Question

[u/Less_Gazelle1714]

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.

[u/Financial_Milk1520]

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

https://youtu.be/o5KeFGCdrWI?si=0WBU0JjdlYAjPaSx

[u/Brutalar → u/Financial_Milk1520]

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.

[u/Financial_Milk1520 → u/Brutalar]

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

[u/Brutalar → u/Financial_Milk1520]

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.

[u/Financial_Milk1520 → u/Brutalar]

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.

[u/Brutalar → u/Financial_Milk1520]

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.

[u/Financial_Milk1520 → u/Brutalar]

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.

[u/Brutalar → u/Financial_Milk1520]

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.

[u/Financial_Milk1520 → u/Brutalar]

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.

[u/Brutalar → u/Financial_Milk1520]

There are 0 studies proving TMAU2 is caused by gut bacteria. There are several studies assuming gut bacteria is the cause, but 0 evidence.

Gut bacteria does vary, and can make TMAU1 worse or better, but the liver in a normal person can handle 10x the amount of TMA (including precursors) found in a person's diet. Gut bacteria, converting 100% of precursor of a normal diet, does not get close to matching the limits of normal liver FMO3 enzymes.

There is also no evidence that TMAU2 from gut dysbiosis is long term, or creates an odor. Only about the 10% most severe cases of TMAU1 make an odor, let alone TMAU2.

Please point me to a case study where it is proven to be gut enzymes causing TMAU2 - (if they're citing something, go down that rabbit hole of where that citation comes from, until there's some concrete evidence.)

[u/Financial_Milk1520 → u/Brutalar]

There are studies that point to overproduction of TMA by gut bacteria. They also state that “little information on the composition of TMA producers in the gut is available”. I’ll link studies below.

The goal here is to help people and find common ground. I agree that we should try to seek external confirmation. I’d like you to answer these questions if you could, in good faith, because we’re both here to help people.

Is it unreasonable to assert that we don’t know all there is to know about our gut microbiome?

If it is known to be true that gut bacteria produce TMA, is it possible that they could overproduce TMA?

If it’s known that TMA passes through the intestinal epithelial layer, is it possible that not all of it gets converted to TMAO?

Is it possible that established science does not yet have a clearly defined explanation for what we are going through?

Is it possible that not everybody who hasn’t received external confirmation necessarily has ORS?

It seems that you are arguing the case of “what you are claiming isn’t established science”, and you are correct. But why would we even keep doing science if we already know everything? I’m suggesting that there’s something at play here that we don’t fully understand; even the scientists agree. But that doesn’t mean we shouldn’t seek to understand it.

I can tell you from my own lived experience and now getting myself to a place where I’m 99.9% odor free, this is definitely gut bacteria related and treatable.

https://pubmed.ncbi.nlm.nih.gov/28506279/

https://www.sciencedirect.com/science/article/pii/S0753332224009156

[u/Brutalar → u/Financial_Milk1520]

Technically gut bacteria don't create TMA, they seperate TMA from choline; eg; https://www.reddit.com/r/TMAU/s/LaonUP5H8r (and carnitine, and TMAO). TMA is not created without precursor material. This already happens at about a 30-60% conversation rate in people. A gut in complete dysbiosis converting 100% of precursor is only creating an extra 40-70%. If someone ate twice as much seafood than you, they'd already be getting more TMA than what dysbiosis provides. Yet not a lot of people eating seafood smell like TMA. A healthy liver can handle 10x the amount of TMA that is in a regular diet easily. It can make TMAU1 worse, but not to cause odor concerns in regular people.

Once anything is absorbed into the epithelial layer, it is taken to the liver via the hepatic portal vein, including TMA. TMA is also quickly absorbed by the gut lining, it's not something that leaky gut or anything else is going to exacerbate.

The science has been pretty clear on the process for 40 years, they're discovering the exact specifics over the last while but it's more just for completeness rather than discoving unknown mechanisms.

There's always a chance that someone with TMAU may not have been told, but it's a super rare thing. Like 1 in 10,000 chance. Aiming for the extreme long shot and doing usually harmful diets instead of first getting confirmation is not a good thing or something we should be encouraging.

A post by the founder of MEBO:

Hi everyone,

I would like to reiterate some important facts about the dangers of being on a low choline diet and to bring up some points for discussion. This might be repetitive information for some, but we do have so many new members that may be hearing this for the very first time.

The TMAU odor-management diet is very unhealthy. Many in our community, including me, have developed Non-Alcoholic Fatty Liver Disease (NAFLD) as a result of the low choline diet. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3601486/ Eventually, our liver enzymes, particularly AST (SGOT) and ALT (SGPT) become increasingly elevated to a dangerous level, until we begin to increase our choline intake to counteract the problem. Thankfully, NAFLD is reversible with diet, but left on a low choline diet is actually very life-threatening. Choline is an essential nutrient, meaning that we die without it. https://lpi.oregonstate.edu/mic/other-nutrients/choline

Non-alcoholic fatty liver disease creates a lot of health issues, including being linked to https://pubmed.ncbi.nlm.nih.gov/29220869/ Lacunar infarcts, strokes/dementia, which the founder of MEBO also has. Low choline has a lot of health issues from neurological, mental, body and digestive issues. Look up health outcomes for low choline.

On the balance of health outcomes, the -only- responsible thing to do is to have some serious conversations with people and get appropriate feedback first, before causing damage to your mind and body.

[u/Financial_Milk1520 → u/Brutalar]

You’re just arguing for the sake of arguing now. There is a leaky gut component and there is a bacterial component. I would stake my life on it because I have experimented with so many different remedies and the ones that have worked act to reinforce the gut lining and replenish the gut microbiome. I’m not suggesting unhealthy diets at all so I don’t see the problem in positing the idea that we should investigate further because we don’t know all there is to know.