Trimethylaminuria (TMAU) Community

Meet, discuss & support other patients or families living with Trimethylaminuria (TMAU). Contribute to topics, or just share what's on your mind

TMAU LEVELS NORMAL!

Hey guys, dont get toooo happy. I had this odour for about 4 years now Im 20 now. Got my results from Oct 2016 back, and guess what all my levels are normal. I go to Dr. Robin Lachmann, and the tests are done in Shenfield (?) hospital. Now my levels may be normal, but during that month I was still getting reactions, im actually scared like what the hell does this mean. I did another test in April 4th, results will be back maybe in late june. Since its the holidays Ive eaten chicken, cheese, and some sweets, the odour I believe remains the same, as long as I have bowel movements, the forbidden food I ate wont increase the odour. My odours are an intense fart smell, i believe whatever my farts smell like its the same for my breath (grosssss). Although im not completely sure on this as I cant smell it all the time. Im also thinking my odour comes out of my nose and breath, thus I had a tonsillectomy/adenoictemy, but with no change to the odour. Anyways im rambling, can anyone please, anything, suggest to me what could it mean, if the tmau levels come back normal, yet the reactions are still there. I currently take chlorophyll 200mg a day, 2 kelp, 1 zinc, 2 teabags of black tea daily, and 200 mg of b2 pills. The b2 definetely does something, but i am skeptical on taking 600 mg a day. I will soon buy a good probiotic like 100 billion too.

Best wishes, A

Adorn, please check Garden of Life Raw Kombucha. It will save you from taking extra pills in the morning because Kombucha is fermented Black Tea and therefore contains Vitamin B2 (200% if you take it 2x a day) and other B vitamins, digestive enzymes to break down food further in the gut, it has 1 billion extra probiotics in it too and Folate. The recommended dose is 2x/day but I take it once a day. So it's up to you if you want to take more than one.

might be SIBO or some sort of bacterial overgrowth

Vitamin B2 will give you extra energy but if I take more than the 100% RDA/RENI dose, I find it difficult to sleep at night. Best to take it before breakfast, that way you can work it off throughout the day.

I have bought kombucha but at the time I wasn't diagnosed so I wasn't eating the right diet. And took it for less than a week I was frustrated and wanted quick results. Does it do anything for you? I'm assuming the effects are only after few months. I will give it a try. Thank you both for the suggestions.

I can't remember where I read it but it says that it takes at least 3 months before you feel the full effect of supplements. That has also been my experience. Observe your symptoms and continue with it if it works. My sister says I have a mini pharmacy in my kitchen cupboards. LOL I keep trying new ones.

Stared to drink black tea today, hopefully it has a positivie effect like the othe supplements I am having. I have been taking liquid chlorophyll (Swisse) 20ml every morning and evening also 50billion strain probiotics (Wagner) one capsule every morning and evening. I dont know if the supplements make great result, but atleast I cannot smell my odor when i take those supplements..( hopefully others dont smell it either) . Or maybe they just make my sense of smell worse so I cannot smell my odor. ( who knows?) Earlier when i thought this was a sinus related problem i used to flush my sinuses with saline solution which took the smell aways from my nose. I found out from my mate that i still stank so propably the flush just took away my sense of smell... :P Hopefully it is not the case with these supplements.

Hello Adorn. It is the same for me. I get the impression that people think I have soiled myself. Maybe we all suffer from incontinence without realizing it? I also do not think that what I eat has an influence on the smell. I don't know...
You live in UK, right? Have you ever met people from the forum?

Yea I live in London nope never met anyone from here. But there's tmau group sessions every four months I got to those. They're arrnaged by the tmau team at the hospital I go to

barnowl
moderator

theres a london meetup on May 12th. cant recall where. i think there was a post about it

Although there is still an odor. Its great that you didnt test positive. Do you think that maybe the odor is no longer present and you may just believe you still do?
Why dont you try taking a food allergy test? Maybe your eating something your allergic to?

I honestly dont know about the smell still existing, there are times where reactions are nonexistent but as soon as i see someone "reacting" i think its because of me.

Maybe go to those group meeting for tmau and ask them for their opinions. I am sure many of them will be happy that you did not test positive and would probably give you their opinion. I think there are a lot more resources in the UK for tmau. I would see if you can talk to a specialist and just ask for opinion even if it's by email.

Hi adorn. I believe the smell comes from breath or some infection coming from inside your body. It cant be incontinence because if this happens you realize it is happening ( although you cant retain). I wondered that there may be some bacteria causing this smell... What I do have is an extremly large colon. (Dolico colon). I am not actually.a constipated person...I dont know...but the first thing peolpe thinks( fart) is the last thing I believe is going.on here...

Hi Marisaflorez! I do think it some kind of bad bacteria in our body. But how do we get rid of it. I did stool samples and one of the test was for bacteria and it came back negative. But I did get an infected razor bump that turned into staph infection and was put on a bactrim to treat it and no one said, smells like some farted or no coughing or sniffles while on it. But how do I convince a doctor that I'm not crazy?

sounds good might be helping...I,;)

It's an antibiotic. So I was on it for seven days, two pills a day. Doctors don't like to give you high dosage of antibiotics, so that was the best seven days I had in a longtime.

es I can emagaine that's the point the condations go down when your on them so theres deffently a link with gut .....

I used to take a lot of pills, and one day I just said screw it and stopped with all the vitamins and digestive pills. This was about a month ago and I surprisingly don't smell anymore. It seems as if it just went away. I eat whatever I want, I went to a seafood restaurant the other day and I had no care what so ever. I went to a hot crowded show after that and did not smell or get any weird looks. Another thing I stopped doing was wearing undershirts. I felt like that just compressed and held whatever smell and released it on the slightest movement. Once in a while I'll still smell it slightly but that is under extreme conditions like when I'm at the gym but if I spent my entire life worrying about this I would never live. I am African and my diet consist of a lot of meat and fish so I am quite happy with the smell not being as bad.

Hi! I'm so use to wearing a tank top under all my shirts. It's a bad habit that I have! I thought about stopping everything and just go out. I'm too scared! It's so hot in Louisiana and just my luck I would stink up the place. I don't eat red meat but I do love chicken and seafood.

I used to wear tank tops under all my shirts. I would even wear it under tank tops, that's how bad it was. Sometimes you just have to let go. All the money we spend a month on "natural pills" that don't work is too much. If you feel the smell coming on, just walk outside and clear your head. Nervousness and fear definitely brings the smell out. Try telling someone close, sometimes hearing the words I don't smell anything definitely calms your head and makes you feel confident.

anyone live in the midlands perhaps do a meet up sometime and be nice to go to London at some point to meet up as well....;.)