Room for one more?

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Re: Room for one more?

Postby PoetFire » Thu Aug 29, 2013 2:59 pm

Hi Lindsay. I think most of us feel the same way about TMAU, that it does not fully explain our problem (or at all). I think what has happened is that 43 years ago some Dr's looked for a certain compound when a mother said her daughter sometimes smelt of rotten fish and that is still the only compound they test for in malodor cases. As it happens, I think they have got the right enzyme (FMO3) but have limited it to one compound (trimethylamine) rather than the 1,000s of other sulfides and amines it oxidizes. Or if not FMO3 then one or more of that group of oxidizing enzymes.

As it happens, trimethylamine should be a good biomarker test of FMO3 function but I am not even 100% sure of that. I myself have had a primary diagnosis then another where I was secondary with a huge amount of TMAO (suggesting mega-FMO3 function).

I think most of us would be in the mild and transient category since Drs can't smell us, although since its bowel smells it's a bit like terrorism in that a 'mild' problem can cause a major psychological problem. Most of us are probably in the 80%-92% FMO3 function or thereabouts (or even higher with, I guess, 'no reserve capacity')

Basically I would say unless the person thinks TMAU fully explains their problem then we are waiting until the proper (or other) metabolic malodor conditions are discovered.

So welcome :)
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Re: Room for one more?

Postby LJNLindsay » Fri Aug 30, 2013 12:17 am

Hi Poetfire,

And thanks for the welcome.

I'm off to see my GP again, tomorrow (if I can get an appointment with her) to see if she will give me the test though, given her reluctance thus far, I really don't hold out much hope. Either way I feel 'in limbo'.

Even if I had the test, & the results came back 'negative' it's not altogether a reliable indication, is it?

Besides, apart from being mild, transient, symptoms (possibly bordering on ORS) I feel stuck either way, as my paranoia is at an all-time high :-(

Mum & I went on the bus this am, short 15 minute journey &, after a boiled egg breakfast, no one said anything, nor did I feel 'offensive' in any way.

I just don't understand it, & I seriously do not know what to do for the best.

Be it TMAU, or ORS, I am always, always, going to have this paranoia. Does it ever, EVER go away, or lessen to any extent?

Sorry if this post is a bit on the maudlin side, but I just can't seem to think straight these days!

"When No One Else Cares; My Dogs' Still Love Me"
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Location: Cornwall

Re: Room for one more?

Postby Veronica » Sat Aug 31, 2013 7:43 am


may I ask you something...hope you don't think I'm rude asking, you don't have to answer if you don't want to.

What kind of smell do you think you have, and where is it mainly coming from if it isn't coming from your breath, feet or urine?
Has anyone EVER commented out loud on your bad smell or do you just think people think you smell bad?

Something must have happened to set off your smell paranoia in the first place...20 years with paranoia about smelling bad sounds unbelievable if no one has ever said you smell.

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Re: Room for one more?

Postby LJNLindsay » Sat Aug 31, 2013 7:44 pm

Hi Veronica,

It's a long story but, it started off with many people commenting about the (strong) perfume that I used to wear. Then they'd progress to saying stuff like "it smells like cat piss" or "like public toilets". Laterly I'd just get the "phew" comments.

I've never had smelly feet, armpits or bad breath. And my urine never smells offensive.

Personally, as I've said, I really don't believe that I have tmau, but I'm living as if I do what with the constant paranoia.

My last job (night shift in an old folks home) the boss came in in the am; flung open the fire doors in the room where I had been sleeping, & said "phew". A few mins later, one of the day staff came in & bent down to get something from her bag that was hanging on the back of my chair, & also made the same comment :-(

Yet, every morning, 6am, (without fail) I'd strip wash, & wash & dry my hair before the 8am shift started. I do remember using perfume so maybe *that* was the problem. I don't know.

None of my family have mentioned it, & some days I'd have 2, or 3 eggs, + fish & chips, yet I, nor my family, notice anything...

I just feel like I'm going crazy cos I'm constantly on the alert - listening out for comments & reactions from strangers.

Personally there are times when I do think I smell. Usually in the run-up to my menstrual cycle but, even then, it's not horrendous. Maybe a cabbage-like smell, sometimes 'musty'.

Even though I've been dealing with this for 20 years, my GP still won't let me take the test :-(

I hope this answers some of your questions :-)

"When No One Else Cares; My Dogs' Still Love Me"
Posts: 70
Joined: Mon Aug 26, 2013 12:50 am
Location: Cornwall

Re: Room for one more?

Postby bigvern » Fri Sep 06, 2013 8:39 pm


just picked up on this as I had the same cats piss/ammonia comments and am diagnosed TMAU, same thing with (understandable) paranoia, waiting for people to pick up on things...
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Joined: Thu Jun 25, 2009 5:37 pm

Re: Room for one more?

Postby LJNLindsay » Fri Sep 06, 2013 10:07 pm


Hi there,

The odour won't/wouldn't kill me, I know, but this damn paranoia might :cry:

I just wish that we, as humans, would treat one another with more respect & understanding, sigh.

"When No One Else Cares; My Dogs' Still Love Me"
Posts: 70
Joined: Mon Aug 26, 2013 12:50 am
Location: Cornwall


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