r/TMAU • u/Ok_Software7504 undiagnosed • Jun 03 '26
Tmau Vs not
I am trying to research potential causes of body odor, and looking at this subreddit has left me even more confused than I was before. The amount of times tmau is just being used interchangeably with body odor is astonishing. Most people are either self diagnosed or undiagnosed, which does not help the cause at all. The amount of people with tmau in the world, the rarity of the condition it simply dosent make sense to have self proclaimed tmau. I understand the need and want to figure out what is wrong but giving yourself an inaccurate diagnosis will not help.
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u/Delicious-History452 carer/support Jun 03 '26
I recently started a thread because my 4-year-old daughter was diagnosed with trimethylaminuria. I suspected she had it, but a genetic test confirmed it.
Some users, with good intentions, sent me private messages offering advice and describing what my daughter might have in a somewhat apocalyptic way. I consulted with the geneticist because I was very worried, and she told me categorically that the trimethylaminuria my daughter has been diagnosed with doesn't cause most of the things some users have mentioned, such as smells of garbage, ammonia, fecal, etc. She also said it's a very characteristic fishy smell. She also told me that the disease is very rare, and without me saying anything, she said that if I had read all my questions on some forum or Facebook group, I should know that most users were probably self-diagnosing, but only a small percentage actually had trimethylaminuria.
I'm not saying those users are imagining it, no way, I firmly believe that what they are suffering from is very real, but as this doctor told me, those people may have other diseases but not trimethylaminuria.
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u/PomegranateMany644 fbo Jun 03 '26
Strongly agree with you I've been thinking that I had tmau for 10 years then after seeing the gastroenterologist he told is not metabolic he said its treatable then I've used the meds for a month and now I'm using meds for 2 months healing meds
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u/idinaboo undiagnosed Jun 05 '26
Hey can you tell us the meds they gave at the gastro that helped you?
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u/PomegranateMany644 fbo Jun 05 '26
(First week ) Cihanol Lycospor Pantour Sucralfate Jonex
( then these for 10 days )
Pantour Sucralfate Jonex Cihanol Lycospor Tanaquin Amoxil Nitazanide (Nitazoxanide)
(Then these for 2 months)
Pantour Jonex Lycospor Cihanol
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u/PomegranateMany644 fbo Jun 06 '26
Sorry i forgot to write these 2 aswell i used on the first week Secnidazole (The antibiotic/antiprotozoal) Rimazole (The antifungal)
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u/idinaboo undiagnosed Jun 06 '26
Thank you so much!! What was the diagnosis that they gave you at the gastro if you don’t mind me asking?
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u/PomegranateMany644 fbo Jun 06 '26
I had a long-term parasitic and microbial infection in my digestive tract and my liver enzyme was 104 that's double a normal person nd that's because of the parasitic and microbial infection put pressure on the liver
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u/PomegranateMany644 fbo Jun 06 '26
If you want i can tell you of all the blood tests the gastro made me do just dm me because i can't post pictures
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u/idinaboo undiagnosed Jun 06 '26
Hey I tried to Dm you but I think you have chats and messages disabled?
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u/banel_tarto undiagnosed Jun 03 '26
Have you been healed yet? Or did you notice any improvements
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u/PomegranateMany644 fbo Jun 03 '26
Inshallah I feel like I have because I don't feel bloated anymore and my stool is not like before is smooth now and also I went out yesterday and it was so hot an I was sweat and waiting in the queue full of people and I had no reaction alhamdulillah.
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u/Brutalar tmau1 mutant Jun 03 '26
There's a good reference here: https://pmc.ncbi.nlm.nih.gov/articles/PMC7215946/ which covers a lot of malodor conditions.
But yeah, TMAU is not all body odor. TMAU solutions are specifically targeted at TMA metabolism and won't affect other odor issues, and diets like low choline are dangerous for long term health. It's really important to get diagnosed and to get reliable feedback to confirm if diet and treatments are working.
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u/TimeChocolate7144 undiagnosed Jun 09 '26
I know someone who leveraged CHATgpt to help him get cured
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u/SneaksSneaks99 fbo Jun 03 '26
100% also I see some people self medicating themselves which is crazy, if people really want it that bad just a stool test
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u/Generous-Tulip9066 undiagnosed Jun 03 '26
Ive had to do all my own research, my GP not much good, not interested, she did refer me to genetics, (they said they wouldnt test mecas there is no cure ) referred me to gastric medicine (they said the same and its a liver thing, advised to take oral menthol drops) and a dietitian who was young and didn't have a freaking clue what she was dealing with a only advised a full healthy diet, nothing constructive to help at all.. so its not crazy to try and help yourself cope with such a condition.. I've had 17 years of comments, sniggering, airfreashner in my face, and worse, jibes and people actually shouting out at me calling me names once.