My Story So Far

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My Story So Far

Postby sun-flowers » Fri Sep 16, 2016 7:01 pm

Hi everyone,
I've been suffering from TMAU symptoms for roughly 8yrs now (I can't smell my odour), 4yrs ago I plucked up courage and spoke to my doctor (she'd never heard of it) who rudely said 'that's ridiculous it's very rare you haven't got that'! So after another 4yrs of being bullied by work colleagues and strangers I decided to try again at a new doctors surgery, this time with success. Two weeks ago I got my results back, positive for trimethylaminuria, although I was relieved I still cried for days! Today I started a 2wk antibiotic course and an 8wk probiotic therapy course to follow, although my doctor has been really supportive he admitted he knew nothing about the illness, I've done my own research but still have lot's of questions, I would really appreciate any info or advice on how to cope mentally with TMAU as some days I really struggle as many of us do, I was wondering how long after taking antibiotics does the smell return? Is there anyone on long term antibiotics? etc..I use balanced ph level soaps and body washes and I also try to eat low choline foods I do fail sometimes but I'm slowly getting used to it, the supplements I've tried are -

Colon Cleanse's

My partner is supportive but I'd love to chat to someone in the same situation as me, someone who truly knows how it feels, I'm from Leeds West Yorkshire and now live in Wakefield, it would be great if one day when I get my confidence back to meet up with fellow sufferer's.
Posts: 7
Joined: Fri Sep 02, 2016 5:07 am

Re: My Story So Far

Postby noturbo » Fri Dec 16, 2016 5:22 pm

Hi sun-flowers :)

I really do understand what youve been going through. I've had bad body and breath odour for about 17 years :( i've been tormented constantly, mostly by myself, constantly washing etc. Just thinking i'm dirty or something. I've known for years something was wrong but it was hard to admit i smell like rotten garbage or fecese. Even to admit it to myself. I recently, as in the last few months, plucked up the courage to admit it. To myself, and to my one and only friend. I became determinned to find out the problem, the cure, and to get my second chance at life. At first i thought it was candida, or h pylori. Infact im still taking Terbinafine for fungal issues. I also have an h pylori breath test scheduled for monday, thats 3 days time. Im praying its h pylori so theres actually a solution. But the more i research the more it becomes painfully clear that its probably TMAU :( i hope more than anything that its not. I've allready attempted suicide 3 times since 2014 because of this issue, so finding out theres no cure scares me. As i know i'll only see one option to gain any sense of peace. I really REALLY hope you get some relief from your antibiotics. Just a thought but if antibiotics help have you considered mastic gum as a supplement? I took it for 2 weeks a little while ago when i thought i had h pylori and im not 100% but im sure the smell, esp the breath calmed down a little. Maybe if you take it longer, even indefinately, along with a good strong probiotic may give some relief. Im in the north west, was brought up in the lakedistrict so im a fellow northener lol. Hope youre feeling well. :)
Posts: 11
Joined: Fri Dec 16, 2016 4:53 pm

Re: My Story So Far

Postby sun-flowers » Fri Feb 10, 2017 8:45 am

Hi noturbo,

Thank you for your reply to my post, it made me really sad to think you've actually attempted suicide, Ive thought about it many times but luckily that's all it was a 'thought'. I went to my GP and told him how I was feeling and he's referred me for some counselling, I didn't really want to go down that path but Ive decided to take what help I can. Is there any chance you could speak to your GP? any help is better than none at all.
Ive started telling a few people about my condition I find educating people is the way forward, this way I feel more comfortable around them, I know its a risk and could be opening myself up to more ridicule but I'd rather be known as the person with TMAU than the 'disgusting unhygienic smelly person' as people think I am.
If you ever feel like you're going to harm yourself please speak to your GP, I keep telling myself we're all here for a short time so try make the best of what we have got. Good Luck xx
Posts: 7
Joined: Fri Sep 02, 2016 5:07 am

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