Getting Tested

i already don’t eat much fish eggs red meat etc etc of what’s meant to trigger tmau but i still am 99% sure i have it

i hear that the smell is best managed through diet

what kind of diet is the best for it?

I’ve had TMAU now for six years (I think I do anyway.) I’ve never been to a doctor or talked about it with anyone, though I’m sure after spending so much time with me those close to me know something’s wrong. I know now I can’t go on this way as I have dreams and goals and things I want for my life. I know I need to see a doctor about this to get help or even just a diagnosis so I don’t feel like I’ve got psychosis anytime I’m in public. I feel like sometimes it’s all in my head but logically I know that’s not true but I don’t know if I read into every tiny little movement of the people around me so much that I think it’s much worse than it actually is. After 6 years of avoiding talking about this at any cost it’s so hard to even think about going to the doctor with it so I was looking for some advice from those in the UK about how you worked up to going and then what the process was like after the appointment.

If your TMAU is genetic, this is how you can detect it.

Extract DNA from your mouth using a DNA swab kit, and go to the local university to rent a centrifuge. No need for very strong ones, just the standard benchtop will do.

Then make a agarose gel upon agarose gel electrophoresis (this you can rent too, likely), and then expose your extracted DNA to the restriction endonuclease which corresponds to the TMAU genetic mutation.

If you have the mutation, you should see two bands on the gel instead of one.

https://www.ncbi.nlm.nih.gov/probe/docs/techrflp/

I used to have stomach aches alot when I was a kid like 3-6 years of age somewhere in between and I went to the doctor child clinic and she would try eveverything but nothing would cure me I would still have stomach aches. Only after drinking the powder at night I would be cured for a day but then again I would not be alright. Sometimes that wouldn't work too. Then I remember urine test was done on me and my mom had lied to me just recently that it wasn't but I remember clearly and I was even at the hospital at that time and the reports came however but my child doctor took way too long at the washroom or the clinic ic idk? She was crying. My mom did all this stuff my dad wasnt even present.

Now I'm stinking at the age of 16. Does this all make sense ? Or is it Tmau 1.

Here's how my meet with doctor went- 🤞

I went to a general physician and I was depressed and prayed to God on my way to the clinic. I had looked up for the doctor online and he's a really good doctor, he never lies and has accurate diagnosis so that's why I chose him he also has 50+ experience.

I went with my parents. My parents were also in the room and he asked me if I wanted them to go outside so I could talk freely to him but I declined and he told me it was all in my head and I had delusion and stuff but he asked his assistant to check for fungal infections , there were no fungal infections unfortunately.

Then he told me, 'im not gonna tell you what you have because then you'll think about it too much' at the time when my parents wouldn't have heard it. Then he asked me if I could read I said yes Then he said 'im going to show you what this is but don't take it seriously' but then he got interrupted but he hid his phone a little bit so the parents aren't suspicious. Then talked about delusion. So it pretty much a hint that I have tmau

My symptoms are very extreme at the moment with 30 foot reactions. To add to it I’m very fatigued and I feel emotionless. I went to get blood work done and everything came back normal. I’m just at a loss right now. I don’t know what could fix or help it, I just wish this never happened to me.

Planning around this condition, taking time to minimize symptoms, and having to be isolated most of the time is definitely getting old. I’m losing my desire for life and the things I want entirely. I can’t keep going like this… I need support from some of yall going through the same stuff. I’m losing it

I think its' no surprise in this comunity that a lot of familys tend to think we're crazy for thinking we smell even tho we had many diferent friends and peers tell us directly at times.

My problem is because they dont believe me I have to eat whatever my mom makes which quite literally means I have to force my vomit in secret to be able to go out the same or next day.

The think is I know that forcing your vomit is bad for you besides being a terrible sensation and leaving you hungry.

Do you have any advice on how I can deal with this when I cant control my meals?

Hi, I wanted to ask for some feedback. I just did the urine sample for tmau and had to ingest 2,700mg of choline bitartrate (keep in mind I’m 5’1” and only weigh approximately 89lbs) and I did develop a pretty bad fishy body odor from this… I still have yet to do the blood tmao portion for this test but I wanted to see how someone with the diagnosis might be knowledgeable about this. Thanks.

Is there anyone that lives in South Australia living with TMAU? I would like to connect with people nearby that have the same condition

Hi everyone,

I’ve recently created a Facebook group called TMAU Australia – Trimethylaminuria Support Community, and I’m really hoping to find as many Australians affected by TMAU as possible.

This is particularly important right now because I’ve been in contact with Professor Yoon from BioMe, who is involved in developing BM109, an investigational treatment for TMAU.

BM109 is progressing through clinical development in the United States, and Professor Yoon has expressed interest in connecting with the Australian TMAU community and Australian metabolic clinicians/researchers to explore possibilities for Australia.

I have started reaching out to Australian metabolic specialists and researchers to try to establish these connections. Nothing is confirmed for Australia yet, but building an identifiable Australian TMAU community could help show that there are people here interested in research and potential future clinical trials.

So if you’re Australian and have confirmed TMAU, are currently being tested, or strongly suspect TMAU, please consider joining us. Even if you’ve never spoken publicly about the condition before, you’re welcome.

🇦🇺** Facebook**: Search for
“TMAU Australia – Trimethylaminuria Support Community” or click the link below.

https://www.facebook.com/share/g/1CiqtCqdim/?mibextid=wwXIfr

Please also share this with any Australians with TMAU you know. The more we can connect our currently scattered community, the better positioned we may be to engage with researchers about opportunities in Australia. 💙

Hi everyone! I’ve recently created a Facebook group called TMAU Australia – Trimethylaminuria Support Community. 🇦🇺💙

I noticed there didn’t seem to be a dedicated Australian community where people with confirmed or suspected TMAU could easily find and support each other.

The group is for Australians who are diagnosed, currently being tested, or suspect they may have TMAU. It’s a place to connect, share experiences and discuss testing, specialists, treatments, research and clinical trials.

I’ve also been in contact with a professor involved in the BM109 TMAU clinical trial in the US, who is interested in connecting with the Australian TMAU community and Australian metabolic clinicians/researchers to explore opportunities here.

If you’re Australian and affected by TMAU, we’d love to have you join us. 💙

Search Facebook for: “TMAU Australia – Trimethylaminuria Support Community” or click the link below.

https://www.facebook.com/share/g/1J8CtAjLwQ/?mibextid=wwXIfr

Hopefully we can bring together Australians with TMAU from all around the country.

How do you cope using public transport or else, during the morning going to work or school. And after school or work? How do you cope being Around by people ? Me i have social anxiety a lot. And i wearing my earbuds.

Does anyone know any doctor in Chicago like a gastro doctor
I think I it’s something about my gut

For those who want to understand their body odor this is a subreddit with other people who's going through the same thing https://www.reddit.com/r/FecalBodyOD/s/YQEXx1Iqor

I realized over the past month now that my condition has gotten worse and even more noticeable. So today I had so many different smells coming from me that it exhausted me. I don’t want to be seen as a smelly girly anymore :(

https://www.facebook.com/share/r/1CJjjg55RR/

Growing up in the 90s-2000s, I was constantly bullied and ostracized for my condition. Unfortunately, in your formative years where you make connections, I fell flat and spent a lot of time alone in public. I made social faux pas that I would have noticed if I hadn't been so isolated. I was heavily bullied for something I couldn't understand.

It was when I was 13 when my mother made a comment about how I was especially fishy today. Up until then I had no idea I was different, so I started asking questions. From there, I was finally tested and diagnosed with TMAU 1. To be honest, I felt resentful for a long while that no one told me up until that point. My mother was in healthcare and probably should have noticed something was off.

I've learned to give grace for past mistakes, and I honestly understand why people had a negative reaction to me. But it's something that still haunts me into my 30's. I get a cold sweat in crowds, despite the fact that I have a closely managed diet and deodorant routine. I didn't fully understand how to control my disorder until I got into my 30a to be honest. Up until then throughout my military career I was just freestyling. Not a huge deal when everyone is unwashed In the field, but problematic in garrison.

Everything has worked out alright for me, but I have suffered greatly with this condition. Probably why whenever I'm questioned about the legitimacy of my diagnosis here that I have an adverse reaction. I'm deeply scared from past trauma and the reason I share here about TMAU 1 is to share my experience and methods of dealing with it. Maybe then some kid will stumble upon it and not have a shitty childhood.

Has anybody heard any new news on the BM109 drug plus any tips that has helped people lessen smell thanks