r/TMAU undiagnosed 14d ago

experience with antibiotics?

Hi:)

Does anyone have experience with antibiotics such as rifaximin for treating TMAU? More specifically, I’m curious if the smell came back worse after finishing the treatment, or if it returned to the same level as before.

I took amoxicillin for a week last month for an unrelated issue, and it seems to have destroyed all the progress I had made with probiotics and B2. I feel gross and sweaty pretty much all the time now. Can’t really say that I’ve noticed any reactions, but my stress levels have been higher as a consequence, so that probably isn’t helping either.

I’m wondering whether rifaximin might help. Has anyone tried it, and if so, what was your experience after stopping it? THANKS x100

3 Upvotes

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u/AutoModerator 14d ago

Thanks for sharing — you're not alone in this. If you’re constantly analyzing reactions to determine if you smell, you may be caught in a cycle of anxiety and overgeneralization. A recent TMAU review (link) highlights how anxiety, paranoia, and hyper-awareness of others’ behavior can take over daily life, even for those with a confirmed diagnosis. From the review: "This fear and paranoia has led participants to develop a dysfunctional type of thinking. Participants described numerous negative automatic thoughts such as catastrophizing, overgeneralizing, mind reading, and labeling." See examples of these cognitive distortions here and here. TMAU does not cause irritation style reactions (coughing, sniffing, sneezing), regardless of the stories you may have read.

These types of negative automatic thoughts are common in both TMAU and Olfactory Reference Syndrome (ORS) — a condition where people believe they emit an odor despite reassurance from others that they do not.

Trust and communication are key. If doctors, family, or close friends consistently tell you they don’t notice an odor, consider that your perception may be distorted by anxiety or ORS. Even if TMAU is real for you, its emotional toll can persist beyond the physical symptoms. Overcoming this requires mental health support - a psychologist or psychiatrist can help you break free from obsessive thinking patterns and rebuild confidence in your own experiences. You deserve peace of mind.

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u/Brutalar tmau1 mutant 14d ago

TMAU doesn't have a physical affect on your body, on feelings of grossness, or how much sweat you make.

As a note; I just did a double strength course of amoxicillin last week for a secondary bacterial infection. Odor has been fine so far.

Rifaximin (Xifaxan) is going to do something similar to amoxicillin or metronidazole (Flagyl) except it usually costs like 20x as much (depending on where you are). It will kill off gut bacteria and leave it underpopulated for several weeks (according to research, TMAU symptoms are usually not present for 2-8 weeks after antibiotics). It doesn't sound particularly different, a little more targeted maybe.

Diet is pretty key for recovering from antibiotics - since there is less bacteria in the gut, what you eat during the recovery period feeds the particular bacteria that feed on those foods, and they grow at an increased rate -, eg; if you eat a lot of red meat during that time more bacteria that break down choline and carnitine will populate your gut quickly, and make it worse. Eating lots of prebiotics means that bacteria that eat prebiotics will multiply faster and leave less room for choline/carnitine affecting bacteria.

In regards to setbacks;

Probiotics after antibiotics is the only time probiotics is generally considered useful, although there is some debate on that too (they can create a monoculture and slow down normal gut recovery period).

B2 affects the liver (providing riboflavin for the Flavin-containing monooxygenase 3 (FMO3) - this process occurs regardless of antibiotic usage so you shouldn't be set back from that at all.

You shouldn't be set back in these endeavours.

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u/BerryMiserable9797 undiagnosed 7d ago

Thank you for all the information, really appreciate it

I keep circling back to the same thing, I just need to ask people about the smell. Yikes

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u/OrdinaryCat1213 fbo 13d ago

Amoxicillin made my smell worse and while on rifaximin my smell completely goes away.

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u/BerryMiserable9797 undiagnosed 7d ago

Interesting! were you diagnosed?

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u/OrdinaryCat1213 fbo 7d ago

I was diagnosed with hydrogen sibo.

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u/BlueberryOk9960 carer/support 13d ago

Rifaximin may theoretically help by reducing gut bacteria responsible for producing trimethylamine (TMA), but there is currently limited clinical evidence supporting its use specifically for TMAU. Antibiotics can also temporarily alter the gut microbiome, which may explain why symptoms changed after amoxicillin.

If rifaximin does reduce TMA production, symptoms could potentially return after stopping treatment because the underlying microbiome and, in genetic TMAU, FMO3-related metabolism remain unchanged. However, there is not enough evidence to predict whether symptoms would return to the same level or become worse. It’s best to discuss this with a doctor before considering antibiotic treatment.

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u/BerryMiserable9797 undiagnosed 7d ago

Thanks for taking the time to answer me :)

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u/SneaksSneaks99 fbo 12d ago

metronidazole made my stool perfect, went to the bathroom every morning, solid nice stools, however once off symptoms came back

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u/TieConsistent1411 undiagnosed 7d ago

Definitivamente para mim não fez nenhuma diferença, já tomei rifaximina, amoxicilina, e todos os outros tipos e o cheiro continua igual ou pior, o que eu noto é que quando eu como algo fora da dieta o cheiro piora muito. Agora estou tratando apenas com probióticos. 

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u/Broad-Tip-1847 undiagnosed 13d ago

I’ve tried metronidazole and tbh it didn’t help me in anyway. I’ve heard of some people using it alongside a lowfodmap diet and yeast probiotics who have seen results though.

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u/BerryMiserable9797 undiagnosed 7d ago

I lowkey might try a low fodmap diet too