Hi All,
I posted the following message on Yaoo Trimethylaminuria message board on Jan 12th 2004. I guess this is very relevant to the thread!
I have breath and body odor but tested negative for TMAU in 1995.
Actually, I was more interested in the odor analysis than in being
tested but got both done anyway. I am aware that false negatives
occur but have no plans to be retested.
I am curious about howmany of you have actually met anyone else from
the Group? I see this as an important starting point for support and
research. I would like to tell you all about my experiences of
meeting other members since we would very much like to encourage you
to also meet up with each other (especially your nearest members).
On Jan 11, 2004, I met a lady in person whom I had been corresponding with for quite a while (2-3 years). Her name is Maggs (she very boldly
asked me to state her name in this posting)and we met in Harrogate,
North of England.
Like myself, she has strong fecal breath odor and we initially made
contact via an odor group. She has a family and our meeting was
entirely related to mutual support and research.
We met up yesterday for the very first time. It was a long drive for
me but I was curious about this lady because she claimed to be able
to smell (and taste!) her own breath odor all the time. I can never
smell (let alone taste) my own odor.
Initially we met outside a foodstore and there was a slight mutual
awkwardness in making eye contact. However, as we sat at the table
in a Thai restaurant this quickly disappeared and I noticed that
neither of us seemed to be 'offending' each other.
Rather baffled, I asked her if it would be alright if I could have a
little sniff since we were the only diners in this restaurant. It
was perhaps an unusual request however she sort of expected it and
we blew full blast into each other's faces several times.
Okay, here's the bizarre bit....neither of us could smell a thing!!
Believe me, this is more than absurd since my odor has in the past
resulted in people resigning en mass at work
Well, it had to be a mistake! Something was wrong! Was she lying to
be polite? Absolutely not! We had agreed to be completely honest
with each other (no matter howmuch it hurt) so that we could help
each other control it!! I sniffed her hands and all I could detect
was a very slight odor of soap. Her breath smelled only extremely
faintly like a mint we get here called a tic-tac.
Okay, so what about my body odor (I have both breath and body
odor)? ...maybe she could detect that? Well...she looked a little
bemused and so we did it discretely. She went to powder her nose and
passed me on her return. I lifted my arm to scratch my head and she
sunk her nostrils into my arm pit. Hmmm...perhaps not so discrete!
Well?....nothing offensive! Only the slight odor of sweat!! Being
seated at a window seat we were proudly displaying our antics to
passers by on the busy High Street:) Harrogate is a posh town (or
should I say pawwwwsh!)
The waiter arrived looking a bit perplexed and bowing profusely (it
was a very traditional Thai restaurant). As he served us I noticed
that he had a very strong body odor - it was not fecal but strong
and strange. There was certainly nothing wrong with our sense of
smell!
After the meal we went to a pub and chatted and exchanged further
sniffs. I spent 6 hours with this lady in order to see if there was
any change in odor as a result of eating or drinking or talking
excessively but neither of us smelled anything!!
When the lady got home she phoned me to say that her son had smelled
a really strong unpleasant smell on her clothes after our meeting.
This happens with me a lot since my odor is very very strong.
Believe me, this is not the first time this has happened to me. Two
years back, I met a teenage girl from the support group who claimed
to have strong fecal halitosis and she came to my house several
times for a chat. Neither of us smelled anything!!
I have also worked with someone who is supposed to have either
breath or body odor but only once smelled a strange body odor on him
when he looked hot, sweaty and flustered. I also once had a friend
who had strong fecal breath odor which I could smell when I was 14
years old however my odor has got stronger since then and I can no
longer smell him any more.
Okay, so what am I trying to get at? Well it is this. If any of you
have similar odor descriptions and meet up in person then you are
unlikely to smell each other. Please do NOT assume the other person
is lying or mad!!! These are my observations.
Do you understand what I am saying? I am trying to tell you that if
there is no immediate total cure for your condition you will at
least feel completely at ease with a partner who has the same odor
as you!
You can at least live some kind of happy life together and you will
not be able to smell each other. I hope nobody is offended by what I
have just said. I am actually trying to help!
In view of what I have said I think it would be a good idea if
members listed their location and their odor description.