Hi everyone! New girl here!

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Hi everyone! New girl here!

Postby Ellie Girl » Fri Dec 17, 2010 5:43 pm

Hi everyone,

I have been following the forum for a little while but thought I would join to say hi and to thank you all for your wonderful, inspirational posts and great advice!

I have TMAU. I think for at least 6 years (it's an adult-onset one) but have only been diagnosed for about 2 years.

I don't really know how I developed it. My endocrinologist (what a struggle to get one!) thinks it may be the result of liver damage sustained through a kidney infection and a sustained repeated course of heavy antibiotics; I think however it might stem from a summer job I had in a genome lab in 1999 where we were encouraged to work with mutagenic dyes with no proper protection... anyway, however I developed it it has been a long slow painful road to diagnosis and although I am positive about it it is at times a living hell, as you will know. It is so good to have found a group of people who know about it although I am so sorry you have all had to suffer to be in this place.

I've had the whole run-around with GPs telling me it was in my head - specialists have done this too. I rarely smell myself unless it is really bad, and then it never smells to me like it does to other people. To me I often smell like vinegar or bread but apparently this translates as a pretty bad garbage or rotting cabbgae smell to everyone else! Sometimes I smell like sulphur or ammonia; it depends what I eat or drink.

My TMAU seems quite severe so I am on a ridiculously restricted diet to control the odour. I take Body Mint tabs, pre and pro biotics, Lepicol and occasional laxatives, and occasional courses of metranidazole, which works much better for me than neomycin sulphate. I have found ph soaps of around 5.5 to be best, and I tend to use a non-smelling dry anti-perspirant coupled with my favourite perfume (Dior Midnight Poison doesn't react badly to my odour) as it seems more effective than deoderant. sometimes I use a mix of water and sandalwood oil which gives a nice clean soapy smell.

I don't know how much good the Body Mint does; I think it helps a little. I did try B2 for ages but am not sure it helps me; likewise charcoal - the binding gum in it is I think a bean derivative and my tmau is so bad I think that the charcoal actually makes it worse although that won't be the case for everyone. I am now going to try Devron, so will keep you posted on how that goes. I am also going to try citric acid in my was as too many nice clothes have been spoiled; also going to try sebamed as a soap (thanks Caliban fot your posts on these!) to see if these work for me, so will keep you posted.

That's a long introduction!

Thank you all that this forum exists and that you all seem such nice people! Good luck in your trials with this awful disorder and keep smiling - don't let the disorder or other people make you feel bad about things - we are all great people and deserve some peace and joy!

Ellie Xx
Ellie Girl
 
Posts: 107
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Re: Hi everyone! New girl here!

Postby lyndsey » Fri Dec 17, 2010 6:10 pm

Hi Ellie Girl

Welcome and hope you get the help and support you need like I have and your right everyone lovely people on this forum. Hope you have lovely xmas and new year look forward to hearing your posts.

Lyndsey x
lyndsey
 
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Joined: Tue Jul 20, 2010 5:01 pm

Re: Hi everyone! New girl here!

Postby SmellyKelly2 » Sat Dec 18, 2010 1:54 pm

Hi Ellie
Welcome my case is quite severe, so you are not alone.
Interesting to hear how you have coped and what you think has worked.
Are you mostly eating rice and veg, or what is your diet? I am always really interested to compare.
I have had odour problems for about 22 years, but it has been much worse over the past couple of years.
I have only just been diagnosed 4 months ago, so just trying to manage now but as you can see from my posts not very successfully yet.
How long did it take for you odour to get to a more acceptable level?
Thanks
SK
SmellyKelly2
 
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Re: Hi everyone! New girl here!

Postby Ellie Girl » Sat Dec 18, 2010 4:06 pm

lyndsey wrote:Hi Ellie Girl

Welcome and hope you get the help and support you need like I have and your right everyone lovely people on this forum. Hope you have lovely xmas and new year look forward to hearing your posts.

Lyndsey x

Thanks Lyndsey! Hope you have a lovely Xmas too. I could cry that I've found this forum - it's like coming home (or getting into a warm bath - ha ha).

Ellie Xx
Ellie Girl
 
Posts: 107
Joined: Fri Dec 17, 2010 4:30 pm

Re: Hi everyone! New girl here!

Postby Ellie Girl » Sat Dec 18, 2010 4:31 pm

Hi SK,

Thanks for the welcome. I reckon I've tried just about everything with my diet. It is mainly rice and veg, yes, and some fruit. Trial and error though. The thing that made most immediate difference was cutting out coffee and caffeine and any nut derivative things (Inc all chocolate stuff Inc hot choc and anything soya). Coffee was my worst trigger. I think it's a sulphur thing - I can't tolerate it. Also I have no animal products whatsoever (v hard at first but I've been about 1 year or more of them - started restricting diet about 4 years ago before diagnosis).

I only eat White rice, but not a lot and make sure I drain the starch as too much starch and rice makes me eggy. I don't have any grains or breads. Oh. Apart from the rice, and sometimes oats as s treat nut too much IATA and I go cabbagey (oats are high in sennapine which is a precursor - also I think they are sulphurous).

Veg - I avoid all brassicas (cruciferous - broccoli, caulu, anything in the mustard family, swede and turnip and parsnips don't work for me either). No beans, peas, legumes or pulses of any sort (Inc mushrooms and chick peas - which gram flour and poppadums are made from!). I also avoid watercress, rocket (mustards) and any leaves thstvaren't plain lettuce. I avoid sulphurous veg too, so no toms (which I love - that was hard) or potatoes, onion, garlic, leeks etc. Fruits I avoid bananas and oranges, cherries and stone fruit ( all sulphurous I think). So I mainly eat carrots, cucumber without the skin, small amounts if courgette with no skin, but only a little, very small amounts if pepper. Fruits mainly apples and pears, but I get kn really well with small amounts of pineapple, lots of mango and papaya makes even my poo (sorry!) smell like tropical fruit! I avoid anything with sulfites (most alcohls and dries fruits among lots of other things!). I've found avocado and artichoke v bad for me, will have one or 2 olives as a treat. Cheese of any kind bad for me. I think that's about it really.

I make some great variations of carrot soup with fruit; baked veg and baked fruit is lovely; I make risottos with a little olive oil and a combo of what I can eat. I avoid herbs and spices but allow myself z little salt and pepper and a little parsley; sometimes a small amount of chives as I miss onions so much,

It's really hard and I've lost so much weight (I'm 41 but same size as when I was 19 - so small blessings) and I love a drink as does my bf - cutting out alcohol has been the last to go but it makes me stink so go it has.

I listed my supplements in first post - I think they work better ghzn when I don't take them but they haven't fixed me.

Not everyone will need to be as restricted as this, but it dies help me and on a bad day I could bleat a room (still can on my period!).

I find it beyond trying but I am determined to do every little thing I can to get on top of this. The good days make it worth it!

I also meditate and I stick up
For myself if anyone says anything. My colleagues are great after I told them and gave them links. I spend a lot of time in external meetings so I always send a link in advance with a chatty email explaining the situation and asking fir a ventilated room, just in case it's bad. That seems to help with how I am treated.

Long post, sorry! Hope that is helpful. What works for you SK?

Ellie Xx
Ellie Girl
 
Posts: 107
Joined: Fri Dec 17, 2010 4:30 pm

Re: Hi everyone! New girl here!

Postby Ellie Girl » Sat Dec 18, 2010 4:39 pm

PS sorry about appalling typos! Tiny keyboard big fingers!

SKi forgot to say- there was an immediate diff without coffee but the diet thing has taken time. If I slip up it can take something a couple of days to clear my system. Depending how strict you are, with me, when I go back to strict I have about 20 v good days a month, about 5 shocking ones around my period, and a couple of less bad ones around that. I would not advocate the severity of my diet to everyone but my TMAU is v bad and I'm desperate. I think my odour is markedly better now, apart from bad days. I gi e myself days off though every now and then when I am with safe people. Xmas dinner - having the works :-)

Good luck,

Ellie Xx
Ellie Girl
 
Posts: 107
Joined: Fri Dec 17, 2010 4:30 pm

Re: Hi everyone! New girl here!

Postby SmellyKelly2 » Sat Dec 18, 2010 9:07 pm

Thanks for all the detail Ellie thats really helpful.
Like you I think that my smell improves by eating mostly white rice with limited vegs and some fruit.
I will ensure that I always drain the rice now.
But I have not limited the veg as much as you and I now think that I need to.
I recently started eating cheese again and for me this was a big mistake.
I also eat some beans, quorn, nuts and chicken, but need to cut these out again (its so hard!).
I am 41 too, I only weight about 7 1/2 stone (lost over a stone with this illness).
So like you I am the same size that I was when I was 12 (size 6 and sometimes that is big on me).
Now have to be careful not to lose anymore weight, but at the moment happy with my figure ( as I am only 5ft nothing).
Not sure that much else has worked for me yet, as my diagnosis was only in August 2010.
The real problem I have is that myself, boyfriend and family cannot smell it. So like many on here I think I am having a good day, then someone makes a comment and you realise that you are not!
At the moment my smell is still pretty bad, but like you I am determined to get it under control.
SK
SmellyKelly2
 
Posts: 166
Joined: Sun Aug 29, 2010 3:28 pm

Re: Hi everyone! New girl here!

Postby Ellie Girl » Sat Dec 18, 2010 10:23 pm

Hi SK,

Keep us posted on how you go if you cut out the nuts, beans, chicken and quorn. I wouldn't dare eat any of those - not only do they make me smell like 'burning sh*t' so I've been told, they take ages to clear my system. Almonds and peanuts worse, but all beans and nitrous foods are bad in my case. It is so very hard, isn't it? For me cheese, toms and onions were a sorrow to lose - they were my highlights! But worth it. Like I say though, I will allow myself small treats if I'm not seeing anyone or around friends and family. Although not too often, as I find it hard to go back to cutting them out.

My bf and family rarely smell me, friends either, so I can't often gauge how I am getting on.

It's nice to get back into old jeans tho, hey? I'm 5 8 and have just got back into size 8 so don't want to lose anymore.

Keep smiling SK and have a great weekend!

Ellie xx
Ellie Girl
 
Posts: 107
Joined: Fri Dec 17, 2010 4:30 pm

Re: Hi everyone! New girl here!

Postby lyndsey » Sun Dec 19, 2010 10:11 am

Thanks Ellie girl

All that info is greatly appreciated.


Lyndsey x
lyndsey
 
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Re: Hi everyone! New girl here!

Postby SmellyKelly2 » Sun Dec 19, 2010 8:24 pm

Thanks again Ellie.
So do you generally have no protein foods at all?
I know from speaking with some people on body odour support site, they say be do not need so much protein as people think (plus I know it is in other foods in smaller amounts too).
SKx
SmellyKelly2
 
Posts: 166
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