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okay here it goes. Jimi i have been reading your posts between LJ and yourself. i have been thinking about them alot and i agree with you who really cares what our bb smells like so long as we find a cure. so while i was thinking i was also reading more about tmau and checking out sites where people discuss thier problems with tmau. tmau is a disease called fish maloudor disease or rotten fish disease. it can either be genetic or can be created by your body somehow in your liver and then is called secondary tmau. it is due to a inability to break down choline something that is found in all food(some more abundant than others). It only makes sense that you would smell if you can't break down choline(protiens) because they are the smelliest part of food. I seems to me that those that are born with it genetically can produce the smell through thier sweat from thier lungs or from thier breath. those who create it somehow in the body later in life called secondary tmau seem to only have it on thier breath. Heres the thing i noticed on all of the sites where people who have been diagnosed with tmau talk they post speaking of having a different type odor other than a fish odor. most people say that they have a fecal smell (shit) or smell like trash or something rotten not fish. Remember these are people that have been diagnosed with this disorder. now if some people who have had thier tonsils removed and have changed thier diet and tried everything else imaginable to rid themselves of this odor why not get tested for tmau just to rule it out. I KNOW IT IS NOT CURABLE. BUT PLEASE LISTEN TO MY ARGUMENT FOR WHY WE WOULD WANT TO GET TESTED TO RULE IT OUT. If i had aids believe me i would not want to get tested and find out because it would be SCARY because i know it cannot be cured. and it seems to me that this tmau falls into this category. i would be scared to know if i had it because it is not curable. look i have been monitoring your site for months now and i have read everything on your site including your diary. i know what assholes you say your parents are and how they have been unsympathetic toward you and are maybe even crazy. I also know how you have been ripped off by all kinds of bullshit promises from products and doctors who don't know what they are talking about and are only trying to make a buck. (your dental work, getting your tonsils removed)...i also know how you said you had problems on healthboards because they can be assholes. THIS IS NOT ONE OF THOSE TIMES. Why do i know all of this? because i have read about it on your site. why do i read all of this from your site and why do i care? because i too have been having this problem and i am desparate for a cure. that is the same reason that i search the web day and night for a cure, not because i want to be an expert on badbreath. My theory is that if tmau is a supposedly rare disorder and is not really rare that there might be some way of getting funding to help fight it. it supposedly can also be controlled by antibiotics and diet If our bodys can create the overproduction of flora that cause secondary tmau then its got to be reversibe. I AM SAYING THAT IT MIGHT BE CURABLE. i don't even know if i have it yet but the more i read about the more i suspect i might because i have tried everything and this fecal(shit)breath does not ****ing go away. so please reconsider getting tested because the only place that tests in the U.S. is not for profit. i know you don't want to ***k with doctors or antiboitics because you think they have screwed you over and maybe even caused the problem but if their alot more people out there that have this and don't know about it then there might be some way to get funding for a cure. because i believe like you that i won't give up and anything is curable but not if we don't even know what is causing the problem
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Jimi Stein
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Nice post vonreall, thank you for all nice thoughts. Look I am not going to get tested for tmau. I hate doctors somehow. I always felt strong sideeffects after taking drugs, antibiotiscs so I just do not visit them anymore. Also they do not give me a solution. I had checked all my main organs few years ago and I remember how my father got ****ing abusive after we came back from stomach checkup, and the doctors could not find nothing really wrong.
He went ballistic, like always when I dared to talk with him about bad breath.
I am wondering am I the only one who have such abusive parents and also have bad breath. I have not read about others having such major problems with parents.
Like I have the feeling that your parents still like you though you have bad breath.
I think I will never speak with my father again. He was a real prick just looking me thru the bad breath point of view. Once I rememer he entered my room when I was crying and he screamed stop crying - do you want me to pour water on your head.
And how can a parent call his child a pig .............
I am happy for you others that you do not have to have such abusive parents.
He went ballistic, like always when I dared to talk with him about bad breath.
I am wondering am I the only one who have such abusive parents and also have bad breath. I have not read about others having such major problems with parents.
Like I have the feeling that your parents still like you though you have bad breath.
I think I will never speak with my father again. He was a real prick just looking me thru the bad breath point of view. Once I rememer he entered my room when I was crying and he screamed stop crying - do you want me to pour water on your head.
And how can a parent call his child a pig .............
I am happy for you others that you do not have to have such abusive parents.
hey jimi,
Sorry to hear about what a jerk your father was, that sucks. My dad left my siblings and i when i was thirteen years old. i am in my early thirties now man i carried alot of hate for many years for that man. i have finally let it go, it was hard though. i haven't seen him in ten years and suspect he may be dead(he had a bad drinking problem). thankfully i have my mom for support. i know that you do not have that luxury, but you may not realize that you do have talent. your website is exceptional and has a worthy cause. i think if you can somehow you need to distance yourself from those negative influences like your parents. i can see how getting burned will cause you to stay away from fire and i am sorry you will not get tested. i was just trying to put one more piece to this puzzle together. thanks
Sorry to hear about what a jerk your father was, that sucks. My dad left my siblings and i when i was thirteen years old. i am in my early thirties now man i carried alot of hate for many years for that man. i have finally let it go, it was hard though. i haven't seen him in ten years and suspect he may be dead(he had a bad drinking problem). thankfully i have my mom for support. i know that you do not have that luxury, but you may not realize that you do have talent. your website is exceptional and has a worthy cause. i think if you can somehow you need to distance yourself from those negative influences like your parents. i can see how getting burned will cause you to stay away from fire and i am sorry you will not get tested. i was just trying to put one more piece to this puzzle together. thanks
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Jimi Stein
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I think you could be onto something von.
I've been doing some reading as well and shit breath definitly looks to be a symptom of TMAU. And while there isn't a cure yet, it looks like people have had success in controlling it.
Jimi, you are saying that people have bad reactions when you are near them. Maybe it is a possibility that it is not just your breath? Maybe it is a general smell? I personally don't think the smell is limited to my breath. Hope that doesn't make anyone even more paranoid.
But if i had access to get tested for it i would. I'm in australia and i haven't been able to find anything online yet. At least if the result came back negative you could cross it off the list of possibilities. If it came back positive, you would know what you are fighting, and would be able to explore ways to fix it. So i say if you have access to the test do it.
What would be better, spending a couple of hundred on a test, or living like a hermit scared to talk to anyone and spending thousands on dodgy treatments that only concentrate on the mouth.
I wish i had that choice.
I've been doing some reading as well and shit breath definitly looks to be a symptom of TMAU. And while there isn't a cure yet, it looks like people have had success in controlling it.
Jimi, you are saying that people have bad reactions when you are near them. Maybe it is a possibility that it is not just your breath? Maybe it is a general smell? I personally don't think the smell is limited to my breath. Hope that doesn't make anyone even more paranoid.
But if i had access to get tested for it i would. I'm in australia and i haven't been able to find anything online yet. At least if the result came back negative you could cross it off the list of possibilities. If it came back positive, you would know what you are fighting, and would be able to explore ways to fix it. So i say if you have access to the test do it.
What would be better, spending a couple of hundred on a test, or living like a hermit scared to talk to anyone and spending thousands on dodgy treatments that only concentrate on the mouth.
I wish i had that choice.
TMAU testing
Hi:
I found a place in the US that does the TMAU testing for a reasonable price. It's $250 for the urine test and $150 for the blood test. I imagine there are other costs such as the lab costs for drawing the blood and taking the urine. They would also have to ship it, with maybe dry ice, and I'm sure we would have to pay for that. But my feeling would be the cost total would be no more than $600.
I don't have the money yet to do it, but I will be putting it aside so that maybe I can get tested this year.
I was talking to a couple other people who have bad breath, mostly fecal odor, that were tested postive for the secondary type of TMAU.
And interestingly, one of them posted the results at work so that people could see them and then they could spread it around to other people who might have wondered why this person smelled so bad.
I think I could live with the diagnosis because it would be a place to start. I agree with Vonreally that if they find that TMAU isn't as rare as once thought, then maybe a grant could be gotten for more research.
I think most of us with the fecal odor that have had absolutely no success with anything we've tried, would be smart to have this checked. The brick wall we feel we are up against may really be there, so let's not ignore it.
Jimi, I'm sorry that you have no support from your parents, and that they have made your situation worse by trying to block you getting help. My parents are not supporting me in this either. My mother, god rest her soul, literally laughed in my face when I told her I was going to Dr. Katz for bad breath. She told me I didn't have bad breath and it was all in my mind. Interesting though, she had bad breath too. She may well have not been able to smell mine and thought it was hers. She knew she had it.
However, you must have some good friends who you can trust? If not, maybe you should consider meeting up with some of the people on your site and getting some feedback from them.
I do consider the TMAU a good possibility as the cause of my condition. And if I find out that is the case I will make the most of it. Yes, I'll try to eat right, maybe take the antibiotics, I don't really like antibiotics, or find some other avenues to test.
But socially, I will make the most of it. Right now I can't talk about my bb issue because people will automatically assume I dont have proper dental hygeine. People associate bb with lack of dental hygeine. Or they will try to help and ask me about all the things I tried. That is uncomfortable. But if I tell them I have a disorder with a name, then what can they say really?
I think I can get by with a diagnosis and use it to my benefit. I would like to be honest with people but I can't without a diagnosis. It's the key to communicating the problem to other people. What do I say now? Gee, I stink, sorry, I don't know what it is, it's something. That never works. People always want to question me more and they look at my teeth carefully while they're doing it.
So, in conclusion, I think it's something that should be explored and I don't see it as a dead end. A diagnosis yes, a dead end no.
Jimi, I hope that you begin to think about this and consider that it's a possiblity. Whether or not you like doctors doesn't matter, what matters is that we get to the truth of the situation. LJ
I found a place in the US that does the TMAU testing for a reasonable price. It's $250 for the urine test and $150 for the blood test. I imagine there are other costs such as the lab costs for drawing the blood and taking the urine. They would also have to ship it, with maybe dry ice, and I'm sure we would have to pay for that. But my feeling would be the cost total would be no more than $600.
I don't have the money yet to do it, but I will be putting it aside so that maybe I can get tested this year.
I was talking to a couple other people who have bad breath, mostly fecal odor, that were tested postive for the secondary type of TMAU.
And interestingly, one of them posted the results at work so that people could see them and then they could spread it around to other people who might have wondered why this person smelled so bad.
I think I could live with the diagnosis because it would be a place to start. I agree with Vonreally that if they find that TMAU isn't as rare as once thought, then maybe a grant could be gotten for more research.
I think most of us with the fecal odor that have had absolutely no success with anything we've tried, would be smart to have this checked. The brick wall we feel we are up against may really be there, so let's not ignore it.
Jimi, I'm sorry that you have no support from your parents, and that they have made your situation worse by trying to block you getting help. My parents are not supporting me in this either. My mother, god rest her soul, literally laughed in my face when I told her I was going to Dr. Katz for bad breath. She told me I didn't have bad breath and it was all in my mind. Interesting though, she had bad breath too. She may well have not been able to smell mine and thought it was hers. She knew she had it.
However, you must have some good friends who you can trust? If not, maybe you should consider meeting up with some of the people on your site and getting some feedback from them.
I do consider the TMAU a good possibility as the cause of my condition. And if I find out that is the case I will make the most of it. Yes, I'll try to eat right, maybe take the antibiotics, I don't really like antibiotics, or find some other avenues to test.
But socially, I will make the most of it. Right now I can't talk about my bb issue because people will automatically assume I dont have proper dental hygeine. People associate bb with lack of dental hygeine. Or they will try to help and ask me about all the things I tried. That is uncomfortable. But if I tell them I have a disorder with a name, then what can they say really?
I think I can get by with a diagnosis and use it to my benefit. I would like to be honest with people but I can't without a diagnosis. It's the key to communicating the problem to other people. What do I say now? Gee, I stink, sorry, I don't know what it is, it's something. That never works. People always want to question me more and they look at my teeth carefully while they're doing it.
So, in conclusion, I think it's something that should be explored and I don't see it as a dead end. A diagnosis yes, a dead end no.
Jimi, I hope that you begin to think about this and consider that it's a possiblity. Whether or not you like doctors doesn't matter, what matters is that we get to the truth of the situation. LJ
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Jimi Stein
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This TMAU is really interesting. I researched it over the internet and I guess it happens in our colon, the choline can not be digested and the gases are travelling thru our body and excrete in form of sweat, bad breath etc.
But I do not have body odour, only sometimes. And I do not have a fishy smell.
TMAU is genetic disorder and both partners have to have it in mild way. 5 of every 10000 people are having TMAU. Statistic is saying that so I am not sure if that is true.
I only smelled a boy 15 years ago that smelled like fish. That is the only time I remember.
But I do not have body odour, only sometimes. And I do not have a fishy smell.
TMAU is genetic disorder and both partners have to have it in mild way. 5 of every 10000 people are having TMAU. Statistic is saying that so I am not sure if that is true.
I only smelled a boy 15 years ago that smelled like fish. That is the only time I remember.
Last edited by Jimi Stein on Wed Mar 29, 2006 6:44 am, edited 1 time in total.
hi everyone. hey traylor i've been reading more on tmau also i went to one of the support groups at yahoo (you have to be approved, i explained my situation with bb and that i didn't know the source) and they let me on. i got a little choked because over and over people are talking about haveing the same fecal symptoms. alot of people have bo associated with thier bb that is garbage like or fecal and some don't. i don't have bo but apparently there are different degrees of this disorder. now what is cool i that tmau is directly related to choline intake and that if you reduce your choline you cut down or eleminate the problem entirely but only temporalily. i was reading about diet on there and apparently you have to stay away from alot of different types of food that are high in choline. ***k, i would do just about anything not to have this problem even if i could only eat one kind of food for the rest of my life. but the diet is not that bad and alot of foods are on there you just have to stay away from certain ones. there are also alot of members on this sight and alot of people all over the world. these people have been diagnosed and know how to deal with this problem. they have all kinds of suggestions on things you can do to lead a pretty normal life if you are diagnosed. one lady said she had the odor under control but didn't know what to do with herself because she had been hiding so long and had lost all her social skills. i wish i had that problem because i am sick of hiding because of something that i don't know what it is and have no control over it. thankfully my social skills are still in tact as well as my sense of humour i all need to do is find out what the ***k is going on and get on with my life. good luck to all of you and i am getting tested as soon i can.
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Jimi Stein
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Jimi Stein
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sorry jimi
the site is
http://health.groups.yahoo.com/group/Trimethylaminuria/
you will need to sign up and give a reason as to why you want to join the group.
the site is
http://health.groups.yahoo.com/group/Trimethylaminuria/
you will need to sign up and give a reason as to why you want to join the group.
TMAU
Jimi:
here's the link to the TMAU testing. http://www.hbri.org/TMAuria.htm
I just want to say that much of the info about TMAU is about the genetic disorder, which is associated more with the fishy odor. The secondary TMAU, doesn't have the same notoriety with fish, it's more likely to be fecal or just bad.
And I tried fooling with the diet part of it a while ago, but found that it didn't help. I gave it about a month. The problem is that not everyone responds to the diet. Nor the antibiotic, Flagyl, which is the drug of choice for the problem.
You are on a vegetarian diet, but you should check to see how much choline is in the things you eat. I'm sure you eat beans for protein, and they are high in choline. Bananas and apples are out. And wheat grains are out. You can find the list of foods for TMAU and check to see what you eat right now that is high in choline.
I think we will find that there are going to be people with this problem and it's pattern may have to do with the fecal odor. Others with bad breath that don't have that odor may need to find out what there odor is before undertaking the tests.
I've spent a lot of time on these bad breath boards and I think there will be people who come up positive for TMAU, but there will be others that have something different. There seem to be some patterns to this. LJ
here's the link to the TMAU testing. http://www.hbri.org/TMAuria.htm
I just want to say that much of the info about TMAU is about the genetic disorder, which is associated more with the fishy odor. The secondary TMAU, doesn't have the same notoriety with fish, it's more likely to be fecal or just bad.
And I tried fooling with the diet part of it a while ago, but found that it didn't help. I gave it about a month. The problem is that not everyone responds to the diet. Nor the antibiotic, Flagyl, which is the drug of choice for the problem.
You are on a vegetarian diet, but you should check to see how much choline is in the things you eat. I'm sure you eat beans for protein, and they are high in choline. Bananas and apples are out. And wheat grains are out. You can find the list of foods for TMAU and check to see what you eat right now that is high in choline.
I think we will find that there are going to be people with this problem and it's pattern may have to do with the fecal odor. Others with bad breath that don't have that odor may need to find out what there odor is before undertaking the tests.
I've spent a lot of time on these bad breath boards and I think there will be people who come up positive for TMAU, but there will be others that have something different. There seem to be some patterns to this. LJ
hi guys, i was pretty excited last nite because it looks like diet and tmau may be the cause of what is making our life hell. it give me hope to know i that i might be able to fight this. jimi you asked for more info about the diet and foods you can eat and it looks like LJ answered your questions. i like how she worded. the diet may not be the answer because you may not have tmau, this is exactly why we need to know what we are fighting. if it the problem is tmau then it will probaly take alot of experimenting with different vesions of the diet to find what is right for you. i was reading how some foods set some people off and the same foods don't cause any problems for another. i guess it will takes some time to figure out the right combo to make it work if you have the disorder. one guy said coffee is really bad for him. like i said earlier i can deal with a very restricted diet if it will give me back my freedom. also LJ is right it looks like some people have had luck with the antiobiotics and others do not, i guess it is just trial and error. i have seen alot of people on the boards speaking of tmau and only have the bb symptom so i hope there is a link between the two and if there is then i hope we can find a common diet or drug to help us all.
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Jimi Stein
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