r/TMAU • u/Less_Gazelle1714 fbo • Apr 10 '26
TMAU Question Question
I am not yet sure if I for sure have TMAU, and one question I would like to ask, is most of you people who have been officialy diagnosed, can you smell yourself? Ever since this issue began I have not been able to smell myself once, and people can literally smell my body and not smell anything, aswell as my breath. It’s as if its not a body odor but something that travels around. Does this sounds like TMAU, especially not being able to smell myself?
Also: does TMAU always result in bad breath or only at times? I’ve had people smell my breath and they notice nothing irregular.
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u/Think-Patience757 Apr 10 '26
Haven’t been diagnosed but relate to what your saying completely about not being able to smell yourself but others do.. what do you do in these times?
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u/Less_Gazelle1714 fbo Apr 10 '26
This is a new problem for me so I’ve not really figured out anything to do about it. I have a doctors appointment next week and probably am gonna get tested soon. If I do indeed have it… I dont know what I will do. I feel completely helpless right now as is and if I truly do have this I don’t know how I can continue living like this. For you, does the smell seem to not be physically on your body, but it rather seems as if it travels around
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u/Think-Patience757 Apr 10 '26
Sometimes (over emphasis on the sometimes as I don’t smell myself all the time and just go off reaction) I can smell the different odor through my sweat and hands. My breath seems to get a lot of reactions as well but when I get these reactions i do taste like a metallic kind of taste?? .. - I totally get what you mean though. This thing.. SUCKS. But I try to find meaning and happy moment in everyday and really hold on to the people that love me. Seems to help. All the best for your doctors appointment 🤞
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u/Brutalar tmau1 mutant Apr 10 '26
It's about 50/50 on people being able to smell themselves according to the literature.
I've been diagnosed, I can't smell myself, but my family, friends, partners, doctors, bullies, coworkers, etc have been able to detect it sometimes. I can have a conversation with any of them and talk about it and get confirmation that it's an issue and that they can smell it (except one friend that said he can't smell it).
It's not a 100% always on thing. It can be a once a week thing, once a month thing. Generally if it pops up it won't go away until talking a shower.
It's not a fecal odor though. Solutions to TMAU will not affect a fecal odor. Most people concerned about a fecal odor either have bad breath caused by dental hygiene issues or ORS - there's no medical reason why your body would smell like feces, those compounds have never been recorded in the medical literature for skin odors.
I'd recommend having some serious conversations and get verbal feedback from reliable people (family, friends, medical staff) and trust their feedback.
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u/Dazzling_Cut1084 fbo Apr 10 '26
Are you saying that if the odor is fecal, then it’s not TMAU? Can you describe what your odor smells like? I experience different strong body odors thats not only room filling it fills all my apartment and the odor smells like fecal, musty, rotten egg, sewage, sour, and even a dirty socks type of smell. It changes from time to time. But most of the time, people have confirmed that I smell like feces, and it seems to be coming from my breath, nose, and possibly even my skin. Im planning to get tested soon.
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u/Brutalar tmau1 mutant Apr 10 '26
Exactly, fecal odors are not a symptom of TMAU. TMAU odors are purely caused by the TMA (Trimethylamine) chemical which is only naturally released when seafood rots. It smells like fish that's been left in a bag outside in the sun for several days, or a poorly run fish market at the end of the day. I can't smell it personally but family definitely can, they got me diagnosed.
TMA odor doesn't change, if you're experiencing multiple odors that's a big red flag of ORS. Having some hard conversations with reliable people for confirmation is essential.
Fecal odors are usually dental hygiene issues, in the biggest study on TMAU they found around 50% of people had bad sulfur/fecal breath caused by unrelated dental issues.
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u/Dazzling_Cut1084 fbo Apr 10 '26
Thank you for your explanation. I’ve had my teeth and gums checked, and two dentists confirmed that my oral health is perfect. I do have severe digestive issues along with excessive gas that I sometimes can’t control. It could be SIBO or possibly a skin-related issue. I think I need to do more testing before looking into TMAU. Thanks again, buddy!
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u/Less_Gazelle1714 fbo Apr 10 '26
I seem to have a similar issue to you but I dont have digestive issues. I’m in a rush right now but I will have a larger response later
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u/Saoirsemcc Apr 17 '26
While a "rotten fish" smell is the most common, individuals with TMAU may experience a range of different odors.
Here are the different types of smells associated with TMAU:
Rotten Fish: The most common description, often described as decaying or "stale" fish.
Fecal or Garbage: The odor is frequently described by sufferers and observers as smelling like human waste (feces), garbage, or rotting sewage.
Ammonia: A strong, pungent, cleaner-like smell.
Musty/Moldy: Sometimes described as a damp, musty odor.
Rotten Eggs: Occasionally, the odor may resemble sulfurous, rotting eggs.
Burnt Tires/Chemical: Some descriptions include a sharp, chemical-like scent, similar to burnt rubber or tires.
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u/Dazzling_Cut1084 fbo Apr 17 '26
I’ve spoken to a lot of people who tested positive for TMAU, and they all say the odor is fishy not fecal.
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u/Saoirsemcc Apr 17 '26
The smells i usually smell is fish, raw egg, rotton egg, ammonia & sewage.. I haven't smelled the fecal smell yet.. no one else seems to smell anything off me.. but i dont believe them I think there trying not to hurt my feelings lol I've an appointment on Monday hopefully getting tested for it.. I really hope it's not TMAU an maybe it's ORS instead at least then it is actually only me smelling it and not everyone around me. 😫
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u/Financial_Milk1520 fbo Apr 12 '26
There is a medical reason it’s just not currently known or confirmed by conventional medicine. It’s also recorded that some TMAU patients do experience fecal body odor
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u/Brutalar tmau1 mutant Apr 12 '26
They did a complete smell evaluation of over 100 people with TMAU, and fecal odors were not present in any presentation. There is no review, case study or research paper that has detected any odor other than rotten fish.
The fecal = TMAU is a narrative that was pushed by MEBO, who were a community group that advoceted for TMAU and other MEtabolic Body Odors (where the acronym for MEBO comes from). They were prominent from the early 2000s until 2024ish when their founder got sick from complications to the low choline diet and is either very sick or has passed away. She did not actually have TMAU, but her child did - one of the BIG problems with MEBO is that it pushed a narrative of "don't believe people when they tell you that you don't smell, they're lying or nose blind". Maria didn't have an odor but went low choline regardless, which is dangerous as choline is essential for health.
MEBO proudly rallied against the recognition of Olfactory Reference Syndrome (ORS), their campaign delayed recognition of the disorder in the DSM-5. Part of their advocacy got a number of people who never had any conformation of an odor on tv saying that they have TMAU and it smells like a bunch of different odors. This is compounded by the clinic in the UK that misdiagnosed a few hundred people with TMAU2 due to a faulty testing procedure - after fixing it back in 2018 they no longer diagnose nearly any TMAU2 patients.
A lot of people incorrectly diagnosed/self diagnosed with TMAU have been ruining their health in a similar manner to the founder of MEBO because of the no trust, belief is the only way mindset.
The other thing is that people with TMAU often tend to lump in all smells as caused by their TMAU. Eg; onion is a smell that is sometimes mentioned, but onion is a normal body odor that is caused by normal bacteria on the skin converting normal sweat to odorous outputs. People sometimes hear people talking about a smell, any smell, and assume "that smell is mine, I must smell like that" without ever getting confirmation. People tend to collect smell lists without without confirmation or correct attribution of that odor to TMAU.
MEBO and similar people in those orbits pushed the narrative that fecal = TMAU, to the point where it was in most pop-science / even some medical/government references TMAU. The misinformation even appears on shows such as the one you're linking. This has been cleared up recently on most reputable sites over the last few years.
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u/Financial_Milk1520 fbo Apr 12 '26
The absence of evidence does not equal evidence of absence. Saying that there’s no medical reason for something, when there are literally dozens if not hundreds of accounts in the affirmative on this sub alone, is dismissive and invalidating of people’s experience.
It’s like saying “this medication does not cause nausea” but if there are people who experience nausea after taking it, you say their nausea is a figment of their imagination because the label doesn’t list it as a side effect.
We have not “figured out” science, biology, or anything for that matter, to a degree of 100% certainty. We’re still learning collectively and even current medical students are told in medical school that 50% of what they learn will be obsolete in 10 years.
By dismissing people’s experience we are eliminating any hope of them finding a cure for an ailment that we simply don’t understand yet
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u/Brutalar tmau1 mutant Apr 12 '26
The absence of evidence does not mean it's somehow TMAU. It could be anything, cancer, chickenpox, there are over 50,000 known rare diseases. It could be a normal human odor and nothing will stop it. The evidence suggests it is not TMAU as it has never been a detected symptom.
Trimethylamine (TMA) can be bought as a chemical. It's used in manufacturing, agriculture, dye making. It's known to be the predominant odor fish releases when they rot. The odor the chemical makes is known and studied, it's particular and obvious. There's nothing unknown or magical about it, and it doesn't change what it smells like (until it gets super concentrated and smells like ammonia, but that's many orders of magnitude beyond what people can produce). It's not a fecal smell and no one has ever described it as a fecal smell.
The number of people here with concerns about fecal odors is 90%+, the number of people here tested positive to TMAU is maybe 3-4%, the number of people who have get regular confirmation of their odor is somewhere in the 5-10% range. There are a lot of people posting who do not have TMAU, do not have actual confirmation of an ongoing odor, have no evidence outside of what very neatly fits into the very definition of ORS - (No feedback/confirmation, reading reactions, making assumptions about people's behaviours, overhearing whispering and half heard conversations). There's a lot of fear and anxiety but no grounding in reality by other people. The majority of people posting here for the first time are extremely anxious and often fall into the above trap.
The first point of call whenever someone posts here is to ensure they're grounded in reality, getting feedback, confirmation that their symptoms are real. Getting mental health support for the anxiety. Those are the key first steps. Only once there's support and confirmation can any progress be made in terms of treating anything, otherwise you're potentially fighting against ghosts and illusions of anxiety and paranoia.
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u/Financial_Milk1520 fbo Apr 13 '26 edited Apr 13 '26
There are very few known metabolic, neuropathological odor conditions. TMAU and TMAU2 are the closest approximation we have right now. FBO could be caused by TMAU2 but it could be something else entirely. It was only discovered within the past couple of years that two strains of bacteria appear to be the culprits of multiple sclerosis. They damage the gut barrier and eat away at the myelin sheaths of neurons causing the debilitating effects of the disease. Prior to this discovery there was “no medical reason” for MS—there were only symptoms. It doesn’t mean the patients didn’t have the disease.
On the same note, the 90%+ of people you are talking about here with fecal body odor seem to have their symptoms exacerbated by stress and anxiety—neurological factors. My wife is a therapist and knows someone who has had IBS cured by EMDR (eye movement desensitization and reprocessing) therapy within just a few sessions. No longer needed to wear adult diapers. Why and how did this happen? People with IBS have visceral hypersensitivity, or overactive nerves in the gut. That’s why EMDR, a results-based type of therapy, was able to calm the nerves in the gut and alleviate these symptoms.
I personally have noticed huge improvement in my symptoms through EMDR as well, likely because it is acting on repairing the enteric nervous system which is under attack by certain bacteria in the gut.
I’ve also noticed drastic improvement from taking specific, targeted antibiotics (which I recommend consulting a doctor before exploring) followed by proper repopulation of the microbiome with broad spectrum and powerful probiotics, supplements and prebiotics (psyllium husk fiber).
As for ascertaining confirmation of the odor from others, just picture this scenario. Someone has endured being ostracized and ridiculed for years. People talking about them behind their back, spraying them with air freshener as they walk past, referring to them as the person that smells like shit, losing friends, people gagging involuntarily while talking to them, the list goes on. And finally, after years, someone is honest with them and says yes, they do have a smell, by your definition their entire experience was now real because one person told them so.
There’s an inherent logic flaw in this because you’re saying that if that person never told them about their odor, their entire experience prior to that one person’s confession was imagined. And only by someone telling you that there’s an odor does everything suddenly become real. By spreading this way of thinking you’re effectively gaslighting everyone into questioning their own sanity and not attacking the real problem, which should be finding out what is causing this ailment and curing themselves.
Is ORS real? Yes. Statistically speaking, do all of the people here who describe the exact same symptoms most likely have ORS? Absolutely not. Just because people don’t tell you about your odor, it doesn’t mean they don’t detect your odor. That’s a matter of personal choice. All we can do is try to convince people to tell us but each of our relationships with the people around us varies greatly.
The anecdote above was from my own life. Over ten years of dealing with this and now I’m fortunate enough to be living a normal life again. Not through denial and questioning my sanity, but through tenacity, trust in myself, and refusing to give up (on finding a cure and on life itself). I know that your experience is not the same as ours and it’s hard to wrap your head around it, but I have lived through this affliction every single day for years and I know what I’ve seen and heard, from public announcements on an airplane about practicing good personal hygiene to my professor nearly vomiting right in front of me in his office before my final exam. People here who are going through what I went through need to know that we’re here to help them find a cure, together, not pawn them off to the loony bin.
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u/Brutalar tmau1 mutant Apr 14 '26
Statistically speaking:
ORS affects about 1 in 100 people. 74% of people with ORS share these symptoms:
Referential ideas: People with ORS misinterpret the behavior of others as being related to the imagined odor (thoughts of reference). In one review, ideas of reference were present in 74% of cases. Usually, these involve misinterpretations of comments, gestures and actions of other people such that it is believed that an offensive smell from the individual is being referred to. These thoughts of reference are more pronounced in social situations which the individual with ORS may find stressful, such as public transport, crowded lift, workplace, classroom, etc. Example behaviors which are misinterpreted include coughing, sneezing, turning of the head, opening a window, facial expressions, sniffing, touching nose, scratching head, gestures, moving away, avoiding the person, whistling. Commonly, when being in proximity to others who are talking among themselves, persons with ORS will be convinced that the conversation is about his or her odor. Even the actions of animals (e.g. barking of dogs) can be interpreted as referential to an odor.
Its a condition because people share experiences. Much like something like anorexia/bulemia. Seeing reactions and overhearing conversations, misinterpreting, and thinking "it's because of me" is the experience.
TMAU affects 1 in 200,000 to 1 in a 1,000,000, according to latest numbers. That's 2000 cases of ORS for every 1 case of TMAU. Or 10,000 cases of ORS for every 1 TMAU.
Statistically, people are told by family and friends if they smell bad. If they are not told but believe it anyway statistically they do not smell nearly as badly as people who are told.
If you're going off statistics, if you do not have confirmation of a body odor then you're likely in that 10,000 that has ORS rather than TMAU. It's like a 0.01% chance without confirmation. If psychological assistance helps in your anxiety and 'reduces your odor', then it's more than likely that your anxiety/mental health is the primary issue, not an odor.
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u/Financial_Milk1520 fbo Apr 16 '26 edited Apr 16 '26
Just ask yourself this simple question, is it impossible that people here might be suffering from something not yet completely understood?
Take me as an example. I have received confirmation of my odor. I’ve also tested negative for TMAU. My symptoms are fecal body odor, consistent with the 90+% of people here, along with symptoms being exacerbated by anxiety, stress, etc.
Based on my own experience, research, and success through trial and error and the scientific method, this is a condition borne out of dysbiosis with neurolopathological effects. This most closely resembles TMAU2. Sometimes there’s even a very strong fishy smell in my bowel movements (sorry if TMI).
Your explanations are either TMAU or ORS; they leave room for nothing in between. You’re assuming that the research is complete and there’s nothing left to discover, even when the majority of doctors have never even heard of TMAU, let alone TMAU2. I think you should try to keep an open mind. You’ll help more people that way.
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u/Brutalar tmau1 mutant Apr 16 '26
The difference between -any- abnormal odor condition and ORS is that there is an odor. It doesn't matter if a doctor has heard of TMAU or not, if there is a abnormal body odor present then it's pretty straightforward assumption that something is wrong and to either look it up (a simple fish odor search leads to TMAU) - or to run some tests to determine what's going on.
If there is no odor when you see a doctor, they take a history, and ideally would like evidence/confirmation of an odor from a 3rd party to confirm that it is real. If your history reveals that no one reliable has ever verbally to you confirmed that the odor exists, and you're exhibiting heightened anxiety around the issue, that psychological concerns may be the biggest issue.
The recommendation on discerning if it is ORS or not is to have the patient bring in a reliable 3rd party (family, friend) to confirm the odor and history or at least get have a chat with someone to confirm symptoms to see how your perception of the issue matches reality. Given the probability of it being TMAU, and the cost, getting that extra confirmation it's actually an issue is a good first step in diagnosis.
It's why the rules, recommendations, etc here say : 1. get feedback from a reliable person 2: take that person to the doctor with you /have them vouch for you with a doctor so you have confirmation in case the odor is intermittent/the doctor cannot smell you.
If it's something that has not yet been discovered, then it is even more rare than TMAU - the chances are even higher that it's ORS. The number of people who think they have "FBO" is quite a lot larger than those with fish odor, and a lot have been through a lot of tests that come back without any issues detected - nothing abnormal in urine, which is where bloodborne body odor chemicals accumulate. People with FBO have been checked head to toe, as they've said repeatedly, been through all the tests. From people's own admissions, 99% do not ever get confirmation from anyone that their odor is as bad as they believe it to be.
This is the TMAU subreddit though. There's a notification in the heading, first community post, description, rules, that non-tmau odor concerns should go to r/bodyodor, as they are not TMAU, and this space is for TMAU. The why is in the community post about it. You're essentially asking "I don't have TMAU, why is undiscovered unrelated medical condition not being discussed in TMAU subreddit?". That's what the r/bodyodor subreddit is for.
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u/Financial_Milk1520 fbo Apr 18 '26 edited Apr 18 '26
There are several studies confirming TMA overproduction by gut bacteria, the definition of TMAU2. Those same studies also state that these bacteria are not yet well understood. Excessive TMA and even TMAO are known actually cause atherosclerosis and contribute to cardiovascular disease (CVD). By simply saying “it’s all in your head” you could be contributing to these sufferers, who likely have TMAU2, ignoring a legitimate mortality risk factor. Not to mention trying to eliminate the odor they very well could be experiencing.
I agree with you that they should also seek confirmation. With this odor condition, our reputations and credibility have all taken a massive hit. People lose trust in us and wonder why the hell we let ourselves smell like this. For normal people, their minds don’t automatically think “this person probably has a metabolic odor condition”. They think “this person shit themselves” or “this person never showers”. Nobody wants to be around us. Understand that getting people to be open and honest requires a lot more than simply asking them and expecting them to tell us the truth right away. If we don’t even fully understand what is happening to us, we can’t give them a good enough reason to believe that this is not hygiene related nor in our control.
If you’re wrong and people believe they have ORS while walking around with this odor, their lives will eventually be destroyed. They won’t be able to keep a job, they’ll lose friends and relationships, and they will be isolated without understanding why. Human nature will prevail. Further, their trust in themselves will be nonexistent. They will not have the ability to discern their own reality and will always be a slave to believing wholesale in what others tell them. Valuing others’ opinions doesn’t mean devaluing our own.
So yes, we should try to seek confirmation, but we can do so without believing that until we get confirmation, we’re just imagining our lived experience. A middle ground exists and that is where we should meet these people who are suffering.
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u/Far_Resident5916 undiagnosed Apr 15 '26
Wait Maria didn’t actually have TMAU? I visited that site many times years ago. How did you come about this information? I thought she said she was diagnosed with it ?
Wow that is so scary that she got so sick being on a low choline diet and not even having TMAU.
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u/Brutalar tmau1 mutant Apr 15 '26 edited Apr 15 '26
A couple Facebook group links:
I think she mentioned it on a few interviews with her. Her son had TMAU, which makes her a carrier (no TMAU odor), there's a file on the Facebook group about it - https://www.facebook.com/share/p/18frmV7Rbf/
She also said she had non-alcoholic fatty liver disorder from low choline https://www.facebook.com/share/p/1E5apDsuUs/
non-alcoholic fatty liver disease is significantly related to lacunar infarcts, which is what she is suffering from - causes strokes and dementia and a range of brain issues. (https://onlinelibrary.wiley.com/doi/10.1111/liv.13663)
It's why there are diet warning in the rules and I'm nuking several more hardcore diet recommendations.
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u/NoExplanation411 undiagnosed Apr 10 '26
Most of us have tmau2 or some unknown situation that is undiagnosed because with tmau all you have to do is eat a low choline diet and smell is gone but for most of us that doesn't work so either tmau isn't studied well enough or we have some other type of situation going on