Questions to people with TMAU

general questions and discussions

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Re: Questions to people with TMAU

Postby gazela » Sun Jan 03, 2010 4:18 pm

Hi I cant smell any odour and nor can my wife or most of my friends.

I cannot say that the odour comes from any particular part of my body it seems to be all around me.

I have several times asked friends if my clothes smell and they have all said there is no smell other than clean clothing smell even after a good deal of sweating.

The odour is that pungent to some people that they can smell the odour outside room I am working in and on several occasions drivers have actually held their nose as they pass my motor vehicle ( car, van & motor bike )

Sometimes an odd thing is that people comment to me about a foul smell in another part of the room when I have entered and yet they cannot recognise it comes from me. It took umpteen times for this to happen before I realised it was dirrectly connected to my presence.

The odour also comes and goes and I seem to have no real control over its occurance or strength.

Hope this helps
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Re: Questions to people with TMAU

Postby garlicmonster » Sat Jan 09, 2010 7:30 pm

My own smell is not so much fishy as like a garlicky dustbin. Rather like the smell model railways or scalextric makes.
My bedroom stinks in the morning I don't notice till I go back in there from the bathroom then it hits me, Oh my gawd
It really seem to have started in my mid 30's and slowly got worse.
Perspiration has the usual smell, normal sweat.
Breath is a big problem. wife says its like something rotten, not the usual halitosis that people get.
many years before I developed it one of the secretaries at work had the garlicky smell which could fill the corridor, I thought it was a 'monthly feminine' problem until I (middle aged guy) developed it myself LoL That will teach me!
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Re: Questions to people with TMAU

Postby shinyfushia » Mon Jan 25, 2010 4:56 pm

Hi I am from California in the USA

> are you able to smell your odor? yes, IT SMELLS FISHY?
> does your sweat smells? NO
> does the odor stick on your clothes? NO
> which part of your body produces the most odor? MY PRIVATE AREA AND THIS IS THE ONLY PLACE I SMELL AND MY NAVEL ( belly button) SMELLS LIKE VINIGER
> do you produce odor even if you're not sweating? YES
> is the odor unbearable to others that they resort to covering their noses? ONLY WHEN I SIT DOWN AND GET UP IT SMELLS AND YES THEY MAKE A RUDE COMMENT
> does the odor surfaces even after a thorough shower? YES
> can the odor fill up a whole room? NO
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Joined: Mon Jan 25, 2010 4:20 pm

Re: Questions to people with TMAU

Postby Dafydd8 » Tue Feb 02, 2010 12:26 pm

Hi TMAU sufferers
I was diagnosed in 2005 after 20 odd years of not knowing what the cause was.It took a long time for me to pluck up the courage to seek help, though at the time GP was unhelpful as he thought it was all in my head and I was just paranoid.
I was in a relationship for 20yrs and my partner was unable to smell any offensive odour and by the way neither can I, which is frustrating and therefore difficult to establish if anything ie food stress sweating makes the condition worse.
I did eat fish last time about 20 years ago and I could smell it in my nostrils if I took a hard short breath through my nose and my father did comment that he could smell fishy odour.No surprise I didn't eat fish again apart from once testing if it happened again and the smell was not present in my nose.
I think it is very different for each individual
The only comments I have ever had are when I have been at work like in my presence, What's that smell? to aftershave being sprayed on me and a wash bag being thrown at me.
It makes you feel embarassed, ashamed, angry,paranoid,frustrated and you just want to return to your home and not go out again.
I do think that my condition is not as bad as other TMAU sufferers and I am able to still be employed as my job involves travel and I work with different people almost all the time and not in an office environment with the same people
It is a struggle and I am always on my guard and only truely relax when I'm at home.
The biggest relief for me was finding out that I wasn't going mad and just paranoid and that I do have a metabolic disorder.
Hopefully I will get to chat to you at some stage and thank you for reading my story lots more to say but I think enough for now.


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Re: Questions to people with TMAU

Postby bigvern » Wed Feb 10, 2010 2:27 pm

Hi – I know exactly where you are coming from – took me years to get diagnosed and I can’t smell it on myself no matter what. Luckily my wife is the same, though as you say it makes it very difficult to monitor and manage the condition with diet and antibiotics because you can’t smell it anyway. It’s a bugger but we’ve got to fight on.
All the best…
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Joined: Thu Jun 25, 2009 5:37 pm

Re: Questions to people with TMAU

Postby magsie » Fri Feb 12, 2010 8:09 pm

I can usually smell it myself and my smell is sometimes strong enough to fill a room unfortunately.
At work in an office I get nasty comments. Its not flatulence & there's no pressure or any chance to 'hold' off a flatulence. When I stand up I often get a bad odour. Then when I'm walking about I get a sudden strong smell, sometimes worse than others. I either get a smoke smell at low level, or a very strong smell that smells like instant soup, meat/ manure. Like flatulence the smell will dissappear in 10mins or so. I wear anti-flatulence underwear on top of normal underwear, but that does'nt stop this smell. Some times I get a strong sweat smell that drifts out - but when I go to the toilet there's not a smell eminating from me, when I take off my clothing at home my blouse smells of the deodorant! My private area gives off a fishy odour so I wear protective pads. I do have IBS/fibroids/menopause too.
Sometimes I can get through several days at work without having any smell problems, but then it happens so confidence & mood plummit! I notice that if I've had an upset stomach that morning, even after a shower & everythings clean & perfumed, I get a smell coming out of my pores that smells like manure..~& I smell it all day, or
I can smell a sickly smell all day. Even after a shower I've sometimes had a cloying smell . I use carex in the shower all over the body - antibacterial product.
This week has been bad at work, but I have had a few hot meals after work - my usual routine is to try and eat hot meals only Friday/Saturday and then a sandwich or salad only on Sunday & during the week its cereal/or toast breakfast, nothing during day, then sandwich/fruit only at night.
Sometimes at work we can smell something bad, wish ground would swallow us up - but someones having an instant soup or eating spicy crisps, coleslawed sandwich....... and we feel guilt/horror & its not always us .....!
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Re: Questions to people with TMAU

Postby smelly » Sat Feb 13, 2010 4:19 pm


Firstly, sorry for the LONG post. You have triggered a thought process that has been going on in my mind, and I am typing this to clarify my own thoughts on the things you bring up about your situation!

Have you actually been tested for TMAU? If you haven’t, I recommend you do and if you get resistance from your GP, post on here and we will help you. I have been trying to get tested for 5 years or so, and have recently managed to get a sample taken, so it IS POSSIBLE!

If you get a diagnosis you will then be able to follow specific advice for this condition which will include what to eat (you may find your cereals with milk arent a good idea for example), and what to wash with (the body wash you are using may be too acidic) and some antibiotics to reduce the amount of bacteria/smell you are sweating/breathing out.

Even if you dont have TMAU, you may have another metabolic condition (that has simillar effects) that cannot be diagnosed yet. Following the guidlines for TMAU MAY help you anyway, I dont know. The research for this stuff seems to be at the very beginning stages. But at least following the guidlines for TMAU will mean you aren’t doing anything dangerous to your body. For example, be careful using an antibacterial wash on your body. I went mad with strong alcohol mouthwash, using them repeatedly through the day and i think this has encouraged some really tough/strong smelling bacteria? to set up in there and Ive made the smell much worse, and now there’s a really obvious coating of something nasty that constantly comes back. By killing all the good microbes on your skin you MIGHT be encouraging something weird to start growing on your skin, especially if you are using it in 'sensitive' areas that need to be at a specific pH to be healthy – please make an appointment with the nurse at your Gp / Well woman clinic and ask for some tests/swabs to be taken because you are worried about the fishy odour because there are treatable things that can happen in that area!

If washing with antibacterials was reducing your odour, fair enough, but if you havent noticed a vast improvement by doing it , it maybe wize to ease off and use a gentle pH neutral body wash (you can get ones in the womens section of Boots chemist etc that say they will not alter the natural pH of skin.) Or if you are diagnosed with TMAU, they recommend ones that are slightly acidic (less than pH 7) I think because this helps prevent the smelly chemical evaporating off the skin, which it does at alkaline pH (above pH 7)? You can go mad as you want with hygiene by boiling all your towels/ face cloths / sponges, and do no harm, but be wary of going over the top trying to sterilize your body itself, because believe me, nature abhors a vacuum and SOMETHING WILL take up that space and it could be anything from fungus to yeast and all the smells in between!

Its funny what you say about getting a smell when you stand up. Maybe this is because you are expelling a big breath of air suddenly, which would fit in with the idea of TMAU because the chemical comes out in breath. And not being able to smell clothes fits because I think the chemical is supposed to be very volatile (it evaporates into the air unlike sweat which clings to the fabric?)

Looking back at what you are eating, Im thinking you should try and get breath test for fructose malabsorption/intolerance because you are limiting yourself to fruit, and celiac disease because the only other things you are eating are wheat (oh and lactose intolerance for the milk on your cereal, and butter on toast?) i know it is hard, HARD work battling through all the things that could be involved. I fought hard to get a breath test for SIBO (small bacterial overgrowth) and when I turned up at the clinic and found they were giving me glucose to drink for the test I could of cried, because apparently no one who knows what they are doing uses glucose –its absorbed at the very beginning of the small intestibe and probably wont hit any bacterial in the s. intestine. Its like wading through drying cement sometimes dealing with NHS. Why oh why didn’t I get a job that would pay me enough to buy private health treatment , aggrrrhhh!!! Anyway, I digress...!

I’m not an expert at all, and anyone who spots any mistakes / disagrees with anything Ive said PLEASE respond. I just wanted to point out a few things that Ive discovered myself while trying to figure out whats going on with my body!

For the office, maybe you could make up a solution of bicarbonate of soda in a spray bottle and spray the air periodically? People spray Fabreeze around me so I presume it must work for them! Although Id say the ones I have smelled are a bit flowery and sickly!

And I agree, its often NOT us that is making those smells!....... ;)

Good luck, and post again if you get any improvement / problems so we can all share our discoveries!!!
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Re: Questions to people with TMAU

Postby magsie » Sun Feb 14, 2010 4:49 pm

Hi Smelly,
Thanks so much for your informative reply.
I do know what you mean about other bacteria taking hold if they get chance, I have frequent atheletes foot, and that same bug frequently affects my navel - and that can make me smell like cheese all day, so I'm frequently using surgical spirit in navel after showers, and spraying my feet to hold off that condition occuring. I'll look into different body washes.
I've not got a formal diagnosis, but have been suffering since puberty, and have been going to doctors complaining for years - 'cause other people were complaining about me at work of course. The GP couldnt find anything/smell anything in my 20's and thought I was over-reacting or paranoid about other people. I'm in my 50's now so its been a long lonely life with a struggle to keep jobs.
In my 40's I was diagnosed with IBS and that was thought to be the cause of the problem, but the smell can be too strong to just be 'normal flatulence' . My urine smells very strong most of the time too. I avoid eating any curries/spicy foods, garlic and onions, 'cause they certainly make things worse
I will read-up about diet recommendations and see if I can get more control over it.
Thanks for your help
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Joined: Fri Feb 12, 2010 7:12 pm

Re: Questions to people with TMAU

Postby magsie » Fri Mar 12, 2010 7:18 pm

Wondering if anyone has noticed a bad smell coming from them straight after drinking a drink that's icy cold?
If I drink some water out of the chilled water cooler at work, I smell a bad smell coming away from me. Or
if I drink a cold can of pop out of the fridge, the same thing can happen.
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Re: Questions to people with TMAU

Postby kakashisensei » Thu Jul 01, 2010 8:29 am

> are you able to smell your odor? if yes, what sort of odor does it resembles?
Well, sometimes I can, sometimes I can't. Of all the times that I can actually smell it, it varies between garbage, flatulence, and rotting fish.
> does your sweat smells?
Haha, to be honest, I'm not too sure aye...probably, I guess...
> does the odor stick on your clothes?
Omg, yes! Grr & it's annoying too. Usually, it lingers around the arm pit area aye - that area has a particularly nasty smell that I can never get rid of, no matter how many times I wash it.
> which part of your body produces the most odor?
The smell is primarily a combination from these three areas: Under-arms, Breath & Private area
> do you produce odor even if you're not sweating?
Yes, I do even as I get out of the shower
> is the odor unbearable to others that they resort to covering their noses?
Well, to be quite frank, no. At school, people just ask the teacher to open the door or put the fans on - even if it's in freezing conditions. But apart from that, no.
> does the odor surfaces even after a thorough shower?
Yeah, it does. I use to scrub myself over like, 3 or 4 times in the shower and I would still smell it =/
> can the odor fill up a whole room?
So i've heard. I also remember a few years back when I had to catch bus to and from school with these guys who use to complain my stench reeked throughout the entire bus.
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