Probably have TMAU...

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Probably have TMAU...

Postby c64 » Wed Jul 18, 2012 9:41 pm

Hello everyone. I'm a 14 old dude, and I think I have TMAU.

Until I was 12 I didn't smell or anything, until one day at school a friend said to me "your arm pits stink". I didn't know what to say. I didn't wear deodorant at the time, but I showered every day.
From that day on it started to get worse, I just had it when I did exercise like playing soccer, now even walking makes me stink. I've been trying new deodorants almost every week lately, but none works, they actually make the smell even worse.
My classmates started to notice my smell and sometimes they say "jeez, it smells like arm pits here" or "dude, you have a smell...".

Sometimes I tell my parents I always smell, but they say it's not true. From what I read this always happens with TMAU suffers, so I don't think going to a doctor will make any difference because he'll say the same as my parents.

It's impossible to live this way. It was already hard for me to make friends and have a social life, now I can't even get close to people!

After googling lots of times, I finally found that there is this condition called trimethylaminuria.

It's got to be the only explanation for this (I'm not overweight btw). Although I'm sure I have this, I don't know where to get diagnosed.

I'm not sure if it's TMAU1 or TMAU2, but I think it's TMAU1 because it appeared when I was 12, while some people's TMAU (like a kid called Thomas in a youtube video) appear in elementary school.

Now, we need to spread the word about this. I'm not sure if anyone is researching a cure, but there aren't any donors and almost no one knows about this condition! We have to create a facebook group, tell everyone about this so at least they don't judge us so much. By doing this we might also help people who still don't know why they smell so much and are desperate to find out (saw an example in a youtube documentary).

Thanks for reading :)
Last edited by c64 on Wed Sep 19, 2012 3:11 pm, edited 2 times in total.
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Re: Probably have TMAU...

Postby robert123 » Thu Jul 19, 2012 4:34 pm

Hey there,
Firstly congratulations on your superb English considering your age and coming from Portuagal, that's really impressive. I'm very sorry to hear of the trouble you've been having, my problems started around eleven or twelve as well. Can I ask do you feel the source of the problem is localized from your arm pits or maybe like myself it comes from the whole body or breath? If you can't smell yourself then I guess that it would be very difficult for you to know.
If you scroll down to the end of the page linked below you will see the test sites for tmau around the world -
http://www.meboresearch.org/trimethylam ... autestlabs
To be honest while tmau is the only medically recognised condition out there (maybe there are a few others as well) there could be other things that might be the cause of your problem. Is it possible for you to know if you eat certain foods does your odour increase? Red meat and dairy are trigger foods for a lot of people, fish obviously, some fruits. That would be a good place to start with what you are eating, maybe cut out sweets and junk food for a while. Perhaps you might want to cut back your consumption of some potential trigger foods but be careful especially as you are still growing. Like if you wish to cut back on eating red meat eat a lot more chicken instead.
I wish I could give you some advice, I know what it's like to be going to school and having an odour :oops: Hopefully some more expert people than I could give you better advice. I would try and see a doctor though who knows it might not help but then again you never know until you go.
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Re: Probably have TMAU...

Postby c64 » Thu Jul 19, 2012 5:24 pm

robert123 wrote:Hey there,
Firstly congratulations on your superb English considering your age and coming from Portuagal, that's really impressive. I'm very sorry to hear of the trouble you've been having, my problems started around eleven or twelve as well. Can I ask do you feel the source of the problem is localized from your arm pits or maybe like myself it comes from the whole body or breath? If you can't smell yourself then I guess that it would be very difficult for you to know.
If you scroll down to the end of the page linked below you will see the test sites for tmau around the world -
http://www.meboresearch.org/trimethylam ... autestlabs
To be honest while tmau is the only medically recognised condition out there (maybe there are a few others as well) there could be other things that might be the cause of your problem. Is it possible for you to know if you eat certain foods does your odour increase? Red meat and dairy are trigger foods for a lot of people, fish obviously, some fruits. That would be a good place to start with what you are eating, maybe cut out sweets and junk food for a while. Perhaps you might want to cut back your consumption of some potential trigger foods but be careful especially as you are still growing. Like if you wish to cut back on eating red meat eat a lot more chicken instead.
I wish I could give you some advice, I know what it's like to be going to school and having an odour :oops: Hopefully some more expert people than I could give you better advice. I would try and see a doctor though who knows it might not help but then again you never know until you go.


Hello robert123, thanks for your response!
My smell comes mostly from my arm pits, although when I do exercise I can smell it on my neck and shoulders as well. My breath doesn't seem to be very bad, and I haven't "tested" it while exercising. I'll try it soon.
Thanks for the link of TMAU test sites, but you know, I can't do this by myself, I need to tell my parents about TMAU, which I'll do soon. What do I have to do to get tested? The closest site is in Sheffield, so do I have to ship my urine samples to it, or...?

I mostly eat meat, fish, rice, etc. Don't eat many veggies :D. What do you think if I eat high-choline foods for 2 days, exercise, then compare the smell to another day when I ate just low-choline foods? Seems like a nice homemade diagnosed until I do the urine test :)

Well, as I said, doctors tend to not believe people who have TMAU, it happens in almost every youtube/documentary video I see. But since I'm gonna talk to my parents about this, indeed, why not?

Again, thanks for your time! :)
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Re: Probably have TMAU...

Postby robert123 » Fri Jul 20, 2012 2:37 pm

Hi C64,
Your idea about setting up a tmau website in portugese is fantastic, I really think it would be very worthwhile and could help out a lot of people.
I'm really sorry but I'm not exactly sure how you would arrange a tmau test. I had a look around the mebo.org website again but it wasn't that clear to me how you would going about getting one. Maybe if you could contact some of the people behind that website they could better direct you. Sorry that's not much of an answer I know. Your diy tmau test sounds good alright. One possible problem though is that different foods can canuse different reactions for some people. So if you eat red meat for example your odour may increse but it's not necessarily the choline in it that's responsible it could be something else. One thing I really would like to say again is that I see you are extemely focused on tmau as the cause of your problem but honestly there could be other medically unrecognised reasons. Like I read somewhere that two thirds of presumably odour suffering people who got tested for tmau turned out negative for it. There's another forum you might ant to have a look at -
http://breathandbodyodour.proboards.com ... estthreads
I only mention it because on there you'll find a lot of odour sufferers, some who have tmau but many others who don't. I genuinely think it's important to keep an open mind on the source of your odour, its very possible you don't have tmau. If you don't mind me saking have you any irritable bowel syndrome problems? Like bloating/cramping/gas/constipation/diahorea? That could be an important clue as to what is going on. Also do you have a thick white coating on your tongue?
Again my sympathies to you for having to live with this, my school days were a misery so I'm really hoping you'll be able to get to the root of your problem and be able to live a normal life.
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Re: Probably have TMAU...

Postby c64 » Fri Jul 20, 2012 3:33 pm

Hello.
I'm focused on TMAU because it's the only explanation I found to my bad body odor. But if it's not TMAU, what can it be?

From what I saw in the symptoms I don't have irritable bowel syndrome, and I don't notice a thick white coating in my tongue either.
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Re: Probably have TMAU...

Postby PoetFire » Fri Jul 20, 2012 4:03 pm

Hi. I think there is a tmau test lab at a hospital in Madrid ? Not sure.
If you try this email address http://www.ncbi.nlm.nih.gov/pubmed/19695515
This Valencia lab does DNA test : http://www.bloodbornebodyodorandhalitos ... spain.html

TMAU is just the first of probably many 'metabolic body odors' that will be discovered. As it happens, I think most may be to do with FMO3 enzyme. If you think of FMO3 as the team and TMAU just one player. As it happens, TMAU is a good biomarker of FMO3 function in oxidizing a nitrogen containing FMO3 substrate.

FMO3 oxidizes 1,000s of sulfides, amines and phosphorous containing compounds but very little has been proven in research etc. It doesn't seem to cause any obvious disorders to people (such as death or severe handicap), so not much attention has been paid to it. It is probably a 'small-time jack of all trades' but does deal with 1,000s of substrates whereas many other enzymes have very few substrates.

I'm sure there will be other metabolic disorders from other enzymes too, but I am guessing FMO3 deficiency will be a common one. At the moment the only way to check FMO3 function is the TMAU test.

This is just my opinion.
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Re: Probably have TMAU...

Postby Weak » Fri Jul 20, 2012 7:14 pm

Get started on the diet, your relatively young. If you had tmau1, which is genetic then it should have be going on since you were born(you being born unable to break down fmo3). Since you lasted till you were 12 that means at some point you were able to break down tmau and then stopped. This is normally caused by you eating an large amount of food high in choline, your body being overloaded with it just broke down and stop metabolizing. Also it could have just been a build up of high choline /sulfer foods over your life. I recommend going on the Diet and getting alot of exercise to help get the fmo3 that is in your body out of your body. Over time your smell will go down and eventually stop, act fast enough and your body may even start working properly again which is a long shot but possible.

The way it works is that you eat food that is bad for you, the fmo3 stays in your body since your body doesnt break it down, it builds up over time and is expelled via sweat, urine, and saliva. Now if you exercise alot(sweating) and drink plenty of water(urine) you can get the fmo3 out of your body even quicker, thus reducing the amount of fmo3 in your body and reducing the smell if not removing it, all the while taking some riboflavin to help improve your bodies ability to digest fmo3.

Also i strong support your website idea. :D
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Re: Probably have TMAU...

Postby c64 » Fri Jul 20, 2012 7:29 pm

Weak wrote:Get started on the diet, your relatively young. If you had tmau1, which is genetic then it should have be going on since you were born(you being born unable to break down fmo3). Since you lasted till you were 12 that means at some point you were able to break down tmau and then stopped. This is normally caused by you eating an large amount of food high in choline, your body being overloaded with it just broke down and stop metabolizing. Also it could have just been a build up of high choline /sulfer foods over your life. I recommend going on the Diet and getting alot of exercise to help get the fmo3 that is in your body out of your body. Over time your smell will go down and eventually stop, act fast enough and your body may even start working properly again which is a long shot but possible.

The way it works is that you eat food that is bad for you, the fmo3 stays in your body since your body doesnt break it down, it builds up over time and is expelled via sweat, urine, and saliva. Now if you exercise alot(sweating) and drink plenty of water(urine) you can get the fmo3 out of your body even quicker, thus reducing the amount of fmo3 in your body and reducing the smell if not removing it, all the while taking some riboflavin to help improve your bodies ability to digest fmo3.

Also i strong support your website idea. :D


I had thought about what happened to my body that it made it stop break down trimethylamine, I didn't see an explanation to it until you now said that maybe it was an overload of choline. It makes sense, since when I was like 4 I ate mostly meat and fish and other foods which are high on choline, but there are many other people who also had/have the same "diet" as me and their fmo3 keeps working.

This made me think (after reading another post here) that maybe it's not TMAU that I have, but some similar condition. In the interview with N. Manning (available here on tmau.org.uk), we can find this:

Code: Select all
Without DNA analysis, it is impossible to confirm urine TMA results which tend to indicate TMAU1, but from 1997 to 2009 we found results indicating TMAU in 379 adults and children who complained of an odour. Using increased TMA/TMA-oxide data as a possible indicator of TMAU1 approximately 67% fell into this category.[b] However only 27 of these patients have since been followed up by DNA analysis with just 9 giving confirmation of FMO3 deficiency.[/b]


Maybe the other 18 patients that weren't diagnosed with FMO3 deficiency had the same bad body odor as me, which is pretty bad but not that extreme compared to some people in documentaries. Now, supposedly a low-choline diet works for them. It means that there is something else that doesn't work properly, considering their FMO3 works.

But what would that be?

Thanks for your reply :D
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Re: Probably have TMAU...

Postby Weak » Mon Aug 13, 2012 3:47 am

Remember that it is all based on genetics. It is the same as how some people are born lactose intolerant. You were just born with a body that is weak when it comes to digesting Trimyth... and others around you were not. Now as far as other conditions that have the same symptoms as TMAU they also have the same treatments. Which is basically the TMAU diet. Although in some situations the TMAU diet may be overkill, I would still recommend going through with the TMAU diet and then as you get better you slowly introduce foods to your system to see which ones you can and cannot eat.

Apart from that there is also candida and some other kinds of fungal infections that have similar symptoms as TMAU, for that you will need to take special medicine which you can find by googling candida. But in all honesty the thing about the DNA test is that I am pretty sure that is only for TMAU1 which is a genetically inherited intolerance to trimyth... and does not include TMAU2 which is one that is gained overtime(I could be wrong, but i doubt it).(After re-reading the passage it does say "TMAU1" which is the genetically inherited for of TMAU, and is also very rare. TMAU2 is alot more common than TMAU1).

Remember that FMO3(aka vitamin B) is merely a chemical that helps the body create the stuff that breakdown TMAU into TMAU-N-Oxide which is the none smelly version of TMAU. If it worked in your body then you would not smell. Now the reason for your body stopping to breakdown TMAU can vary but the solution is always a low TMAU precursor diet. (precursors = choline, sulfer, and nitrate) By restricting what you eat you reduce the amount of TMAU you bring into your body which gives your body less TMAU to breakdown if it can break down any at all. What is left over is excrete through your sweat, urine, saliva and creates the smell. Less intake = less excreted, less excreted = less smell.

Now if were not talking about TMAU at all but some other disease or condition then you will have to look into that. But TMAU is pretty distinct in odor and discovery as not many other conditions increase the ammount of TMAU in the bloodstream to my knowledge. Which is why getting tested is so important. It help varify what condition you have. And like explained above wether or not it is TMAU if the amount of Trimyth... in your blood or urine is high then the solution is often the same which is a low TMAU precursor diet.
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Re: Probably have TMAU...

Postby timid » Mon Sep 17, 2012 11:28 am

Hi C64 it sounds to me like it could be just your hormones making your underarms and upper body smell, my son had this problem at your age too, 3 years later there's no odour at all, but he still worries about it as he was slagged a little about it at scholl back then and always asks me if he smell ok, but there's never a smell off him anymore. Try mitchum deo, it's very good and keeps you really dry, and drink plenty of water, good luck x
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