Are the reactions you get this bad?

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Re: Are the reactions you get this bad?

Postby smelly » Wed Dec 15, 2010 1:53 pm

:x :x :x

I wish I had been there for you Lyndsey, they would have been left in pieces......

...but its difficult to react the right way when its yourself thats being attacked, because its too much to deal with at one time. I find the fact that I cant smell this odour is the real problem in reacting well at the time of the incident, because you are suprised and knocked off balance by the sudden negative reaction thats directed at you. if you could smell it or there was some physical feeeling associated with it you could get your act together and be prepared for the onslaught with a pre-arranged speil about it being a medical condition etc. I suppose we dont react how the aggressors expect us to, so they increase the vitriol to teach us a lesson.

I myself avoid all of these crowded situations now, just to give myself some relief form the confrontations. However, avoiding people also removes the contact with decent people who can give positive reactions, so its a double edged sword.....

I hope it was just the extreme holiday diet you were eating that caused the odour and you have generally got it under control (I am persevering with the sugar theory you put me onto to :) )
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Re: Are the reactions you get this bad?

Postby SmellyKelly2 » Wed Dec 15, 2010 2:07 pm

Hi Lyndsey
So sorry to hear about your reactions. Hope you managed to enjoy some of the holiday still.
It never seems to get any easier at times.
I was in Asda last week helping mum with her shopping. She went to get some more stuff.
I heard another cashier say 'its horrible if she worked here we would sack her'.
This reduced me to tears when I got home as hit a raw nerve.
I gave up my really good job after 21 years of hard work because of this illness (resigned as could not take the cruel comments anymore).
It is so hard, none of family can smell me either.
SK
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Re: Are the reactions you get this bad?

Postby flower » Wed Dec 15, 2010 9:22 pm

Hey Lindsay

I have been thinking about the situation of you on the plane...
And I feel a little bit down too by reading this....
I have my periods this week and I have eaten a lot of forbidden foods too
I think things going worse this week
I just can feel it
I opened the window in my office today a few times
just because I think everyone can smell me but I can t myself
Today my collegue wasnt there so I can do this.
But it is freezing outside today and snowing today....
I just take a bath today after work and relax and going back on a diet again...
i think I must find out a real treatment to manage this otherwise I can t go on like this....
It is so difficult for me to eat not the forbidden things...
But we must just go on and than we can manage to live the life that we really want
But at the moment too I realise again I must working on this everyday...
Sometimes I forget I have this condition and start to eat again a lot of forbidden things...
But we all will having bad days.... I think I must take my free days on my periods
I am working only 19 hours a week ....but that is not going I suppose....
I am glad that we can give support to each other when we have a bad day too.

And I hope there will be good times coming soon too for you...
And I hope the good days will be more often come than the bad days...
....so that we can left the bad days behind us.....

Take care

Flower
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Re: Are the reactions you get this bad?

Postby lyndsey » Thu Dec 16, 2010 5:42 am

Hi Lisa, Smelly, SK, Flower

Thanks so much for all your support it was much needed and appreciated I just love this forum. I too would have been raging if it was any of you and said something to this ignorant people, but as you say smelly its hard when its you being attacked I am going to learn to stand up for myself, because I am sick of people being so rude. One thing it has shown me is what good caring children I have because they would never have done something like that on the flight to annoy another human being. Smelly before holiday was getting my odour well under control and it has settled back down again in only a day without sugar, although my stomach still not good think Ill need a visit to docs.

I know I cant avoid crowded areas and I did have some laughs on holiday with my daughter. I have my chin up again because of you all and hope I can support you when you having a bad day.

Take care all of you

Lyndsey x
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Re: Are the reactions you get this bad?

Postby crazyinCA » Thu Dec 16, 2010 8:42 pm

Lyndsey,

It is terrible how you were treated on the plane! I know all about kids making fart noises. I'm a teacher and my students do it all the time. I just say, "That isn't nice and you are not a baby so stop making gross noises." Little by little it is easing up. A lot of the kids are "on my side" now and if they hear someone do it they will say, "Stop making baby noises!" So now it is embarrassing for them. Hah!

I was in a staff meeting yesterday and we were having our annual Sexual Harassment / Child Abuse meeting. The principal and school counselor went on with their slide show and talking points. They got to NEGLECT (as one form of child abuse) and one of the warning signs was body odor / dirty / stinky. They said that if we have a student that is stinky on a regular basis we should report it as possible abuse. They reminded us that as teachers we are state mandated reporters. Failure to report could result in fines of up to $1,000 and/or up to 6 months in jail. Not to mention we could lose our job and teaching credential forever. BUT... what about kids with TMAU? I've read on other forums where people have had to homeschool their child because he/she has TMAU and yet the school continues to report the family to the authorities on suspicion of neglect. Now, I'm sitting in this meeting... stinking... at least 3 teachers near me were covering their noses. One teacher was even holding his breath off and on. I WANTED TO EDUCATE THAT ROOM OF TEACHERS SO BAD! I wanted to speak up and say, "It could be a genetic disorder!" But I just sat their quietly. A few teacher friends know that I have been diagnosed with TMAU, but coming out to the entire staff... I dunno if I'm strong enough to do that. SK is right though... we should just politely say "I'm sorry if I offend you. I have TMAU. Do you know what that is?" Then go on explaining that our liver doesn't properly break down choline because we are missing an enzyme in our liver and that ALL FOODS have choline. Also, our brain NEEDS choline to function properly so therefore cutting choline out of the diet completely by living on... I don't know water alone?.... wouldn't work either.

Ugh. You know I keep trying to stay positive. I keep reminding myself that their are others in worse situations (terminal illness, loss of hair due to chemo, etc, etc...) but this is a journey NOBODY can understand unless they have walked in our shoes. And to hear from SO MANY friends and family, even with a POSITIVE TEST RESULT, "it's in your head. I've never smelled anything and I have a very sensitive nose...." Ugh!!!!!!!!!!!!!! Why can't they just try to understand?

I'd like to hear your sugar theory if you ever get a chance since I must've missed it.
I was VERY STINKY yesterday... even took a shower before bed again but just minutes after toweling off PEW again! So frustrating!! I couldn't figure out why I was so stinky. Then I thought about all the cookies I had eaten the day before. Hmm. Could it be that cookie batter is made with eggs though and NOT the sugar? Interesting...

Take care!
crazy
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Re: Are the reactions you get this bad?

Postby smelly » Sun Dec 19, 2010 11:16 pm

crasyinCA,

could you have a pre- planned conversation with th eprinciple to educate them about the condition, so they can include this as apossibility in their talk the next time they discuss why a child could have an odour? Also, they would then know you have a medical condition so if any of the teachers were to say anything behind your back , the principle could put them right. I dont know if you would feel comfortable doing this but it might be a bit less emabarrssing to talk to one person rather then room full of people. If you DID manage to do it, you might end up helping out any children who pass through that school with an odour condition, because all of the teachers would hear about the condition in the annual talk?

i wouldnt be able to talk to ANYONE in my workplace about it, so i wouldnt blame you for keeping quiet and suffering in silence.... I dont know how you have the strength to do the job that you do WITHOUT TMAU never mind with it! :lol: kids....wow....tough job! :lol:
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Re: Are the reactions you get this bad?

Postby smelly » Sun Dec 19, 2010 11:49 pm

and the cookies could be bad because of eggs AND sugar. It might be a bit of both.

Im trying to see if i can follow a HEALTHY diet that follows anti candida principles and avoiding the worst TMAU foods like fish and eggs, rather than just drastically cutting back on alll choline which doesnt seem to help me and frightens me as a long term diet.

cutting back on sugars doesnt have to be unhealthy, in fact i am learning a lot about nutrition through this, and also the horrors of modern food manufacture, animal well fare, etc. This issue gets pretty political as well as phillosophical as you start to wonder about WHY you eat, what you eat. I recommend the anti candida diet as a good staring point for anyone who thinks sugar is a trigger because it leads you off into interesting areas ....you have to start shopping in little local health stores where the assistants are educated to a high degree about nutrition and health and cooking and supplements etc, rather than big corporate chains with the bars of chocolate next to the till....I realise this is alot easier depending on where you live. Ive spent plenty of years living in places next to motorways where the ONLY shop ONLY sells pot noodles and mars bars!
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Re: Are the reactions you get this bad?

Postby Bastet » Mon Dec 20, 2010 8:19 am

Hello everyone! I heard some people saying that are on anticonseptive pills. Those are a NO -NO for TMAU sufferers. Anticonseptive pills is one of the prescriptions that triggers the TMAU symptoms. I learned the hard way, not to long ago I took the morning pill (I don't take anticonceptive pills), and I was doing fine with the TMAU treatment, when out of the blue the smell came back full force. When I asked my doctor he told me anticonceptives is one thing that triggers the symptoms of TMAU big time. But, hey I didn't know, and I can buy the morning pill with no prescription. It took me almost 2 months to control the symptoms (the smelly monster :twisted:

Bastet
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Re: Are the reactions you get this bad?

Postby crazyinCA » Mon Dec 20, 2010 7:32 pm

Hello again,

I have told my principal as well as all of the teachers on my grade level. They all say they have never smelled anything on me. I have also "educated" them on TMAU by telling them what I understand about it and have been told by doctors. They know it's a problem with my liver lacking an enzyme to break down choline. They know even though they can't smell it, I do and about half of the kids in my class do, and they know that it really bothers me. I don't mind the principal adding TMAU to our annual discussion as a possible reason for smelly students... but I don't want the entire school to know that I have this. It was hard enough for me to tell the select few that I have told (about 9 or 10 coworkers)... I can't imagine EVERYONE knowing or being told. I don't mind if those 9 or 10 inform the others secretly. It would actually benefit me because then if they do smell anything they'll know it's not for lack of bathing or brushing my teeth, etc. So if the principal wants to mention it she can leave me out of it and just mention it as a real possibility and condition.

As far as the birth control pills.... don't I know it! I researched it and told my ob/gyn that I had heard it worsened TMAU conditions and that is why I was put on LUPRON shots. They have thrown me into what they call a "medical menopause." And I know longer have periods. It has helped a lot. When I began taking the birth control pills that is when I started to have DAILY odor problems. Before that it was only before/during/after my period. I LOVE the LUPRON SHOTS because I don't know about you all but the odor associated with my period was SO TERRIBLE it can only be described as DEATH WARMED OVER. Seriously. When the doctors would ask me what it smells like I would only say DEATH. It is THAT disgusting and that strong. So, if you have worse odor problems during your period, you should talk to you doctor about these shots.

Well. I've got to run now. Talk to you later!
Crazy
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Re:Hi Lyndsey

Postby idealist » Thu Dec 30, 2010 8:06 pm

Sorry late response just sent you a message in regards to your Egypt horror story x
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