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Hello,

Postby Summer0408 » Tue Mar 27, 2012 12:16 pm

Hello,

(I already wrote a post but think i accidentally deleted it... urgh!)

Right, Im 18 years old nearly 19.

I started noticing comments, looks, whispers (you know the drill) when I was around 14 (year 10 in school)! It got worse, then got better, for a couple of years, then this year, has been the worst year (I think its due to strong antibiotics i was on in hospital in sept 2011).

I think its important to state that I cant smell myself, and the smell isn't bad BO its fish! I only notice comments from work friends and friends from university and Im constantly now, looking for reactions on their faces and whispers. Now they are very good with the not moving away and pulling faces, I dont think i have a severe smell, but I do drown myself in purfume!! Sometimes I think its in my head, but then a friend will drop a hint and I then think no its true!! I really wish one of my close friends would just tell me, i would really help me to know whether its in my head or not!

I dont notice people moving away from me in public or anything like that which makes me think its in my head, and I dont think I smell everyday!

Im struggling to know if it is TMAU or something as silly as a yeast infection or something, the only thing that stops me from thinking its something like a yeast infection or BV is that it varies in degree ( i think anyway)!!!

Any advice or help would be much appreciated, I have only really lived with this for 4 years so I admire people who have had this longer!

Thanks and good luck,
Summer0408
 
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Joined: Tue Mar 27, 2012 11:59 am

Re: Hello,

Postby Lisa » Tue Mar 27, 2012 12:51 pm

Hi Summer,
Have you a close friend you can trust?
If so, ask them outright, just say, "Have you noticed a fishy odour on me"?
If they're any kind of friend they will tell you the truth, failing that, what about asking your parents?
:)
Lisa
 
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Re: Hello,

Postby Summer0408 » Tue Mar 27, 2012 1:11 pm

Firstly, Thank you for your reply, it means a lot to me!

I have been trying to build up the courage for months and months (maybe years) to ask someone. I do have a boyfriend who I am very close and comfortable with, but because we spend so much time together I worry he woudn't be able to smell me anyway!

Do you ever get the feeling that it is in your head, or can you smell yourself?? For instance, I have friends at university that want to house share with me next year, and kept pestering me about looking for houses, which makes me think that I dont actually smell!

This is so hard!

Thank you,
S
Summer0408
 
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Joined: Tue Mar 27, 2012 11:59 am

Re: Hello,

Postby bigvern » Tue Mar 27, 2012 6:52 pm

Hi Summer,

welcome :D

I am confirmed TMAU and cant smell anything on myself neither can my Mrs - others obviously can.

If you are getting regular comments I would ask someone you can trust as suggested - it won't be easy but at least you will know.

Depending on the outcome I would go to your Drs and ask to be tested for TMAU, take the FAQs from the DRs from the main website as most GPs have never heard of TMAU

What antibiotics were you on? - if you read the FAQs you will see that some Antibiotics are in fact used in the management of TMAU to clear out the gut and reduce the smell given off. (in theory anyway)

There are other causes of Body Odour which may or may not be relevant for you..
bigvern
 
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Re: Hello,

Postby Summer0408 » Tue Mar 27, 2012 7:48 pm

Hi,

Again thank you for replying! It means a lot!!

I think im going to bite the bullet and make a doctors appt, I really hope it's something like BV!!

As I think it's not as I've had a few years, what do you girls And guys do to help, my main thing is food! I'm don't eat loads but I like different things, I like to cook and play around with food! But I need to know what foods or ingredients I should be avoiding, and also snacks! I work till 9 at night so normally don't have dinner just healthy snacks but what snacks can I eat??

All answers are helpful and appreciated!!
Summer0408
 
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Joined: Tue Mar 27, 2012 11:59 am

Re: Hello,

Postby smelly » Tue Mar 27, 2012 7:50 pm

Hi summer

I would take advantage of all the media coverage there has been in the past few years and use them to talk about it. Back before I was diagnosed there was nothing on TV about the condition so I struggled to respond to people who confronted me about my odour because I couldnt smell it and only some people seemed to be able to smell it.

If I was in that position now I would have something ready to say whenever anyone complained to me of a smell around me. Talking about the programme you saw on embarrassing bodies for example would take the attention away from you personally and maybe make it easier for someone to tell you the truth. G@d bless Ellie and rest for giving people this opportunity, :) It would have made my life sooo much easier if Id had that as a talking point when I was trying to get diagnosed and fending off the bullies.

When I used to respond with 'its probably me' people would always back down from the confrontation they had created by saying 'oh hahahah no I didnt mean you, its probably the drains or something hahaa cringe cringe.' So you might find that if you confront people with a direct question 'do I smell' they might say 'no' when they mean 'yes.' Lot sof us have even had medical professionals lie blatantly to us about it, because some people think its not polite to be honest about such things.

By talking about it indirectly, mentioning the programmes which they might even remember seeing, you might get them to be more honest.
smelly
 
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Re: Hello,

Postby Summer0408 » Tue Mar 27, 2012 8:14 pm

All your answers are really helpful! Even though I believe my tmau isn't severe, it still affects me massively and couldnt imagine spending the rest of my life watching what I eat and bathe with etc etc! The people who are and have been dealing with this for years and years are amazing and I admire you all so much! I can't help but hope this doesn't affect my love life and career etc, but I will take one day at a time and remember the important things!

Does anyone ever think, well fuck all you bitchy people! I am carrying on with my day as normal!!!

Oh, I also have pcos and the antibiotics were augmentin which was dealing with a burst cyst on my ovary... Ouch!
Summer0408
 
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Re: Hello,

Postby smelly » Tue Mar 27, 2012 8:26 pm

I wouldnt even think about following a TMAU diet until you are diagnosed positive because you are going to be avoiding things you might not need to, and its really limiting in choices. You arent avoiding things that make normal people smelly, if you see what I mean, TMAU is a really specific medical condition.

There are probably hundreds of other metabollic conditions that arent discovered yet, where the person gives an odour when they eat a completely different set of foods. If you have one of THOSE conditons, you might end up eating MORE of the foods that make YOU smelly because by avoiding one set of foods, obviously you have to eat a lot more of all the other foods instead, to keep up your food intake.

If you are in the process of arranging testing and you want to try the TMAU diet while you are waiting for test results (ie short term) then you will see a big reduction in your odour (if you do have TMAU) by just cutting down on eggs, red meat, nuts, beans, fish etc. ie high protein foods. If you usually eat a lot of these and you dont see a reduction in odour when you cut them down/out then thats an indicator that it might not be TMAU.

Re the GP visit....If you cant smell any odour yourself, it might help to eat a lot of those foods a couple of days before your GP visit, especially if you have been avoiding them by following the TMAu diet. Your GP might be one of the ones that can only smell the odour at high concentrations. Make a note of the receptionists and other staffs reaction to you. If the GP says he cant smell anything but, like happened to me, the receptionist fired off half a can of room spray at you as you left the waiting room :lol: you can always say, 'do you mind asking the other staff if they can smell anything because i think they might have detected something...' It gives the GP the chance to save face and going back on their 'you dont smell' response, whether it was the truth or not...

If you get a TMAU negative result, I would recommend trying a gluten-free type diet and cutting right back on sugar and seeing if that helps the odour. I am diagnosed TMAU positive but I find that bread / yeasty / wheat / sugar type foods give me the worst reactions from people.
smelly
 
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Re: Hello,

Postby smelly » Tue Mar 27, 2012 8:36 pm

oh and dairy is one to watch for general odour.Even my 'you dont smell' GP admitted he knew of people who gave off an odour on their breath when they ate dairy products.

Just dont go mad and cut things out of your diet completely, try just cutting back. If you write down everyting you eat over the course of a week and look at exactly what is in those ready made meals etc you might find you are eating a lot of one type of food and by reducing that thing a bit you get a reduction in odour. I think Im eating really diverse foods but sometimes but when I pull it all apart I find Ive eaten wheat in a few different forms in one single day (bread, pasta, breakfast cereal etc.) And sugar is in absolutley everything you buy thats ready made, even crisps and stuff. I bought a different brand of frozen chips and the label said they were coated in lactose (dairy) which my usual brand doesnt have. If you find that you are eating a lot of one type of food, you could just try eating less of that thing and egtting a more broad range of grains, meats veg etc.
smelly
 
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Re: Hello,

Postby smelly » Tue Mar 27, 2012 8:40 pm

summer, is pcos polycystic ovary? If so you might find that your hormones are involved in giving you odour. A lot of TMAu diagnosed women find that the stage they are in their hormone cycle has the biggest effect on their odour - forget about the food!
smelly
 
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