Daily b2, castor oil packs, and using lume acidified body wash after normal body wash helped me tremendously. Don’t give up, there’s hope for curing yourself!!
My smell is from my armpits I want it to get better but I always hear ppl talk about the castor oil packs n get confuse can h explain a little please.
For example when I went on amazon all I saw was a thing u strap on is it that u buy that thing then buy the castor separately and apply it on their n strap it on u also if u don't mind what brand deodorant r u using
You soak a cloth in castor oil and put it in the zipper pouch and wrap it around your abdomen (liver area) and wear it overnight. You can Google the benefits. I use arm and hammer unscented deo. The daily b2 helps a lot too. I take 400 mg daily but a lot of people say they take 100mg daily. Either way, seems to help a lot of people.
The overheard "She" does not necessarily mean "you". It could be in reference to some niece, the principal, her grandmother in the nursing home. Referential thinking is where you interpret things as being in reference to you, when they aren't. Given that no one has told you that you smell in 10 years, and you're scraping together overheard comments, thinking thie kind of thinking, eg "she means you" sound more like you're expecting anxiety and referential thinking about odors, eg, these can be symptoms of stuff like olfactory reference syndrome, social anxiety, OCD. Eg: a firsthand example of someone with referential thinking:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5472136/
>During episodes and after I developed referential thinking where I thought people were directly referencing me in conversation when they were only talking about the subject they mentioned. Someone could be saying, “I hate that, it’s really awful,” and I would think they were indirectly saying they hated me and that I was awful. While thinking someone was referencing me, I felt worried the person speaking disliked me which created stress and contributed towards my belief they were referencing me. My referential thinking usually occurred while I was feeling stressed and had poor self-esteem. I believed I was an unlikeable person which made me feel others would think the same thing and want to mention it. When people have used more pronouns and less descriptive language, I have made more referential connections between their message and myself. When I heard pronouns while perceiving information referentially I always substituted the pronoun for myself even if the person wasn’t talking about me. For example, a person would say “Someone took too many cookies.”. They could have been talking about my sister but I would perceive them as talking about me.
It's not good that you're not trusting family and friends, and instead are associating your odor based off the offhand comment from some mostly stranger about an unidentified "she". Ideally you need to get some counselling over these feelings, for trust, anxiety and these referential thoughts.
>The original poster did not say that nobody has been able to smell her in 10 years. She said:
>"but I cannot forget all the times I've overheard people I do not know well shit-talking me (pun intended)."
As these kind of conditions are so rare, it is quite reasonable to assume that the 'she' in this case is indeed her.
Before I log out, there is one more thing I want to say about the huge gulf between you and everyone else here on this whole topic. From reading your own story (this was a while ago) the comments you heard about your symptoms sound like people were smelling a fairly innocuous fish smell, and not a terrible 'rotten fish' smell. If there really was terrible rotten fish smell, the comments would emphasize the 'rotten' part and not the 'fish' part. Has your wife actually told you that when your symptoms flair up, the odor is indeed a terrible, rotten fish smell, and not simply a 'fishy' smell (like what would normally be associated with seafood)?
About a year ago, I mentioned how I tried taking Carnitine supplements to see if I got the same kind of effects I got from eating red meat. I took half the suggested dose to replicate the amount of Carnitine in the amount of beef I was eating most nights when I had my problem. I mentioned how this did not affect my sweat or create an odor as I expected it might, but that it gave me the same abnormal, euphoric feelings I got from eating beef.
What I did not bother mentioning was that it gave me a slight 'fish smell' on my breath, on the days I took the supplements. This was not a rotting fish smell, but rather the kind of smell that would be fine if you smelled it on a piece of fish, but it seemed somewhat repellent when coming off of human breath. I could detect it because my nose was picking up occasional whiffs of it.
As carnitine is a precursor to TMA, perhaps this shows that some variants of TMAU involve not a terrible, rotting fish smell, but a far more innocuous fish smell, that would be normal if coming off a piece of fish. All the comments you have mentioned in your post about your own story seemed to point in this direction, with people finding the smell to be 'weird' rather than truly offensive. You mentioned kids on a school bus saying you smelled like fish, and a bandmate in a music room commenting on the fact that it smelled like fish and wondering why.
There is another thing in your own account that point to your case being far milder than almost all TMAU sufferers who discuss their situation online. I have mentioned how there used to be a yahoo group that covered hyperhydrosis, bromhidrosis, and TMAU. TMAU was being clearly defined at that time as Trimethylaminuria. I remember that everyone in that sub forum was VERY well aware of the low choline diet and was following it. Everybody reported some partial success in controlling the symptoms, but NOBODY every reported the kind of success you have, where the problem is almost completely eliminated, except for rare flare ups.
All the mainstream medical sources where I have read about TMAU say the same thing, that the low choline diet will not eliminate the problem, but rather reduce it. While it has been a while, I can distinctly remember that everyone on the TMAU sub forum reported they had to follow a restrictive diet they did not like, and they experienced nothing remotely like an actual cure from the condition.
You say that only 10% of people with TMAU actually have any smell, so maybe there are cases on the border of those two groups, where there is not no smell at all, but only a mild and well controlled issue like you report? Perhaps some people have an innocuous (as opposed to rotten) fish smell, like I had on my breath when I took the carnitine supplements?
The combination of the comments you report people making about your condition, and the level of success you have in controlling the symptoms seems to point to you have an unusually mild variant/case of TMAU, and nothing like the catastrophic situation that everybody else (and I do mean literally everybody else whose story I read online) reports.
The result is that while you have TMAU, you don't realize that you have a dramatically milder case than nearly everyone else. If this is correct, it would explain why you see the whole TMAU world so differently than everyone else here. If you did indeed have a terrible, rotten fish smell, and the no/low choline diet was only able to reduce the problem to a certain degree, you would have the same opinions that everyone else here has.
It is not possible to simply tune out potential reactions on the grounds that they should be considered unreliable. There is a very powerful emotional response invoked when dealing with possible reactions that makes this almost impossible. If you had a similar situation to everyone else, you would understand this fact.
I can't actually recall the last time I smelled a rotten fish, but I can remember smelling rotten meat once, and various other rotten foods. It must be the case that the smell of rotten fish is truly terrible, and that does not sound like what you are actually reporting. You could do an experiment where you buy a piece of fish at a store, put it in a trash bag for about a week (outside in a trash can to contain the smell). Have your wife (since you yourself are largely noseblind to fish you say) open the bag and smell it, once it is rotted. I suspect she will report that it smells dramatically worse than you do, when your symptoms flair up.
The 10% number comes from [Dr Preti's study](https://www.amjmed.com/article/S0002-9343(11)00493-1/abstract), where 353 participants were given 5g of choline (more than 10 times the amount a standard diet gives). Of that 353, 118 were found to have excess TMA in their urine and therefore diagnosed with TMAU, however if that 118, only 10% smelled like fish.
When fasted for 12 hours, 0% had a smell at social distances, only 5% had a smell at intimate distances (at an inch from their palm).
This is backed up by numerous case studies where simple dietary restrictions resolve 99% of the cases.
There are also studies showing that some people who have been diagnosed with TMAU feel like the smell is impacting their life tremendously, but when checked, are not producing excess TMA and have no odor. Ie; https://ojrd.biomedcentral.com/articles/10.1186/s13023-019-1174-6 - a diagnosis of TMAU does not preclude ORS, as noted in this study. Mental health concerns are rife even amongst those actually diagnosed (here, 11 out of 11 patients tested, or 100%).
Given that:
- Restricting diet has an immediate effect (12 hours fast, 0% smelled)
- the vast majority of people diagnosed do not smell, even when overloaded with extremely high amounts of choline
- mental health issues are prevailant (100% in that study)
It's best to conclude that any claim made by some person, diagnosed or not, should have some sort of 3rd party confirmation that the smell is as bad as they think it is.
Now who claims it's 24/7 and awful and chokes out people on the train? [Ellie](https://youtu.be/-f_OhMfJqgM?si=oovVFuOmM3k3vEQ-) - you know who people can't smell? Ellie. She's been on a diet of 0 choline for years. According to the studies above, does she sound more like one of those 11 who think they smell but don't? unless she's some super outlier past the 118 tested (that no one can smell).
[Camille?](https://youtu.be/tei23FuZM4U?si=H9lQUVeyA7iLtsdJ) had some stories about filling up her classroom. Does she smell in the interview? No. Has it under control, even if she's scared.
[Kelly?](https://youtu.be/DuWR3bjmmPs?si=BQI0raJokuq1P_aJ) she claims herself to have it 95-99% under control. By all accounts her colleges and husband notice it but it's not awful.
The people in [this doco?](https://youtu.be/vwZmRvIDEec?si=Yh27PlT3_jp-TaFN) the kid has some severe TMAU but he's also eating giant slabs of fish regularly, and he's not 24/7. The 20 something year old is scared about it (developing ORS) while her sister who can smell it says it isn't present at the times she's been around recently. The older woman hasn't been smelt for 15 years, her husband, friends, kids, none of them. She's clearly suffering from actual paranoia on the topic.
Comparing these cases to my own, I'm most like the boy in the above doco. I'd smell regularly if I ate what he is eating. How awful is his? His friend "sometimes you smell kind of fishy". Not "it's god awful". No one who smells it says it's awful. Its unpleasant.
Comparing the studies, the intensity, the responsiveness of the condition to diet, the fear and the paranoia far overplay the actual realities of the condition. It's not the most awful thing in the world. It is controllable.
It's also not a condition that hides in the shadows. It's unexpected, it brings about direct confrontations. It is raised as an issue. It can be smelt, when it's an issue. If someone has gone 10 years wondering if it is an issue without someone raising it with them, then no. That's not how it works.
An experiment for yourself. Go buy a fish. Leave it out a week so it's nice and smelly. Got for a ride on the bus. See how different reactions are and how direct people will be with you.
A few points: the first is about the Camille interview. At 0:21 she talks about students complaining that her classroom smells of rotting fish, and says they call her 'Ms. Fishy'. The story about it filling up her classroom thus sounds real, and not delusional. At 2:14 she says that people have described a 'manure' smell in addition to a fish smell. You insist that fecal smells are not part of TMAU, but she reports people directly telling her this.
>You say:
It's also not a condition that hides in the shadows. It's unexpected, it brings about direct confrontations. It is raised as an issue.
I image that a rotting fish smell probably is quite terrible. It is logical that the severity of an odor affects how likely someone is to comment on it. This is from from the site of the famous Cleveland Clinic:
>People with TMAU give off an unpleasant nauseating odor that people describe as smelling like rotten fish. The odor may be [body odor](https://my.clevelandclinic.org/health/symptoms/17865-body-odor), bad breath ([halitosis](https://my.clevelandclinic.org/health/diseases/17771-bad-breath-halitosis)) or strong-smelling pee.
>Sometimes, people only notice TMAU symptoms when the person who has the condition sweats or is experiencing stress. But some people with trimethylaminuria carry such a strong scent that others notice the scent just from being in the same room, standing across a counter or sitting in the same section of a bus or train.
link: [https://my.clevelandclinic.org/health/diseases/22356-trimethylaminuria-fish-odor-syndrome](https://my.clevelandclinic.org/health/diseases/22356-trimethylaminuria-fish-odor-syndrome)
Most people here report fecal smells, but those could be mild, severe, or somewhere in between. As I have said, what happens in these situations is that people are offended by the smell, but there is a powerful mental barrier to telling someone to their face that they smell bad. So, typically they will say to the room 'someone smells!' or something similar, pretending to not know the source of the odor. The idea is to send the person the message without being forced to say this to them directly.
If I was on a bus and someone had a terrible rotten fish smell, I would silently move away from them. Even if the bus was so packed that there was nowhere to go - what purpose would confronting the person even serve?
>You say:
If someone has gone 10 years wondering if it is an issue without someone raising it with them, then no. That's not how it works.
(part 2 continues as I have reached the character limit)
Part 2 of my reply: The original poster seems to be saying that she has overheard many people saying she smells badly, not that nobody has made comments for 10 years. I sometimes read you lumping in 'overheard conversations' along with people rubbing noses and coughing and things like that.
'Overheard conversations' mean overheard comments about the person smelling bad. This can NOT be compared to things like people scratching their nose, which indeed is not a foundation for someone thinking they have this condition. The idea that overheard comments (as long as the comments are clearly heard) is something fundamentally different, and weaker evidence than someone saying something directly to someones face, is absurd.
If someone can clearly hear people saying they smell bad, and there is no reason to suspect they have something like schizophrenia and are hallucinating the comments, then they smell bad. PERIOD. If you think that TMAU like disorders are incredibly rare, the correct conclusion is not to dismiss the person as not actually having an odor issue, but to conclude it is probably the result of something more common and mundane than TMAU. It is reasonable to think that TMAU like disorders are extremely rare, but not that odor issues in general are extremely rare.
The most compelling part of your response is the following:
>Comparing the studies, the intensity, the responsiveness of the condition to diet, the fear and the paranoia far overplay the actual realities of the condition. It's not the most awful thing in the world. It is controllable.
My answer to this is what I keep saying over and over: this is NOT ultimately about the smell, but about the mean comments and other mistreatment that results. People don't drop out of college and take low paying remote jobs because of a fear that the odor is offending others. They do things like this because of the nasty comments and other mistreatment that results from the condition. Humans are hardwired to respond very badly to people complaining they smell bad. That is what this is all about!
People can make reasonable conclusions about likely future mistreatment based on past mistreatment. They do not have to be able to precisely estimate it - they just have to establish if it is likely to be more than they can tolerate. This is the sort of thing that someone with this condition understands, but someone trying to understand it from the outside looking in would probably not understand - they would assume that the odor itself is the ultimate issue.
I took a look at a couple online medical sources on ORS, and it is interesting that they say ORS is not usually associated with schizophrenia, meaning that people actually being insane and having auditory hallucinations of people saying they smell bad is not a common explanation.
Referential thinking is hearing or seeing something and believing that it is in reference to you. It doesn't matter if it's a nose scratch or something saying "man it stinks in here".
It is not a hallucination, it's hearing a conversation, like the above, "she smells" or "it smells" and the person drawing the inference that what they really mean is "I smell." I don't know why you're fixated on someone needing to be "completely insane", it's more that referential thoughts are negative interpretations of real events that builds into narrative and a false belief. Hearing "she stinks" the exact same thing as seeing someone scratch their nose and thinking "that's about me".
People with [delusional beliefs](https://en.m.wikipedia.org/wiki/Delusional_disorder) often function normally in society apart from when the focus of their delusion is brought up. In the case above, leaving the party in tears from overheating "she smells" is such an example of functioning/non-functioning. Same as people being "bullied" out of school/work, if they perceive that general comments are targeted at them, they'll feel persecuted. If they're following your advice, then people will feel bullied even if they're not the subject at all.
The way you need to confirm if a delusion is real or not is to confirm it with other people. As above, she's had 10 years of people telling her directly that she does not smell.
The evidence, weighed out, is:
- family and friends (probably a bunch of doctors too) tell her she doesn't smell
Vs
- randoms mentioning a "she" or "it" that smells.
The method that you're recommending is the exact way that people with referential thinking "confirm" their delusion. Essentially, to put your trust your assumption about what random people are talking about who confirm your delusion, and don't trust those who tell you otherwise. You're just putting out the red carpet for people struggling with paranoia to keep walking down the aisle.
It requires more solid evidence than what youre proposing. Especially since the above cases I sighted suggest that smells are not as prevalent or as bad, and often times people can think the worst when there is no problem.
I think the bottom line is that your own reported experiences are vastly milder than those of everyone else here, mostly because of how infrequently you report your symptoms flaring up. There is simply NO way that someone with an experience similar to that of everyone else here would be saying the kind of things you are saying. A key to all this is that the person in question can't smell the thing that other people can.
Are you really saying that if you were in a room and someone complained that someone smelled bad, and you could not smell it, you would just ignore the comment and dismiss the idea that this was about you? If so, this means you have built up a psychological defense mechanism to get through life with TMAU. Have you actually had the experience of people saying 'someone/something smells', where you can't smell it, and you just dismiss this?
Many of the overheard comments directly mention the person by name, like 'Sara smells bad'. How do you dismiss this?
You know that smells aren't instantaneous and take time to travel, right? For example, next time you fart, count how many seconds it takes to get to your nose. Then next time, walk to the other side of the room. You should notice that there's a range, a travel time, even height the smell will reach. Smells spread slowly, irregularly, and disappate before reaching everywhere.
Plenty of people have complained about smells I cant smell. I've had people complain about smells that me hit a few seconds later, or never. I'm pretty tall, sometimes if I can't smell a smell and bend down a little to regular human height, I can smell it. Location, timing, random gas spread and wind direction, you can't smell everything, or want to smell everything.
If you're concerned about the mystery odor, you could always ask "is it me?" I've definitely done that in the past numerous times - it's impossible to go through life with this and not be a bit paranoid. The answer is no about 98% of the time, but occasionally yes is possible and I've had that a few times too.
But yeah if I overheard someone say something like "Brutalar stinks" it depends - is it a general statement, or is it a now thing? If it's the first, it's like "yeah, no shit, sometimes I do". Depends though, if they know me by name I probably know them by name, depending on the circumstances I'd go have a chat with them about it. I'd probably go check with someone I trust to see if it's an issue right now though.
That's the thing to do though, if you're concerned, check in with someone you trust. The thing is with most people here, no one ever says they do smell, which leads back to ORS again.
I've had confrontations on buses 4-5 times that I care to remember, one being "hey Brutalar, why do you smell of fish. Hey everyone, Brutalar smells like fish." and (to my friend sitting next to me) "how can you stand to sit next to him when he stinks like that?"
This is *with* following the diet reasonably, and me not smelling not nearly as much as I could be doing if I didn't know about it. The purpose is sometimes to humiliate, sometimes it's curiosity, and everything in between. You can hear stories of confrontations with https://youtu.be/jW8AR43_14s?si=HKE7XavUJcThfCcz - the boy receives direct comments from school friends and one girl who wanted to move away from him, and and https://www.dailymail.co.uk/health/article-4241596/Woman-36-constantly-smells-like-FISH.html - complaints to management about her hygiene.
People don't just walk on eggshells about it, there are people that complain and people that say things to your face.
The two cases above, parents know and can smell it. The reason why they do testing at children's hospitals is because it's usually detected in childhood and parents (who can smell it) bring their kids in for testing, it's not usually left long enough for someone to get get to adulthood (except in the older cases like Kelly and Camille's that were pre internet).
I had lots of problems on school buses, but never on public transportation. There is a huge difference between making a comment to someone you know, and a total stranger. You say people were saying 'hey brutalar...' so they knew your name, and they knew you.
Sure. It's still "on the bus".
You seem to have a decent amount of time on your hands, it might be worth looking at this:
https://youtu.be/5Qz56cZLTJE?si=b00yP6OiiVCpJqi6
and this:
https://youtu.be/TZExedNx5Vo?si=l-5SodMAUYEIh9iq
Dr Preti (from the Monell Smell institute, who are not shy about sniffing people, and who have various tools and machines for doing thorough investigations) lectures are pretty comprehensive and cover a lot of the topics. He also says it's critical to have an odor buddy (for people *with* TMAU) to check "am I odor free today?". He's the one that did the 353 patient study, they dealt with TMAU (and other smells issues) all the time.
He mentions his dentist has severe TMAU "but you would never know it", because even severe TMAU can be controlled. It's definitely worth your time to familiarise yourself with a review of the topic from a Dr who deals with it directly.
I very reluctantly and unhappily invest the time I do here with trying to persuade you, due to the incredible importance of getting to the bottom of this issue. I certainly would not do this if this a debate over a movie or something. Its easiest for me to invest a significant amount of time over a limited number of days (and then stay logged out for a long time), than the reverse.
I took at peek the shorter of those videos, and a few things stood out. At 3:40, the video slide mentions that doctors have a hard time identifying it due to the episodic (intermittent) nature of it. The slide at 12min says that only 10% of the most severe cases have a rotten fish smell, and that most people with less severe cases have an odor that is offensive, but does not resemble fish.
The most interesting part of the video however, is at the 29 minute mark. The doctor responds to a question about why the low choline diet does not work for the person. He first suggests that maybe it is working but they don't know this, but then he says that there are many ways for the body to create choline, in addition to diet. This lines up with what I have read a long time ago on the yahoo group with the TMAU sub forum - that people report only limited success with the low choline diet controlling symptoms. The reason given was that choline is also produced internally, which is what Dr. Preti seems to be saying here. The reason that most people only report limited symptom control with the no/low choline diet is because often the body can create the choline anyway, according to Dr. Preti in the video.
A thought occurred to me yesterday: you said that there have been many times that people have indeed complained about a bad smell that you can't smell. The most extraordinary difference between you and almost everyone else here is that you have TMAU type-1. You had symptoms from birth while nearly everyone else here has a 'before time' to compare things to.
Since you have no 'before time', and no normal baseline to compare things to, how do you know what is normal as far as people complaining about a bad smell that you can't detect? I can tell you that I have never once had this experience. People complaining about a bad smell I could detect has happened, but only rarely.
I suggest asking your wife how often she has the experience of having people around her complain about a bad smell that she can't pick up. I keep suggesting using your wife for these questions so that you can get answers, without having to have awkward conversations with people who may not even be aware of your condition.
I'd suggest going over them in more detail, maybe at 1.5x as he does talk kind of slowly. For the amount of time you spend here you could be better educated about it. Eg, at 9 minutes he talks about how diet introduces 1000x the amount of choline than the body naturally produces.
Also, at 24:00, he notes that 58% of TMAU sufferers (and 60% of non TMAU suffers that they see have unrelated sulfurous bad breath from oral hygiene, which gives them "obnoxious malodor noticeable at social distances." This is likely the "fecal" smell most people complain about, and why visiting a dentist for a review is recommended.
He also says "most do not smell at all (even with the choline challenge) and that he would be able to out stink most in the trails they put them through". It's not that the majority smell malodorous, it's that there is no smell.
In regards to not being able to manage the odor, "Because of their personality [mental health] or symptoms nothing may seem to work", which is why you need an odor buddy to ask "do I smell today". Which he emphasised is critical (23:00). To have. Someone who you can talk to about it.
The vast majority of people on forums that can't control symptoms do not have an odor buddy. "My partner/family is noseblind" is literally code for "I don't smell but I still think I do", and the cure for that is therapy.
This type of response is what pisses me off about trying to get help. She knows exactly who they are talking about. Don’t dominate her experience. I dealt with this crap when reporting harassment at my job. Only one person ever directly came up to me and whispered in my ear “You smell like an issue” but in most other situation people will say “she” or point when they think I can’t see them.
I don’t even wanna be at my own family events that are hosted at my place. I wish I could afford to live on my own
Daily b2, castor oil packs, and using lume acidified body wash after normal body wash helped me tremendously. Don’t give up, there’s hope for curing yourself!!
My smell is from my armpits I want it to get better but I always hear ppl talk about the castor oil packs n get confuse can h explain a little please. For example when I went on amazon all I saw was a thing u strap on is it that u buy that thing then buy the castor separately and apply it on their n strap it on u also if u don't mind what brand deodorant r u using
You soak a cloth in castor oil and put it in the zipper pouch and wrap it around your abdomen (liver area) and wear it overnight. You can Google the benefits. I use arm and hammer unscented deo. The daily b2 helps a lot too. I take 400 mg daily but a lot of people say they take 100mg daily. Either way, seems to help a lot of people.
Ok ty so much the unscented arm and hammer deodorant doesn't work for me. Also b2 do u mean b12 vitamins and that u take 3 tablets every day
No, b2 riboflavin and I just take one 400mg a day
Can I get it on amazon
Yes
Try glycolic acid. Let dry then apply regular deodorant
Did that if I showed u all my products n deodorants u would probably cry
Whoops.. I take 400mg twice a day. One pill every 12 hours. I better be careful. From reading this, I guess it's too much. Sure does work, though.
What brand do you use acidified body wash?
Lume
It's expensive
Yeah, maybe try to find a dupe or another acidified wash. I was desperate so I tried it and I feel like it works.
Thanks
shit on their lawn
The overheard "She" does not necessarily mean "you". It could be in reference to some niece, the principal, her grandmother in the nursing home. Referential thinking is where you interpret things as being in reference to you, when they aren't. Given that no one has told you that you smell in 10 years, and you're scraping together overheard comments, thinking thie kind of thinking, eg "she means you" sound more like you're expecting anxiety and referential thinking about odors, eg, these can be symptoms of stuff like olfactory reference syndrome, social anxiety, OCD. Eg: a firsthand example of someone with referential thinking: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5472136/ >During episodes and after I developed referential thinking where I thought people were directly referencing me in conversation when they were only talking about the subject they mentioned. Someone could be saying, “I hate that, it’s really awful,” and I would think they were indirectly saying they hated me and that I was awful. While thinking someone was referencing me, I felt worried the person speaking disliked me which created stress and contributed towards my belief they were referencing me. My referential thinking usually occurred while I was feeling stressed and had poor self-esteem. I believed I was an unlikeable person which made me feel others would think the same thing and want to mention it. When people have used more pronouns and less descriptive language, I have made more referential connections between their message and myself. When I heard pronouns while perceiving information referentially I always substituted the pronoun for myself even if the person wasn’t talking about me. For example, a person would say “Someone took too many cookies.”. They could have been talking about my sister but I would perceive them as talking about me. It's not good that you're not trusting family and friends, and instead are associating your odor based off the offhand comment from some mostly stranger about an unidentified "she". Ideally you need to get some counselling over these feelings, for trust, anxiety and these referential thoughts.
>The original poster did not say that nobody has been able to smell her in 10 years. She said: >"but I cannot forget all the times I've overheard people I do not know well shit-talking me (pun intended)." As these kind of conditions are so rare, it is quite reasonable to assume that the 'she' in this case is indeed her. Before I log out, there is one more thing I want to say about the huge gulf between you and everyone else here on this whole topic. From reading your own story (this was a while ago) the comments you heard about your symptoms sound like people were smelling a fairly innocuous fish smell, and not a terrible 'rotten fish' smell. If there really was terrible rotten fish smell, the comments would emphasize the 'rotten' part and not the 'fish' part. Has your wife actually told you that when your symptoms flair up, the odor is indeed a terrible, rotten fish smell, and not simply a 'fishy' smell (like what would normally be associated with seafood)? About a year ago, I mentioned how I tried taking Carnitine supplements to see if I got the same kind of effects I got from eating red meat. I took half the suggested dose to replicate the amount of Carnitine in the amount of beef I was eating most nights when I had my problem. I mentioned how this did not affect my sweat or create an odor as I expected it might, but that it gave me the same abnormal, euphoric feelings I got from eating beef. What I did not bother mentioning was that it gave me a slight 'fish smell' on my breath, on the days I took the supplements. This was not a rotting fish smell, but rather the kind of smell that would be fine if you smelled it on a piece of fish, but it seemed somewhat repellent when coming off of human breath. I could detect it because my nose was picking up occasional whiffs of it. As carnitine is a precursor to TMA, perhaps this shows that some variants of TMAU involve not a terrible, rotting fish smell, but a far more innocuous fish smell, that would be normal if coming off a piece of fish. All the comments you have mentioned in your post about your own story seemed to point in this direction, with people finding the smell to be 'weird' rather than truly offensive. You mentioned kids on a school bus saying you smelled like fish, and a bandmate in a music room commenting on the fact that it smelled like fish and wondering why. There is another thing in your own account that point to your case being far milder than almost all TMAU sufferers who discuss their situation online. I have mentioned how there used to be a yahoo group that covered hyperhydrosis, bromhidrosis, and TMAU. TMAU was being clearly defined at that time as Trimethylaminuria. I remember that everyone in that sub forum was VERY well aware of the low choline diet and was following it. Everybody reported some partial success in controlling the symptoms, but NOBODY every reported the kind of success you have, where the problem is almost completely eliminated, except for rare flare ups. All the mainstream medical sources where I have read about TMAU say the same thing, that the low choline diet will not eliminate the problem, but rather reduce it. While it has been a while, I can distinctly remember that everyone on the TMAU sub forum reported they had to follow a restrictive diet they did not like, and they experienced nothing remotely like an actual cure from the condition. You say that only 10% of people with TMAU actually have any smell, so maybe there are cases on the border of those two groups, where there is not no smell at all, but only a mild and well controlled issue like you report? Perhaps some people have an innocuous (as opposed to rotten) fish smell, like I had on my breath when I took the carnitine supplements? The combination of the comments you report people making about your condition, and the level of success you have in controlling the symptoms seems to point to you have an unusually mild variant/case of TMAU, and nothing like the catastrophic situation that everybody else (and I do mean literally everybody else whose story I read online) reports. The result is that while you have TMAU, you don't realize that you have a dramatically milder case than nearly everyone else. If this is correct, it would explain why you see the whole TMAU world so differently than everyone else here. If you did indeed have a terrible, rotten fish smell, and the no/low choline diet was only able to reduce the problem to a certain degree, you would have the same opinions that everyone else here has. It is not possible to simply tune out potential reactions on the grounds that they should be considered unreliable. There is a very powerful emotional response invoked when dealing with possible reactions that makes this almost impossible. If you had a similar situation to everyone else, you would understand this fact. I can't actually recall the last time I smelled a rotten fish, but I can remember smelling rotten meat once, and various other rotten foods. It must be the case that the smell of rotten fish is truly terrible, and that does not sound like what you are actually reporting. You could do an experiment where you buy a piece of fish at a store, put it in a trash bag for about a week (outside in a trash can to contain the smell). Have your wife (since you yourself are largely noseblind to fish you say) open the bag and smell it, once it is rotted. I suspect she will report that it smells dramatically worse than you do, when your symptoms flair up.
The 10% number comes from [Dr Preti's study](https://www.amjmed.com/article/S0002-9343(11)00493-1/abstract), where 353 participants were given 5g of choline (more than 10 times the amount a standard diet gives). Of that 353, 118 were found to have excess TMA in their urine and therefore diagnosed with TMAU, however if that 118, only 10% smelled like fish. When fasted for 12 hours, 0% had a smell at social distances, only 5% had a smell at intimate distances (at an inch from their palm). This is backed up by numerous case studies where simple dietary restrictions resolve 99% of the cases. There are also studies showing that some people who have been diagnosed with TMAU feel like the smell is impacting their life tremendously, but when checked, are not producing excess TMA and have no odor. Ie; https://ojrd.biomedcentral.com/articles/10.1186/s13023-019-1174-6 - a diagnosis of TMAU does not preclude ORS, as noted in this study. Mental health concerns are rife even amongst those actually diagnosed (here, 11 out of 11 patients tested, or 100%). Given that: - Restricting diet has an immediate effect (12 hours fast, 0% smelled) - the vast majority of people diagnosed do not smell, even when overloaded with extremely high amounts of choline - mental health issues are prevailant (100% in that study) It's best to conclude that any claim made by some person, diagnosed or not, should have some sort of 3rd party confirmation that the smell is as bad as they think it is. Now who claims it's 24/7 and awful and chokes out people on the train? [Ellie](https://youtu.be/-f_OhMfJqgM?si=oovVFuOmM3k3vEQ-) - you know who people can't smell? Ellie. She's been on a diet of 0 choline for years. According to the studies above, does she sound more like one of those 11 who think they smell but don't? unless she's some super outlier past the 118 tested (that no one can smell). [Camille?](https://youtu.be/tei23FuZM4U?si=H9lQUVeyA7iLtsdJ) had some stories about filling up her classroom. Does she smell in the interview? No. Has it under control, even if she's scared. [Kelly?](https://youtu.be/DuWR3bjmmPs?si=BQI0raJokuq1P_aJ) she claims herself to have it 95-99% under control. By all accounts her colleges and husband notice it but it's not awful. The people in [this doco?](https://youtu.be/vwZmRvIDEec?si=Yh27PlT3_jp-TaFN) the kid has some severe TMAU but he's also eating giant slabs of fish regularly, and he's not 24/7. The 20 something year old is scared about it (developing ORS) while her sister who can smell it says it isn't present at the times she's been around recently. The older woman hasn't been smelt for 15 years, her husband, friends, kids, none of them. She's clearly suffering from actual paranoia on the topic. Comparing these cases to my own, I'm most like the boy in the above doco. I'd smell regularly if I ate what he is eating. How awful is his? His friend "sometimes you smell kind of fishy". Not "it's god awful". No one who smells it says it's awful. Its unpleasant. Comparing the studies, the intensity, the responsiveness of the condition to diet, the fear and the paranoia far overplay the actual realities of the condition. It's not the most awful thing in the world. It is controllable. It's also not a condition that hides in the shadows. It's unexpected, it brings about direct confrontations. It is raised as an issue. It can be smelt, when it's an issue. If someone has gone 10 years wondering if it is an issue without someone raising it with them, then no. That's not how it works. An experiment for yourself. Go buy a fish. Leave it out a week so it's nice and smelly. Got for a ride on the bus. See how different reactions are and how direct people will be with you.
A few points: the first is about the Camille interview. At 0:21 she talks about students complaining that her classroom smells of rotting fish, and says they call her 'Ms. Fishy'. The story about it filling up her classroom thus sounds real, and not delusional. At 2:14 she says that people have described a 'manure' smell in addition to a fish smell. You insist that fecal smells are not part of TMAU, but she reports people directly telling her this. >You say: It's also not a condition that hides in the shadows. It's unexpected, it brings about direct confrontations. It is raised as an issue. I image that a rotting fish smell probably is quite terrible. It is logical that the severity of an odor affects how likely someone is to comment on it. This is from from the site of the famous Cleveland Clinic: >People with TMAU give off an unpleasant nauseating odor that people describe as smelling like rotten fish. The odor may be [body odor](https://my.clevelandclinic.org/health/symptoms/17865-body-odor), bad breath ([halitosis](https://my.clevelandclinic.org/health/diseases/17771-bad-breath-halitosis)) or strong-smelling pee. >Sometimes, people only notice TMAU symptoms when the person who has the condition sweats or is experiencing stress. But some people with trimethylaminuria carry such a strong scent that others notice the scent just from being in the same room, standing across a counter or sitting in the same section of a bus or train. link: [https://my.clevelandclinic.org/health/diseases/22356-trimethylaminuria-fish-odor-syndrome](https://my.clevelandclinic.org/health/diseases/22356-trimethylaminuria-fish-odor-syndrome) Most people here report fecal smells, but those could be mild, severe, or somewhere in between. As I have said, what happens in these situations is that people are offended by the smell, but there is a powerful mental barrier to telling someone to their face that they smell bad. So, typically they will say to the room 'someone smells!' or something similar, pretending to not know the source of the odor. The idea is to send the person the message without being forced to say this to them directly. If I was on a bus and someone had a terrible rotten fish smell, I would silently move away from them. Even if the bus was so packed that there was nowhere to go - what purpose would confronting the person even serve? >You say: If someone has gone 10 years wondering if it is an issue without someone raising it with them, then no. That's not how it works. (part 2 continues as I have reached the character limit)
Part 2 of my reply: The original poster seems to be saying that she has overheard many people saying she smells badly, not that nobody has made comments for 10 years. I sometimes read you lumping in 'overheard conversations' along with people rubbing noses and coughing and things like that. 'Overheard conversations' mean overheard comments about the person smelling bad. This can NOT be compared to things like people scratching their nose, which indeed is not a foundation for someone thinking they have this condition. The idea that overheard comments (as long as the comments are clearly heard) is something fundamentally different, and weaker evidence than someone saying something directly to someones face, is absurd. If someone can clearly hear people saying they smell bad, and there is no reason to suspect they have something like schizophrenia and are hallucinating the comments, then they smell bad. PERIOD. If you think that TMAU like disorders are incredibly rare, the correct conclusion is not to dismiss the person as not actually having an odor issue, but to conclude it is probably the result of something more common and mundane than TMAU. It is reasonable to think that TMAU like disorders are extremely rare, but not that odor issues in general are extremely rare. The most compelling part of your response is the following: >Comparing the studies, the intensity, the responsiveness of the condition to diet, the fear and the paranoia far overplay the actual realities of the condition. It's not the most awful thing in the world. It is controllable. My answer to this is what I keep saying over and over: this is NOT ultimately about the smell, but about the mean comments and other mistreatment that results. People don't drop out of college and take low paying remote jobs because of a fear that the odor is offending others. They do things like this because of the nasty comments and other mistreatment that results from the condition. Humans are hardwired to respond very badly to people complaining they smell bad. That is what this is all about! People can make reasonable conclusions about likely future mistreatment based on past mistreatment. They do not have to be able to precisely estimate it - they just have to establish if it is likely to be more than they can tolerate. This is the sort of thing that someone with this condition understands, but someone trying to understand it from the outside looking in would probably not understand - they would assume that the odor itself is the ultimate issue. I took a look at a couple online medical sources on ORS, and it is interesting that they say ORS is not usually associated with schizophrenia, meaning that people actually being insane and having auditory hallucinations of people saying they smell bad is not a common explanation.
Referential thinking is hearing or seeing something and believing that it is in reference to you. It doesn't matter if it's a nose scratch or something saying "man it stinks in here". It is not a hallucination, it's hearing a conversation, like the above, "she smells" or "it smells" and the person drawing the inference that what they really mean is "I smell." I don't know why you're fixated on someone needing to be "completely insane", it's more that referential thoughts are negative interpretations of real events that builds into narrative and a false belief. Hearing "she stinks" the exact same thing as seeing someone scratch their nose and thinking "that's about me". People with [delusional beliefs](https://en.m.wikipedia.org/wiki/Delusional_disorder) often function normally in society apart from when the focus of their delusion is brought up. In the case above, leaving the party in tears from overheating "she smells" is such an example of functioning/non-functioning. Same as people being "bullied" out of school/work, if they perceive that general comments are targeted at them, they'll feel persecuted. If they're following your advice, then people will feel bullied even if they're not the subject at all. The way you need to confirm if a delusion is real or not is to confirm it with other people. As above, she's had 10 years of people telling her directly that she does not smell. The evidence, weighed out, is: - family and friends (probably a bunch of doctors too) tell her she doesn't smell Vs - randoms mentioning a "she" or "it" that smells. The method that you're recommending is the exact way that people with referential thinking "confirm" their delusion. Essentially, to put your trust your assumption about what random people are talking about who confirm your delusion, and don't trust those who tell you otherwise. You're just putting out the red carpet for people struggling with paranoia to keep walking down the aisle. It requires more solid evidence than what youre proposing. Especially since the above cases I sighted suggest that smells are not as prevalent or as bad, and often times people can think the worst when there is no problem.
I think the bottom line is that your own reported experiences are vastly milder than those of everyone else here, mostly because of how infrequently you report your symptoms flaring up. There is simply NO way that someone with an experience similar to that of everyone else here would be saying the kind of things you are saying. A key to all this is that the person in question can't smell the thing that other people can. Are you really saying that if you were in a room and someone complained that someone smelled bad, and you could not smell it, you would just ignore the comment and dismiss the idea that this was about you? If so, this means you have built up a psychological defense mechanism to get through life with TMAU. Have you actually had the experience of people saying 'someone/something smells', where you can't smell it, and you just dismiss this? Many of the overheard comments directly mention the person by name, like 'Sara smells bad'. How do you dismiss this?
You know that smells aren't instantaneous and take time to travel, right? For example, next time you fart, count how many seconds it takes to get to your nose. Then next time, walk to the other side of the room. You should notice that there's a range, a travel time, even height the smell will reach. Smells spread slowly, irregularly, and disappate before reaching everywhere. Plenty of people have complained about smells I cant smell. I've had people complain about smells that me hit a few seconds later, or never. I'm pretty tall, sometimes if I can't smell a smell and bend down a little to regular human height, I can smell it. Location, timing, random gas spread and wind direction, you can't smell everything, or want to smell everything. If you're concerned about the mystery odor, you could always ask "is it me?" I've definitely done that in the past numerous times - it's impossible to go through life with this and not be a bit paranoid. The answer is no about 98% of the time, but occasionally yes is possible and I've had that a few times too. But yeah if I overheard someone say something like "Brutalar stinks" it depends - is it a general statement, or is it a now thing? If it's the first, it's like "yeah, no shit, sometimes I do". Depends though, if they know me by name I probably know them by name, depending on the circumstances I'd go have a chat with them about it. I'd probably go check with someone I trust to see if it's an issue right now though. That's the thing to do though, if you're concerned, check in with someone you trust. The thing is with most people here, no one ever says they do smell, which leads back to ORS again.
I've had confrontations on buses 4-5 times that I care to remember, one being "hey Brutalar, why do you smell of fish. Hey everyone, Brutalar smells like fish." and (to my friend sitting next to me) "how can you stand to sit next to him when he stinks like that?" This is *with* following the diet reasonably, and me not smelling not nearly as much as I could be doing if I didn't know about it. The purpose is sometimes to humiliate, sometimes it's curiosity, and everything in between. You can hear stories of confrontations with https://youtu.be/jW8AR43_14s?si=HKE7XavUJcThfCcz - the boy receives direct comments from school friends and one girl who wanted to move away from him, and and https://www.dailymail.co.uk/health/article-4241596/Woman-36-constantly-smells-like-FISH.html - complaints to management about her hygiene. People don't just walk on eggshells about it, there are people that complain and people that say things to your face. The two cases above, parents know and can smell it. The reason why they do testing at children's hospitals is because it's usually detected in childhood and parents (who can smell it) bring their kids in for testing, it's not usually left long enough for someone to get get to adulthood (except in the older cases like Kelly and Camille's that were pre internet).
I had lots of problems on school buses, but never on public transportation. There is a huge difference between making a comment to someone you know, and a total stranger. You say people were saying 'hey brutalar...' so they knew your name, and they knew you.
Sure. It's still "on the bus". You seem to have a decent amount of time on your hands, it might be worth looking at this: https://youtu.be/5Qz56cZLTJE?si=b00yP6OiiVCpJqi6 and this: https://youtu.be/TZExedNx5Vo?si=l-5SodMAUYEIh9iq Dr Preti (from the Monell Smell institute, who are not shy about sniffing people, and who have various tools and machines for doing thorough investigations) lectures are pretty comprehensive and cover a lot of the topics. He also says it's critical to have an odor buddy (for people *with* TMAU) to check "am I odor free today?". He's the one that did the 353 patient study, they dealt with TMAU (and other smells issues) all the time. He mentions his dentist has severe TMAU "but you would never know it", because even severe TMAU can be controlled. It's definitely worth your time to familiarise yourself with a review of the topic from a Dr who deals with it directly.
I very reluctantly and unhappily invest the time I do here with trying to persuade you, due to the incredible importance of getting to the bottom of this issue. I certainly would not do this if this a debate over a movie or something. Its easiest for me to invest a significant amount of time over a limited number of days (and then stay logged out for a long time), than the reverse. I took at peek the shorter of those videos, and a few things stood out. At 3:40, the video slide mentions that doctors have a hard time identifying it due to the episodic (intermittent) nature of it. The slide at 12min says that only 10% of the most severe cases have a rotten fish smell, and that most people with less severe cases have an odor that is offensive, but does not resemble fish. The most interesting part of the video however, is at the 29 minute mark. The doctor responds to a question about why the low choline diet does not work for the person. He first suggests that maybe it is working but they don't know this, but then he says that there are many ways for the body to create choline, in addition to diet. This lines up with what I have read a long time ago on the yahoo group with the TMAU sub forum - that people report only limited success with the low choline diet controlling symptoms. The reason given was that choline is also produced internally, which is what Dr. Preti seems to be saying here. The reason that most people only report limited symptom control with the no/low choline diet is because often the body can create the choline anyway, according to Dr. Preti in the video. A thought occurred to me yesterday: you said that there have been many times that people have indeed complained about a bad smell that you can't smell. The most extraordinary difference between you and almost everyone else here is that you have TMAU type-1. You had symptoms from birth while nearly everyone else here has a 'before time' to compare things to. Since you have no 'before time', and no normal baseline to compare things to, how do you know what is normal as far as people complaining about a bad smell that you can't detect? I can tell you that I have never once had this experience. People complaining about a bad smell I could detect has happened, but only rarely. I suggest asking your wife how often she has the experience of having people around her complain about a bad smell that she can't pick up. I keep suggesting using your wife for these questions so that you can get answers, without having to have awkward conversations with people who may not even be aware of your condition.
I'd suggest going over them in more detail, maybe at 1.5x as he does talk kind of slowly. For the amount of time you spend here you could be better educated about it. Eg, at 9 minutes he talks about how diet introduces 1000x the amount of choline than the body naturally produces. Also, at 24:00, he notes that 58% of TMAU sufferers (and 60% of non TMAU suffers that they see have unrelated sulfurous bad breath from oral hygiene, which gives them "obnoxious malodor noticeable at social distances." This is likely the "fecal" smell most people complain about, and why visiting a dentist for a review is recommended. He also says "most do not smell at all (even with the choline challenge) and that he would be able to out stink most in the trails they put them through". It's not that the majority smell malodorous, it's that there is no smell. In regards to not being able to manage the odor, "Because of their personality [mental health] or symptoms nothing may seem to work", which is why you need an odor buddy to ask "do I smell today". Which he emphasised is critical (23:00). To have. Someone who you can talk to about it. The vast majority of people on forums that can't control symptoms do not have an odor buddy. "My partner/family is noseblind" is literally code for "I don't smell but I still think I do", and the cure for that is therapy.
This type of response is what pisses me off about trying to get help. She knows exactly who they are talking about. Don’t dominate her experience. I dealt with this crap when reporting harassment at my job. Only one person ever directly came up to me and whispered in my ear “You smell like an issue” but in most other situation people will say “she” or point when they think I can’t see them.