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Trimethylaminuria - Why do people treat me badly just cause I smell like feces?

i stopped reading halfway through so forgive me if its been said but - i studied sense of smell, and scents on a chemical level and i can assure anyone with a doubt that conditions such as this DO exist - and they are untreatable for the most part.

i also had a coworker years ago who had something that i suspect was like this - we had to work in close quarters and it was very uncomfortable for me....this person did not have a shit smell...but a noticeable sour type smell that never went away....i looked into it myself being interested in what the hell was going on and they never talked about it to me, although i am SURE they knew about it.

i became somewhat close with this person and did feel a deep sadness for them as they were self concious and shy in general and didnt have many friends. i always thought this condition had a lot to do with their personality as well. i wish they would have said something to me about it because i certainly never was comfortable enough to bring it up and i wanted to. iit did affect my ability to be in their presence for long periods of time....

wanted to share this with the OP so u know that there are people out there who feel sympathy for you and the condition if you do have it, and you are proabbly going to need to bring it up to people as i dont think many would feel comfortable to do so in the name of friendship - i would guess most would simply avoid it thinking you just dont wash yourself.:(
 
I was born without a sense of smell(no joke)
we can be friends?
if your a girl we can be more then friends?
 
that sounds really tough, I can't even imagine. I think we are all curious if you have taken steps to alleviate some of the smell? Maybe some intense cleanses might help. Maybe you have a crazy allergy that you don't know about. As you said, it is a rare condition, which means doctors don't know everything about it. There could be remedies?!

Best of Luck!!!
 
Mehm said:
that sounds really tough, I can't even imagine. I think we are all curious if you have taken steps to alleviate some of the smell? Maybe some intense cleanses might help. Maybe you have a crazy allergy that you don't know about. As you said, it is a rare condition, which means doctors don't know everything about it. There could be remedies?!

Best of Luck!!!
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After i got tested my doctor referred me to a dietician and i went on a low choline diet. But the low choline diet rarely works for people with tmau (it reduces the smell but doesn’t make it go away). I even tried not eating anything during the day and only eating a little at night for a while, but when i did that lost a lot of weight and started looking really unhealthy. my dietician told me starving myself like that wouldn’t help because u need a certain amount of choline to live and if u dont get enough in ur diet, ur body will actually make it. I’ve tried tons of different cleanses and things like probiotic supplements, charcoal, multivitamins, but there really is no cure.
 
please keep looking. the mind, body and universe are so immense and amazing. miraculous things happen every day <3

i feel like there a lot of things i want to say, but really, i have no grasp of your situation. only that i hope you find peace.

as to your question, you seem really cool and I would definitely want to be your friend.
 
Jackie Chan said:
It's a gas thats released from my pores, and it spreads fast, nothing can cover it. The guy who lived across the dorm from u , how bad was his shit smell?
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It's been around 15 years, and as with most poeple I knew from college, I haven't stayed in touch with him. What I remember is that the smell was strong enough to smell from the opposite end of the room, and the smell lingered for a little while after he left. Also, you could tell where his dorm room was when you walked down the hall. You might wonder if this bothered me. Not much. Everybody has some kind of odor. His was just stronger.

Another reason I mentioned outdoor activities as a way to socialize is for the airflow. If someone has a problem, they will probably position themselves so as not to be down wind from you.
 
When i first opened this thread i forsure thought u wer a troll.
But after reading all of it i really feel for you.
That must be a really tough condition to live with and im not sure i would be able to handle it.You must be a very strong person.
And i would forsure atleast try to be friends unless i really just couldnt handle the smell.But im guessing that after 5 or 10 min if someone was to b around you that they would get used to the smell atleast alittle no?
Anyways the only suggestion i would hav is maybe try hitting up the sauna or steamroom in the morning and just sweat alot and with watching your diet maybe the combo can work......
I wish you the best you really sound like a person that can be a great friend to someone.
you wer born with this condition you didnt choose it so no one has any right to judge you or call you names.
Those people that are not nice to you have their own issues so they take it out on you.
 
Seriously, thanks for the kind comments. I’m feeling a lot better now. Last Friday I was at a party and people started taking pictures of my ass with their cell phones and texting it to each other and saying things like, ‘here, let me send u a text, here’s the stink’. They thought I shit myself, and I could see and hear everything they were doing but they didn’t care. My friends I went with were doing it too. I really really wish I could find someone else my age who has the same condition.
 
As Mehm said, please don't give up on diet changes and finding a cure. I don't believe for a second what doctors say about things not being curable. Please don't give up!!!!

As for being your friend, it would depend, for me. I'm not a very social person regardless of how people smell so I'm not that great a person to give you perspective in that way BUT. If we truly connected and liked each other then yes, I would still care for you. I would be honest with you about how much I could tolerate though, which I understand might hurt sometimes... What I mean is, if I was literally going to vomit from the smell I might be honest and say I needed to step away and get a breather... but I wouldn't judge you or think it YOUR fault or make fun of you or anything.

As someone else mentioned, outdoor activities are good. People smell sometimes, it's all right. I had a friend a long time ago with HORRIBLE BO... in his case it was honestly probably a hygiene problem, he was truly a "dirty hippie" and didn't give a shit. But I swear to you, you would know this guy was stopping by your house 1 or 2 minutes before he got to your front door because you could literally smell him coming down the street (NO exaggeration!) and his smell would linger for hours after he'd left...

He was a really sweet person and I adored him... so hopefully that gives you some hope and positivity. I'm truly sorry you're going through this.
 
These 'friends' are at best ignorant, and at worst cruel. You could try educating them, or distance yourself so they don't get the opportunity to hurt you like this. As with any illness or disorder it must be a lonely situation, and you must feel like the only one with this problem. Have you tried joining a dedicated forum or support group? It'll help a lot to share experiences with others who can relate, and you'll be sure to make some good friends which may translate into real life friends, and you never know, even a life partner. The internet is a wonderful thing for people in situations like yours, exploit it to the max. Best of luck with what ever the future holds, and be assured that not everyone is as cold & uncompassionate as the people in your life right now.
 
Mr_Fluffykins said:
I was born without a sense of smell(no joke)
we can be friends?
if your a girl we can be more then friends?
Click to expand...

stinky people and those without a nose! A match made in heaven!

If you want to meet more people without a working nose i recommend getting into 4-mmc!
 
I'm rather amazed no biomedical engineers have come up with a way to farm the active enzyme that people such as the OP lack, using microorganisms, and administer it to them as a drug. I'm guessing it's a lack of funding and potential revenue, due to the rarity of the disease, rather than a lack of technological ability. If I were rich, I'd donate money to a lab that manufactured a drug prep of this enzyme, because this is clearly a disease that makes life far harder than it should be.
 
Wikipedia mentions one study that found a partial remedy
The results suggest that the daily intake of charcoal and/or copper chlorophyllin may be of significant use in improving the quality of life of individuals suffering from TMAU.
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http://www.ncbi.nlm.nih.gov/pubmed/15043988 Now I'm remembering three occasions where people were ostracized by a social group I was in. One was military and outside of "field conditions" a military unit does get on people they perceive to be slacking on hygiene not only because of "uniformity" but also because lower enlisted military spend a lot of time crammed in together.

Thank you for this thread because it will cause me to take into consideration a metabolic order I didn't know existed before in situations I may encounter in the future.
 
I havnt met you IRL so I dont know anything about how you might smell, however as Im reading this thread I find myself feeling slightly irritated by your attitude. It doesnt exactly seem like you would really be very enjoyable to be around, regardless of any unpleasant smell or any other physical quality you might have. Im not saying this to be mean or start a fight but honestly, if you want to make more friends you should consider how your attitude may affect how people treat you and try to work on that. It seems that you are so determined to prove how terrible your life is that you ignore anything positive said to you, assume the worse of people and respond with automatic hostility. Its a self fulfilling prophecy that will only keep you isolated and bitter

ETA: Dont get me wrong Im not suggesting you pretend everything is sunshine and that life is a bowl of cherries. Im all about venting and misery does love company, that said- theres a limit to how much people can take and also....some humour in the mix goes a long way ;) so that it doesnt make people so uncomfortable as when you just feel sorry for yourself and seem angry at them ...I hope this makes sense?
 
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ribbit said:
stinky people and those without a nose! A match made in heaven!

If you want to meet more people without a working nose i recommend getting into 4-mmc!
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HAHA yes, or blow....not too sure how they compare for nasal damage but Ive managed to errode the entire inside of my nose (not just the septum) leaving me with virtually no sense of smell after a year of daily use. Also, my dad had a stroke several years ago which caused him to entirely lose the ability to detect smell. Although he thinks he can smell things if he knows he should, so you couldnt tell him that the person is stinky lol
 
InsaneJane said:
I havnt met you IRL so I dont know anything about how you might smell, however as Im reading this thread I find myself feeling slightly irritated by your attitude. It doesnt exactly seem like you would really be very enjoyable to be around, regardless of any unpleasant smell or any other physical quality you might have. Im not saying this to be mean or start a fight but honestly, if you want to make more friends you should consider how your attitude may affect how people treat you and try to work on that. It seems that you are so determined to prove how terrible your life is that you ignore anything positive said to you, assume the worse of people and respond with automatic hostility. Its a self fulfilling prophecy that will only keep you isolated and bitter

ETA: Dont get me wrong Im not suggesting you pretend everything is sunshine and that life is a bowl of cherries. Im all about venting and misery does love company, that said- theres a limit to how much people can take and also....some humour in the mix goes a long way ;) so that it doesnt make people so uncomfortable as when you just feel sorry for yourself and seem angry at them ...I hope this makes sense?
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I get what ur saying, but in real life I’m a really passive and timid person. u get how it’s easier to get angry like that on the internet? I would never have the courage to say stuff like that in real life to anyone. I never get angry or say mean things to people I have to deal with in my life no matter what they do. But being a nice person isn’t good enough most of the time. It’s difficult to make someone who doesn’t have to deal with this understand, but being a nice person isn’t enough to make people over look it and treat you normally.
 
^I actually think that some counseling to help you take the opposite approach in this situation would be beneficial. I suspect you get treated worse partially BECAUSE you are nice and not assertive. I don't at all blame you for not being assertive, I'm pretty sure just about anyone would react the same way, myself included.

Regardless of your trimethylaminuria you do NOT deserve to be treated like this and you should not take it. The niceness is not working and I punched the fucking wall when I read about the people you went to a party with doing that to you... I am NOT an angry or violent person in the least but that got to me.

You have undoubtedly developed more character having to endure this than all those motherfuckers who treat you like you are not a person and like others have said, do not let go of hope. There are always more options out there.

I second the suggestion to meet people online... I don't smell bad (usually) and I still find a lot of fulfillment from some amazing relationships I've cultivated with people online... specifically through these forums. Phone conversations and skype also allow other interaction opportunities that, although lacking certain aspects of in-person contact, at least afford you the opportunity to interact socially and develop meaningful connections.

I would love to get to know you better so if you're interested, please private message me.
 
Cane2theLeft said:
I suspect you get treated worse partially BECAUSE you are nice and not assertive.
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^ This.

It's sad, but true, people who are overly nice tend to get stepped on and taken advantage of :( I know it take a lot of guts, but next time someone at a party or somewhere treats you like that. stand up to them. Make them feel like a jackass and publicly humiliate them for picking on someone with a chronic disease. If I ever did something like that to someone (not that I would, but just as a hypothetical senario), and they turned around and called me out for being a jerk, I'd feel like the biggest idiot ever. People who prey on the "weaker" don't expect them to do anything about it, so catch them off guard and give them some of their own medicine.

I'm sorry that you have to deal with this. To answer your question, if I met you and liked you, I'd try to hang out with you and get over the smell the best that I could. I'm not going to lie and say it wouldn't bother me, because it's human nature to have aversions to certain scents, but at the same time I would recognize that it wasn't your fault and I wouldn't judge you for it. There is a big difference between smelling bad because you are lazy and don't take care of yourself vs. having a condition that you cannot control.
 
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