Finally think I have found my problem with Tmau..

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Re: Finally think I have found my problem with Tmau..

Postby catlon » Mon Mar 16, 2015 11:44 am

Hi Pinkerton,

I'm new here too and just posting to say that I think I may also have finally recognised a whole array of symptoms that I've struggled with for years so I completely sympathise and empathise with you. It's so tricky when the door doesn't seem to stay the same (I can't usually recognise it myself, though I can sometimes tell, presumably when it's very strong). I've had "fishy", "sewer/drain", "rotting meat", "gone off seafood", and "burning/burning rubber" amongst others. It is heartbreaking, especially when I know that I've showered/taken good care of my personal hygiene, if anything far more attentively than most and yet still hear hushed comments about how I "need to learn to wash properly" and so on.

Of course reactions can range from the kinder to the very brutal ("if opening a window isn't helping, we could try putting her through a window...", etc) in a way it gives us all an inbuilt filter for finding more compassionate and understanding friends. Perhaps there is a silver lining somewhere in that. I'm probably going to get tested for TMAU very soon as, having found this, I can finally tie together all my experiences in a way that makes so much sense that I think it has to be the cause. I think actually I will feel a lot of relief if I can have a definite cause that I can begin to treat and benefit from the advice of others also and indeed to have an explanation to give to the very demanding people in life, when needed.

If they only knew how we do bend over backwards daily to make other lives less uncomfortable, all for something that we couldn't help having afflict us. I must have sat shivering by open windows in winter a thousand times, taken long detours home after work to wash and change clothes before going out again, always packed several changes of clothing per day when going away, sat or stood on the outskirts of any meeting to affect fewer people, tolerated freezing draughts just to make sure there is fresh air flowing by me, eaten carefully and tried out all kinds of different products and fragrances, all to no effect. Perhaps if I get a positive diagnosis for TMAU I will finally have a starting place to work from.

Good luck all. Even if I find TMAU is not my issue, I certainly feel for you all very much and wish all the best.
catlon
 
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Re: Finally think I have found my problem with Tmau..

Postby beautifulsoul39 » Tue Mar 17, 2015 7:58 am

Hi please go see your doctor for diagnosis and do not even attempt to do this diet without professional help ,i promise you if you attempt a starvation diet you will stink to high heaven of an unpleasant feacal odour and your body will go into crisis ( i know) trust me its not a nice place to be,good luck and i hope you get some answers
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Re: Finally think I have found my problem with Tmau..

Postby pinkerton » Tue Mar 17, 2015 8:47 pm

No I'm not starving myself, I'm just eating low choline foods.

@ Catlon, reading some of your comments is like reading something I have written. Standing at the back of meetings, even avoiding them where possible, windows open even in winter and your totally right, the effort we go to for the benefit of others. I agree we're cleaner than most Im sure, I've used everything to wash with bar bleach. I've even rubbed those liquid electric air fresheners on me to try and hide any smell.

I had a great one this evening someone came in with another person and said, " he's farted, I can smell the drodorant ".

So they could smell drodorant and I got a comment that I must have farted and tried to cover it up.

Lol you just can't win :)
pinkerton
 
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Re: Finally think I have found my problem with Tmau..

Postby catlon » Wed Mar 18, 2015 10:19 am

Pinkerton, I went to my GP yesterday with this for the first time, and no she hadn't heard of it (fair enough), but thank goodness I have the name of it and this site to show her because without it I'm well aware the symptoms I was describing would sound completely nuts. Anyway, she was concerned about the cost of the urine test, which is pretty pricey I grant, and given that she couldn't smell anything on me at the time she's just had to take it on trust that there is actually a problem there.

The more I read, the more convinced I am that I have TMAU though. Just read a bit where somebody said they smelled of pumpkin when their symptoms were more under control and recalled an incident the other day where a friend was asking "what smells of pumpkin?" and we were outside and certainly not near any pumpkins and I was thinking "oh, I have literally no idea, maybe it's another addition to the armoury or bizarre smells I can make" haha. I'll definitely take pumpkin if I can get it! It's gotta be better than the others.

That is so funny about the deodorant fart! Aw, shame. I kind of stopped using scents as a cover up (though I still use antiperspirant of course) because people would comment more on the "sicky sweet" or "really weird sweet rancid smell" so I kind of figured that my skin reacts with scents in funny ways and it might be better to just let it be.

Anyway, my GP said she'd do some research and come back to me next week with some sort of basis for a plan, so hopefully I can get the test and finally know for sure if it's TMAU (I kind of really hope it is because at least then I'm not nuts). Good luck to you as well. If you see a GP, I reckon maybe direct them here prior to your appointment if possible to get the most out of the appointment or bring some print outs with you because I can confirm that there is very little info about this on whichever system my GP used.
catlon
 
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Re: Finally think I have found my problem with Tmau..

Postby Dave99 » Sun Sep 13, 2015 9:31 am

Hi Pinkerton,

I also work in a office environment and have had the smelly comments. I noticed fellow sufferers still might have diet soda as a drink. I used to treat myself always to a diet lemonade once a week even on a low choline diet. Then a few months ago due to a busy weekend i went without, that's when my skin in my groin area started to change. After 1 week skin was peeling off, after 2 weeks i had thick scabs coming off. My skin used to be moist with a strong odour but now it feels dry and less odour. I will never touch a fizzy drink again, i don't know if it's our body struggling with the chemicals or the sweeteners. Hope this helps. New stink on the block dave.
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Re: Finally think I have found my problem with Tmau..

Postby Ellie Girl » Mon Sep 21, 2015 11:30 am

Welcome, and good luck!

Cutting out the lattes and eggs will help trmendously!

I'd be careful with the chicken and ditch the garlic and chili. Herbs and black pepper are your friends :-)

Watch out also for canned stuff (preservatives) and ready made noodle soups - too many ick things in them we can't had.

It's best to eat clean and fresh where possible and to be as low choline as possible by avoiding the really big bad choline things on the USDA list. Also, sulphourous things (onions, garlic) and things high in potassium generally aren't great. Neither is alcohol. Or chocolate.

Welcome to our world:-) Hope you find something that works for you - and stay cheerful - you now have a starting point xx
Ellie Girl
 
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Re: Finally think I have found my problem with Tmau..

Postby PinkPanther » Sat Jan 02, 2016 4:19 pm

Bless you Pinkerton, I hope you do well on your diet.

I found your post really interesting. I've had rotten BO since I was 13 years old at least (maybe longer, but that's when my peers started complaining loudly about the smell). Before the internet was invented there was hardly anything available to help or explain. I was like everyone else who believed that if you were clean you couldn't smell - and of course I can't smell it myself (or only very rarely), so it always came as a huge shock when someone reacted badly to me when I was just going about my business, oblivious to the stench that followed me.

It's only in recent years that I've finally realised just how many foods cause me to smell, the list is seemingly endless. I'm a vegetarian and until last year was eating tons of green veg like Brussels, Kale, Cabbage etc that must have been making me honk like mad! The penny only dropped when I started juicing and the BO was so bad that I couldn't go anywhere without amazed stares and disgusted comments galore. I was eating the healthiest diet of my life but I smelt worse than ever.

I must add at this point that I've never been officially diagnosed and I'm firmly of the belief that TMAU is just one of many metabolic disorders that can cause BO from improperly metabolised substances in food. I know this forum frowns on anyone claiming to have TMAU who hasn't been tested, so I'll just say that I get bad BO from many and various foodstuffs (and drinks).

I've avoided for many years all the things on the high choline list without losing the BO. I've found that anything with a high sulphur or thiol content also makes me smell. I had a small amount of onion for the first time in ages last night and a few hours later my partner said, "have you been farting in here? it stinks of farts!" I hadn't. (although I do think I smell more when I've got bad-smelling wind).

It's a constant learning process.

EDIT:
I only noticed after I posted this that the thread is a few months old, duh! Would be nice to hear from the OP again to see how he's getting on.
PinkPanther
 
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Re: Finally think I have found my problem with Tmau..

Postby Julieb » Mon Mar 14, 2016 7:32 pm

Hi,
I posted huge message on here yesterday as I too have final realised these symptoms are mine.
I noticed your message was from last year.
How are you getting on with diet cos I'm literally eating nothing in desperation.
What brand of chicken noodle is ok to eat
Hope to hear from you soon
Julieb
 
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Re: Finally think I have found my problem with Tmau..

Postby Maggie » Tue Apr 19, 2016 6:15 am

Hi Pinkerton,

I hope your low choline diet is going well. I am a new bee as well.

I recently figured out that it is the food I have been eating. Just like you, I would spray myself before I visit other colleagues in their offices. Who has farted is a familiar expression that I heard all the time. For almost ten days, I have been on low choline diet. It seems like it made some difference in my life. At least , my car does not smell bad anymore. That's something I realized. For breakfast, I eat small amount of cornflakes with rice milk or a bowl of strawberries. I stay away from my favorite drink LATTE which I used to have 4-5 a day. I also steam Fresh Kale and season it with olive oil and lemon juice. The amount of choline is very low in kale. I don't eat chicken much. Maybe once a week - I eat the wings as they are low in choline. I usually make myself a massive salad twice a day just to get going. I basically eat nothing just to smell okay.

Have you done the test ?

All the best,
Maggie
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Re: Finally think I have found my problem with Tmau..

Postby Lisa » Tue Apr 19, 2016 7:52 am

Kale is a no- no!!!!
Lisa
 
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