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PostPosted: Sun May 31, 2015 9:51 am
by krispy10
I have had this awful problem for 30 years. I have been back and forth GP's and consultants for 20 of those years.
Finally last year after sitting in my GP's office sobbing armed with a print out of TMAU from the internet I was referred to another consultant.
The Consultant told me he had never heard of this condition. I was sent away, three months later I got a phone call from his secretary telling me to eat 4 eggs and 2 tins of beans then bring my sample in.
Another 3 months later I returned to the Consultant, he told me the results were negative, my result was "12" ?
He then refered me to another Consultant only to receive a letter from him saying there was nothing he could do for me but maybe if I change my clothes more often the odor might go away!

I really don't know how much more I can take.

Re: Hello

PostPosted: Sun May 31, 2015 10:52 pm
by yvette
25 years ago I was told nothing could be done. My Dr was a lovely lady doctor and got me counseling and a course of beta blockers to calm me down and retrain my fight flight reflex. It calmed down all my symptoms and enabled me to live with myself. The symptoms didn't go away and I have just found this site so now I know what's wrong with me. Everyone has a cross to bear but TMAU is a bloomin heavy one!!! You can talk to me anytime I'm 55 so probably a bit older - and none the wiser!! We can talk diet tips. Don't buy wheat free couscous it's like eating grit! I've just finished work and I have felt my symptoms are better today so I'll carry on. I thought I smelt bad at one point but luckily it turned out to be millie our dog!!! Just don't get upset too much there's lots of us it seems and we can get through it together.
Take care and speak again soon, Kaye

Re: Hello

PostPosted: Tue Jun 02, 2015 10:09 pm
by krispy10
Thank you Kaye . I have so many questions. I have been taking 3 560mg charcoal 3 times a day. 100mg B2 3 times a day and a handful of copper. It's not working but I feel I have to take them. Does Mint Tea help?
I'm think I'm on the change and the Symptoms are a lot worse at the moment. Today was a bad one.
Any advice?.

Re: Hello

PostPosted: Wed Jun 03, 2015 4:55 pm
by yvette
I'm new on this as well. I'm trying to go wheat/Dairy free to see what happens. I am taking liquid chlorophyl as well as charcoal. The chlorphlyl makes me feel like I'm not in the right body but it definitely helps as I stopped taking it yesterday and today hasn't been a good one!!! I like being myself though and taking all these odd things makes me feel a bit spaced out if you know what I mean. I've also cut out the veggies that are on the list. I've got to get myself organised and cut things out one by one and then I'll know what's the best thing for me. I think that's what you have to do. If it doesn't work in six months then I'll just say soddit "I stink therefore I am!" I can't smell it which is hilarious if you think about it.

Anyway if we are going on this road at the same time at least we can chat and try and put some humour into this nightmare of a condition.

Take care of yourself, I am mostly online at night so my replies may be a bit slow but I will on carry chatting for as long as you wish.

Re: Hello again

PostPosted: Wed Jun 03, 2015 6:17 pm
by yvette
Hi again,
I've just sat and organised a plan. I'm going to take 1 charcoal tab before each meal and 5mg liquid chlorophyll before bed. Whilst following a wheat/diary/red meat/bad veg free diet. Drink lots of water. I'll let you know the results after a week. Have you got a plan? I think it's got to be diet that solves it so hopefully I will then stop the chlorophyll.
I've got the evening to myself and it's lovely down here at the moment so I'm offto take the dog a walk. Have you been up to much? Kaye

Re: Hiya

PostPosted: Wed Jun 03, 2015 8:11 pm
by krispy10
it's really nice to chat to someone in the same boat. I have cut out dairy and only eat Carrots and mushrooms because I read on here they are the only veg that is suitable for TMAU sufferers. I eat lots of Salad . I have IBS and Charcoal makes me constipated increasing the cramps. I am in a mess. Everyday in work I suffer sly comments and even to my face. If I didn't have to work I would have packed it in. Where did you get the liquid Chlorophyl?
I did take 3 million bacteria Probiotics . WOW that made it worse. On Holiday everyone in the resort talked about me. It was awful.
I work shifts so if there is a delay in replying I'm probably in work
Thanks for chatting.

Re: Hello

PostPosted: Wed Jun 03, 2015 8:31 pm
by Lisa
You can eat courgettes, celery, peppers, sweet corn, beetroot.

Krispy, how's about investing in some headphones to listen to your music, block out any nasty comments.

Try not to read people's faces, and look/hear for reactions, you hold your head high, you have NOTHING to feel ashamed of, those people should hang their heads in shame!
We are ALL here for you.


Re: Hello

PostPosted: Wed Jun 03, 2015 9:40 pm
by yvette
Thanks Lisa for the veggie list. I like sweetcorn and as its sweet it takes the edge of not having sugar in my life. Krispy10 - I got the chlorophil online but I've read it's bad for you and causes more constipation. I have IBS they all must be linked to not being able to digest certain things its just finding out what. I've tried wheat/dairy free bread tonight - never again!!! Millie our dog didn't mind it but then she eats the cat poo if I don't chase her off!!!! Why did you think of the name Krispy10?
I worked for nearly 20 years in IT on shifts with mostly men. Looking back I don't know how I survived. That was when I had to have counsoling and Beta Blockers I think everyone at work new I was struggling and put up with me. The thing is we have right to work and we have to earn money so you have to just forget you smell in a way and ignore everyone's attitude. No one ever said it to my face but now you know its a condition you have the option of telling them what it is. I'm a complete coward I just ignore people to be honest. If I were you I'd start thinking how you can work for yourself or do a job where you spend the majority of time on your own. I look after peoples Holiday cottages and also do care in the community. I drive around on my own which is lovely and it's just half hour visits to various elderly people who never seem to notice and are always happy so it's a good job. It's not any where as well paid but I have peace. Do you have family or pets? I will be thinking of you on your next shift and send a curse mentally to everyone who is unkind to you . Kaye

Re: Hello

PostPosted: Wed Jun 03, 2015 10:36 pm
by Lisa

You can have strawberries too if you have a sweet tooth.

Re: Hello

PostPosted: Sun Jun 07, 2015 10:50 am
by krispy10
Hiya Thank you Lisa for the advice. I am currently fasting to clear my gut ready for a new week in work. My overload on B2 Charcoal and copper is looming. I do tend to watch and listen to people's comments and reactions. I have become extremely paranoid. I must try to stop it. I have overloaded my office area with air freshness Plug ins etc. My close colleagues are aware of my problem and are great. I assume lettuce and Cucumber are bad?
Yvette. Have you tried Green Tea? I hear that's a good detox.