Post
Experience Project iOS Android Apps | Download EP for your Mobile Device

Tmau

This has only been a problem for me for the past 10 years. I think I've had it all my life, but because I fasted so much when I was younger (for weight control) it helped mitigate the odor. Now, that I've got healthier eating habits, this condition is ruining my life. I have had friends say they don't notice it and doctors tell me its all in my head, but at work all I hear is grousing and coughing. People assume its a soap issue, and refuse to accept that it is difficult to control. I'm working with a dietician, but reliably controlling the problem is an uphill climb. It has been tremendously isolating. And one of the least fun aspects is all the doctors who have never heard of the condition. I finally, recently  saw a geneticist who at least knew of this disorder. (although I was his first patient). He has recommended copper chlorophyllin for odor control. Have you tried that yet? I tried activated charcoal, but it didn't have an impact for me. I'm also wondering about riboflavin pros and cons. I guess the other thing I'm starting to grapple with is how to find some joy in life in spite of TMAU. I think it takes tremendous courage to face the world with this condition. I wish it was physically impossible for it to occur in any person. Sometimes I feel like screaming in frustration and despair.

Saber3604 Saber3604 46-50 7 Responses May 8, 2011

Your Response

Cancel

<p>I also have this. No one have this around here, and every one can know me coming 10m ahead. No doctor here know its cause. no gastroenterologist could treat it, because I shamed of telling every doctor, so I stopped, because they don't want to discuss this topic., (he knows it, but he don't know to treat it). People here do great sabar and bear me and no one till now let me know, but I know. of their breath suffocation and prejudging my presence. What can we do? Treatment or what. I am only one like this here in my family and place. what treatment. good that I found you.</p>

I no how you feel Ihave had tmau for a long time and it is hard to live with.

I hope I don't have tmau, it's been nearly two years, since my smell started it's getting worse now, to the point it's seriously offending some people, my mom and dad keep washing all my clothes while I am at work, they think it's a hygiene issue. I just hope I am one supplement or medicine away from being cured, as other people have reported, I live in that hope. I am going to quit my job soon, and work from home.

It's important for people with this condition to face the facts. Isolation is a symptom of these types of deseases, medical world have a lot of catching up to do. So it's important to make sure that you give yourself a fighting chance at survival.
Firstly try and think of how you are going to make money, try being self employed, try advertising sales jobs online, telesales, cold calling. That way you have a reason to be at home, and work your but off. Get a car it will help with the isolation. Listen it's going to be tough no matter what, but look for the little time out god send down, one day you will look back and say I'm glad I went through this kind of crap, because I have self respect. and at the the day, if you truly have self respect, then thats a life worth looking forward to earning self respect. Hang jn there kid. LET LIFE GIVE IT IT'S BEST SHOT, BUT TAKE IT ON YOUR CHIN

Your story seems similar to mine. I\'m 25 years old and I haven\'t been officially tested but all my symptoms add up to this tamu disorder. I\'ve only been dealing with it for about 2.5 years and it has made my life hell. I\'m so nervous when I get around ppl I slightly have a panic attack within myself if that makes any sense.
My mom tells me she can\'t smell it, but I think she could be lying and the again after doing my research she probably doesn\'t smell it. Some people can smell it and some can\'t. However when I\'m at work its a different story. People cough when I\'m around and sniffle. I\'m just praying that it goes away. It\'s a horrible thing to deal with. Just wanted to vent life is hard dealing with this.

I have been living with a foul fecal Sewage fish smell it varies from time to time ofcourse. And every time im out doors flies always follow me its so embarrasing when with friends. I stay home most of the day the good thing about that tough is that I work out every day and ive been getting bigger. I also havent had a job since march it sucks

I can relate to your bad experience. I also have had to deal with different types of smells. On the surface I try to stay calm about it, but inside i feel like I just want to crawl under a rock. Its so humiliating. I just want to shout out to people that I have TMAU and dont know what the hell to do about it. It really makes me feel so alone in this world.

I have been living with a foul fecal Sewage fish smell it varies from time to time ofcourse. And every time im out doors flies always follow me its so embarrasing when with friends. I stay home most of the day the good thing about that tough is that I work out every day and ive been getting bigger. I also havent had a job since march it sucks

I have TMAU, when I was working I have gotten many harassed by employees and they have done wrong so many times, one question was so, what doctor say everyday. I couldn't no longer perform my work, very depressed. I have try everything, I can not to smell bad, just didn't work. I have right to live just like anyone else, so I went on disability and I do see a psychiatry. I'm trying to change my life because I can't work in public, I have bought high end computer trying to work at home, I have applied no luck. I also try to work on making thing like knit, crochet and make theme coin purse try to change my carrier, so far no luck. But I'm having trouble with police officers because I'm on a DISABILITY. They have try so hard to ruin my life, they want me to end my life. I can't even come out of my own house and try to change my life. They harassed me ever since I had TMAU. While ago I did look for job while I'm being interview, he start smelling the GARBAGE wondering where smell is coming from, same thing with the doctor I see, she was look at the GARBAGE. I would like to meet someone like me who is having same kind of issue.

I feel the same way it's so embarrasing because it's only normal for us as humans to turn our faces when we smell something bad, but when you have it you try and look at both sides of the story, you wish people walked in your shoes instead of their own, than they would know how you felt, it's horriable im just learning of this disease and it's scary to know that I have something thats is really awful like why would God give this to me, when he say cleaniness is next to Godliness, maybe he want me to help others im not sure, living with this we have NO choice but to stay extra clean and stay away from people cause you feel bad, hopefully they come up with a cure, I keep praying for you.