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#1768 From: Dee brown <delobrown11224@...>
Date: Fri May 1, 2009 8:19 pm
Subject: Re: Need to vent and an opinion 		delobrown11224
Offline Offline
Send Email Send Email
 
hello Kevin, Im from Brooklyn. clad to know that Im not alone here in this fast city.You said you went to a meeting here in New york can you please give me more info on that meeting and tell me where it was held  and will there be another?

DELO
I GIVE MYSELF ROSES

--- On Fri, 5/1/09, Kevin Claxton <stash_box83@...> wrote:

From: Kevin Claxton <stash_box83@...>
Subject: Re: [Trimethylaminuria] Need to vent and an opinion
To: Trimethylaminuria@yahoogroups.com
Date: Friday, May 1, 2009, 2:54 AM

im from the bronx i went to a meeting in new york a few monthes ago.people were ok but it was really sad for me i thought a room full of people who understand what im going through yet years of just shuting down and being anti-social i stared at a paper,said nothing and made litttle eye contact.People must have thought i was rude or a werido lol.but problem for me was nobody was really in my age group or even look like i can relate to unless it had something to do with tmau .it's really werid it's like you take a random group of people who are different in everyway possible who you would not  even have a reason to talk to and their is your TMAU group. i thought i was in the wrong place for a second,but everybody was really nice and the infomation i got was a big help.

From: Genene Grant <g.genene@yahoo. com>
To: Trimethylaminuria@ yahoogroups. com
Sent: Tuesday, April 28, 2009 7:19:28 PM
Subject: Re: [Trimethylaminuria] Need to vent and an opinion

there is a person or people in new york with our promblem i know its a tmau foundation in new york city i had the number got it from the monell center

From: Dee brown <delobrown11224@ yahoo.com>
To: Trimethylaminuria@ yahoogroups. com
Sent: Tuesday, April 28, 2009 2:19:58 PM
Subject: Re: [Trimethylaminuria] Need to vent and an opinion

sounds like me. I haven't heard from anyone in new york.so Im asking again is there anyone in new york with this problem also?.

DELO
I GIVE MYSELF ROSES

--- On Mon, 4/27/09, Genene Grant <g.genene@yahoo. com> wrote:

From: Genene Grant <g.genene@yahoo. com>
Subject: Re: [Trimethylaminuria] Need to vent and an opinion
To: Trimethylaminuria@ yahoogroups. com
Date: Monday, April 27, 2009, 7:09 AM

did you find anyone who live near you, im in cleveland ohio, i have not found anyone who stay near me

From: Katrina Jackson <jacksonhodge@ yahoo.com>
To: Trimethylaminuria@ yahoogroups. com
Sent: Sunday, April 26, 2009 3:50:15 PM
Subject: Re: [Trimethylaminuria] Need to vent and an opinion

I live in the Washington, DC metropolitan area "DMV"

--- On Sun, 4/26/09, Genene Grant <g.genene@yahoo. com> wrote:

From: Genene Grant <g.genene@yahoo. com>
Subject: Re: [Trimethylaminuria] Need to vent and an opinion
To: Trimethylaminuria@ yahoogroups. com
Date: Sunday, April 26, 2009, 6:09 PM

your so strong and i hope they stop for their sake, this condition is really bad for us ,i wish they come up with a pill or something this does hurt where do you live

From: theresa hoskins-ford <thosford43@sbcgloba l..net>
To: Trimethylaminuria@ yahoogroups. com
Sent: Saturday, April 25, 2009 3:59:04 PM
Subject: Re: [Trimethylaminuria] Need to vent and an opinion

Hi Jacksonhodge,
 
I'm going through a situation at my job where i believe someone is actually spraying something around my workspace to make it smell all the time.  I always have fbb and it gets really bad every three months or so.  My workspace smells really bad then (I assume I can't smell it).  So anyway, whatever this is I can smell it, so I know it not me!!!  I believe this person is doing this to get me moved away from her office.  The funny part is I work with attorneys, she is not one, the people on my "team" don't bother me too much.  Other than the usual sniffing or coughing and comments behind my back, they don't even talk to me unless they have too.  Which for the most part is okay with me. 
 
I plan to document everything from this point on.  I will start getting copies of all my medical and therapy records together just to have them on hand.  I plan on consulting with an attorney first thing Monday just to get an understanding as to what my options are.  And like you I will be talking to my union also. 
 
I believe my "team" does not bother me because they know me well enough to know that I will sue their a** and the city and not think twice about it. 
 
I have a problem that I have no control over, talking about me behind my back is one thing (sure it hurts sometimes), but when you think it's okay to start doing things like spraying something that smells almost like skunk in my workspace... that's completely different. 
 
It will be interesting to see what my space smells like on Monday, as I was very outspoken about what i believed was going on and who did it..  I'm not taking this.  You don't have to like me, but you will respect me.
 
I'll keep you posted!!  Hang in there.
 
Theresa
 
 
 
 
 


--- On Fri, 4/24/09, jacksonhodge <jacksonhodge@ yahoo..com> wrote:
From: jacksonhodge <jacksonhodge@ yahoo.com>
Subject: [Trimethylaminuria] Need to vent and an opinion
To: Trimethylaminuria@ yahoogroups. com
Date: Friday, April 24, 2009, 5:11 PM



Hi All

I tried to post earlier today when I was so frustrated about an incident that happened. While I was writing my post and just about finished I tried to read over it and make some corrections and somehow deleted the post.

First of all I've been a member of this group and the body odor group on msn groups for awhile. I have not post on this group but I read the post especially when I'm down.

I work for the public school system for 21 years. The last elementary school I worked at for 8 years (as the administrative assistant) is when I discovered I had this odor condition.

Due to budget cuts and school closings that school closed. Of course I would see the occasional frowns or the quick wipe of the nose but they respect me and would still include me and talked to me. They also knew how dependable and hard working I am.

The beginning of this school year I was placed at an Elementary School that was in transition meaning all the staff was replaced with new staff because the school didn't meet any of its targets. Test scores were down, the attendance was down etc. and we have three years for improvements.

Anyway, when I started the school I was introduced to the other office worker as the administrative assistant (public relation) an in-house position. I was told that she was a friend of the principal/superviso r and she was a substitute at another school. I was also told that I would be the main person in the office and that she had no experience, and she is to deal with the public and to help her in any way that I could.

The following week I decided to go to the supervisor and the "Public Relation person "and tell them about my condition and that I was working on it but some days it might be unbearable.

Later, I tried to give her small assignments to help out the office and me really but she would never complete them. She would answer the phones when she felt like it. Leave the office when she didn't want to deal with visitors, parents or students and I would just pick up where she left off because
1). I have a daughter in college and I need to work
2). I'm afraid that at any time I might be out of my job because of my condition.

During the year I notice that she is the ears and eyes for the supervisor and is part responsible for the school nurse being involuntary transferred to another school. She is also partly responsible for the constant gossip around the school.

Two week ago, I don't know exactly what happened but I do know she came in the office very upset and when I asked her what happened she was very abrupt and harsh with me. She then filled out a leave slip and left the job. I was stunned and a little embarrassed because this was done in front of others (teachers and office staff).

I later decided that I would just be cordial with this person and that was it.
The following Monday morning I speak and go on with my routine of preparing the office for the morning. The whole day the office is quiet as a matter of fact the whole week the office is quiet.

This week I noticed a lot of little childish games being played. Like instead of telling me I have a phone call she is transferring the calls to my phone. (our desks are two foot steps away). Purposely putting people on hold that ask for me and not telling me. Putting her assignments on my desk..

And a lot of whispering and laughing out loud with other co-workers about how HOT it is in here, I went to the supervisor and he said we need to have a meeting but we have not had one yet.

I'm sorry that this is so long but this is what had me so frustrated.

Today I take off from work to pick my daughter up from college (summer break) and I get a call from work.

I was told that they need to get into some files that I maintain and the files were locked. I told them that I had the keys and didn't understand what the urgency was that it can't wait until Monday.

Later the principal/superviso r calls me and says he needs the files opened and I know for a fact that this woman had something to do with this.
I'm about to get on the road. It takes 5 hours to get my daughter and I had planned to beat the traffic coming back. I take the keys to work an hour out of my way and on the way back I call my union rep. because I believe I need to have my odor condition documented and I fell like I'm the next target.

Please advise? Are these feelings valid? Am I making too much of this?

I'm sorry for the long post
Thanks for listening.









Reply | Forward | Messages in this Topic (17)
#1767 From: Kevin Claxton <stash_box83@...>
Date: Fri May 1, 2009 6:54 am
Subject: Re: Need to vent and an opinion 		stash_box83
Offline Offline
Send Email Send Email
 
im from the bronx i went to a meeting in new york a few monthes ago.people were ok but it was really sad for me i thought a room full of people who understand what im going through yet years of just shuting down and being anti-social i stared at a paper,said nothing and made litttle eye contact.People must have thought i was rude or a werido lol.but problem for me was nobody was really in my age group or even look like i can relate to unless it had something to do with tmau .it's really werid it's like you take a random group of people who are different in everyway possible who you would not  even have a reason to talk to and their is your TMAU group. i thought i was in the wrong place for a second,but everybody was really nice and the infomation i got was a big help.

From: Genene Grant <g.genene@...>
To: Trimethylaminuria@yahoogroups.com
Sent: Tuesday, April 28, 2009 7:19:28 PM
Subject: Re: [Trimethylaminuria] Need to vent and an opinion

there is a person or people in new york with our promblem i know its a tmau foundation in new york city i had the number got it from the monell center

From: Dee brown <delobrown11224@ yahoo.com>
To: Trimethylaminuria@ yahoogroups. com
Sent: Tuesday, April 28, 2009 2:19:58 PM
Subject: Re: [Trimethylaminuria] Need to vent and an opinion

sounds like me. I haven't heard from anyone in new york.so Im asking again is there anyone in new york with this problem also?.

DELO
I GIVE MYSELF ROSES

--- On Mon, 4/27/09, Genene Grant <g.genene@yahoo. com> wrote:

From: Genene Grant <g.genene@yahoo. com>
Subject: Re: [Trimethylaminuria] Need to vent and an opinion
To: Trimethylaminuria@ yahoogroups. com
Date: Monday, April 27, 2009, 7:09 AM

did you find anyone who live near you, im in cleveland ohio, i have not found anyone who stay near me

From: Katrina Jackson <jacksonhodge@ yahoo.com>
To: Trimethylaminuria@ yahoogroups. com
Sent: Sunday, April 26, 2009 3:50:15 PM
Subject: Re: [Trimethylaminuria] Need to vent and an opinion

I live in the Washington, DC metropolitan area "DMV"

--- On Sun, 4/26/09, Genene Grant <g.genene@yahoo. com> wrote:

From: Genene Grant <g.genene@yahoo. com>
Subject: Re: [Trimethylaminuria] Need to vent and an opinion
To: Trimethylaminuria@ yahoogroups. com
Date: Sunday, April 26, 2009, 6:09 PM

your so strong and i hope they stop for their sake, this condition is really bad for us ,i wish they come up with a pill or something this does hurt where do you live

From: theresa hoskins-ford <thosford43@sbcgloba l..net>
To: Trimethylaminuria@ yahoogroups. com
Sent: Saturday, April 25, 2009 3:59:04 PM
Subject: Re: [Trimethylaminuria] Need to vent and an opinion

Hi Jacksonhodge,
 
I'm going through a situation at my job where i believe someone is actually spraying something around my workspace to make it smell all the time.  I always have fbb and it gets really bad every three months or so.  My workspace smells really bad then (I assume I can't smell it).  So anyway, whatever this is I can smell it, so I know it not me!!!  I believe this person is doing this to get me moved away from her office.  The funny part is I work with attorneys, she is not one, the people on my "team" don't bother me too much.  Other than the usual sniffing or coughing and comments behind my back, they don't even talk to me unless they have too.  Which for the most part is okay with me. 
 
I plan to document everything from this point on.  I will start getting copies of all my medical and therapy records together just to have them on hand.  I plan on consulting with an attorney first thing Monday just to get an understanding as to what my options are.  And like you I will be talking to my union also. 
 
I believe my "team" does not bother me because they know me well enough to know that I will sue their a** and the city and not think twice about it. 
 
I have a problem that I have no control over, talking about me behind my back is one thing (sure it hurts sometimes), but when you think it's okay to start doing things like spraying something that smells almost like skunk in my workspace... that's completely different. 
 
It will be interesting to see what my space smells like on Monday, as I was very outspoken about what i believed was going on and who did it..  I'm not taking this.  You don't have to like me, but you will respect me.
 
I'll keep you posted!!  Hang in there.
 
Theresa
 
 
 
 
 


--- On Fri, 4/24/09, jacksonhodge <jacksonhodge@ yahoo..com> wrote:
From: jacksonhodge <jacksonhodge@ yahoo.com>
Subject: [Trimethylaminuria] Need to vent and an opinion
To: Trimethylaminuria@ yahoogroups. com
Date: Friday, April 24, 2009, 5:11 PM



Hi All

I tried to post earlier today when I was so frustrated about an incident that happened. While I was writing my post and just about finished I tried to read over it and make some corrections and somehow deleted the post.

First of all I've been a member of this group and the body odor group on msn groups for awhile. I have not post on this group but I read the post especially when I'm down.

I work for the public school system for 21 years. The last elementary school I worked at for 8 years (as the administrative assistant) is when I discovered I had this odor condition.

Due to budget cuts and school closings that school closed. Of course I would see the occasional frowns or the quick wipe of the nose but they respect me and would still include me and talked to me. They also knew how dependable and hard working I am.

The beginning of this school year I was placed at an Elementary School that was in transition meaning all the staff was replaced with new staff because the school didn't meet any of its targets. Test scores were down, the attendance was down etc. and we have three years for improvements.

Anyway, when I started the school I was introduced to the other office worker as the administrative assistant (public relation) an in-house position. I was told that she was a friend of the principal/superviso r and she was a substitute at another school. I was also told that I would be the main person in the office and that she had no experience, and she is to deal with the public and to help her in any way that I could.

The following week I decided to go to the supervisor and the "Public Relation person "and tell them about my condition and that I was working on it but some days it might be unbearable.

Later, I tried to give her small assignments to help out the office and me really but she would never complete them. She would answer the phones when she felt like it. Leave the office when she didn't want to deal with visitors, parents or students and I would just pick up where she left off because
1). I have a daughter in college and I need to work
2). I'm afraid that at any time I might be out of my job because of my condition.

During the year I notice that she is the ears and eyes for the supervisor and is part responsible for the school nurse being involuntary transferred to another school. She is also partly responsible for the constant gossip around the school.

Two week ago, I don't know exactly what happened but I do know she came in the office very upset and when I asked her what happened she was very abrupt and harsh with me. She then filled out a leave slip and left the job. I was stunned and a little embarrassed because this was done in front of others (teachers and office staff).

I later decided that I would just be cordial with this person and that was it.
The following Monday morning I speak and go on with my routine of preparing the office for the morning. The whole day the office is quiet as a matter of fact the whole week the office is quiet.

This week I noticed a lot of little childish games being played. Like instead of telling me I have a phone call she is transferring the calls to my phone. (our desks are two foot steps away). Purposely putting people on hold that ask for me and not telling me. Putting her assignments on my desk..

And a lot of whispering and laughing out loud with other co-workers about how HOT it is in here, I went to the supervisor and he said we need to have a meeting but we have not had one yet.

I'm sorry that this is so long but this is what had me so frustrated.

Today I take off from work to pick my daughter up from college (summer break) and I get a call from work.

I was told that they need to get into some files that I maintain and the files were locked. I told them that I had the keys and didn't understand what the urgency was that it can't wait until Monday.

Later the principal/superviso r calls me and says he needs the files opened and I know for a fact that this woman had something to do with this.
I'm about to get on the road. It takes 5 hours to get my daughter and I had planned to beat the traffic coming back. I take the keys to work an hour out of my way and on the way back I call my union rep. because I believe I need to have my odor condition documented and I fell like I'm the next target.

Please advise? Are these feelings valid? Am I making too much of this?

I'm sorry for the long post
Thanks for listening.








Reply | Forward | Messages in this Topic (17)
#1766 From: Cheryl Madison <kemetian43@...>
Date: Thu Apr 30, 2009 11:34 pm
Subject: Re: Re: misreading a situation 		kemetian43
Offline Offline
Send Email Send Email
 
im homebound, im here 24/7

--- On Thu, 4/30/09, Fi a <im_fi@...> wrote:

From: Fi a <im_fi@...>
Subject: Re: [Trimethylaminuria] Re: misreading a situation
To: Trimethylaminuria@yahoogroups.com
Date: Thursday, April 30, 2009, 10:38 PM

Hi Cheryl,
 
Would like to speak with you sometime.  Let me know when it's ok with you and I'll give you a ring.  You said somethings I can relate too and would like to know more about you and I'll tell you my experiences.
 
Talk soon!  Fidela


From: "r2rat@..." <r2rat@...>
To: Trimethylaminuria@ yahoogroups. com
Sent: Wednesday, April 29, 2009 8:15:24 PM
Subject: Re: [Trimethylaminuria] Re: misreading a situation

Cheryl,
I really do believe that when we are around family/friends, we are comfortable, therefore no gas of the tamu. However, when we are stressed, the tamu comes out of nowhere, hence riding the bus filled with strangers. 


-----Original Message-----
From: Cheryl Madison <kemetian43@yahoo. com>
To: Trimethylaminuria@ yahoogroups. com
Sent: Mon, 27 Apr 2009 1:08 pm
Subject: Re: [Trimethylaminuria] Re: misreading a situation



When i get out the shower i ask my teen age children,,,do you smell me,,,am i smelling ok,,and they say momma you smell just like soap,,,then 5 minutes later i go get on the public bus and everyone is spraying and coughing, the driver slams open his window, then the gas from tmau comes that i have so frequently and cannot control, and i wonder what the heck is wrong with my kids, then it dawned on me,,they are so used to the smell that it doesnt bother them anymore,,,but i have to literally pull my daughter off me,,she is always sitting on me,,kissing me and hugging me, it's getting on my nerves, these children smell nothing, i wish the world was like that


--- On Mon, 4/27/09, sharnsk <sharnsk@yahoo. com> wrote:

From: sharnsk <sharnsk@yahoo. com>
Subject: [Trimethylaminuria] Re: misreading a situation
To: Trimethylaminuria@ yahoogroups. com
Date: Monday, April 27, 2009, 3:42 PM

I have a daughter but the issue was ME not wanting to hug her because of my odor. I did hug her as a child but tended to shy away as she became a teen.

Misunderstandings happen and that was one of them. She blamed herself and thought something was wrong with her.

With our issues we really need a reality check that not everything is our fault. When it is then we own it and need to do something to change how we feel. To both of you Mothers please try counseling.

Couseling helps with how we feel... Don't expect it to change a physical condition just how you feel about it.. I hope this helps in looking at it from someone elses shoes. Mothehood is so important.

Best wishes,
Sharon+

--- In Trimethylaminuria@ yahoogroups. com, Cheryl Madison <kemetian43@ ...> wrote:
>
> my mother is embarrased of my looks,,if one person in the whole world would have compassion on me i would think it would be her, its a painful feeling to know how she really feels, but i know she is human and dealing with it the best she can,,,but my daughter,,,i dont care what the creator has endowed her with,,momma is there 24/7 no matter what condion you are in,,,
>
> From: Tizod@... <Tizod@...>
> Subject: Re: [Trimethylaminuria] transfer of odor
> To: Trimethylaminuria@ yahoogroups. . com
> Date: Thursday, April 23, 2009, 11:49 PM

> Sherry,
>  
> I feel so awful! I am guilty of stepping back away from my daughter at times. I can't hug her if I'm going out. Her smell does transfer to others. I try VERY HARD not to shrug away from her but there are times when I just have too. I don't want to go to work smelling like her.. Before you all start yelling at me..........  I KNOW!!!!!!! She doesn't want to smell that way either!!! AS I said I try very hard NOT to do it . I TRY to avoid being put into the situation where I have to stop her.She knows that this is a problem and she tries to keep in mind when hugs are ok and when she needs to wait..At home she can hug me all day long, I don't care.Believe me.......I feel HORRIBLE about the whole situation!!
>  
> Tina





Reply | Forward | Messages in this Topic (11)
#1764 From: "Maria de la Torre" <mpdela1@...>
Date: Thu Apr 30, 2009 10:57 pm
Subject: Re: Women's Conference Call Thursday at 8:30 pm EST, 4/30/2009, 8:00 pm 		mpdela
Offline Offline
Send Email Send Email
  
Hi Sharon and everyone,

The Women's Conference Call Phone number has been changed to a private one that
is published in the private Women's Board in Arun's Body Odor Forum.  Every
woman is invited to register in that Board to hold private discussions on
women's issues with BO.

If any woman in this forum that doesn't want to register in that Board and still
would like to have this conference call number with the access code, please
email me, mpdela1@... , and I'll be happy to give it to you.

This measure has been done so that women can feel comfortable knowing that
measures have been taken to create a more private environment in which to
discuss women's issues regarding body odor - how to manage it  it best.

Hope all the ladies can join us.

Marķa



--- In Trimethylaminuria@yahoogroups.com, Trimethylaminuria@yahoogroups.com
wrote:
>
> Reminder from: Trimethylaminuria Yahoo! Group
>  http://groups.yahoo.com/group/Trimethylaminuria/cal
>
> Women's Conference Call Thursday at 8:30 pm EST
> Thursday April 30, 2009
> 8:00 pm - 9:00 pm
> (This event repeats every other week.)
> (The next reminder for this event will be sent in 5 hours, 31 minutes.)
>
> Notes:
> For USA-based: (712) 432 1620
> then type the access code: 391629#
>
> Non USA : prefix above with 001 but check to see if it is free with your
supplier
>
> This phoneline can be used anytime to talk to others.
> The time is 8:30 PM EST not 8pm.
> Calendar only shows on the even hours.
>
>
>
> All Rights Reserved
>  Copyright © 2009
>  Yahoo! Inc.
>  http://www.yahoo.com
>
> Privacy Policy:
>  http://privacy.yahoo.com/privacy/us
>
> Terms of Service:
>  http://docs.yahoo.com/info/terms/
>

Reply | Forward | Messages in this Topic (1)
#1763 From: Fi a <im_fi@...>
Date: Thu Apr 30, 2009 10:38 pm
Subject: Re: Re: misreading a situation 		im_fi
Offline Offline
Send Email Send Email
 
Hi Cheryl,
 
Would like to speak with you sometime.  Let me know when it's ok with you and I'll give you a ring.  You said somethings I can relate too and would like to know more about you and I'll tell you my experiences.
 
Talk soon!  Fidela


From: "r2rat@..." <r2rat@...>
To: Trimethylaminuria@yahoogroups.com
Sent: Wednesday, April 29, 2009 8:15:24 PM
Subject: Re: [Trimethylaminuria] Re: misreading a situation

Cheryl,
I really do believe that when we are around family/friends, we are comfortable, therefore no gas of the tamu. However, when we are stressed, the tamu comes out of nowhere, hence riding the bus filled with strangers. 


-----Original Message-----
From: Cheryl Madison <kemetian43@yahoo. com>
To: Trimethylaminuria@ yahoogroups. com
Sent: Mon, 27 Apr 2009 1:08 pm
Subject: Re: [Trimethylaminuria] Re: misreading a situation



When i get out the shower i ask my teen age children,,,do you smell me,,,am i smelling ok,,and they say momma you smell just like soap,,,then 5 minutes later i go get on the public bus and everyone is spraying and coughing, the driver slams open his window, then the gas from tmau comes that i have so frequently and cannot control, and i wonder what the heck is wrong with my kids, then it dawned on me,,they are so used to the smell that it doesnt bother them anymore,,,but i have to literally pull my daughter off me,,she is always sitting on me,,kissing me and hugging me, it's getting on my nerves, these children smell nothing, i wish the world was like that


--- On Mon, 4/27/09, sharnsk <sharnsk@yahoo. com> wrote:

From: sharnsk <sharnsk@yahoo. com>
Subject: [Trimethylaminuria] Re: misreading a situation
To: Trimethylaminuria@ yahoogroups. com
Date: Monday, April 27, 2009, 3:42 PM

I have a daughter but the issue was ME not wanting to hug her because of my odor. I did hug her as a child but tended to shy away as she became a teen.

Misunderstandings happen and that was one of them. She blamed herself and thought something was wrong with her.

With our issues we really need a reality check that not everything is our fault. When it is then we own it and need to do something to change how we feel. To both of you Mothers please try counseling.

Couseling helps with how we feel.. Don't expect it to change a physical condition just how you feel about it.. I hope this helps in looking at it from someone elses shoes. Mothehood is so important.

Best wishes,
Sharon+

--- In Trimethylaminuria@ yahoogroups. com, Cheryl Madison <kemetian43@ ...> wrote:
>
> my mother is embarrased of my looks,,if one person in the whole world would have compassion on me i would think it would be her, its a painful feeling to know how she really feels, but i know she is human and dealing with it the best she can,,,but my daughter,,,i dont care what the creator has endowed her with,,momma is there 24/7 no matter what condion you are in,,,
>
> From: Tizod@... <Tizod@...>
> Subject: Re: [Trimethylaminuria] transfer of odor
> To: Trimethylaminuria@ yahoogroups. . com
> Date: Thursday, April 23, 2009, 11:49 PM

> Sherry,
>  
> I feel so awful! I am guilty of stepping back away from my daughter at times. I can't hug her if I'm going out. Her smell does transfer to others. I try VERY HARD not to shrug away from her but there are times when I just have too. I don't want to go to work smelling like her.. Before you all start yelling at me..........  I KNOW!!!!!!! She doesn't want to smell that way either!!! AS I said I try very hard NOT to do it . I TRY to avoid being put into the situation where I have to stop her.She knows that this is a problem and she tries to keep in mind when hugs are ok and when she needs to wait..At home she can hug me all day long, I don't care.Believe me.......I feel HORRIBLE about the whole situation!!
>  
> Tina




Reply | Forward | Messages in this Topic (11)
#1762 From: Dee brown <delobrown11224@...>
Date: Thu Apr 30, 2009 6:22 pm
Subject: Re: Re: misreading a situation 		delobrown11224
Offline Offline
Send Email Send Email
 
that is so true. I have noted myself, that when around strangers the gas will show up. because when I get out the shower and at home I ask the same thing "do you smell me" and  get a NO too. but soon as I get on that bus or train you can see people holding their noses or giving you a funny look or moving away from you. some times I feel like turning around and going back home. than I say to myself " Im already out here might as well keep it moving.

DELO
I GIVE MYSELF ROSES

--- On Wed, 4/29/09, r2rat@... <r2rat@...> wrote:

From: r2rat@... <r2rat@...>
Subject: Re: [Trimethylaminuria] Re: misreading a situation
To: Trimethylaminuria@yahoogroups.com
Date: Wednesday, April 29, 2009, 9:15 PM

Cheryl,
I really do believe that when we are around family/friends, we are comfortable, therefore no gas of the tamu. However, when we are stressed, the tamu comes out of nowhere, hence riding the bus filled with strangers. 


-----Original Message-----
From: Cheryl Madison <kemetian43@yahoo. com>
To: Trimethylaminuria@ yahoogroups. com
Sent: Mon, 27 Apr 2009 1:08 pm
Subject: Re: [Trimethylaminuria] Re: misreading a situation



When i get out the shower i ask my teen age children,,,do you smell me,,,am i smelling ok,,and they say momma you smell just like soap,,,then 5 minutes later i go get on the public bus and everyone is spraying and coughing, the driver slams open his window, then the gas from tmau comes that i have so frequently and cannot control, and i wonder what the heck is wrong with my kids, then it dawned on me,,they are so used to the smell that it doesnt bother them anymore,,,but i have to literally pull my daughter off me,,she is always sitting on me,,kissing me and hugging me, it's getting on my nerves, these children smell nothing, i wish the world was like that


--- On Mon, 4/27/09, sharnsk <sharnsk@yahoo. com> wrote:

From: sharnsk <sharnsk@yahoo. com>
Subject: [Trimethylaminuria] Re: misreading a situation
To: Trimethylaminuria@ yahoogroups. com
Date: Monday, April 27, 2009, 3:42 PM

I have a daughter but the issue was ME not wanting to hug her because of my odor. I did hug her as a child but tended to shy away as she became a teen.

Misunderstandings happen and that was one of them. She blamed herself and thought something was wrong with her.

With our issues we really need a reality check that not everything is our fault. When it is then we own it and need to do something to change how we feel. To both of you Mothers please try counseling.

Couseling helps with how we feel.. Don't expect it to change a physical condition just how you feel about it.. I hope this helps in looking at it from someone elses shoes. Mothehood is so important.

Best wishes,
Sharon+

--- In Trimethylaminuria@ yahoogroups. com, Cheryl Madison <kemetian43@ ...> wrote:
>
> my mother is embarrased of my looks,,if one person in the whole world would have compassion on me i would think it would be her, its a painful feeling to know how she really feels, but i know she is human and dealing with it the best she can,,,but my daughter,,,i dont care what the creator has endowed her with,,momma is there 24/7 no matter what condion you are in,,,
>
> From: Tizod@... <Tizod@...>
> Subject: Re: [Trimethylaminuria] transfer of odor
> To: Trimethylaminuria@ yahoogroups. . com
> Date: Thursday, April 23, 2009, 11:49 PM

> Sherry,
>  
> I feel so awful! I am guilty of stepping back away from my daughter at times. I can't hug her if I'm going out. Her smell does transfer to others. I try VERY HARD not to shrug away from her but there are times when I just have too. I don't want to go to work smelling like her.. Before you all start yelling at me..........  I KNOW!!!!!!! She doesn't want to smell that way either!!! AS I said I try very hard NOT to do it . I TRY to avoid being put into the situation where I have to stop her.She knows that this is a problem and she tries to keep in mind when hugs are ok and when she needs to wait..At home she can hug me all day long, I don't care.Believe me.......I feel HORRIBLE about the whole situation!!
>  
> Tina




Reply | Forward | Messages in this Topic (11)
#1760 From: <chanley13@...>
Date: Thu Apr 30, 2009 4:28 pm
Subject: Re: Re: diet for trimethylaminuria 		shania7435
Offline Offline
Send Email Send Email
  
i was referring to the choline content
---- uplifted <otaylorscott@...> wrote:
> In my experience eating raw vegetables produce an enormous amount of gas.
IfĀ I take digestive enzymes the gas will not be as bad. I have found the
enzymes from Garden of Life works best.
>
> --- On Mon, 4/27/09, chanley13@... <chanley13@...> wrote:
>
>
> From: chanley13@... <chanley13@...>
> Subject: Re: [Trimethylaminuria] Re: diet for trimethylaminuria
> To: Trimethylaminuria@yahoogroups.com
> Cc: "bobbi francis" <annhenry99@...>
> Date: Monday, April 27, 2009, 4:18 PM
>
>
>
>
>
>
>
>
> I believe you're incorrect in saying to all veggies must be cooked.
>
> ---- bobbi francis <annhenry99@yahoo. com> wrote:
> > No potatoes? Check that one again - but then it could be a food
combo-tolerantĀ  item like
> > no beans but okay with rice.
> > Ā 
> > Sweet and white potatoes are okay but not with any type of meat.
> > All vegetables must be cooked. (even steam the romaine for a few seconds in
the microwave).
> > Ā 
> > Chow down on the sweet potatoes. Somebody sent in a sweet potato cookie
recipe that I adore.
> > Ā 
> > b
> > Ā 
> > Ā 
> >
> > Let us put a Happy face on your living space today.
> >
> > --- On Mon, 4/27/09, stayc <stayc_1974@yahoo. com> wrote:
> >
> >
> > From: stayc <stayc_1974@yahoo. com>
> > Subject: [Trimethylaminuria] Re: diet for trimethylaminuria
> > To: Trimethylaminuria@ yahoogroups. com
> > Date: Monday, April 27, 2009, 11:22 AM
> >
> >
> >
> >
> >
> >
> >
> >
> > how about sweet potatoes and dannon activia.
> > >
> > > dairy is one of the big no nos, no alcohol, no smoking, no onions or
garlic, no potatoes,
> > > most fruits n veggies are good
> > > >
> > >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>

Reply | Forward | Messages in this Topic (15)
#1759 From: Cheryl Madison <kemetian43@...>
Date: Thu Apr 30, 2009 3:19 pm
Subject: Re: HELLO EVERYONE 		kemetian43
Offline Offline
Send Email Send Email
 
hey,,,shella feel free to call me we can me we can meet up at my house,,,and anyone else in the sacramento ca area,,,no i am not cheryl fields, 916-344-5849

--- On Thu, 4/30/09, uplifted <otaylorscott@...> wrote:

From: uplifted <otaylorscott@...>
Subject: Re: [Trimethylaminuria] HELLO EVERYONE
To: Trimethylaminuria@yahoogroups.com
Date: Thursday, April 30, 2009, 3:59 AM

Hi Cheryl
I talked to you on the phone about a month ago. I live in the East Bay and would like to join your support group.
 
Shella

--- On Mon, 4/27/09, sreymom chhoun <sreymom@sbcglobal. net> wrote:

From: sreymom chhoun <sreymom@sbcglobal. net>
Subject: Re: [Trimethylaminuria] HELLO EVERYONE
To: Trimethylaminuria@ yahoogroups. com
Date: Monday, April 27, 2009, 11:13 PM

Are you the one from the show? I live about 40 minutes away from you. We should get to know one another.
 
Take care,
Gina

From: kemetian43 <kemetian43@yahoo. com>
To: Trimethylaminuria@ yahoogroups. com
Sent: Friday, April 3, 2009 11:31:46 AM
Subject: [Trimethylaminuria] HELLO EVERYONE

My name is cheryl, i live in the state of california,, ,i would just like to extend my hand out and greet each and everyone of you...I wish we could have met on different circumstances, but nevertheless, hello to each and everyone of you. Im in the capitol of sacramento so if anyone is in that area, i am trying to get a support group going and would love to have you. Feel free to call anytime, im homebound, i cant leave my home i smell so bad. So i am always here. 24/7 (916-344-5849) call me anytime you will always have a friend here




Reply | Forward | Messages in this Topic (4)
#1758 From: irin stone <irinstn@...>
Date: Thu Apr 30, 2009 1:53 pm
Subject: Re: Re: diet for trimethylaminuria 		irinstn
Offline Offline
Send Email Send Email
 
Hi Sharon,
 
I posted a copy to the tfnetwork as well...  As for how detailed the recipe book should be, I think that this type of answers would make this book a bit different from the regular books, as it should be designated to TMAU and other BO diseases.  This is only my opinion.


--- On Wed, 4/29/09, sharnsk <sharnsk@...> wrote:
From: sharnsk <sharnsk@...>
Subject: [Trimethylaminuria] Re: diet for trimethylaminuria
To: Trimethylaminuria@yahoogroups.com
Date: Wednesday, April 29, 2009, 7:30 AM

Hi Irin,

Sandy doesn't post on these sites but I agree it is confusing. The cook book would be 1000'S pgs. The best way is to keep this link or file on your desk top and look things up. I happen to have mine open so I'll give some examples. I hope this helps people?

http://www.nal. usda.gov/ fnic/foodcomp/ Data/SR21/ nutrlist/ sr21a421. pdf

A baked or boiled potatoe runs about 18-20 mg choline
Mashed about 30 mg
Potatoes, french fried, all types, 10 strips 11.9 mg

Snack, potato chips, made from dried potatoes, plain 1 oz 9.3 mg
Snacks, potato chips, made from dried potatoes, REDUCED fat = 0 mg

Sweet potato, cooked, baked in skin, without salt 1 potato 19.1 MG

My goal is about 400 mg/day. Just don't eat it all at once or your body can't produce enough in that period to deodorize the food.

Adequate Intake (AI) for Choline

Life stage Age Males (mg/day) Females
Infants 0-6 months 125 (mg/day) 125
Infants 7-12 months 150 (mg/day) 150
Children 1-3 years 200 (mg/day) 200
Children 4-8 years 250 (mg/day) 250
Children 9-13 years 375 (mg/day) 375
Adolescents 14-18 years 550 (mg/day) 400
Adults 19 years and older 550 (mg/day) 425
Pregnancy All ages - 450 (mg/day)
Breast-feeding All ages - 550 (mg/day)
http://lpi.oregonst ate.edu/infocent er/othernuts/ choline/
------------ --------- --------- --------- --------- --------- -

--- In Trimethylaminuria@ yahoogroups. com, irin stone <irinstn@... > wrote:
>
> So many different opinions!  This is exactly the type of questions that should be answered in the coming Recipe Book for TMAU. 
>  
> What do you think, Sandy?
>
>  
>
> --- On Tue, 4/28/09, Kandyce August <kween_of_klubs@ ...> wrote:
>
> From: Kandyce August <kween_of_klubs@ ...>
> Subject: Re: [Trimethylaminuria] Re: diet for trimethylaminuria
> To: Trimethylaminuria@ yahoogroups. com
> Date: Tuesday, April 28, 2009, 5:29 PM
>
>
>
>
>
>
>
>
>
>
>
> potatoes are starchy which turns to sugar in the body
> sugar has been said by many to cuase problems
> maybe thats the connection.. .?
>
>
>
>
>
> From: bobbi francis <annhenry99@ yahoo. com>
> To: Trimethylaminuria@ yahoogroups. com
> Sent: Monday, April 27, 2009 2:22:34 PM
> Subject: Re: [Trimethylaminuria] Re: diet for trimethylaminuria
>
>
>
>
>
>
>
>
> No potatoes? Check that one again - but then it could be a food combo-tolerant  item like
> no beans but okay with rice.
>  
> Sweet and white potatoes are okay but not with any type of meat.
> All vegetables must be cooked.. (even steam the romaine for a few seconds in the microwave).
>  
> Chow down on the sweet potatoes. Somebody sent in a sweet potato cookie recipe that I adore.
>  
> b
>  
>  
>
> Let us put a Happy face on your living space today.
>
> --- On Mon, 4/27/09, stayc <stayc_1974@ yahoo. com> wrote:
>
>
> From: stayc <stayc_1974@ yahoo. com>
> Subject: [Trimethylaminuria] Re: diet for trimethylaminuria
> To: Trimethylaminuria@ yahoogroups. com
> Date: Monday, April 27, 2009, 11:22 AM
>
>
>
>
> how about sweet potatoes and dannon activia.
> >
> > dairy is one of the big no nos, no alcohol, no smoking, no onions or garlic, no potatoes,
> > most fruits n veggies are good
> > >
> >
>



Reply | Forward | Messages in this Topic (15)
#1757 From: uplifted <otaylorscott@...>
Date: Thu Apr 30, 2009 4:19 am
Subject: Re: Re: diet for trimethylaminuria 		uplifted09
Offline Offline
Send Email Send Email
 
In my experience eating raw vegetables produce an enormous amount of gas. If I take digestive enzymes the gas will not be as bad. I have found the enzymes from Garden of Life works best.

--- On Mon, 4/27/09, chanley13@... <chanley13@...> wrote:

From: chanley13@... <chanley13@...>
Subject: Re: [Trimethylaminuria] Re: diet for trimethylaminuria
To: Trimethylaminuria@yahoogroups.com
Cc: "bobbi francis" <annhenry99@...>
Date: Monday, April 27, 2009, 4:18 PM

I believe you're incorrect in saying to all veggies must be cooked.

---- bobbi francis <annhenry99@yahoo. com> wrote:
> No potatoes? Check that one again - but then it could be a food combo-tolerant  item like
> no beans but okay with rice.
>  
> Sweet and white potatoes are okay but not with any type of meat.
> All vegetables must be cooked. (even steam the romaine for a few seconds in the microwave).
>  
> Chow down on the sweet potatoes. Somebody sent in a sweet potato cookie recipe that I adore.
>  
> b
>  
>  
>
> Let us put a Happy face on your living space today.
>
> --- On Mon, 4/27/09, stayc <stayc_1974@yahoo. com> wrote:
>
>
> From: stayc <stayc_1974@yahoo. com>
> Subject: [Trimethylaminuria] Re: diet for trimethylaminuria
> To: Trimethylaminuria@ yahoogroups. com
> Date: Monday, April 27, 2009, 11:22 AM
>
>
>
>
>
>
>
>
> how about sweet potatoes and dannon activia.
> >
> > dairy is one of the big no nos, no alcohol, no smoking, no onions or garlic, no potatoes,
> > most fruits n veggies are good
> > >
> >
>
>
>
>
>
>
>
>
>
>
>
>
>
>



Reply | Forward | Messages in this Topic (15)
#1756 From: uplifted <otaylorscott@...>
Date: Thu Apr 30, 2009 3:59 am
Subject: Re: HELLO EVERYONE 		uplifted09
Offline Offline
Send Email Send Email
 
Hi Cheryl
I talked to you on the phone about a month ago. I live in the East Bay and would like to join your support group.
 
Shella

--- On Mon, 4/27/09, sreymom chhoun <sreymom@...> wrote:

From: sreymom chhoun <sreymom@...>
Subject: Re: [Trimethylaminuria] HELLO EVERYONE
To: Trimethylaminuria@yahoogroups.com
Date: Monday, April 27, 2009, 11:13 PM

Are you the one from the show? I live about 40 minutes away from you. We should get to know one another.
 
Take care,
Gina

From: kemetian43 <kemetian43@yahoo. com>
To: Trimethylaminuria@ yahoogroups. com
Sent: Friday, April 3, 2009 11:31:46 AM
Subject: [Trimethylaminuria] HELLO EVERYONE

My name is cheryl, i live in the state of california,, ,i would just like to extend my hand out and greet each and everyone of you...I wish we could have met on different circumstances, but nevertheless, hello to each and everyone of you. Im in the capitol of sacramento so if anyone is in that area, i am trying to get a support group going and would love to have you. Feel free to call anytime, im homebound, i cant leave my home i smell so bad. So i am always here. 24/7 (916-344-5849) call me anytime you will always have a friend here



Reply | Forward | Messages in this Topic (4)
#1755 From: "forever.hopeful77" <forever.hopeful77@...>
Date: Thu Apr 30, 2009 7:06 am
Subject: Re: nutrition 		forever.hope...
Offline Offline
Send Email Send Email
  
Sorry, I am a bit late replying to this and you may have found it by now. Go
into files (left hand side of screen), then scroll down and click on "Rob from
Australia". Then click on Australian Newsletter, Vol 1. Issue 2.

Reply | Forward | Messages in this Topic (4)
#1754 From: r2rat@...
Date: Thu Apr 30, 2009 1:15 am
Subject: Re: Re: misreading a situation 		carole_2000_66
Offline Offline
Send Email Send Email
 
Cheryl,
I really do believe that when we are around family/friends, we are comfortable, therefore no gas of the tamu. However, when we are stressed, the tamu comes out of nowhere, hence riding the bus filled with strangers. 


-----Original Message-----
From: Cheryl Madison <kemetian43@...>
To: Trimethylaminuria@yahoogroups.com
Sent: Mon, 27 Apr 2009 1:08 pm
Subject: Re: [Trimethylaminuria] Re: misreading a situation



When i get out the shower i ask my teen age children,,,do you smell me,,,am i smelling ok,,and they say momma you smell just like soap,,,then 5 minutes later i go get on the public bus and everyone is spraying and coughing, the driver slams open his window, then the gas from tmau comes that i have so frequently and cannot control, and i wonder what the heck is wrong with my kids, then it dawned on me,,they are so used to the smell that it doesnt bother them anymore,,,but i have to literally pull my daughter off me,,she is always sitting on me,,kissing me and hugging me, it's getting on my nerves, these children smell nothing, i wish the world was like that


--- On Mon, 4/27/09, sharnsk <sharnsk@yahoo.com> wrote:

From: sharnsk <sharnsk@yahoo.com>
Subject: [Trimethylaminuria] Re: misreading a situation
To: Trimethylaminuria@yahoogroups.com
Date: Monday, April 27, 2009, 3:42 PM

I have a daughter but the issue was ME not wanting to hug her because of my odor. I did hug her as a child but tended to shy away as she became a teen.

Misunderstandings happen and that was one of them. She blamed herself and thought something was wrong with her.

With our issues we really need a reality check that not everything is our fault. When it is then we own it and need to do something to change how we feel. To both of you Mothers please try counseling.

Couseling helps with how we feel.. Don't expect it to change a physical condition just how you feel about it.. I hope this helps in looking at it from someone elses shoes. Mothehood is so important.

Best wishes,
Sharon+

--- In Trimethylaminuria@ yahoogroups. com, Cheryl Madison <kemetian43@ ...> wrote:
>
> my mother is embarrased of my looks,,if one person in the whole world would have compassion on me i would think it would be her, its a painful feeling to know how she really feels, but i know she is human and dealing with it the best she can,,,but my daughter,,,i dont care what the creator has endowed her with,,momma is there 24/7 no matter what condion you are in,,,
>
> From: Tizod@... <Tizod@...>
> Subject: Re: [Trimethylaminuria] transfer of odor
> To: Trimethylaminuria@ yahoogroups.. com
> Date: Thursday, April 23, 2009, 11:49 PM

> Sherry,
>  
> I feel so awful! I am guilty of stepping back away from my daughter at times. I can't hug her if I'm going out. Her smell does transfer to others. I try VERY HARD not to shrug away from her but there are times when I just have too. I don't want to go to work smelling like her.. Before you all start yelling at me..........  I KNOW!!!!!!! She doesn't want to smell that way either!!! AS I said I try very hard NOT to do it . I TRY to avoid being put into the situation where I have to stop her.She knows that this is a problem and she tries to keep in mind when hugs are ok and when she needs to wait..At home she can hug me all day long, I don't care.Believe me.......I feel HORRIBLE about the whole situation!!
>  
> Tina



Reply | Forward | Messages in this Topic (11)
#1753 From: Trimethylaminuria@yahoogroups.com
Date: Wed Apr 29, 2009 3:59 pm
Subject: Los Angeles Meetup, 5/9/2009, 12:00 pm 		Trimethylaminuria@yahoogroups.com
Send Email Send Email
 
Reminder from:   Trimethylaminuria Yahoo! Group
 
Title:   Los Angeles Meetup
 
Date:   Saturday May 9, 2009
Time:   12:00 pm - 2:00 pm
Next reminder:   The next reminder for this event will be sent in 8 days, 1 minute.
Location:   Arcadia Community Regional Park
Notes:   Date: May 9th, 2009.
Time: 12:00 PM Noon
Place: Arcadia Community Regional Park
The park is about 1 mile away from Santa Anita Race Track. You can get to the park via the 210 freeway, exit Santa Anita Ave and head south. The park is located at the corner of Huntington Dr. and Santa Anita Ave. The address is 405 South Santa Anita Avenue, Arcadia, CA 91006. Park your vehicle in the huge parking area off Santa Anita Ave.

So far I can estimate that anywhere from 4-8 people will show. If you have any questions or comments please fell free to email me: joelm211@.... Everyone here is invited.
 
Copyright © 2009  Yahoo! Inc. All Rights Reserved | Terms of Service | Privacy Policy

Reply | Forward | Messages in this Topic (2)
#1752 From: "sharnsk" <sharnsk@...>
Date: Wed Apr 29, 2009 2:30 pm
Subject: Re: diet for trimethylaminuria 		sharnsk
Offline Offline
Send Email Send Email
  
Hi Irin,

Sandy doesn't post on these sites but I agree it is confusing. The cook book
would be 1000'S pgs. The best way is to keep this link or file on your desk top
and look things up. I happen to have mine open so I'll give some examples. I
hope this helps people?

http://www.nal.usda.gov/fnic/foodcomp/Data/SR21/nutrlist/sr21a421.pdf

A baked or boiled potatoe runs about 18-20 mg choline
Mashed about 30 mg
Potatoes, french fried, all types, 10 strips 11.9 mg

Snack, potato chips, made from dried potatoes, plain 1 oz 9.3 mg
Snacks, potato chips, made from dried potatoes, REDUCED fat = 0 mg

Sweet potato, cooked, baked in skin, without salt 1 potato 19.1 MG

My goal is about 400 mg/day. Just don't eat it all at once or your body can't
produce enough in that period to deodorize the food.

Adequate Intake (AI) for Choline

Life stage Age     Males (mg/day) Females
Infants 0-6 months 125 (mg/day)   125
Infants 7-12 months 150 (mg/day)  150
Children 1-3 years 200 (mg/day)   200
Children 4-8 years 250 (mg/day)   250
Children 9-13 years 375 (mg/day)  375
Adolescents 14-18 years 550 (mg/day) 400
Adults 19 years and older 550 (mg/day) 425
Pregnancy All ages - 450 (mg/day)
Breast-feeding All ages - 550 (mg/day)
http://lpi.oregonstate.edu/infocenter/othernuts/choline/
-------------------------------------------------------------------


--- In Trimethylaminuria@yahoogroups.com, irin stone <irinstn@...> wrote:
>
> So many different opinions!  This is exactly the type of questions that should
be answered in the coming Recipe Book for TMAU. 
>  
> What do you think, Sandy?
>
>  
>
> --- On Tue, 4/28/09, Kandyce August <kween_of_klubs@...> wrote:
>
> From: Kandyce August <kween_of_klubs@...>
> Subject: Re: [Trimethylaminuria] Re: diet for trimethylaminuria
> To: Trimethylaminuria@yahoogroups.com
> Date: Tuesday, April 28, 2009, 5:29 PM
>
>
>
>
>
>
>
>
>
>
>
> potatoes are starchy which turns to sugar in the body
> sugar has been said by many to cuase problems
> maybe thats the connection.. .?
>
>
>
>
>
> From: bobbi francis <annhenry99@yahoo. com>
> To: Trimethylaminuria@ yahoogroups. com
> Sent: Monday, April 27, 2009 2:22:34 PM
> Subject: Re: [Trimethylaminuria] Re: diet for trimethylaminuria
>
>
>
>
>
>
>
>
> No potatoes? Check that one again - but then it could be a food
combo-tolerant item like
> no beans but okay with rice.
>  
> Sweet and white potatoes are okay but not with any type of meat.
> All vegetables must be cooked. (even steam the romaine for a few seconds in
the microwave).
>  
> Chow down on the sweet potatoes. Somebody sent in a sweet potato cookie recipe
that I adore.
>  
> b
>  
>  
>
> Let us put a Happy face on your living space today.
>
> --- On Mon, 4/27/09, stayc <stayc_1974@yahoo. com> wrote:
>
>
> From: stayc <stayc_1974@yahoo. com>
> Subject: [Trimethylaminuria] Re: diet for trimethylaminuria
> To: Trimethylaminuria@ yahoogroups. com
> Date: Monday, April 27, 2009, 11:22 AM
>
>
>
>
> how about sweet potatoes and dannon activia.
> >
> > dairy is one of the big no nos, no alcohol, no smoking, no onions or garlic,
no potatoes,
> > most fruits n veggies are good
> > >
> >
>

Reply | Forward | Messages in this Topic (15)
#1751 From: "sharnsk" <sharnsk@...>
Date: Wed Apr 29, 2009 1:52 pm
Subject: Re: Soybean, Soy Oil, Soy Sauce, Soy Lechtin, Soya and all its other names.. 		sharnsk
Offline Offline
Send Email Send Email
  
Hey Kandyce,

You are a label reader and that's great. I find if soy or lecithin is not listed
in the top 4-5 ingredients then I don't worry and just eat smaller amounts.

It's the total at a meal. If I mix soy and beef then that is too much. If
Lecithin is found at the bottom of the list as a emulsifier  then just have it.

Here is an old site that is outdated and probably propagana.
http://westonaprice.org/soy/lecithin.html

Here is fact from the USDA choline chart:

Oil, soybean, salad or cooking, (partially hydrogenated)= 0 of choline
Soy sauce made from soy and wheat 1 tbsp= 2.9mg choline
Soybeans, mature cooked, boiled, without salt 1 cup= 81.7 mg

So in general the more something is processed the less choline it retains.


Oil, soybean, salad or cooking, (partially hydrogenated)
--- In Trimethylaminuria@yahoogroups.com, Kandyce August <kween_of_klubs@...>
wrote:
>
> I'm having the hardest time eliminating soy
> it is in EVERYTHING!!
> any tips on how to avoid this?
> Is there maybe a product line of foods that specialize in NOT using this
ingredient?
>  
> Kandyce?
>
>
>
>
> ________________________________
> From: bobbi francis <annhenry99@...>
> To: Trimethylaminuria@yahoogroups.com
> Sent: Saturday, April 18, 2009 9:11:20 AM
> Subject: Re: [Trimethylaminuria] My First Post....
>
>
>
>
>
> Dear Mom,
>
> I can guarantee you that every single person here will stand up with you, and
for you. Your daughter is the epitome of what we are trying to prevent. You and
your family will have to make a lot of adjustments to your life but, once the
family gets a better understanding and accepts the new regulations, she will
become more accepting of herself.
> The first thing (that I advise) you should do is get her tested. In the
meantime, she will need to make dietary changes. The easiest way to "understand"
a low choline diet is to know what and when a certain food is in her system -
what are the smells.
> If it makes her have bloating, hiccups, indigestion or rectal gas - it will
make her smell.
> I find for kids it is easier to adopt an all fruit program until they get a
handle on what the no-no foods for them are.
> Immediately cut out:
>  
> Soy based foods
> Wheat and gluten's (I don't know of anyone here who does not have an issue
with these)
> Use white flour products instead of brown
> White rice if she is really hungry (you will need to eat a lot of fruit to
stay full)
> Avoid meats (not necessarily forever - just to start)
> Eat all meals at home. (not forever)
> Drink as much water as possible. Have a daily routine of exercise.
>
> This is just a start. There are many people here that will add to this list
and many people who may even come and hold her hand or talk to her.
>
> We are everywhere and she is not alone. 
>
> Your name will help (in case we are needed to help you).
>
> NARA/BOSS in metro Atlanta
> bobbi 
>   
> Let us put a Happy face on your living space today.
>
> --- On Sat, 4/18/09, tizodataol <Tizod@...> wrote:
>
>
> From: tizodataol <Tizod@...>
> Subject: [Trimethylaminuria] My First Post....
> To: Trimethylaminuria@ yahoogroups. com
> Date: Saturday, April 18, 2009, 12:24 AM
>
>
> Hi :) I've been reading the posts and the files for quite awhile. This is my
first post to the group.
> I have a 12 yr old daughter whom , I believe has TMUA. She struggles with the
smell evryday. We have tried so many things to help control the foul odor. She
showers SEVERAL times a day (rinses in cold water to help close pores), uses a
high PH soap, cleans her underarms with alcohol(to kill bacteria) and then
applies anti-persperant/ deodorant. Nothing helps! Within minutes of showering
she can smell like a rotten onion. The smell is so strong at times that it
brings tears to my eyes.She never has a fishy smell. She smells like STRONG
onion or garlic or at worst like rotten onion/garlic.
> The school has called childrens protective services 3 times this school year
alone. I have told them she has an issue that we are TRYING to control. They
INSIST that we are just dirty people and that my child doesn't shower and wear
clean clothes . I am my wits end. I can't stand to see her suffer like this! I
am looking into home schooling next year.She is already far behind in school.She
misses too much school because she can't take the teasing and accusations.
> Thanks for reading! I really needed to vent!
>
> Mom to a sufferer
>

Reply | Forward | Messages in this Topic (22)
#1750 From: irin stone <irinstn@...>
Date: Wed Apr 29, 2009 1:48 pm
Subject: Re: Soybean, Soy Oil, Soy Sauce, Soy Lechtin, Soya and all its other names.. 		irinstn
Offline Offline
Send Email Send Email
 
Kandyce, try using only natural stuff!
If the sauce has some of these ingredients, make your own sauce.  Or make your own burger from "clean" turkey breast...   And so on...

--- On Tue, 4/28/09, Kandyce August <kween_of_klubs@...> wrote:
From: Kandyce August <kween_of_klubs@...>
Subject: [Trimethylaminuria] Soybean, Soy Oil, Soy Sauce, Soy Lechtin, Soya and all its other names..
To: Trimethylaminuria@yahoogroups.com
Date: Tuesday, April 28, 2009, 5:35 PM

I'm having the hardest time eliminating soy
it is in EVERYTHING!!
any tips on how to avoid this?
Is there maybe a product line of foods that specialize in NOT using this ingredient?
 
Kandyce?

From: bobbi francis <annhenry99@yahoo. com>
To: Trimethylaminuria@ yahoogroups. com
Sent: Saturday, April 18, 2009 9:11:20 AM
Subject: Re: [Trimethylaminuria] My First Post....

Dear Mom,
 
I can guarantee you that every single person here will stand up with you, and for you. Your daughter is the epitome of what we are trying to prevent. You and your family will have to make a lot of adjustments to your life but, once the family gets a better understanding and accepts the new regulations, she will become more accepting of herself.
The first thing (that I advise) you should do is get her tested. In the meantime, she will need to make dietary changes. The easiest way to "understand" a low choline diet is to know what and when a certain food is in her system - what are the smells.
If it makes her have bloating, hiccups, indigestion or rectal gas - it will make her smell.
I find for kids it is easier to adopt an all fruit program until they get a handle on what the no-no foods for them are.
Immediately cut out:
 
Soy based foods
Wheat and gluten's (I don't know of anyone here who does not have an issue with these)
Use white flour products instead of brown
White rice if she is really hungry (you will need to eat a lot of fruit to stay full)
Avoid meats (not necessarily forever - just to start)
Eat all meals at home. (not forever)
Drink as much water as possible. Have a daily routine of exercise.
 
This is just a start. There are many people here that will add to this list and many people who may even come and hold her hand or talk to her.
 
We are everywhere and she is not alone. 
 
Your name will help (in case we are needed to help you).
 
NARA/BOSS in metro Atlanta
bobbi 
  
Let us put a Happy face on your living space today.

--- On Sat, 4/18/09, tizodataol <Tizod@...> wrote:

From: tizodataol <Tizod@...>
Subject: [Trimethylaminuria] My First Post.....
To: Trimethylaminuria@ yahoogroups. com
Date: Saturday, April 18, 2009, 12:24 AM

Hi :) I've been reading the posts and the files for quite awhile. This is my first post to the group.
I have a 12 yr old daughter whom , I believe has TMUA. She struggles with the smell evryday. We have tried so many things to help control the foul odor. She showers SEVERAL times a day (rinses in cold water to help close pores), uses a high PH soap, cleans her underarms with alcohol(to kill bacteria) and then applies anti-persperant/ deodorant. Nothing helps! Within minutes of showering she can smell like a rotten onion. The smell is so strong at times that it brings tears to my eyes.She never has a fishy smell. She smells like STRONG onion or garlic or at worst like rotten onion/garlic.
The school has called childrens protective services 3 times this school year alone. I have told them she has an issue that we are TRYING to control. They INSIST that we are just dirty people and that my child doesn't shower and wear clean clothes . I am my wits end. I can't stand to see her suffer like this! I am looking into home schooling next year.She is already far behind in school.She misses too much school because she can't take the teasing and accusations.
Thanks for reading! I really needed to vent!

Mom to a sufferer




Reply | Forward | Messages in this Topic (22)
#1749 From: irin stone <irinstn@...>
Date: Wed Apr 29, 2009 1:42 pm
Subject: Re: Re: diet for trimethylaminuria 		irinstn
Offline Offline
Send Email Send Email
 
So many different opinions!  This is exactly the type of questions that should be answered in the coming Recipe Book for TMAU. 
 
What do you think, Sandy?
 

--- On Tue, 4/28/09, Kandyce August <kween_of_klubs@...> wrote:
From: Kandyce August <kween_of_klubs@...>
Subject: Re: [Trimethylaminuria] Re: diet for trimethylaminuria
To: Trimethylaminuria@yahoogroups.com
Date: Tuesday, April 28, 2009, 5:29 PM

potatoes are starchy which turns to sugar in the body
sugar has been said by many to cuase problems
maybe thats the connection.. .?

From: bobbi francis <annhenry99@yahoo. com>
To: Trimethylaminuria@ yahoogroups. com
Sent: Monday, April 27, 2009 2:22:34 PM
Subject: Re: [Trimethylaminuria] Re: diet for trimethylaminuria

No potatoes? Check that one again - but then it could be a food combo-tolerant item like
no beans but okay with rice.
 
Sweet and white potatoes are okay but not with any type of meat.
All vegetables must be cooked. (even steam the romaine for a few seconds in the microwave).
 
Chow down on the sweet potatoes. Somebody sent in a sweet potato cookie recipe that I adore.
 
b
 
 

Let us put a Happy face on your living space today.

--- On Mon, 4/27/09, stayc <stayc_1974@yahoo. com> wrote:

From: stayc <stayc_1974@yahoo. com>
Subject: [Trimethylaminuria] Re: diet for trimethylaminuria
To: Trimethylaminuria@ yahoogroups. com
Date: Monday, April 27, 2009, 11:22 AM

how about sweet potatoes and dannon activia.
>
> dairy is one of the big no nos, no alcohol, no smoking, no onions or garlic, no potatoes,
> most fruits n veggies are good
> >
>




Reply | Forward | Messages in this Topic (15)
#1748 From: "Denny Drew" <valdendan@...>
Date: Wed Apr 29, 2009 12:32 pm
Subject: Re: Soybean, Soy Oil, Soy Sauce, Soy Lechtin, Soya and all its other names.. 		valdendan
Offline Offline
Send Email Send Email
  
Kandyce

What exactly do u like eating that contains soy ?
I might be able to suggest something else that u can use in place of it.

Denny









--- In Trimethylaminuria@yahoogroups.com, Kandyce August <kween_of_klubs@...>
wrote:
>
> I'm having the hardest time eliminating soy
> it is in EVERYTHING!!
> any tips on how to avoid this?
> Is there maybe a product line of foods that specialize in NOT using this
ingredient?
>  
> Kandyce?
>
>
>
>
> ________________________________
> From: bobbi francis <annhenry99@...>
> To: Trimethylaminuria@yahoogroups.com
> Sent: Saturday, April 18, 2009 9:11:20 AM
> Subject: Re: [Trimethylaminuria] My First Post....
>
>
>
>
>
> Dear Mom,
>
> I can guarantee you that every single person here will stand up with you, and
for you. Your daughter is the epitome of what we are trying to prevent. You and
your family will have to make a lot of adjustments to your life but, once the
family gets a better understanding and accepts the new regulations, she will
become more accepting of herself.
> The first thing (that I advise) you should do is get her tested. In the
meantime, she will need to make dietary changes. The easiest way to "understand"
a low choline diet is to know what and when a certain food is in her system -
what are the smells.
> If it makes her have bloating, hiccups, indigestion or rectal gas - it will
make her smell.
> I find for kids it is easier to adopt an all fruit program until they get a
handle on what the no-no foods for them are.
> Immediately cut out:
>  
> Soy based foods
> Wheat and gluten's (I don't know of anyone here who does not have an issue
with these)
> Use white flour products instead of brown
> White rice if she is really hungry (you will need to eat a lot of fruit to
stay full)
> Avoid meats (not necessarily forever - just to start)
> Eat all meals at home. (not forever)
> Drink as much water as possible. Have a daily routine of exercise.
>
> This is just a start. There are many people here that will add to this list
and many people who may even come and hold her hand or talk to her.
>
> We are everywhere and she is not alone. 
>
> Your name will help (in case we are needed to help you).
>
> NARA/BOSS in metro Atlanta
> bobbi 
>   
> Let us put a Happy face on your living space today.
>
> --- On Sat, 4/18/09, tizodataol <Tizod@...> wrote:
>
>
> From: tizodataol <Tizod@...>
> Subject: [Trimethylaminuria] My First Post....
> To: Trimethylaminuria@ yahoogroups. com
> Date: Saturday, April 18, 2009, 12:24 AM
>
>
> Hi :) I've been reading the posts and the files for quite awhile. This is my
first post to the group.
> I have a 12 yr old daughter whom , I believe has TMUA. She struggles with the
smell evryday. We have tried so many things to help control the foul odor. She
showers SEVERAL times a day (rinses in cold water to help close pores), uses a
high PH soap, cleans her underarms with alcohol(to kill bacteria) and then
applies anti-persperant/ deodorant. Nothing helps! Within minutes of showering
she can smell like a rotten onion. The smell is so strong at times that it
brings tears to my eyes.She never has a fishy smell. She smells like STRONG
onion or garlic or at worst like rotten onion/garlic.
> The school has called childrens protective services 3 times this school year
alone. I have told them she has an issue that we are TRYING to control. They
INSIST that we are just dirty people and that my child doesn't shower and wear
clean clothes . I am my wits end. I can't stand to see her suffer like this! I
am looking into home schooling next year.She is already far behind in school.She
misses too much school because she can't take the teasing and accusations.
> Thanks for reading! I really needed to vent!
>
> Mom to a sufferer
>

Reply | Forward | Messages in this Topic (22)
#1747 From: Fi a <im_fi@...>
Date: Wed Apr 29, 2009 12:46 am
Subject: Re: Need to vent and an opinion 		im_fi
Offline Offline
Send Email Send Email
 
Outside Chicago here....anyone else? 
 
Fidela


From: Genene Grant <g.genene@...>
To: Trimethylaminuria@yahoogroups.com
Sent: Tuesday, April 28, 2009 7:19:28 PM
Subject: Re: [Trimethylaminuria] Need to vent and an opinion

there is a person or people in new york with our promblem i know its a tmau foundation in new york city i had the number got it from the monell center

From: Dee brown <delobrown11224@ yahoo.com>
To: Trimethylaminuria@ yahoogroups. com
Sent: Tuesday, April 28, 2009 2:19:58 PM
Subject: Re: [Trimethylaminuria] Need to vent and an opinion

sounds like me. I haven't heard from anyone in new york.so Im asking again is there anyone in new york with this problem also?.

DELO
I GIVE MYSELF ROSES

--- On Mon, 4/27/09, Genene Grant <g.genene@yahoo. com> wrote:

From: Genene Grant <g.genene@yahoo. com>
Subject: Re: [Trimethylaminuria] Need to vent and an opinion
To: Trimethylaminuria@ yahoogroups. com
Date: Monday, April 27, 2009, 7:09 AM

did you find anyone who live near you, im in cleveland ohio, i have not found anyone who stay near me

From: Katrina Jackson <jacksonhodge@ yahoo.com>
To: Trimethylaminuria@ yahoogroups. com
Sent: Sunday, April 26, 2009 3:50:15 PM
Subject: Re: [Trimethylaminuria] Need to vent and an opinion

I live in the Washington, DC metropolitan area "DMV"

--- On Sun, 4/26/09, Genene Grant <g.genene@yahoo. com> wrote:

From: Genene Grant <g.genene@yahoo. com>
Subject: Re: [Trimethylaminuria] Need to vent and an opinion
To: Trimethylaminuria@ yahoogroups. com
Date: Sunday, April 26, 2009, 6:09 PM

your so strong and i hope they stop for their sake, this condition is really bad for us ,i wish they come up with a pill or something this does hurt where do you live

From: theresa hoskins-ford <thosford43@sbcgloba l..net>
To: Trimethylaminuria@ yahoogroups. com
Sent: Saturday, April 25, 2009 3:59:04 PM
Subject: Re: [Trimethylaminuria] Need to vent and an opinion

Hi Jacksonhodge,
 
I'm going through a situation at my job where i believe someone is actually spraying something around my workspace to make it smell all the time.  I always have fbb and it gets really bad every three months or so.  My workspace smells really bad then (I assume I can't smell it).  So anyway, whatever this is I can smell it, so I know it not me!!!  I believe this person is doing this to get me moved away from her office.  The funny part is I work with attorneys, she is not one, the people on my "team" don't bother me too much.  Other than the usual sniffing or coughing and comments behind my back, they don't even talk to me unless they have too.  Which for the most part is okay with me. 
 
I plan to document everything from this point on.  I will start getting copies of all my medical and therapy records together just to have them on hand.  I plan on consulting with an attorney first thing Monday just to get an understanding as to what my options are.  And like you I will be talking to my union also. 
 
I believe my "team" does not bother me because they know me well enough to know that I will sue their a** and the city and not think twice about it. 
 
I have a problem that I have no control over, talking about me behind my back is one thing (sure it hurts sometimes), but when you think it's okay to start doing things like spraying something that smells almost like skunk in my workspace... that's completely different. 
 
It will be interesting to see what my space smells like on Monday, as I was very outspoken about what i believed was going on and who did it..  I'm not taking this.  You don't have to like me, but you will respect me.
 
I'll keep you posted!!  Hang in there.
 
Theresa
 
 
 
 
 


--- On Fri, 4/24/09, jacksonhodge <jacksonhodge@ yahoo..com> wrote:
From: jacksonhodge <jacksonhodge@ yahoo.com>
Subject: [Trimethylaminuria] Need to vent and an opinion
To: Trimethylaminuria@ yahoogroups. com
Date: Friday, April 24, 2009, 5:11 PM



Hi All

I tried to post earlier today when I was so frustrated about an incident that happened. While I was writing my post and just about finished I tried to read over it and make some corrections and somehow deleted the post.

First of all I've been a member of this group and the body odor group on msn groups for awhile. I have not post on this group but I read the post especially when I'm down.

I work for the public school system for 21 years. The last elementary school I worked at for 8 years (as the administrative assistant) is when I discovered I had this odor condition.

Due to budget cuts and school closings that school closed. Of course I would see the occasional frowns or the quick wipe of the nose but they respect me and would still include me and talked to me. They also knew how dependable and hard working I am.

The beginning of this school year I was placed at an Elementary School that was in transition meaning all the staff was replaced with new staff because the school didn't meet any of its targets. Test scores were down, the attendance was down etc. and we have three years for improvements.

Anyway, when I started the school I was introduced to the other office worker as the administrative assistant (public relation) an in-house position. I was told that she was a friend of the principal/superviso r and she was a substitute at another school. I was also told that I would be the main person in the office and that she had no experience, and she is to deal with the public and to help her in any way that I could.

The following week I decided to go to the supervisor and the "Public Relation person "and tell them about my condition and that I was working on it but some days it might be unbearable.

Later, I tried to give her small assignments to help out the office and me really but she would never complete them. She would answer the phones when she felt like it. Leave the office when she didn't want to deal with visitors, parents or students and I would just pick up where she left off because
1). I have a daughter in college and I need to work
2). I'm afraid that at any time I might be out of my job because of my condition.

During the year I notice that she is the ears and eyes for the supervisor and is part responsible for the school nurse being involuntary transferred to another school. She is also partly responsible for the constant gossip around the school.

Two week ago, I don't know exactly what happened but I do know she came in the office very upset and when I asked her what happened she was very abrupt and harsh with me. She then filled out a leave slip and left the job. I was stunned and a little embarrassed because this was done in front of others (teachers and office staff).

I later decided that I would just be cordial with this person and that was it.
The following Monday morning I speak and go on with my routine of preparing the office for the morning. The whole day the office is quiet as a matter of fact the whole week the office is quiet.

This week I noticed a lot of little childish games being played. Like instead of telling me I have a phone call she is transferring the calls to my phone. (our desks are two foot steps away). Purposely putting people on hold that ask for me and not telling me. Putting her assignments on my desk..

And a lot of whispering and laughing out loud with other co-workers about how HOT it is in here, I went to the supervisor and he said we need to have a meeting but we have not had one yet.

I'm sorry that this is so long but this is what had me so frustrated.

Today I take off from work to pick my daughter up from college (summer break) and I get a call from work.

I was told that they need to get into some files that I maintain and the files were locked. I told them that I had the keys and didn't understand what the urgency was that it can't wait until Monday.

Later the principal/superviso r calls me and says he needs the files opened and I know for a fact that this woman had something to do with this.
I'm about to get on the road. It takes 5 hours to get my daughter and I had planned to beat the traffic coming back. I take the keys to work an hour out of my way and on the way back I call my union rep. because I believe I need to have my odor condition documented and I fell like I'm the next target.

Please advise? Are these feelings valid? Am I making too much of this?

I'm sorry for the long post
Thanks for listening.








Reply | Forward | Messages in this Topic (17)
#1745 From: Kandyce August <kween_of_klubs@...>
Date: Wed Apr 29, 2009 12:35 am
Subject: Soybean, Soy Oil, Soy Sauce, Soy Lechtin, Soya and all its other names.. 		kween_of_klubs
Offline Offline
Send Email Send Email
 
I'm having the hardest time eliminating soy
it is in EVERYTHING!!
any tips on how to avoid this?
Is there maybe a product line of foods that specialize in NOT using this ingredient?
 
Kandyce?

From: bobbi francis <annhenry99@...>
To: Trimethylaminuria@yahoogroups.com
Sent: Saturday, April 18, 2009 9:11:20 AM
Subject: Re: [Trimethylaminuria] My First Post....

Dear Mom,
 
I can guarantee you that every single person here will stand up with you, and for you. Your daughter is the epitome of what we are trying to prevent. You and your family will have to make a lot of adjustments to your life but, once the family gets a better understanding and accepts the new regulations, she will become more accepting of herself.
The first thing (that I advise) you should do is get her tested. In the meantime, she will need to make dietary changes. The easiest way to "understand" a low choline diet is to know what and when a certain food is in her system - what are the smells.
If it makes her have bloating, hiccups, indigestion or rectal gas - it will make her smell.
I find for kids it is easier to adopt an all fruit program until they get a handle on what the no-no foods for them are.
Immediately cut out:
 
Soy based foods
Wheat and gluten's (I don't know of anyone here who does not have an issue with these)
Use white flour products instead of brown
White rice if she is really hungry (you will need to eat a lot of fruit to stay full)
Avoid meats (not necessarily forever - just to start)
Eat all meals at home. (not forever)
Drink as much water as possible. Have a daily routine of exercise.
 
This is just a start. There are many people here that will add to this list and many people who may even come and hold her hand or talk to her.
 
We are everywhere and she is not alone. 
 
Your name will help (in case we are needed to help you).
 
NARA/BOSS in metro Atlanta
bobbi 
  
Let us put a Happy face on your living space today.

--- On Sat, 4/18/09, tizodataol <Tizod@...> wrote:

From: tizodataol <Tizod@...>
Subject: [Trimethylaminuria] My First Post....
To: Trimethylaminuria@ yahoogroups. com
Date: Saturday, April 18, 2009, 12:24 AM

Hi :) I've been reading the posts and the files for quite awhile. This is my first post to the group.
I have a 12 yr old daughter whom , I believe has TMUA. She struggles with the smell evryday. We have tried so many things to help control the foul odor. She showers SEVERAL times a day (rinses in cold water to help close pores), uses a high PH soap, cleans her underarms with alcohol(to kill bacteria) and then applies anti-persperant/ deodorant. Nothing helps! Within minutes of showering she can smell like a rotten onion. The smell is so strong at times that it brings tears to my eyes.She never has a fishy smell. She smells like STRONG onion or garlic or at worst like rotten onion/garlic.
The school has called childrens protective services 3 times this school year alone. I have told them she has an issue that we are TRYING to control. They INSIST that we are just dirty people and that my child doesn't shower and wear clean clothes . I am my wits end. I can't stand to see her suffer like this! I am looking into home schooling next year.She is already far behind in school.She misses too much school because she can't take the teasing and accusations.
Thanks for reading! I really needed to vent!

Mom to a sufferer



Reply | Forward | Messages in this Topic (22)
#1744 From: Kandyce August <kween_of_klubs@...>
Date: Wed Apr 29, 2009 12:29 am
Subject: Re: Re: diet for trimethylaminuria 		kween_of_klubs
Offline Offline
Send Email Send Email
 
potatoes are starchy which turns to sugar in the body
sugar has been said by many to cuase problems
maybe thats the connection...?

From: bobbi francis <annhenry99@...>
To: Trimethylaminuria@yahoogroups.com
Sent: Monday, April 27, 2009 2:22:34 PM
Subject: Re: [Trimethylaminuria] Re: diet for trimethylaminuria

No potatoes? Check that one again - but then it could be a food combo-tolerant item like
no beans but okay with rice.
 
Sweet and white potatoes are okay but not with any type of meat.
All vegetables must be cooked. (even steam the romaine for a few seconds in the microwave).
 
Chow down on the sweet potatoes. Somebody sent in a sweet potato cookie recipe that I adore.
 
b
 
 

Let us put a Happy face on your living space today.

--- On Mon, 4/27/09, stayc <stayc_1974@yahoo. com> wrote:

From: stayc <stayc_1974@yahoo. com>
Subject: [Trimethylaminuria] Re: diet for trimethylaminuria
To: Trimethylaminuria@ yahoogroups. com
Date: Monday, April 27, 2009, 11:22 AM

how about sweet potatoes and dannon activia.
>
> dairy is one of the big no nos, no alcohol, no smoking, no onions or garlic, no potatoes,
> most fruits n veggies are good
> >
>



Reply | Forward | Messages in this Topic (15)
#1743 From: Genene Grant <g.genene@...>
Date: Wed Apr 29, 2009 12:19 am
Subject: Re: Need to vent and an opinion 		g.genene
Offline Offline
Send Email Send Email
 
there is a person or people in new york with our promblem i know its a tmau foundation in new york city i had the number got it from the monell center

From: Dee brown <delobrown11224@...>
To: Trimethylaminuria@yahoogroups.com
Sent: Tuesday, April 28, 2009 2:19:58 PM
Subject: Re: [Trimethylaminuria] Need to vent and an opinion

sounds like me. I haven't heard from anyone in new york.so Im asking again is there anyone in new york with this problem also?.

DELO
I GIVE MYSELF ROSES

--- On Mon, 4/27/09, Genene Grant <g.genene@yahoo. com> wrote:

From: Genene Grant <g.genene@yahoo. com>
Subject: Re: [Trimethylaminuria] Need to vent and an opinion
To: Trimethylaminuria@ yahoogroups. com
Date: Monday, April 27, 2009, 7:09 AM

did you find anyone who live near you, im in cleveland ohio, i have not found anyone who stay near me

From: Katrina Jackson <jacksonhodge@ yahoo.com>
To: Trimethylaminuria@ yahoogroups. com
Sent: Sunday, April 26, 2009 3:50:15 PM
Subject: Re: [Trimethylaminuria] Need to vent and an opinion

I live in the Washington, DC metropolitan area "DMV"

--- On Sun, 4/26/09, Genene Grant <g.genene@yahoo. com> wrote:

From: Genene Grant <g.genene@yahoo. com>
Subject: Re: [Trimethylaminuria] Need to vent and an opinion
To: Trimethylaminuria@ yahoogroups. com
Date: Sunday, April 26, 2009, 6:09 PM

your so strong and i hope they stop for their sake, this condition is really bad for us ,i wish they come up with a pill or something this does hurt where do you live

From: theresa hoskins-ford <thosford43@sbcgloba l..net>
To: Trimethylaminuria@ yahoogroups. com
Sent: Saturday, April 25, 2009 3:59:04 PM
Subject: Re: [Trimethylaminuria] Need to vent and an opinion

Hi Jacksonhodge,
 
I'm going through a situation at my job where i believe someone is actually spraying something around my workspace to make it smell all the time.  I always have fbb and it gets really bad every three months or so.  My workspace smells really bad then (I assume I can't smell it).  So anyway, whatever this is I can smell it, so I know it not me!!!  I believe this person is doing this to get me moved away from her office.  The funny part is I work with attorneys, she is not one, the people on my "team" don't bother me too much.  Other than the usual sniffing or coughing and comments behind my back, they don't even talk to me unless they have too.  Which for the most part is okay with me. 
 
I plan to document everything from this point on.  I will start getting copies of all my medical and therapy records together just to have them on hand.  I plan on consulting with an attorney first thing Monday just to get an understanding as to what my options are.  And like you I will be talking to my union also. 
 
I believe my "team" does not bother me because they know me well enough to know that I will sue their a** and the city and not think twice about it. 
 
I have a problem that I have no control over, talking about me behind my back is one thing (sure it hurts sometimes), but when you think it's okay to start doing things like spraying something that smells almost like skunk in my workspace... that's completely different. 
 
It will be interesting to see what my space smells like on Monday, as I was very outspoken about what i believed was going on and who did it..  I'm not taking this.  You don't have to like me, but you will respect me.
 
I'll keep you posted!!  Hang in there.
 
Theresa
 
 
 
 
 


--- On Fri, 4/24/09, jacksonhodge <jacksonhodge@ yahoo..com> wrote:
From: jacksonhodge <jacksonhodge@ yahoo.com>
Subject: [Trimethylaminuria] Need to vent and an opinion
To: Trimethylaminuria@ yahoogroups. com
Date: Friday, April 24, 2009, 5:11 PM



Hi All

I tried to post earlier today when I was so frustrated about an incident that happened. While I was writing my post and just about finished I tried to read over it and make some corrections and somehow deleted the post.

First of all I've been a member of this group and the body odor group on msn groups for awhile. I have not post on this group but I read the post especially when I'm down.

I work for the public school system for 21 years. The last elementary school I worked at for 8 years (as the administrative assistant) is when I discovered I had this odor condition.

Due to budget cuts and school closings that school closed. Of course I would see the occasional frowns or the quick wipe of the nose but they respect me and would still include me and talked to me. They also knew how dependable and hard working I am.

The beginning of this school year I was placed at an Elementary School that was in transition meaning all the staff was replaced with new staff because the school didn't meet any of its targets. Test scores were down, the attendance was down etc. and we have three years for improvements.

Anyway, when I started the school I was introduced to the other office worker as the administrative assistant (public relation) an in-house position. I was told that she was a friend of the principal/superviso r and she was a substitute at another school. I was also told that I would be the main person in the office and that she had no experience, and she is to deal with the public and to help her in any way that I could.

The following week I decided to go to the supervisor and the "Public Relation person "and tell them about my condition and that I was working on it but some days it might be unbearable.

Later, I tried to give her small assignments to help out the office and me really but she would never complete them. She would answer the phones when she felt like it. Leave the office when she didn't want to deal with visitors, parents or students and I would just pick up where she left off because
1). I have a daughter in college and I need to work
2). I'm afraid that at any time I might be out of my job because of my condition.

During the year I notice that she is the ears and eyes for the supervisor and is part responsible for the school nurse being involuntary transferred to another school. She is also partly responsible for the constant gossip around the school.

Two week ago, I don't know exactly what happened but I do know she came in the office very upset and when I asked her what happened she was very abrupt and harsh with me. She then filled out a leave slip and left the job. I was stunned and a little embarrassed because this was done in front of others (teachers and office staff).

I later decided that I would just be cordial with this person and that was it.
The following Monday morning I speak and go on with my routine of preparing the office for the morning. The whole day the office is quiet as a matter of fact the whole week the office is quiet.

This week I noticed a lot of little childish games being played. Like instead of telling me I have a phone call she is transferring the calls to my phone. (our desks are two foot steps away). Purposely putting people on hold that ask for me and not telling me. Putting her assignments on my desk..

And a lot of whispering and laughing out loud with other co-workers about how HOT it is in here, I went to the supervisor and he said we need to have a meeting but we have not had one yet.

I'm sorry that this is so long but this is what had me so frustrated.

Today I take off from work to pick my daughter up from college (summer break) and I get a call from work.

I was told that they need to get into some files that I maintain and the files were locked. I told them that I had the keys and didn't understand what the urgency was that it can't wait until Monday.

Later the principal/superviso r calls me and says he needs the files opened and I know for a fact that this woman had something to do with this.
I'm about to get on the road. It takes 5 hours to get my daughter and I had planned to beat the traffic coming back. I take the keys to work an hour out of my way and on the way back I call my union rep. because I believe I need to have my odor condition documented and I fell like I'm the next target.

Please advise? Are these feelings valid? Am I making too much of this?

I'm sorry for the long post
Thanks for listening.







Reply | Forward | Messages in this Topic (17)
#1742 From: sreymom chhoun <sreymom@...>
Date: Wed Apr 29, 2009 12:13 am
Subject: Re: My First Post.... 		ginachhoun
Offline Offline
Send Email Send Email
 
Hi tizodataol, I can relate to your daughter. When I eat anything that contains garlic or onions, I would smell musty or musky.  Make sure you read the ingredients, if it contains onions or garlic avoid it because even a little would make it worse.  FYI, ketchup contains onions. BTW, for me the smell can stay for 3 days until it goes away.  READ THOSE LABELS!! I hope it helps.

From: tizodataol <Tizod@...>
To: Trimethylaminuria@yahoogroups.com
Sent: Friday, April 17, 2009 9:24:57 PM
Subject: [Trimethylaminuria] My First Post....

Hi :) I've been reading the posts and the files for quite awhile. This is my first post to the group.
I have a 12 yr old daughter whom , I believe has TMUA. She struggles with the smell evryday. We have tried so many things to help control the foul odor. She showers SEVERAL times a day (rinses in cold water to help close pores), uses a high PH soap, cleans her underarms with alcohol(to kill bacteria) and then applies anti-persperant/ deodorant. Nothing helps! Within minutes of showering she can smell like a rotten onion. The smell is so strong at times that it brings tears to my eyes.She never has a fishy smell. She smells like STRONG onion or garlic or at worst like rotten onion/garlic.
The school has called childrens protective services 3 times this school year alone. I have told them she has an issue that we are TRYING to control. They INSIST that we are just dirty people and that my child doesn't shower and wear clean clothes . I am my wits end. I can't stand to see her suffer like this! I am looking into home schooling next year.She is already far behind in school.She misses too much school because she can't take the teasing and accusations.
Thanks for reading! I really needed to vent!

Mom to a sufferer


Reply | Forward | Messages in this Topic (22)
#1741 From: Dee brown <delobrown11224@...>
Date: Tue Apr 28, 2009 9:19 pm
Subject: Re: Need to vent and an opinion 		delobrown11224
Offline Offline
Send Email Send Email
 
sounds like me. I haven't heard from anyone in new york.so Im asking again is there anyone in new york with this problem also?.

DELO
I GIVE MYSELF ROSES

--- On Mon, 4/27/09, Genene Grant <g.genene@...> wrote:

From: Genene Grant <g.genene@...>
Subject: Re: [Trimethylaminuria] Need to vent and an opinion
To: Trimethylaminuria@yahoogroups.com
Date: Monday, April 27, 2009, 7:09 AM

did you find anyone who live near you, im in cleveland ohio, i have not found anyone who stay near me

From: Katrina Jackson <jacksonhodge@ yahoo.com>
To: Trimethylaminuria@ yahoogroups. com
Sent: Sunday, April 26, 2009 3:50:15 PM
Subject: Re: [Trimethylaminuria] Need to vent and an opinion

I live in the Washington, DC metropolitan area "DMV"

--- On Sun, 4/26/09, Genene Grant <g.genene@yahoo. com> wrote:

From: Genene Grant <g.genene@yahoo. com>
Subject: Re: [Trimethylaminuria] Need to vent and an opinion
To: Trimethylaminuria@ yahoogroups. com
Date: Sunday, April 26, 2009, 6:09 PM

your so strong and i hope they stop for their sake, this condition is really bad for us ,i wish they come up with a pill or something this does hurt where do you live

From: theresa hoskins-ford <thosford43@sbcgloba l..net>
To: Trimethylaminuria@ yahoogroups. com
Sent: Saturday, April 25, 2009 3:59:04 PM
Subject: Re: [Trimethylaminuria] Need to vent and an opinion

Hi Jacksonhodge,
 
I'm going through a situation at my job where i believe someone is actually spraying something around my workspace to make it smell all the time.  I always have fbb and it gets really bad every three months or so.  My workspace smells really bad then (I assume I can't smell it).  So anyway, whatever this is I can smell it, so I know it not me!!!  I believe this person is doing this to get me moved away from her office.  The funny part is I work with attorneys, she is not one, the people on my "team" don't bother me too much.  Other than the usual sniffing or coughing and comments behind my back, they don't even talk to me unless they have too.  Which for the most part is okay with me. 
 
I plan to document everything from this point on.  I will start getting copies of all my medical and therapy records together just to have them on hand.  I plan on consulting with an attorney first thing Monday just to get an understanding as to what my options are.  And like you I will be talking to my union also. 
 
I believe my "team" does not bother me because they know me well enough to know that I will sue their a** and the city and not think twice about it. 
 
I have a problem that I have no control over, talking about me behind my back is one thing (sure it hurts sometimes), but when you think it's okay to start doing things like spraying something that smells almost like skunk in my workspace... that's completely different. 
 
It will be interesting to see what my space smells like on Monday, as I was very outspoken about what i believed was going on and who did it..  I'm not taking this.  You don't have to like me, but you will respect me.
 
I'll keep you posted!!  Hang in there.
 
Theresa
 
 
 
 
 


--- On Fri, 4/24/09, jacksonhodge <jacksonhodge@ yahoo..com> wrote:
From: jacksonhodge <jacksonhodge@ yahoo.com>
Subject: [Trimethylaminuria] Need to vent and an opinion
To: Trimethylaminuria@ yahoogroups. com
Date: Friday, April 24, 2009, 5:11 PM



Hi All

I tried to post earlier today when I was so frustrated about an incident that happened. While I was writing my post and just about finished I tried to read over it and make some corrections and somehow deleted the post.

First of all I've been a member of this group and the body odor group on msn groups for awhile. I have not post on this group but I read the post especially when I'm down.

I work for the public school system for 21 years. The last elementary school I worked at for 8 years (as the administrative assistant) is when I discovered I had this odor condition.

Due to budget cuts and school closings that school closed. Of course I would see the occasional frowns or the quick wipe of the nose but they respect me and would still include me and talked to me. They also knew how dependable and hard working I am.

The beginning of this school year I was placed at an Elementary School that was in transition meaning all the staff was replaced with new staff because the school didn't meet any of its targets. Test scores were down, the attendance was down etc. and we have three years for improvements.

Anyway, when I started the school I was introduced to the other office worker as the administrative assistant (public relation) an in-house position. I was told that she was a friend of the principal/superviso r and she was a substitute at another school. I was also told that I would be the main person in the office and that she had no experience, and she is to deal with the public and to help her in any way that I could.

The following week I decided to go to the supervisor and the "Public Relation person "and tell them about my condition and that I was working on it but some days it might be unbearable.

Later, I tried to give her small assignments to help out the office and me really but she would never complete them. She would answer the phones when she felt like it. Leave the office when she didn't want to deal with visitors, parents or students and I would just pick up where she left off because
1). I have a daughter in college and I need to work
2). I'm afraid that at any time I might be out of my job because of my condition.

During the year I notice that she is the ears and eyes for the supervisor and is part responsible for the school nurse being involuntary transferred to another school. She is also partly responsible for the constant gossip around the school.

Two week ago, I don't know exactly what happened but I do know she came in the office very upset and when I asked her what happened she was very abrupt and harsh with me. She then filled out a leave slip and left the job. I was stunned and a little embarrassed because this was done in front of others (teachers and office staff).

I later decided that I would just be cordial with this person and that was it.
The following Monday morning I speak and go on with my routine of preparing the office for the morning. The whole day the office is quiet as a matter of fact the whole week the office is quiet.

This week I noticed a lot of little childish games being played. Like instead of telling me I have a phone call she is transferring the calls to my phone. (our desks are two foot steps away). Purposely putting people on hold that ask for me and not telling me. Putting her assignments on my desk..

And a lot of whispering and laughing out loud with other co-workers about how HOT it is in here, I went to the supervisor and he said we need to have a meeting but we have not had one yet.

I'm sorry that this is so long but this is what had me so frustrated.

Today I take off from work to pick my daughter up from college (summer break) and I get a call from work.

I was told that they need to get into some files that I maintain and the files were locked. I told them that I had the keys and didn't understand what the urgency was that it can't wait until Monday.

Later the principal/superviso r calls me and says he needs the files opened and I know for a fact that this woman had something to do with this.
I'm about to get on the road. It takes 5 hours to get my daughter and I had planned to beat the traffic coming back. I take the keys to work an hour out of my way and on the way back I call my union rep. because I believe I need to have my odor condition documented and I fell like I'm the next target.

Please advise? Are these feelings valid? Am I making too much of this?

I'm sorry for the long post
Thanks for listening.






Reply | Forward | Messages in this Topic (17)
#1740 From: Genene Grant <g.genene@...>
Date: Tue Apr 28, 2009 2:50 pm
Subject: Re: Re: need help with a career 		g.genene
Offline Offline
Send Email Send Email
 
you would think in college people would act more mature than that but i understand how you feel and i pray you get a job as well, i tell you they treat this condition worse than anything i can think of stay strong

From: Kevin Claxton <stash_box83@...>
To: Trimethylaminuria@yahoogroups.com
Sent: Monday, April 27, 2009 9:32:21 PM
Subject: Re: [Trimethylaminuria] Re: need help with a career

no i did not tell anybody about my condition .i sit in class and hear people talk about me all the time it's hard not to snap and just punch them in the face,not that i am the violent type but i know you people hear all kinda mean comments that just makes you want to flip.worse thing is having to talk in front of class with people doing stuff like wiping their nose and coughing,and fan their self in front of me.sometimes i have to drink alittle to talk in front of the class.with all this hell i get in school i just really hope i get a job out of this college stuff because it's been hell.

From: Genene Grant <g.genene@yahoo. com>
To: Trimethylaminuria@ yahoogroups. com
Sent: Sunday, April 26, 2009 5:04:39 PM
Subject: Re: [Trimethylaminuria] Re: need help with a career

your strong its hard to go to college and sit in front of your classmate and be judged did you tell them you had this condition

From: k1llahd <k1llahd@yahoo. com>
To: Trimethylaminuria@ yahoogroups. com
Sent: Sunday, April 26, 2009 8:14:59 AM
Subject: [Trimethylaminuria] Re: need help with a career

--- In Trimethylaminuria@ yahoogroups. com, Kevin Claxton <stash_box83@ ...> wrote:
>
> Because my condition i wonder if it will be hard to find a job when i leave college??
>

I don't think it will be much more difficult than finishing school which you should feel very proud of. I worked for several years after school (I am back in school now) and I didn't find the career search to be any more diffcult than it was for my other friends, I actually was the first to find one. Of course work and pretty much everything is going to be a bit more difficult for us but its not impossible. Good luck.





Reply | Forward | Messages in this Topic (5)
#1739 From: sreymom chhoun <sreymom@...>
Date: Tue Apr 28, 2009 6:13 am
Subject: Re: HELLO EVERYONE 		ginachhoun
Offline Offline
Send Email Send Email
 
Are you the one from the show? I live about 40 minutes away from you. We should get to know one another.
 
Take care,
Gina

From: kemetian43 <kemetian43@...>
To: Trimethylaminuria@yahoogroups.com
Sent: Friday, April 3, 2009 11:31:46 AM
Subject: [Trimethylaminuria] HELLO EVERYONE

My name is cheryl, i live in the state of california,, ,i would just like to extend my hand out and greet each and everyone of you...I wish we could have met on different circumstances, but nevertheless, hello to each and everyone of you. Im in the capitol of sacramento so if anyone is in that area, i am trying to get a support group going and would love to have you. Feel free to call anytime, im homebound, i cant leave my home i smell so bad. So i am always here. 24/7 (916-344-5849) call me anytime you will always have a friend here


Reply | Forward | Messages in this Topic (4)
#1738 From: Kevin Claxton <stash_box83@...>
Date: Tue Apr 28, 2009 4:32 am
Subject: Re: Re: need help with a career 		stash_box83
Offline Offline
Send Email Send Email
 
no i did not tell anybody about my condition .i sit in class and hear people talk about me all the time it's hard not to snap and just punch them in the face,not that i am the violent type but i know you people hear all kinda mean comments that just makes you want to flip.worse thing is having to talk in front of class with people doing stuff like wiping their nose and coughing,and fan their self in front of me.sometimes i have to drink alittle to talk in front of the class.with all this hell i get in school i just really hope i get a job out of this college stuff because it's been hell.

From: Genene Grant <g.genene@...>
To: Trimethylaminuria@yahoogroups.com
Sent: Sunday, April 26, 2009 5:04:39 PM
Subject: Re: [Trimethylaminuria] Re: need help with a career

your strong its hard to go to college and sit in front of your classmate and be judged did you tell them you had this condition

From: k1llahd <k1llahd@yahoo. com>
To: Trimethylaminuria@ yahoogroups. com
Sent: Sunday, April 26, 2009 8:14:59 AM
Subject: [Trimethylaminuria] Re: need help with a career

--- In Trimethylaminuria@ yahoogroups. com, Kevin Claxton <stash_box83@ ...> wrote:
>
> Because my condition i wonder if it will be hard to find a job when i leave college??
>

I don't think it will be much more difficult than finishing school which you should feel very proud of. I worked for several years after school (I am back in school now) and I didn't find the career search to be any more diffcult than it was for my other friends, I actually was the first to find one. Of course work and pretty much everything is going to be a bit more difficult for us but its not impossible. Good luck.




Reply | Forward | Messages in this Topic (5)
#1737 From: Fi a <im_fi@...>
Date: Mon Apr 27, 2009 11:54 pm
Subject: Re: Need to vent and an opinion 		im_fi
Offline Offline
Send Email Send Email
 
Thank you Robert....I'd love to talk some more if you'd care too....just drop me a line to my personal email.  I'm new at this group thing and I'm anxious to hear more from anyone and compare stories. 
 
I feel like the castaway in the Police's song, "Message in a bottle"...The line "seems I'm not alone in being alone" mirrors how I was feeling when I found this group.
 
Living with this is not easy but it brings some comfort knowing I'm NOT alone.
 
I'm not big on religion but I'm a firm believer that without God's blessings, I would not be able to function every day. 
 
God bless!!
Fidela


From: Robert <brovens@...>
To: Trimethylaminuria@yahoogroups.com
Sent: Monday, April 27, 2009 6:41:40 AM
Subject: RE: [Trimethylaminuria] Need to vent and an opinion

Dear Fidela

 

I know you addressed your post to the ladies but I couldnā€™t help admiring your spirit and want to congratulate you and welcome you. You wrote: I feel like an embarrassment to women, to my race (mexican-american) , my sexuality (lesbian) and at times to my mom. 

I used to feel a lot of those things too. I am a gay man of partly indigenous race who has had this rotten disorder since birth. It has not been easy but, like you, I have survived and am determined to go on surviving.

 

So congratulations and be welcome.

 

Rob

Australia Trimethylaminuria Foundation

 

From: Trimethylaminuria@ yahoogroups. com [mailto: Trimethylaminuria@ yahoogroups. com ] On Behalf Of Fi a
Sent: Monday, 27 April 2009 10:58 AM
To: Trimethylaminuria@ yahoogroups. com
Subject: Re: [Trimethylaminuria] Need to vent and an opinion

 




Ladies,

 

Thank you for sharing your stories.  There are days I struggle to find the strength and courage to face another day at work or just to embrace whatever is waiting for me outside my home.  I go to work because I have too, plus I have a good work ethic and the thought of having to depend on anyone else is just out of the question.  I often think as women, we take on so much and don't really give ourselves credit for who we are and how incredible we are.  Not trying to exclude men or make them less important but women have to work twice as hard, even in today's society.

 

Living with this for 12 years (maybe longer) not knowing what was wrong with me, thinking I was a freak of nature for long has been SO hard.  Yet, I see ppl that are wheel chair bound, or barely living still fighting for their next breath and I think how blessed I am, I should be ashamed feeling sorry for myself.  Yet, it's hard to hold up my head.  I feel like an embarrassment to women, to my race (mexican-american) , my sexuality (lesbian) and at times to my mom.  It's hard to juggle all this guilt everyday so I try to be the best me I can everyday, to try to feel deserving of my life that sometimes feels like a prison. 

 

Last year at this time, the info about TMAU was scarce so I pretended I never stumbled across the Primetime program that gave my condition a name.  Recently while cleaning out my favorites, I came across the websites I found last year about TMAU and revisited them and did some more research.  I found this group and after adding myself last week, I'm excited to hear anything from anyone.  I'm taking a different approach, trying to have a better attitude and learn to fight this instead of give into it. 

 

You ladies and men have no idea how appreciative I am that you allow yourselves to share your stories.  You not only give info and updates, you give hope, make ppl believe and help ppl begin to dream again....I know you done that for me. I'm anxious to get started and although I hope for the best, I try to prepared for the worst...I live by those words.

 

Thank you.....thank you from the bottom of my heart & soul!!

 

God bless you all!!!

 

Fidela

 

 

From: theresa hoskins-ford <thosford43@sbcgloba l.net>
To: Trimethylaminuria@ yahoogroups. com
Sent: Saturday, April 25, 2009 5:59:04 PM
Subject: Re: [Trimethylaminuria] Need to vent and an opinion

Hi Jacksonhodge,

 

I'm going through a situation at my job where i believe someone is actually spraying something around my workspace to make it smell all the time.  I always have fbb and it gets really bad every three months or so.  My workspace smells really bad then (I assume I can't smell it).  So anyway, whatever this is I can smell it, so I know it not me!!!  I believe this person is doing this to get me moved away from her office.  The funny part is I work with attorneys, she is not one, the people on my "team" don't bother me too much.  Other than the usual sniffing or coughing and comments behind my back, they don't even talk to me unless they have too.  Which for the most part is okay with me. 

 

I plan to document everything from this point on.  I will start getting copies of all my medical and therapy records together just to have them on hand.  I plan on consulting with an attorney first thing Monday just to get an understanding as to what my options are.  And like you I will be talking to my union also. 

 

I believe my "team" does not bother me because they know me well enough to know that I will sue their a** and the city and not think twice about it. 

 

I have a problem that I have no control over, talking about me behind my back is one thing (sure it hurts sometimes), but when you think it's okay to start doing things like spraying something that smells almost like skunk in my workspace... that's completely different. 

 

It will be interesting to see what my space smells like on Monday, as I was very outspoken about what i believed was going on and who did it.  I'm not taking this.  You don't have to like me, but you will respect me.

 

I'll keep you posted!!  Hang in there.

 

Theresa

 

 

 

 

 



--- On Fri, 4/24/09, jacksonhodge <jacksonhodge@ yahoo.com> wrote:

From: jacksonhodge <jacksonhodge@ yahoo.com>
Subject: [Trimethylaminuria] Need to vent and an opinion
To: Trimethylaminuria@ yahoogroups. com
Date: Friday, April 24, 2009, 5:11 PM



Hi All

I tried to post earlier today when I was so frustrated about an incident that happened. While I was writing my post and just about finished I tried to read over it and make some corrections and somehow deleted the post.

First of all I've been a member of this group and the body odor group on msn groups for awhile. I have not post on this group but I read the post especially when I'm down.

I work for the public school system for 21 years. The last elementary school I worked at for 8 years (as the administrative assistant) is when I discovered I had this odor condition.

Due to budget cuts and school closings that school closed. Of course I would see the occasional frowns or the quick wipe of the nose but they respect me and would still include me and talked to me. They also knew how dependable and hard working I am.

The beginning of this school year I was placed at an Elementary School that was in transition meaning all the staff was replaced with new staff because the school didn't meet any of its targets. Test scores were down, the attendance was down etc. and we have three years for improvements.

Anyway, when I started the school I was introduced to the other office worker as the administrative assistant (public relation) an in-house position. I was told that she was a friend of the principal/superviso r and she was a substitute at another school. I was also told that I would be the main person in the office and that she had no experience, and she is to deal with the public and to help her in any way that I could.

The following week I decided to go to the supervisor and the "Public Relation person "and tell them about my condition and that I was working on it but some days it might be unbearable.

Later, I tried to give her small assignments to help out the office and me really but she would never complete them. She would answer the phones when she felt like it. Leave the office when she didn't want to deal with visitors, parents or students and I would just pick up where she left off because
1). I have a daughter in college and I need to work
2). I'm afraid that at any time I might be out of my job because of my condition.

During the year I notice that she is the ears and eyes for the supervisor and is part responsible for the school nurse being involuntary transferred to another school. She is also partly responsible for the constant gossip around the school.

Two week ago, I don't know exactly what happened but I do know she came in the office very upset and when I asked her what happened she was very abrupt and harsh with me. She then filled out a leave slip and left the job. I was stunned and a little embarrassed because this was done in front of others (teachers and office staff).

I later decided that I would just be cordial with this person and that was it.
The following Monday morning I speak and go on with my routine of preparing the office for the morning. The whole day the office is quiet as a matter of fact the whole week the office is quiet.

This week I noticed a lot of little childish games being played. Like instead of telling me I have a phone call she is transferring the calls to my phone. (our desks are two foot steps away). Purposely putting people on hold that ask for me and not telling me. Putting her assignments on my desk..

And a lot of whispering and laughing out loud with other co-workers about how HOT it is in here, I went to the supervisor and he said we need to have a meeting but we have not had one yet.

I'm sorry that this is so long but this is what had me so frustrated.

Today I take off from work to pick my daughter up from college (summer break) and I get a call from work.

I was told that they need to get into some files that I maintain and the files were locked. I told them that I had the keys and didn't understand what the urgency was that it can't wait until Monday.

Later the principal/superviso r calls me and says he needs the files opened and I know for a fact that this woman had something to do with this.
I'm about to get on the road. It takes 5 hours to get my daughter and I had planned to beat the traffic coming back. I take the keys to work an hour out of my way and on the way back I call my union rep. because I believe I need to have my odor condition documented and I fell like I'm the next target.

Please advise? Are these feelings valid? Am I making too much of this?

I'm sorry for the long post
Thanks for listening.

 



Reply | Forward | Messages in this Topic (17)
#1736 From: <chanley13@...>
Date: Mon Apr 27, 2009 11:18 pm
Subject: Re: Re: diet for trimethylaminuria 		shania7435
Offline Offline
Send Email Send Email
  
I believe you're incorrect in saying to all veggies must be cooked.

---- bobbi francis <annhenry99@...> wrote:
> No potatoes? Check that one again - but then it could be a food
combo-tolerantĀ item like
> no beans but okay with rice.
> Ā 
> Sweet and white potatoes are okay but not with any type of meat.
> All vegetables must be cooked. (even steam the romaine for a few seconds in
the microwave).
> Ā 
> Chow down on the sweet potatoes. Somebody sent in a sweet potato cookie recipe
that I adore.
> Ā 
> b
> Ā 
> Ā 
>
> Let us put a Happy face on your living space today.
>
> --- On Mon, 4/27/09, stayc <stayc_1974@...> wrote:
>
>
> From: stayc <stayc_1974@...>
> Subject: [Trimethylaminuria] Re: diet for trimethylaminuria
> To: Trimethylaminuria@yahoogroups.com
> Date: Monday, April 27, 2009, 11:22 AM
>
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> how about sweet potatoes and dannon activia.
> >
> > dairy is one of the big no nos, no alcohol, no smoking, no onions or garlic,
no potatoes,
> > most fruits n veggies are good
> > >
> >
>
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