-

Hi......and how should one use this coconut oil ?







-- In Trimethylaminuria@yahoogroups.com, "Diana" <dianagoodavage@...>
wrote:
>
> Hi, I'm new and I'm at the public library, where the deadline is
> strict.
>
> Sorry if this is short.
>
> Has anyone ever heard about coconut oil? I got some in the mail,
and I
> think it helped a lot. It's not me, but a famly member who may have
> the TMAU.
>

This article on Bromhidrosis has been updated and now includes info on
the two topical solutions that some people use for underarm and foot
odor. Either one needs a prescription. Copy the article and show your
MD if you want to try it. Maybe those that have used either of these
could leave some feedback on how effective it was for them.

http://www.emedicine.com/derm/topic597.htm
-------------------------------------------------------------------
Drug Category: Antibacterial agents

Bacteria have been implicated in the pathogenesis of bromhidrosis; the
organisms decompose apocrine secretions, liberating fatty acids that
have peculiar smells.

Drug Name Clindamycin (Cleocin, Clindagel)
Description Inhibits bacterial growth by binding to 50S ribosomal
subunit and blocking dissociation of peptidyl t-RNA from ribosomes,
arresting RNA-dependent protein synthesis.
Adult Dose Apply to affected area once or twice daily for 4-6 weeks.
Pediatric Dose Administer as in adults.
Contraindications Documented hypersensitivity, history of
pseudomembranous colitis
Interactions Concomitant topical acne therapy may have cumulative
irritant effect; antagonism has occurred when coadministered with
erythromycin.
Pregnancy B - Usually safe but benefits must outweigh the risks.

Precautions Drying and irritation are common adverse effects; bloody
diarrhea and pseudomembranous colitis reported (rare); prolonged use
may cause overgrowth of nonsusceptible organisms

Drug Name Erythromycin (Erythro-Statin 2%, Akne-mycin, Theramycin Z)
Description Macrolide antimicrobial that inhibits bacterial growth by
binding reversibly to 50S ribosomal subunit and blocking dissociation
of peptidyl t-RNA from ribosomes, arresting RNA-dependent protein
synthesis. Use 2-4% solution.
Adult Dose Apply to affected area twice daily for 4-6 wk.
Pediatric Dose Administer as in adults.
Contraindications Documented hypersensitivity
Interactions Concomitant topical acne therapy may have cumulative
irritant effect; antagonism has occurred when coadministered with
clindamycin.
Pregnancy B - Usually safe but benefits must outweigh the risks.

Precautions Discontinue if irritation or sensitivity occurs.

Hello,

This email message is a notification to let you know that
a file has been uploaded to the Files area of the Trimethylaminuria
group.

   File        : /* Introduction to this site /Bromhidrosis 2007.doc
   Uploaded by : tmau_files <tmau_files@...>
   Description : Eccrine glands vs apocrine gland secretion

You can access this file at the URL:
http://groups.yahoo.com/group/Trimethylaminuria/files/%2A%20Introduction%20to%20\
this%20site%20/Bromhidrosis%202007.doc

To learn more about file sharing for your group, please visit:
http://help.yahoo.com/l/us/yahoo/groups/original/members/web/index.htmlfiles

Regards,

tmau_files <tmau_files@...>

Hi, I'm new and I'm at the public library, where the deadline is
strict.

Sorry if this is short.

Has anyone ever heard about coconut oil? I got some in the mail, and I
think it helped a lot. It's not me, but a famly member who may have
the TMAU.

Hi Maggie,

One thing I can smell is my urine after I have had even a small am't
of seafood. It takes 24-36 hours to reach it. Then it is just my
bathroom when I leave the house and come back where I can smell it.

Maggie, since it is only your breath will you be able to detect a
change? Recently I talked with two people who both can smell their
odor by gently rubbing the crease in the back of your ear to the ear
lobe. This has always been a way for me to tell but I never knew of
anyone else that did. Smell your fingers before you try it in case
they have an odor of their own. Also the odor changes once it hits
the air so do it rather quickly.

This was discovered on a conferece call between two of us with long
term diagnosed TMAU plus a non diagnosed person. I was surprised and
wonder if this is common for us? I won't disclose this other TMAU
source but trust me that she is very reliable and runs a support
group. Try it over a period of time and see if it corresponds to
your diet changes. Anyone else notice this?



--- In Trimethylaminuria@yahoogroups.com, "maggie" <maggs141@...>
wrote:
>
> Hi Sharon
> Thanks for replying. Yes, Dr Gillett definitely said Cod Liver
Oil.
>
> I used to take cod liver oil many years ago and my hair skin and
> nails had never looked better and I felt greatbut as far as the
> memory is concerned I'm not sure if it helped mine or not.  I
stopped
> taking it when I was diagnosed with tmau but to be honest me not
> taking it didn't make a lot of difference to the odour so maybe it
is
> true what Dr Gilett and the USA researcher are saying.
>
> He did stress that if I was on a low choine diet then he strongly
> advises me to take it again-so I'm going to give it a try and see
> what happens. I will let you know if I see any huge change in
odour.
>
> maggie+
>
>
>
> --- In Trimethylaminuria@yahoogroups.com, "sharnsk" <sharnsk@>
> wrote:
> >
> > Hi Maggie,
> >
> > This is intersting. Did he say Cod Liver Oil or another form? I
ask
> > because another researcher in the US told someone that taking
Cod
> Oil
> > was ok because it was esterified and should not cause an odor!!
I
> don't
> > know if they tried it.
> >
> > It is to boost your omega3. Usually we use olive oil, flax seed
and
> a
> > few other things but they really don't provide the amount of Cod
> Liver
> > Oil.
> >
> > Are you going to try it? I wonder if this is something they plan
on
> > discussing at the next International Conference? You go first
and
> let
> > us know:)) It is suppose to be good for the memory, hair, nails,
> skin
> > and more.
> >
> > Sharon+
> >
> >
> >
> > --- In Trimethylaminuria@yahoogroups.com, "maggie" <maggs141@>
> wrote:
> > >
> > > Hi
> > > I'm really confused!!
> > > I had my yearly visit today with Dr Gillett at Sheffield - who
> looks
> > > after tmau patients after they have tested positive. Because
of
> my
> > > illness this year the diet and supplement went out the window
so
> > there
> > > wasn't much to report, so Dr Gillett advised me to go back on
the
> > diet
> > > and get back into the swing of things again. He also told me
that
> I
> > > should be taking cod liver oil capsules especially with being
on
> a
> > low
> > > choline diet. I thought that cod liver oil caps were a
definite
> no no
> > > for ppl with tmau. Can anyone throw some light on this one for
me?
> > >
> > > Maggie
> > >
> >
>

Hi Sharon
Thanks for replying. Yes, Dr Gillett definitely said Cod Liver Oil.

I used to take cod liver oil many years ago and my hair skin and
nails had never looked better and I felt greatbut as far as the
memory is concerned I'm not sure if it helped mine or not.  I stopped
taking it when I was diagnosed with tmau but to be honest me not
taking it didn't make a lot of difference to the odour so maybe it is
true what Dr Gilett and the USA researcher are saying.

He did stress that if I was on a low choine diet then he strongly
advises me to take it again-so I'm going to give it a try and see
what happens. I will let you know if I see any huge change in odour.

maggie+



--- In Trimethylaminuria@yahoogroups.com, "sharnsk" <sharnsk@...>
wrote:
>
> Hi Maggie,
>
> This is intersting. Did he say Cod Liver Oil or another form? I ask
> because another researcher in the US told someone that taking Cod
Oil
> was ok because it was esterified and should not cause an odor!! I
don't
> know if they tried it.
>
> It is to boost your omega3. Usually we use olive oil, flax seed and
a
> few other things but they really don't provide the amount of Cod
Liver
> Oil.
>
> Are you going to try it? I wonder if this is something they plan on
> discussing at the next International Conference? You go first and
let
> us know:)) It is suppose to be good for the memory, hair, nails,
skin
> and more.
>
> Sharon+
>
>
>
> --- In Trimethylaminuria@yahoogroups.com, "maggie" <maggs141@>
wrote:
> >
> > Hi
> > I'm really confused!!
> > I had my yearly visit today with Dr Gillett at Sheffield - who
looks
> > after tmau patients after they have tested positive. Because of
my
> > illness this year the diet and supplement went out the window so
> there
> > wasn't much to report, so Dr Gillett advised me to go back on the
> diet
> > and get back into the swing of things again. He also told me that
I
> > should be taking cod liver oil capsules especially with being on
a
> low
> > choline diet. I thought that cod liver oil caps were a definite
no no
> > for ppl with tmau. Can anyone throw some light on this one for me?
> >
> > Maggie
> >
>

Hi Maggie,

This is intersting. Did he say Cod Liver Oil or another form? I ask
because another researcher in the US told someone that taking Cod Oil
was ok because it was esterified and should not cause an odor!! I don't
know if they tried it.

It is to boost your omega3. Usually we use olive oil, flax seed and a
few other things but they really don't provide the amount of Cod Liver
Oil.

Are you going to try it? I wonder if this is something they plan on
discussing at the next International Conference? You go first and let
us know:)) It is suppose to be good for the memory, hair, nails, skin
and more.

Sharon+



--- In Trimethylaminuria@yahoogroups.com, "maggie" <maggs141@...> wrote:
>
> Hi
> I'm really confused!!
> I had my yearly visit today with Dr Gillett at Sheffield - who looks
> after tmau patients after they have tested positive. Because of my
> illness this year the diet and supplement went out the window so
there
> wasn't much to report, so Dr Gillett advised me to go back on the
diet
> and get back into the swing of things again. He also told me that I
> should be taking cod liver oil capsules especially with being on a
low
> choline diet. I thought that cod liver oil caps were a definite no no
> for ppl with tmau. Can anyone throw some light on this one for me?
>
> Maggie
>

Hi
I'm really confused!!
I had my yearly visit today with Dr Gillett at Sheffield - who looks
after tmau patients after they have tested positive. Because of my
illness this year the diet and supplement went out the window so there
wasn't much to report, so Dr Gillett advised me to go back on the diet
and get back into the swing of things again. He also told me that I
should be taking cod liver oil capsules especially with being on a low
choline diet. I thought that cod liver oil caps were a definite no no
for ppl with tmau. Can anyone throw some light on this one for me?

Maggie

Great news,

TMAU testing will resume at the Univ. of Colorado Health Sciences
Center in Mid-October. Two new techs have been hired and are in
training. Their contact information and other logistics will be
updated as soon as available.

Expecting that they are first taking care of all the specimens that
they have on hold, then open the lab and start testing new clients
again.

So for those who have a urine there waiting to be tested best wishes
and let us know how when they start contacting you,

Sharon+

Hello everyone,

One of the attendees of our Thames Festival 2008 Meet-up was gracious
enough to translate from German into English Dr. Detlef Werner's
paper, "Die Trimethylaminurie (Fischgeruchsyndrom) – Hinweise auf Ein
neue Therapiemöglichkeit mit Desmopressin - Trimethylaminuria (fish-
odour syndrome): Hints for a New Therapeutic Option with
Desmopressin ", which he authorized that we use for the blog to promote
research.

You are welcomed to read it in my blog at,
http://mpdela.blogspot.com/2008/09/tmau-hints-for-new-therapeutic-
option.html

María

Hi Vanita,

Yes I would appreciate it very much if you did add my blog address to the newsletter :))  You can also add my name, María, and that I'm based in Miami, FL, USA, if you like to refer to me at any time.  It's also OK if you don't.  I would just prefer not to use my last name.  If you should want to use any of the pictures I have in the blog, that would be fine too. 

If ever there is anything at all you would like us to post in our blog to promote the TMAU Foundation, or any activity you might be organizing in the UK or elsewhere globally, please let me know, and I'll be happy to post it in my blog, including telling sufferers to contact you or any designee you would like.  You can just send it to me via email, and I'll be happy to post it for you too.  Also, if you see any picture you like in my blog that you would like to use in your newsletter, let me know, and I'll try to email it to you so that you can use it.

Actually, the goal of the blog is to unite all sufferers, whether from the various forums, the TMAU Foundation, or any other association that strives to help sufferers.  With this in mind, it would be very beneficial if you would also direct sufferers to my blog to promote unity.

It was so nice meeting you, Vanita.  You are a very special young lady and I found you to be very interesting - a doer who can get things done, and yet so sensitive and humane, a very beautiful combination :)  Please do feel free to contact me any time, and I'll be happy to support whatever endeavor you may be working on. 

María 

p.s. I check my mpdela1@... email address more frequently than this one, so if you would send me all future emails to that one, I would appreciate it.  Thanks.

-----Original Message-----
From: V B
Sent: Sep 21, 2008 4:40 PM
To: Trimethylaminuria@yahoogroups.com
Subject: Re: [Trimethylaminuria] A tribute to my British friends - Thank you!

Hi Maria,

 

Are you ok with me adding your blog address to the newsletter in the article updating everyone on the UK meet up?  Not sure if it's for members only?

 

Hope you've settled back in MIami.  Thanks for doing such a brilliant job adding us to your blog.   

Vanita

 

----- Original Message ----
From: Maria de la Torre <delata@peoplepc.com>
To: Trimethylaminuria@yahoogroups.com
Sent: Thursday, 18 September, 2008 17:20:31
Subject: [Trimethylaminuria] A tribute to my British friends - Thank you!

Hello everyone,

You are all invited to see my picture slideshow of my first day in
London - a tribute to all my British friends who so graciously took me
in. Thank you for inviting me to your country and for this memorable
experience that I hold close to my heart!

http://mpdela. blogspot. com/2008/ 09/here-i- am-in-london. html

María

________________________________________
PeoplePC Online
A better way to Internet
http://www.peoplepc.com

Hi Sharon
here is the link.
http://health.groups.yahoo.com/group/BreathHelp4U2

Sorry I missed the '2' off the end. The reason it has a 2 on the end
is because the original group got deleted and the new group got the
same name wth a 2 stuck on the end :-)
maggie+





-- In Trimethylaminuria@yahoogroups.com, "sharnsk" <sharnsk@...>
wrote:
>
> Maggie,
>
> I can't find the site, breathhelp4u. Can you give us a link. Thanks,
>
> Sharon+
>
> --- In Trimethylaminuria@yahoogroups.com, "maggie" <maggs141@>
> wrote:
> >
> > Leenaclue
> > You should talk to Susie on the breathhelp4u group. She is an
> expert
> > on root fillings and thinks her odor problem stems from having a
> few.
> > maggie
> >
> >
> >
> >
> > --- In Trimethylaminuria@yahoogroups.com, "leenaclue"
<leenaclue@>
> > wrote:
> > >
> > > I've told my story before but I just need to vent right now.  I
> no
> > > longer think I have TMAU (with just the BB factor not the body
> > > odor).  Everyone told me to try the diet for 3 months before
> seeing
> > > results.  I thought I saw results right away with my BB but the
> > > longer I stayed away from foods high in choline the worse
things
> > seem
> > > to have gotten with my odor.  But that's the story of my life-
> once
> > I
> > > try something new my perception is that it is working until I
> > realize
> > > that it's just another let down, so here I go again.
> > > Since June 15th I have been on the diet, cholophyll and
> > probiotics.
> > > I used charcol for 5 days in the beginning.  Things seemed
worse
> > > around 6-7 weeks so I stopped the chorophyll and continued with
> the
> > > diet and probiotics.  Currently I only eat chicken and turkey,
> > white
> > > rice and white bread and iceburg lettuce every other day and
> pasta
> > > once a week.  I've avoided ALL dairy and soy.  I figured I'd go
> > > drastic and really there is no improvement at 3 months of this
> > diet.
> > > Something has been bugging me -- a little pressure in my
gumline
> > > under my sinuses.  I always thought it was my sinuses but I
> > > discovered that it is definitely my gums in that one area.
I've
> > had
> > > this a while (years?) I had a root canal when I was a teenager
> > there
> > > (30 years ago).  I'm on an antibiotic as of today and I am
going
> to
> > > see if that helps if not then surgery is the next step to clean
> > > things out.  I hope this isn't some false hope again.  I really
> > don't
> > > think I've had decay for 30 years (as long as I've had bb) and
> now
> > I
> > > am feeling pain so I know it's back to the drawing board after
> the
> > > surgery and the bb is still there.
> > > Thanks for letting me vent here.
> > >
> >
>

http://groups.msn.com/bodyodorsupport/successstories.msnw?
action=get_message&mview=0&ID_Message=20968&LastModified=4675686983756
010626


I am trying it, I had a little luck when I first started it, but I am
not sure if it was the juice or just staying away from foods, I was
only eatting veggies & rye flat bread @ the time <starving, by the
way> <but now I added turkey>

here is his story;

From: Jacks628  (Original Message) Sent: 8/22/2008 7:59 PM
Hey everyone!  I remember reading a post about lemon being helpful so
I figured I would give it a try.  I have been drinking lemon juice
for the past week.  I drink it usually twice a day, sometimes once a
day.  I think it's working but I'm not quite sure.

I don't smell everyday so I may have had an excellent week, but I
really think it's working.  Usually I will start to smell myself if
I'm hot and the other day that did not happen.  I had went to work
and then after leaving work I went straight to the doctors office
(about this problem).  The doctors waiting room was hot as hell
whereas people started complaining about the temperature.  I sat
there in a full doctors office in the heat for an hour without
sniffles, rubbing of the nose, and other gestures.  I was shocked
because I hadn't washed for at least 10 hours and I was odor free.  I
really think the lemon juice is working and maybe the more I drink,
the more effective it will become  (maybe pretty soon I'll be able to
go 15 hours without odor).  Give it a try, lemon is really
inexpensive!  I will keep everyone informed.

Also I'm 95% odor free right now and I haven't washed in . . . about
12 1/2 hours!  Alright, I'm going to go wash up now.

God Bless and good luck




--- In Trimethylaminuria@yahoogroups.com, "maggie" <maggs141@...>
wrote:
>
> Leenaclue
> You should talk to Susie on the breathhelp4u group. She is an
expert
> on root fillings and thinks her odor problem stems from having a
few.
> maggie
>
>
>
>
> --- In Trimethylaminuria@yahoogroups.com, "leenaclue" <leenaclue@>
> wrote:
> >
> > I've told my story before but I just need to vent right now.  I
no
> > longer think I have TMAU (with just the BB factor not the body
> > odor).  Everyone told me to try the diet for 3 months before
seeing
> > results.  I thought I saw results right away with my BB but the
> > longer I stayed away from foods high in choline the worse things
> seem
> > to have gotten with my odor.  But that's the story of my life-
once
> I
> > try something new my perception is that it is working until I
> realize
> > that it's just another let down, so here I go again.
> > Since June 15th I have been on the diet, cholophyll and
> probiotics.
> > I used charcol for 5 days in the beginning.  Things seemed worse
> > around 6-7 weeks so I stopped the chorophyll and continued with
the
> > diet and probiotics.  Currently I only eat chicken and turkey,
> white
> > rice and white bread and iceburg lettuce every other day and
pasta
> > once a week.  I've avoided ALL dairy and soy.  I figured I'd go
> > drastic and really there is no improvement at 3 months of this
> diet.
> > Something has been bugging me -- a little pressure in my gumline
> > under my sinuses.  I always thought it was my sinuses but I
> > discovered that it is definitely my gums in that one area.  I've
> had
> > this a while (years?) I had a root canal when I was a teenager
> there
> > (30 years ago).  I'm on an antibiotic as of today and I am going
to
> > see if that helps if not then surgery is the next step to clean
> > things out.  I hope this isn't some false hope again.  I really
> don't
> > think I've had decay for 30 years (as long as I've had bb) and
now
> I
> > am feeling pain so I know it's back to the drawing board after
the
> > surgery and the bb is still there.
> > Thanks for letting me vent here.
> >
>

Hello everyone,

I was finally able to put up Arun's intro video to the Thames Festival
Meet-up - had technical difficulties.
http://mpdela.blogspot.com/2008/09/aruns-intro-video-to-thames-
festival.html

It's not every day we find a leader who leads with his mind and his
heart, as Arun does.  Thanks, Arun, we appreciate you!

For those who haven't filled out his scientific survey/questionnaire,
http://www.tmau.shareaflat.net/ please let's show our support for his
efforts to research and find a cure by participating.  This is only the
start of this endeavor; we won't give up with this quest until we have
real answers and real solutions.

María

Maggie,

I can't find the site, breathhelp4u. Can you give us a link. Thanks,

Sharon+

--- In Trimethylaminuria@yahoogroups.com, "maggie" <maggs141@...>
wrote:
>
> Leenaclue
> You should talk to Susie on the breathhelp4u group. She is an
expert
> on root fillings and thinks her odor problem stems from having a
few.
> maggie
>
>
>
>
> --- In Trimethylaminuria@yahoogroups.com, "leenaclue" <leenaclue@>
> wrote:
> >
> > I've told my story before but I just need to vent right now.  I
no
> > longer think I have TMAU (with just the BB factor not the body
> > odor).  Everyone told me to try the diet for 3 months before
seeing
> > results.  I thought I saw results right away with my BB but the
> > longer I stayed away from foods high in choline the worse things
> seem
> > to have gotten with my odor.  But that's the story of my life-
once
> I
> > try something new my perception is that it is working until I
> realize
> > that it's just another let down, so here I go again.
> > Since June 15th I have been on the diet, cholophyll and
> probiotics.
> > I used charcol for 5 days in the beginning.  Things seemed worse
> > around 6-7 weeks so I stopped the chorophyll and continued with
the
> > diet and probiotics.  Currently I only eat chicken and turkey,
> white
> > rice and white bread and iceburg lettuce every other day and
pasta
> > once a week.  I've avoided ALL dairy and soy.  I figured I'd go
> > drastic and really there is no improvement at 3 months of this
> diet.
> > Something has been bugging me -- a little pressure in my gumline
> > under my sinuses.  I always thought it was my sinuses but I
> > discovered that it is definitely my gums in that one area.  I've
> had
> > this a while (years?) I had a root canal when I was a teenager
> there
> > (30 years ago).  I'm on an antibiotic as of today and I am going
to
> > see if that helps if not then surgery is the next step to clean
> > things out.  I hope this isn't some false hope again.  I really
> don't
> > think I've had decay for 30 years (as long as I've had bb) and
now
> I
> > am feeling pain so I know it's back to the drawing board after
the
> > surgery and the bb is still there.
> > Thanks for letting me vent here.
> >
>

thanks maggie i will do this


--- In Trimethylaminuria@yahoogroups.com, "maggie" <maggs141@...>
wrote:
>
> Leenaclue
> You should talk to Susie on the breathhelp4u group. She is an
expert
> on root fillings and thinks her odor problem stems from having a
few.
> maggie
>
>
>
>
> --- In Trimethylaminuria@yahoogroups.com, "leenaclue" <leenaclue@>
> wrote:
> >
> > I've told my story before but I just need to vent right now.  I
no
> > longer think I have TMAU (with just the BB factor not the body
> > odor).  Everyone told me to try the diet for 3 months before
seeing
> > results.  I thought I saw results right away with my BB but the
> > longer I stayed away from foods high in choline the worse things
> seem
> > to have gotten with my odor.  But that's the story of my life-
once
> I
> > try something new my perception is that it is working until I
> realize
> > that it's just another let down, so here I go again.
> > Since June 15th I have been on the diet, cholophyll and
> probiotics.
> > I used charcol for 5 days in the beginning.  Things seemed worse
> > around 6-7 weeks so I stopped the chorophyll and continued with
the
> > diet and probiotics.  Currently I only eat chicken and turkey,
> white
> > rice and white bread and iceburg lettuce every other day and
pasta
> > once a week.  I've avoided ALL dairy and soy.  I figured I'd go
> > drastic and really there is no improvement at 3 months of this
> diet.
> > Something has been bugging me -- a little pressure in my gumline
> > under my sinuses.  I always thought it was my sinuses but I
> > discovered that it is definitely my gums in that one area.  I've
> had
> > this a while (years?) I had a root canal when I was a teenager
> there
> > (30 years ago).  I'm on an antibiotic as of today and I am going
to
> > see if that helps if not then surgery is the next step to clean
> > things out.  I hope this isn't some false hope again.  I really
> don't
> > think I've had decay for 30 years (as long as I've had bb) and
now
> I
> > am feeling pain so I know it's back to the drawing board after
the
> > surgery and the bb is still there.
> > Thanks for letting me vent here.
> >
>

Leenaclue
You should talk to Susie on the breathhelp4u group. She is an expert
on root fillings and thinks her odor problem stems from having a few.
maggie




--- In Trimethylaminuria@yahoogroups.com, "leenaclue" <leenaclue@...>
wrote:
>
> I've told my story before but I just need to vent right now.  I no
> longer think I have TMAU (with just the BB factor not the body
> odor).  Everyone told me to try the diet for 3 months before seeing
> results.  I thought I saw results right away with my BB but the
> longer I stayed away from foods high in choline the worse things
seem
> to have gotten with my odor.  But that's the story of my life- once
I
> try something new my perception is that it is working until I
realize
> that it's just another let down, so here I go again.
> Since June 15th I have been on the diet, cholophyll and
probiotics.
> I used charcol for 5 days in the beginning.  Things seemed worse
> around 6-7 weeks so I stopped the chorophyll and continued with the
> diet and probiotics.  Currently I only eat chicken and turkey,
white
> rice and white bread and iceburg lettuce every other day and pasta
> once a week.  I've avoided ALL dairy and soy.  I figured I'd go
> drastic and really there is no improvement at 3 months of this
diet.
> Something has been bugging me -- a little pressure in my gumline
> under my sinuses.  I always thought it was my sinuses but I
> discovered that it is definitely my gums in that one area.  I've
had
> this a while (years?) I had a root canal when I was a teenager
there
> (30 years ago).  I'm on an antibiotic as of today and I am going to
> see if that helps if not then surgery is the next step to clean
> things out.  I hope this isn't some false hope again.  I really
don't
> think I've had decay for 30 years (as long as I've had bb) and now
I
> am feeling pain so I know it's back to the drawing board after the
> surgery and the bb is still there.
> Thanks for letting me vent here.
>

Hi Sharon
I will hold you to that. I have a spare room your welcome to use :-)





--- In Trimethylaminuria@yahoogroups.com, "sharnsk" <sharnsk@...>
wrote:
>
> You all sound like you had such a great time? Arun maybe you are in
the
> wrong line of work. How about a travel planner??
>
> None of you could smell anything from each other? Wow,and imagine
> people sitting there overhearing your conversations. It makes me
laugh
> really because I think everyone has a phobia that they may have an
> odor. With all the TV commercials who couldn't but to actually meet
and
> hear people be so open about it. Awesome! Like an AA meeting but
you
> could call it OA?
>
> Maggie, glad to see you could get away and made it. Some day we
shall
> meet,
> Sharon+
>
>
> --- In Trimethylaminuria@yahoogroups.com, "Arun Nagrath"
> <arunnagrath@> wrote:
> >
> > Hi Maggs, Vanita, Jan,
> > I am so pleased you had a great time. I believe these events
should
> be
> > 80% fun events and 20% chats about what works etc.
> >
> > In this way, we can relax around each other and not feel self-
> > conscious. Maggs, I like your line 'It was great doing fun things
and
> > feeling like a normal person'.
> >
> > Many people still find it strange that we can usually not detect
each
> > others odours. Let us use this to it's advantage and make some
new
> > friends.
> > Arun
> >
>

I've told my story before but I just need to vent right now.  I no
longer think I have TMAU (with just the BB factor not the body
odor).  Everyone told me to try the diet for 3 months before seeing
results.  I thought I saw results right away with my BB but the
longer I stayed away from foods high in choline the worse things seem
to have gotten with my odor.  But that's the story of my life- once I
try something new my perception is that it is working until I realize
that it's just another let down, so here I go again.
Since June 15th I have been on the diet, cholophyll and probiotics.
I used charcol for 5 days in the beginning.  Things seemed worse
around 6-7 weeks so I stopped the chorophyll and continued with the
diet and probiotics.  Currently I only eat chicken and turkey, white
rice and white bread and iceburg lettuce every other day and pasta
once a week.  I've avoided ALL dairy and soy.  I figured I'd go
drastic and really there is no improvement at 3 months of this diet.
Something has been bugging me -- a little pressure in my gumline
under my sinuses.  I always thought it was my sinuses but I
discovered that it is definitely my gums in that one area.  I've had
this a while (years?) I had a root canal when I was a teenager there
(30 years ago).  I'm on an antibiotic as of today and I am going to
see if that helps if not then surgery is the next step to clean
things out.  I hope this isn't some false hope again.  I really don't
think I've had decay for 30 years (as long as I've had bb) and now I
am feeling pain so I know it's back to the drawing board after the
surgery and the bb is still there.
Thanks for letting me vent here.

It's truly amazing the support in this group!

Hello everyone,

You are all invited to see my picture slideshow of my first day in
London - a tribute to all my British friends who so graciously took me
in.  Thank you for inviting me to your country and for this memorable
experience that I hold close to my heart!

http://mpdela.blogspot.com/2008/09/here-i-am-in-london.html

María

Hi Sharon,

I would love to interview you for our blog someday.  Perhaps you can
provide some the info you mention below that would be OK to post in
the blog - something that you can say has worked for you, for
example.

I'm still recovering physically and emotionally from my wonderful
trip.  I knew that this trip would be very trying for my health, but
I would not have missed it for the world.  Not even hurricane IKE was
going to get in my way, hehe.  There are still many more posts I want
to do regarding the outcome of this festival, including the English
translation of of Dr. Werner's paper on desmopressin.  We're doing
the final translation touches to it, and it should be up in my blog
soon.

I'll try to call you sometime next week once I regain my strength.  I
just seem to be sleeping alot these days as i try to walk better
again.

I'm glad you found the humor in the language dynamics with the 2
young, rude girls.  It really served its purpose too, hehe. :)

Talk to you later.

María

--- In Trimethylaminuria@yahoogroups.com, "sharnsk" <sharnsk@...>
wrote:
>
> Hey Maria,
>
> Hope you have recovered from the trip? I think the paper you sited
> by Phillips and Shephard is one of the best and newest so far. The
> full version is in the files under diet. Below it is our homemade
> beginners diet based on "Diets for Use in Clinical Research and for
> the Management of Trimethylaminuria" by S Zeisel. Combine those two
> and that is where to start. Everyone needs to fine tune it to find
> their own combination.
>
> Look forward to hearing more topics and seeing Aruns video :). I
> read your post on MSN about the girls sitting there speaking in
> Spanish not realizung you are an interpreter. That really cracked
me
> up and you handled it so well.
>
> Lets chat sometime soon,
> Sharon
>
>
> --- In Trimethylaminuria@yahoogroups.com, "Maria de la Torre"
> <delata@> wrote:
> >
> > Hi everyone,
> >
> > I have posted in my blog an odor-reducing management protocol
that
> we
> > discussed in the Thames Festival 2008 meet-up for your review
> > http://mpdela.blogspot.com/2008/09/odor-reducing-management-
> > protocol.html .
> >
> > This particular protocol addresses concerns such as dysbiosis,
> > microflora, nutrition, probiotics and prebiotics, skin pH,
> > supplements, and vitamins.
> >
> > I hope you enjoy this post.  There will be more forthcoming about
> > other topics we discussed in this meet-up.
> >
> >
> > All our thanks go to Arun for having organized this for us.  It
> had a
> > deep impact for us at various levels.  It felt great
> feeling 'normal'
> > without worrying about other's reactions to body odor.  We felt
> free
> > to be ourselves.  Thank you Arun for creating this environment
for
> > us. It would be great indeed if he would the official Meet-up
> > organizer for the group.
> >
> >
> > María
> >
>

Hey Maria,

Hope you have recovered from the trip? I think the paper you sited
by Phillips and Shephard is one of the best and newest so far. The
full version is in the files under diet. Below it is our homemade
beginners diet based on "Diets for Use in Clinical Research and for
the Management of Trimethylaminuria" by S Zeisel. Combine those two
and that is where to start. Everyone needs to fine tune it to find
their own combination.

Look forward to hearing more topics and seeing Aruns video :). I
read your post on MSN about the girls sitting there speaking in
Spanish not realizung you are an interpreter. That really cracked me
up and you handled it so well.

Lets chat sometime soon,
Sharon


--- In Trimethylaminuria@yahoogroups.com, "Maria de la Torre"
<delata@...> wrote:
>
> Hi everyone,
>
> I have posted in my blog an odor-reducing management protocol that
we
> discussed in the Thames Festival 2008 meet-up for your review
> http://mpdela.blogspot.com/2008/09/odor-reducing-management-
> protocol.html .
>
> This particular protocol addresses concerns such as dysbiosis,
> microflora, nutrition, probiotics and prebiotics, skin pH,
> supplements, and vitamins.
>
> I hope you enjoy this post.  There will be more forthcoming about
> other topics we discussed in this meet-up.
>
>
> All our thanks go to Arun for having organized this for us.  It
had a
> deep impact for us at various levels.  It felt great
feeling 'normal'
> without worrying about other's reactions to body odor.  We felt
free
> to be ourselves.  Thank you Arun for creating this environment for
> us. It would be great indeed if he would the official Meet-up
> organizer for the group.
>
>
> María
>

Hi everyone,

I have posted in my blog an odor-reducing management protocol that we
discussed in the Thames Festival 2008 meet-up for your review
http://mpdela.blogspot.com/2008/09/odor-reducing-management-
protocol.html .

This particular protocol addresses concerns such as dysbiosis,
microflora, nutrition, probiotics and prebiotics, skin pH,
supplements, and vitamins.

I hope you enjoy this post.  There will be more forthcoming about
other topics we discussed in this meet-up.


All our thanks go to Arun for having organized this for us.  It had a
deep impact for us at various levels.  It felt great feeling 'normal'
without worrying about other's reactions to body odor.  We felt free
to be ourselves.  Thank you Arun for creating this environment for
us. It would be great indeed if he would the official Meet-up
organizer for the group.


María

Hi Sharn,
Yes, maybe I could be the official Meetup organiser for our group?

Perhaps I could get all members to email me their leave entitlements
or their annual leave dates and we could organise meetups in various
parts of the world :)

Infact, when they log in to Outlook they would see from their
calender that they have to fly to London the following Friday to
rendez-vous with 8 or 10 other members to discuss their odour
management techniques! :)

We could have a team of travellers to exchange information between
Europe, America, Asia and even Australia.

With time, we could get our agents to take jobs on airlines, like
air-stewardesses, and have a tete-a-tete with members as they travel!

Well, we certainly chatted with each other quite openly about our
odours. Infact, I even got out some analytical equipment and blew
into some tubes that changed colour and passed them round our group,
much to the total bewilderment of the other diners at the hotel's
cafe.

I can only assume that they thought we were testing some kind of
breath alcohol detection device! :))
Arun