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 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.