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Postby Smellydem » Tue Mar 13, 2018 10:17 pm

Hello i was diagnosed with tmauu 1 . 2 years ago and seen doctor robin Bachmann in London but the diet did not work for me as I still smelled. The smell did reduce when I stopped high choline foods but the diet makes me still smell as if am constipated but I do a bowel movement every day and am not constipated. I take aloe Vera.. activated charcoal.. vitamin d and calcium. Riboflavin and probiotics and do a low choline diet but nothing is helping me. Please help
Smellydem
 
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Joined: Tue Mar 13, 2018 10:06 pm

Re: New member

Postby Nika » Sat Mar 17, 2018 10:30 pm

Hey, I was also taking supplements, but they even worsened my odour.. :/
May I ask, how old you are?
Nika
 
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Re: New member

Postby Smellydem » Mon Apr 09, 2018 5:08 am

Hi am 24. I even have a daughter who's 2 but I cannot smell nothing from her so she is healthy. I do not understand why the low choline diet doesn't help me. It's disappointing
Smellydem
 
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Joined: Tue Mar 13, 2018 10:06 pm

Re: New member

Postby Nika » Fri Apr 13, 2018 6:37 pm

Hey, how does your low choline diet look like exactly? Do you eliminate high choline foods completely or do you reduce the amounts of them? Do you eat eggs, meat, milk?
Our body is able to produce choline or substances that are later degredated to trimethylamine like e.g. carnitine which is needed as a carrier to transport fatty acids into mitochondria or the neurotransmitter acetylcholine does also contain choline... so the sources are not only diet..
Theoretically you should also limit foods high in carnitine and lecithine (peptidylcholine). These molecules contain choline groups as well. The intake of foods containing large amounts of indoles and glucosinolates should also be reduced cause they inhibit the FMO3 enzyme.
Nika
 
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Joined: Sat Jun 09, 2012 12:23 pm

Re: New member

Postby Smellydem » Wed Jun 27, 2018 11:06 pm

Hi I do not eat high choline foods but I still smell a odour . What do u mean like what else do I need to avoid. I avoid eggs soya beef pork milk and vegetables that are high and bananas and stuff I do not eat. I eat typically porridge with rice milk. Then later Apple grapes and orange. Then lunch chicken and salad . Dinner things like pizza or pasta or Turkey mince Bolognese. Etc. Or chicken dinner. So what am I doing wrong. I can smell a decal smell on me. I cannot smell it inside but I can smell it when am outside like it follows me and I know it's coming from me. It's so horrible to live like this. I just give up
Smellydem
 
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Joined: Tue Mar 13, 2018 10:06 pm

Re: New member

Postby Biscuit » Thu Jun 28, 2018 6:49 pm

Hi Nika and Smellydem
I have been following the posts on here for a while and am convinced I have tmau but have struggled with getting anywhere near a diagnosis. My symptoms have been there since my early 20s and I’m 41 now. Despite my best efforts I think my BO is getting worse. Funny you saying about only being able to smell your odour outside, I’m mostly the same. How is your general sense of smell? Mine seems to have deteriorated a lot and I sometimes have almost no sense of smell so rely on the reactions of others which makes me really anxious. I think I have a garbage smell, sometimes acetone, ammonia and at worst sulphurous. I have days where it really gets me down but then refuse to let it so have become thick skinned and go about my job and life as best as I can. I avoid nuts, eggs, soya, beef, fish and dark green veg. Seafood seems to be the worst trigger and I had waves of smell coming off me when I last ate that. I’m fastidious about personal hygiene too and have tried all sorts of soaps and cleansers.
I’d love to exchange experiences and tips with anyone who is interested - there aren’t many of us and it can be such an isolating condition. Biscuit
Biscuit
 
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Re: New member

Postby Smellydem » Tue Jul 03, 2018 6:22 am

Hi yeah I know same here it's hard to live with this isolating condition. Sometimes I just eat things with soya in their because I like chocolate lol. Even if I do the low choline diet it doesn't work for me. I still smell but it's less smell than the high choline foods. It really affects my mental health and because of this I am on anti depressants. There is no cure and I feel like I lost hope. There is nothing we can do. The diet is just so silly that it doesn't even work for most people at all. Also antibiotics make me smell more for some reason. I just lost hope with this condition and really gets me down when people react to my odour. It's hard to live with and the medical field are not bothered about this condition.
Smellydem
 
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Joined: Tue Mar 13, 2018 10:06 pm


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