Post from yahoo group
Posted: Wed Apr 25, 2007 5:33 pm
Someone posted this at the yahoo group. Interesting post.
""Post from TMAU site re: adenoids
Hello:
We have discussed this issue many times; but here is a post from someone on the TMAU site about that is interesting. Long, but worth it. Just another person's struggle with odor issues. Laura
My strange (non-TMAU) BO finally solved!
Posted by: "elizf15" elizabeth1659@... elizf15
Mon Apr 23, 2007 5:30 am (PST)
Hi, everyone. I've been receiving messages from this group for a
couple of years but I think this is the first time I've posted. I
have been totally perplexed but I think I finally have an answer to
my body odor problem, which reminds me of Arun's and others' who
don't seem to have classic TMAU. Here is the whole story (it's a
long one). This is such a nightmarish problem that I am going to try
to post my story wherever I can in case it will help anyone else--
I've posted at healthboards. com and please feel free to tell me of
other forums where people discuss this.
Like many (or all) of you, I have been suffering from a very
strange, strong, unpleasant body odor that comes and goes. It
started about seven years ago. At the end of college, I was very
sleep deprived and run down. Then I moved to a different city for
grad school. Soon afterward I developed various digestive problems
and began hearing people complain about a terrible smell wherever I
went, which was strange because my sense of smell was fine but I
could smell nothing. It was so strong that a woman fifteen feet away
put her shirt over her nose. People also offered me gum for my
breath. I showered, washed my hair, brushed and flossed, and put on
deodorant every day, so it wasn't a hygiene problem.
I went to scads of doctors and most of them suggested I was being
paranoid. Finally, on a visit home my mom noticed the odor (which
was usually worse when I was stressed out or flustered) and told me
about it, although it was difficult for her. Now at least I could
report to the doctors that I had some corroboration- -they always
said they couldn't smell anything, which may have been true since it
was so unpredictable. I went to gastroenterologists , dermatologists,
gynecologists, an endocrinologist, a naturopath, and an
acupuncturist on top of the general practitioners- -no ideas. I
learned about trimethylaminuria, but the smell didn't appear
reliably after I'd eaten eggs, fish, or legumes. I wrote to Dr.
Preti but never got tested, partly because I was waiting until I
could afford to do the urine test and/or travel to Pennsylvania,
partly because I was discouraged by the lack of correlation between
the odor and my diet.
Several doctors looked in my throat and said everything looked
normal--tiny tonsils, etc. But I did have tonsil stones--little
stinky pellets that would occasionally pop into my mouth. I used to
just swallow them assuming they were dried mucus, but when I got a
look (and sniff) at them I did some research on the Internet and
found they came from crypts or holes in the tonsils--opinions vary
as to how they form but they are calcified and bacteria-rich. My ENT
doubted they could be causing body odor, but we went ahead and took
my tonsils out. (FYI, if you are an adult having this done, try to
get at least 10 days off work and make sure someone is around to
help take care of you for the first few days--it wasn't as painful
as I feared but it's a long and bumpy recovery.)
Long after the surgery, however, I continued having the little
stinky pellets occasionally, only now they were smaller. And a few
months ago, my mom told me that she could smell the BO again. She
said it was very unusual and hard to describe but "acrid," "tangy,"
unlike normal sweat, and definitely not a healthy smell. (Other
people have been more colorful in their descriptions- -"cheap paint
thinner," "wh*re sweat," and of course "disgusting. ") She thought it
was emanating from my whole body rather than just one part. I had
read about little children who stick something in their noses and
the putrefied smell eventually spreads through their bodies, making
them smell all over. So I went to another ENT and got his opinion.
He said it was conceivable it had something to do with my sinuses
(not that I'd stuck anything in there!) and ordered a sinus CT scan.
After he reviewed it he said my sinuses were perfect but my adenoids
were enlarged. Wanting to be as aggressive as possible, I asked him
to take them out and he did. Adenoidectomy is much easier than
tonsillectomy- -you can have it done on a Friday and feel pretty much
back to normal by Monday.
When I went for the followup visit, he told me that my adenoids
contained a hollow or bowl of totally putrified tissue. He said it
wasn't at all subtle and that it was possible that this could have
been causing the odor. I don't have 100% proof that this is the
answer, but it fits with other evidence. For one thing, when my
mother recently told me she smelled the BO again, I had just been on
a train trip during which I'd felt some solid lumps come into the
back of my throat along with the usual mucus of postnasal drip. I
couldn't spit them out, so I swallowed them. An hour later I was
stinking from my whole body.
And not long after that (but before the adenoidectomy) , I was eating
some pumpkin seeds and suddenly had a horrible taste in my mouth. It
was literally the worst thing I had ever tasted, and so strong that
I couldn't get it out of my mouth even after brushing and flossing
and using a tongue scraper. I though that either one of the seeds
was incredibly rancid or some foreign object had gotten into the
seeds, so I called up the store manager and told her there was
something wrong with them. But now I hypothesize that a bit of muck
had popped out of my adenoids and instead of swallowing it or
spitting it out I chewed it, thus experiencing the "smell" myself
for the first time--nothing to do with the pumpkin seeds I happened
to be eating. The flavor was slightly fishy, but more like Didi-
Seven, the petrol-ly, chemically cleaning paste. Very bad and VERY
powerful. And my mom confirms that what she smelled was a bit like
Didi-Seven. I also think the flavor was a bit like rotten wool, but
my mother says she doesn't know what that would smell like.
Again, I'm not positive yet that I've been cured--the odor has been
so intermittent in the last few years that the fact it hasn't
reappeared since the adenoidectomy doesn't mean it never will. But
for the first time a doctor has found (and fixed) something that was
CLEARLY wrong with my body, and for the first time I have a theory
that really makes sense with all the clues I have tried to gather in
spite of not being able to smell it myself and having to guess
whether it was happening on a given day based on other people's
comments, etc.
Now that I've tuned in to the sensations back there I know I have a
bad case of postnasal drip. Maybe when I was sleep deprived all
those years ago I picked up a virus that caused the drip and it just
collected in those glands until they were diseased. Note that
doctors always told me my nose, mouth, and throat looked completely
normal when they examined me, and even the CAT scan looked normal
except for my adenoids being a bit enlarged. Only surgery revealed
what was rotten. Anyway, when my throat is completely healed from
the last surgery I plan to start a regimen of steaming and
irrigating my sinuses to try to lessen the drip. I also try to spit
mucus out whenever I can instead of unconsciously swallowing it--
luckily I work from home so that's not too awkward, although there's
not much I can do when I'm asleep.
I will write again if I gain any more insight or evidence about my
case. I am very optimistic, for the first time in this whole ordeal,
that the problem is solved. And I really hope it can solve the
problem for some of the other people dealing with uncontrollable BO.
It is so horrible socially, professionally, everything ... you are
perfectly sane and you go to doctors who think that you never
learned how to use deodorant or that you're simply out of your
mind ... and some people treat you like a leper ... and other people
demonstrate their tolerance and humanity in the way they treat you.
Don't forget them!
Good luck to everyone, and feel free to write with any questions or
suggestions for other places to post this info.""
""Post from TMAU site re: adenoids
Hello:
We have discussed this issue many times; but here is a post from someone on the TMAU site about that is interesting. Long, but worth it. Just another person's struggle with odor issues. Laura
My strange (non-TMAU) BO finally solved!
Posted by: "elizf15" elizabeth1659@... elizf15
Mon Apr 23, 2007 5:30 am (PST)
Hi, everyone. I've been receiving messages from this group for a
couple of years but I think this is the first time I've posted. I
have been totally perplexed but I think I finally have an answer to
my body odor problem, which reminds me of Arun's and others' who
don't seem to have classic TMAU. Here is the whole story (it's a
long one). This is such a nightmarish problem that I am going to try
to post my story wherever I can in case it will help anyone else--
I've posted at healthboards. com and please feel free to tell me of
other forums where people discuss this.
Like many (or all) of you, I have been suffering from a very
strange, strong, unpleasant body odor that comes and goes. It
started about seven years ago. At the end of college, I was very
sleep deprived and run down. Then I moved to a different city for
grad school. Soon afterward I developed various digestive problems
and began hearing people complain about a terrible smell wherever I
went, which was strange because my sense of smell was fine but I
could smell nothing. It was so strong that a woman fifteen feet away
put her shirt over her nose. People also offered me gum for my
breath. I showered, washed my hair, brushed and flossed, and put on
deodorant every day, so it wasn't a hygiene problem.
I went to scads of doctors and most of them suggested I was being
paranoid. Finally, on a visit home my mom noticed the odor (which
was usually worse when I was stressed out or flustered) and told me
about it, although it was difficult for her. Now at least I could
report to the doctors that I had some corroboration- -they always
said they couldn't smell anything, which may have been true since it
was so unpredictable. I went to gastroenterologists , dermatologists,
gynecologists, an endocrinologist, a naturopath, and an
acupuncturist on top of the general practitioners- -no ideas. I
learned about trimethylaminuria, but the smell didn't appear
reliably after I'd eaten eggs, fish, or legumes. I wrote to Dr.
Preti but never got tested, partly because I was waiting until I
could afford to do the urine test and/or travel to Pennsylvania,
partly because I was discouraged by the lack of correlation between
the odor and my diet.
Several doctors looked in my throat and said everything looked
normal--tiny tonsils, etc. But I did have tonsil stones--little
stinky pellets that would occasionally pop into my mouth. I used to
just swallow them assuming they were dried mucus, but when I got a
look (and sniff) at them I did some research on the Internet and
found they came from crypts or holes in the tonsils--opinions vary
as to how they form but they are calcified and bacteria-rich. My ENT
doubted they could be causing body odor, but we went ahead and took
my tonsils out. (FYI, if you are an adult having this done, try to
get at least 10 days off work and make sure someone is around to
help take care of you for the first few days--it wasn't as painful
as I feared but it's a long and bumpy recovery.)
Long after the surgery, however, I continued having the little
stinky pellets occasionally, only now they were smaller. And a few
months ago, my mom told me that she could smell the BO again. She
said it was very unusual and hard to describe but "acrid," "tangy,"
unlike normal sweat, and definitely not a healthy smell. (Other
people have been more colorful in their descriptions- -"cheap paint
thinner," "wh*re sweat," and of course "disgusting. ") She thought it
was emanating from my whole body rather than just one part. I had
read about little children who stick something in their noses and
the putrefied smell eventually spreads through their bodies, making
them smell all over. So I went to another ENT and got his opinion.
He said it was conceivable it had something to do with my sinuses
(not that I'd stuck anything in there!) and ordered a sinus CT scan.
After he reviewed it he said my sinuses were perfect but my adenoids
were enlarged. Wanting to be as aggressive as possible, I asked him
to take them out and he did. Adenoidectomy is much easier than
tonsillectomy- -you can have it done on a Friday and feel pretty much
back to normal by Monday.
When I went for the followup visit, he told me that my adenoids
contained a hollow or bowl of totally putrified tissue. He said it
wasn't at all subtle and that it was possible that this could have
been causing the odor. I don't have 100% proof that this is the
answer, but it fits with other evidence. For one thing, when my
mother recently told me she smelled the BO again, I had just been on
a train trip during which I'd felt some solid lumps come into the
back of my throat along with the usual mucus of postnasal drip. I
couldn't spit them out, so I swallowed them. An hour later I was
stinking from my whole body.
And not long after that (but before the adenoidectomy) , I was eating
some pumpkin seeds and suddenly had a horrible taste in my mouth. It
was literally the worst thing I had ever tasted, and so strong that
I couldn't get it out of my mouth even after brushing and flossing
and using a tongue scraper. I though that either one of the seeds
was incredibly rancid or some foreign object had gotten into the
seeds, so I called up the store manager and told her there was
something wrong with them. But now I hypothesize that a bit of muck
had popped out of my adenoids and instead of swallowing it or
spitting it out I chewed it, thus experiencing the "smell" myself
for the first time--nothing to do with the pumpkin seeds I happened
to be eating. The flavor was slightly fishy, but more like Didi-
Seven, the petrol-ly, chemically cleaning paste. Very bad and VERY
powerful. And my mom confirms that what she smelled was a bit like
Didi-Seven. I also think the flavor was a bit like rotten wool, but
my mother says she doesn't know what that would smell like.
Again, I'm not positive yet that I've been cured--the odor has been
so intermittent in the last few years that the fact it hasn't
reappeared since the adenoidectomy doesn't mean it never will. But
for the first time a doctor has found (and fixed) something that was
CLEARLY wrong with my body, and for the first time I have a theory
that really makes sense with all the clues I have tried to gather in
spite of not being able to smell it myself and having to guess
whether it was happening on a given day based on other people's
comments, etc.
Now that I've tuned in to the sensations back there I know I have a
bad case of postnasal drip. Maybe when I was sleep deprived all
those years ago I picked up a virus that caused the drip and it just
collected in those glands until they were diseased. Note that
doctors always told me my nose, mouth, and throat looked completely
normal when they examined me, and even the CAT scan looked normal
except for my adenoids being a bit enlarged. Only surgery revealed
what was rotten. Anyway, when my throat is completely healed from
the last surgery I plan to start a regimen of steaming and
irrigating my sinuses to try to lessen the drip. I also try to spit
mucus out whenever I can instead of unconsciously swallowing it--
luckily I work from home so that's not too awkward, although there's
not much I can do when I'm asleep.
I will write again if I gain any more insight or evidence about my
case. I am very optimistic, for the first time in this whole ordeal,
that the problem is solved. And I really hope it can solve the
problem for some of the other people dealing with uncontrollable BO.
It is so horrible socially, professionally, everything ... you are
perfectly sane and you go to doctors who think that you never
learned how to use deodorant or that you're simply out of your
mind ... and some people treat you like a leper ... and other people
demonstrate their tolerance and humanity in the way they treat you.
Don't forget them!
Good luck to everyone, and feel free to write with any questions or
suggestions for other places to post this info.""
