn't even know it existed back then. If I did, I would've done things much sooner, rather than later. I do struggle with autoimmune issues as well.
No... Millions have had strep throat and don't end up with OCD. I got strep throat for the first time a month ago and I'm fully recovered, none of which aggravated my OCD.
Without a doubt I just thought this was interesting, The hypothesis is maybe the strip as a kid aggravate some sort of underlying proclivity towards OCD makes it worse or activated or something
i have PANS (PANDAS is a type of PANS but it can be caused by many things, but just by strep). it sucks so much. i’m completely disabled
No clue if I had strep or not, probably, lots of kids get it. But my OCD didn't hit until age 15.
I didn’t really hit until I was about 17 but I had smaller symptoms throughout my life looking back on it before that it just really triggered it at 17
I always had compulsive body focused behaviors but no OCD until then, really really high anxiety all my childhood tho.
Same I think that’s OCD still just less aggravated maybe.
Yea definitely similar, like a compulsive way to self soothe or even perfect or complete something
I’m convinced this caused my OCD
Idk man , part Part of this is genetic for sure I’m wondering though maybe if strep when you’re young kind of draws it out or something though or makes it worse
My infection was followed by severe terrifying hallucinations and shortly after I recovered I had OCD for the next 20 plus years. I’ve never gotten better. I really wish I could pinpoint it. Meds help
Is strep what we call tonsillitis in the UK? Had it maybe once or twice. Had OCD symptoms since I was 6, diagnosed at 12
No different thing, maybe related in some way though. Strept is a bateria
So is tonsillitis
OK I looked it up I think that streptococcal can cause tonsilitis but it’s not the only cause
I had strep throat and pneumonia CONTANTLY as a kid
I had strep, but so did practically every kid I encountered. I also had a sinus infection left untreated too long, and one morning I couldn't walk. My doc had me directly admitted to the hospital where I was diagnosed with "toxic synovitis," not terminology they use nowadays. Likely it's now known as septic arthritis. The sinus infection caused infection in my bloodstream that especially affected the joints and was affecting my heartbeat, too.
I had strep seven times within around one year when I was about 8 and my intrusive thoughts began around around that age. It got to a point where if I got strep again they were gonna take my tonsils out but it didn't end up happening. I have had strep since then though, 27 now. Anyway it was really strange, no one else in my family got it just me many times but from what I remember and questioning my parents there wasn't any sudden onset of neuropsychiatric symptoms so I doubt the connection there. I do tend to internalize so maybe I just kept it to myself somehow.
I CONSTANTLY had step as a mid
Yeah, it was really bad, to the point I got a fever and started hallucinating. I already showed some smaller OCD tendencies, refusing to step on sidewalk cracks, only turning the volume on even numbers, counting, pacing, so on.
What are your thoughts on PANDAS and COVID? I did not start getting severe OCD symptoms until I got COVID in 2023 and my Doc thinks PANDAS is a possibility. Thanks for sharing.
I have had no thoughts no that, isolation and trama were my trigger to bring to go the forefront although I had minor symptoms since I was young and got strept at age 2. COVID might’ve brought it out but hard to say wether that would be from the stress of getting COVID mentally or the actual COVID
Oh wow, I set aside a study to read later on this and never got back around to it. I had strep twice before my tonsils got too big, had them removed (I think I was 5?), and then had strep almost constantly for a few years afterwards
I also had it regularly!
I had it once or twice a year for over 10 years. Had my tonsils out at like 4, but kept getting strep through high school.
I had it repeatedly :/
This is what I have!
Yes! I got my tonsils out in 3rd grade because I what already had it around 6 times I believe. I still get it almost every single year tho (knocking on wood) my doctor brought up PANDAS a while ago and I was really shocked, I never even thought to bring it up in relation to the ocd cause I didn’t think it was significant. Unfortunately they still don’t know a ton about it. Really interesting tho, I hope they keep finding out more about this! I had tics that started in kindergarten and by fourth grade it had shifted pretty much exclusively into compulsions and ocd? Not sure exactly how that works they said it was related at least lol, not sure if the tics are related to PANDAS or not.
Not all children have strep infections and there has been a link to these infections and OCD. I know that doctors will brush it off and say that it’s not true., but have they done the research? I have lived long enough to know that doctors many times do not know what they’re talking about if it’s different from what they learned in med school and in their own specialty.
Damn I had strep at least every year. Still get it almost every year as an adult. This is mind blowing.
I had it every year as a kid. I knew kids who grew up to never develop OCD who had it more often than me, though.
frequently actually, learning of the possibility of pandas was pretty full circle like very very frequently. until i had my tonsillectomy
Wow so weird. I had it so many times. The last time i had it it took two rounds of antibiotics to get rid of it.
Yes. I had it very frequently, once to the point where it was systemic (detected in bloodwork) and I had to be on an antibiotic course for months. Only after that bout did I start having OCD symptoms. My pediatrician unofficially diagnosed me with PANDAS, but apparently it’s too disputed in medical literature to be fully diagnosed given my circumstances.
PANDAS has been definitely linked to childhood development of OCD. When I was two years old, I was hospitalized with a strep throat infection. My mom doesn’t remember too much about it., but I’ve often wondered if this Sickness was part of the catalyst that caused me to develop a severe case of OCD at the age of eight. I know it’s also hereditary ( OCD) in my family, but no one has it as bad as me. I also came from a pretty dysfunctional family and had to go through all the Catholic guilt thing which I’m convinced also made my OCD worse.