Post by Arun Nagrath on Jun 29, 2011 18:27:49 GMT
tintin10
Member
Join Date: Sep 2010
Location: cork
Posts: 38
TMAU or not?
Hi everyone,
It's true that there's a whole range of conditions which we here suffer from that causes us to have odour problems. Tmau is just one of these. To make matters more complicated there are various types of tmau (primary and secondary) and as Maria has pointed out even if you were diagnosed with tmau that might not be the whole story as it can co-exist with other affiliated disorders also. I guess one of the main reasons tmau is mentioned so much here is because it is one of the very few odour causing conditions that is an officially recognised disorder by the medical community.
Anyway from what I've read here and elsewhere I was wondering if there are two signature symptoms of tmau. Firstly it's not just one type of smell you may suffer from but a range of them - fishy, fecal, garbage, sewage, burning plastic, stale cigarettes - over a period of time. Also the distance at which people can smell you from is very far. There's a youtube clip of one woman who suffers from it saying how her smell can fill up an entire auditorium and other people on here say how their neighbours can smell them. (I know how you feel)
Ok so I'm just wondering is this correct. Are there people here who do suffer these symptoms but don't have tmau or people diagnosed with tmau but whose problems manifest themselves in a different way from that described above?
Last edited by tintin10; 16th April 2011 at 04:37 PM.
#2
16th April 2011
William
Senior Member
Join Date: Jan 2009
Posts: 249
Re: TMAU or not?
I have yet to be tested for TMAU. I will say this much though, initially when I started having a chronic odor condition, I smelled of fried meat. Then it progressively got worse and changed to a garlic odor, then chemical within about 2 or 3 years. Now it's cigarette, cigar, garbage, chemical, sweaty socks, gym odor, cheesy; just plain unpleasant. I wasn't born this way; I don't remember having this condition growing up as a child.
The only medical condition that I have been diagnosed with is IBS-C (Irritable Bowel Syndrome with Constipation) I don't know which one is more debilitating at times; my MEBO or IBS-C. Also, largely it really depends on what I eat. I'm a vegetarian, so a low choline diet is out. I've tried a modified version of the low choline diet and no dice. I've also taken probiotics, activated charcoal, bodymint, body odor blocker and nullo; all with limited to no real lasting effects. My MEBO is everyday, nonstop. I use to have days and weeks with no BO; now, it's everyday all day, nonstop.
#3
16th April 2011
Mr. Stinky
Member
Join Date: Apr 2011
Location: Dublin
Posts: 32
Re: TMAU or not?
tintin,
I have the symptoms which you describe but I don't yet know if I have TMAU. I have contacted a specialist by e-mail rather than go to another randomly selected GP so hopefully I will soon know exactly what the cause is or what the causes are.
#4
16th April 2011
shania12345
Member
Join Date: Aug 2010
Location: syracuse
Posts: 59
Re: TMAU or not?
William,
You need to talk to Webster and ask him about the diet because he just posted that he is a vegetarian and doing successfully on the low choline diet. Ask him what he eats. I know it's different with everyone but couldn't hurt to try.
Shania
#5
16th April 2011
William
Senior Member
Join Date: Jan 2009
Posts: 249
Re: TMAU or not?
Thanks Shania for the suggestion. I'll have to remind myself to send Webster an email, asking him what he eats to keep his odor under control. Reading his latest updates; it sounds like he's headed in a positive direction, and that's a good thing! Although I wish it were me; it makes me happy to know that people are successfully living their lives, in spite of having MEBO/TMAU. That in itself is cause for hope, for the rest of us. Thanks again Shania for the suggestion.
#6
17th April 2011
webster
Member
Join Date: Nov 2009
Location: modiin
Posts: 95
Re: TMAU or not?
hi people, i can tell you what i eat, its not a secret, today i ate rice, burgul, chick peas,vegetable salad, a malawach (israeli dish made of dough) jahnun (also made of dough) a little bit of cottage cheese, you can also eat some ice cream i like ben and jerries, a little bit of cookies, a lot of fruit and vegetables except onion and garlic. humus, falafel is also good, thats the main things.
#7
17th April 2011
tintin10
Member
Join Date: Sep 2010
Location: cork
Posts: 38
Re: TMAU or not?
Sorry to hear William and Mr S that you are both in the same boat as I am in terms of having to cope with a range of different unpleasant odours. It is just so weird sometimes. Most of the time I can't smell myself at all but realise from other people's reactions that I must do. However now and again these stink bomb bursts of odour suddenly come over me. I know milk and certain types of meat, especially bacon, have brought on these episodes in the past, maybe it's the same with you guys. However even though I now go dairy free and rarely eat meat these outbursts still occur.
Actually I got tested for tmau a little while back but it's not going to be till late May when i get the results. Mr S I got it done at the Children's Hospital with Prof Eileen Treacy - is she the specialist who you refered to? In case it isn't here are her details -
Systemic body odor and/or halitosis sufferers in Ireland can be referred to Dr Eileen Treacy in Dublin
Finding expert help for systemic body odor and/or halitosis can be very difficult if not impossible (for most it is impossible). However, sufferers in Ireland who feel their odor problem is systemic can be referred to Dr Eileen Treacy at the National Centre for Inherited Metabolic Disorders in the Childrens University Hospital in Dublin. Dr Treacy gave us permission to publish her instructions for referral in a post. The person must go through their Irish GP to get an appointment. Dr Treacy wrote :
We are happy to take Irish referrals. These should be made by writing (not email) from the individuals’ GP to the address below (National Centre for Inherited Metabolic Disorders).
Best wishes,
Eileen Treacy
Prof. Eileen Treacy,
Metabolic Consultant,
National Centre for Inherited Metabolic Disorders
Childrens University Hospital,
Temple St.,
Dublin 1
#8
18th April 2011
Mr. Stinky
Member
Join Date: Apr 2011
Location: Dublin
Posts: 32
Re: TMAU or not?
Yes I contacted Prof. Treacy.
Speaking of stink bombs, does Budweiser cause a stink bomb for you? I had some budweiser a while back and when I got a whiff of my breath I cringed. I have given up drinking.
I think dairy causes a smokey smell. People in work have insisted that I smell of cannabis smoke in the past. They where passing obnoxious jokes, over and over and over again about this, however since I gave up dairy I have not received any such remarks.
I think steak causes a strong smell of faeces. Most of the time the odour is just plain unpleasant which people can't put a name to.
tintin, have you had difficulty with GPs?
#9
19th April 2011
tintin10
Member
Join Date: Sep 2010
Location: cork
Posts: 38
Re: TMAU or not?
Hi Mr S,
Yep I've had to give up drinking alcohol as well, really miss my few cans of bud I think I've read somewhere that while you should avoid alcohol as it kills good bacteria in our guts a small glass of spirits like brandy or vodka is preferable to beer and wine in terms of ease of digestion.
About Prof Treacy I think she might be away at the moment. Initially I was supposed to go back to see her this month but a while ago I got a letter saying my appointment has been put back to late May. Also I emailed her around two weeks ago but I still haven't got a reply yet. Maybe she's on a leave of absence or something.
Believe me you're not the only one to have problems with gps on this forum. It's a very regular complaint here about doctors not taking peolpe seriously either not having an idea of what to do at best or thinking they're crazy at worst. My gp hasn't been too much help, he says I have ibs brought about by stress - there's probably something to what he says but as I've said before loads of people have ibs but that doesn't make them smell of feces or of burning.
I did go and see a good alternative health doctor based in Naas called Dr John McKenna. He wrote a very good book called Hard to Stomach which made a lot of sense to me. He said my problem was that I was unable to digest protein - it sounds like it could be yours as well as you've mentioned you have problems with milk and steak. Overall though I definately think you are on the right track of trying to arrange an appointment with Prof Treacy first. For one thing it doesn't cost anything and really she probably is the only health professional in Ireland who has a full understanding of our condition. Hope you get to see her soon.
#10
25th April 2011
Carmen
Junior Member
Join Date: Apr 2011
Location: Groningen
Posts: 5
Re: TMAU or not?
DEAR people HELP!!
My body odor started a year ago when I was using allot of speed, but when I used I smelled very bad but it was gone after I went to sleep. Then I started drinking allot and the same thing happened.. But with the alcohol the body odor stayed for almost a week! So I stopped using drugs and alcohol. I've been sober for almost a year. But when I got to the gym the same body odor came and it stayed for 3 days! Even after showering it's still there, and I'm not poor hygiene! I also got the body odor after I was sun banking, I can't smell it myself but others can! It's so bad that my neighbors smelled it, many times when the body odor starts my ears and face start glowing like he'll and my cheeks are overheated! What is this can any one help me!?!?
#11
5th May 2011
rr30
Member
Join Date: Mar 2011
Location: NW England
Posts: 76
Re: TMAU or not?
Quote:
Originally Posted by Carmen
DEAR people HELP!!
My body odor started a year ago when I was using allot of speed, but when I used I smelled very bad but it was gone after I went to sleep. Then I started drinking allot and the same thing happened.. But with the alcohol the body odor stayed for almost a week! So I stopped using drugs and alcohol. I've been sober for almost a year. But when I got to the gym the same body odor came and it stayed for 3 days! Even after showering it's still there, and I'm not poor hygiene! I also got the body odor after I was sun banking, I can't smell it myself but others can! It's so bad that my neighbors smelled it, many times when the body odor starts my ears and face start glowing like he'll and my cheeks are overheated! What is this can any one help me!?!?
Hi Carmen, I can absolutely relate to you, apart from the drugs bit lol, although I am only 19 and this started after I drunk loads of alcohol one night and had a bit of food poisoning at the same time, also, after eating meat which hadn't been properly cooked. I get hot all over my body, and feel really sweaty which is when my smell seems to be at it's peak.... As for this bit I think we both suffer from anxiety.... it's almost like a panic attack, because a simple cough of sniffle from someone, or maybe a comment, seems to trigger and flare everything up.... Do you find that is the case with yourself?
Personally, I think I have only ever smelt it myself three times, when I am most anxious, twice it has smelled like dog feces (not human feces for some reason) and the other time I smelt it, it smelled like human feces. Ionly ever got the odd whiff of it when I did smell it, and it definitely seemed to be coming from myself as people were reacting really oddly to me by coughing A LOT, even mentioning "what's that smell" to each other, and then staring at me. So, I have no doubt the smell is pretty bad, but the thing is, my mum cannot smell a thing! Hence, it must probably be TMAU of some sort. Although, I would appreciate it if someone on here thinks otherwise? Could it still be something else and my close family (mum and bro), cannot smell a thing? I used to have loads of friends, and now the majority of them have dropped me of, and I assume it is because of this, all since the event where I drank excessive alcohol and food poisoning.
I have had enough of all of this after around 10 months, and so I am going to fork out £170 for a test here in the UK for TMAU, even if it's just to eliminate that condition then it will be one less thing off my mind, and hopefully eventually, whatever it is, I could control it. I have had enough of my doctor(s), they don't really want to know about it and just talk about hygiene... I have superb hygiene!!!!
I suggest you begin with a test for TMAU like myself, and see how it goes, you may have TMAU2 (which I believe is a good possibility of my own), although I am no expert.
Good luck and please get back to me, I will keep looking out for your response.
Last edited by rr30; 5th May 2011 at 08:28 PM.
#12
5th May 2011
Alf
Member
Join Date: Mar 2009
Location: UK
Posts: 68
Re: TMAU or not?
Quote:
Originally Posted by Carmen
DEAR people HELP!!
My body odor started a year ago when I was using allot of speed, but when I used I smelled very bad but it was gone after I went to sleep. Then I started drinking allot and the same thing happened.. But with the alcohol the body odor stayed for almost a week! So I stopped using drugs and alcohol. I've been sober for almost a year. But when I got to the gym the same body odor came and it stayed for 3 days! Even after showering it's still there, and I'm not poor hygiene! I also got the body odor after I was sun banking, I can't smell it myself but others can! It's so bad that my neighbors smelled it, many times when the body odor starts my ears and face start glowing like he'll and my cheeks are overheated! What is this can any one help me!?!?
Hello Carmen
There is a researcher in Groningen with an interest in halitosis. Maybe he will be able to help you with testing in some way, though perhaps not.
Dr Albert Tangerman
Center for Dentistry and Oral Hygiene, Department of Periodontology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands
#13
6th May 2011
abcd
Junior Member
Join Date: Apr 2011
Posts: 25
Re: TMAU or not?
Does anyone sometimes smell like garlic along with other days smell like fecal, sewage, fish, burn plastic, cigarette?
#14
6th May 2011
rr30
Member
Join Date: Mar 2011
Location: NW England
Posts: 76
Re: TMAU or not?
Quote:
Originally Posted by abcd
Does anyone sometimes smell like garlic along with other days smell like fecal, sewage, fish, burn plastic, cigarette?
I have no idea, I can rarely smell myself, just people tell me about when I do....
#15
7th May 2011
hope for the future
Junior Member
Join Date: Mar 2010
Location: London
Posts: 15
Re: TMAU or not?
Hi there,
I can completely relate to William's symptoms except that I also have terrible breath that varies in the type of smell.
I have tested negative for TMAU so am not sure what is causing the imbalance of bacteria and the strong smells.
HFTF
abcd
Junior Member
Join Date: Apr 2011
Posts: 25
Re: TMAU or not?
Anyone tried Grapefruit Seed Extract? I just started taking it now to try to get rid of the garlic odor.
#17
18th May 2011
tutuy19
Junior Member
Join Date: Apr 2011
Location: Valenzuela City
Posts: 26
Re: TMAU or not?
hi you guys, i cant afford to have a testing of TMAU right now...unfortunately...so im just relying on the common symptoms of other member in this society...
here is my case im 21 years old, i also smell like burning, garlic, sewage, garbage, rotten,socks odor,and some kind of salty smell like some kind of soy sauce...i also have a smell of cheese when i rub my chin...some says it is a thrush or candida infection...i also wanted to know what are the diets you are taking right now...im just relying in this forum because i think there is no doctor here in the Philippines that specializing in this kind of condition of ours...
#18
20th May 2011
suzuki
Junior Member
Join Date: May 2011
Location: cobh
Posts: 15
Re: TMAU or not?
Quote:
Originally Posted by tintin10
Hi everyone,
It's true that there's a whole range of conditions which we here suffer from that causes us to have odour problems. Tmau is just one of these. To make matters more complicated there are various types of tmau (primary and secondary) and as Maria has pointed out even if you were diagnosed with tmau that might not be the whole story as it can co-exist with other affiliated disorders also. I guess one of the main reasons tmau is mentioned so much here is because it is one of the very few odour causing conditions that is an officially recognised disorder by the medical community.
Anyway from what I've read here and elsewhere I was wondering if there are two signature symptoms of tmau. Firstly it's not just one type of smell you may suffer from but a range of them - fishy, fecal, garbage, sewage, burning plastic, stale cigarettes - over a period of time. Also the distance at which people can smell you from is very far. There's a youtube clip of one woman who suffers from it saying how her smell can fill up an entire auditorium and other people on here say how their neighbours can smell them. (I know how you feel)
Ok so I'm just wondering is this correct. Are there people here who do suffer these symptoms but don't have tmau or people diagnosed with tmau but whose problems manifest themselves in a different way from that described above?
hi I see you are in Cork too, I got my gp to contact the consultant biochem in cork regional and I just had to fill 2 test tube things with urine and I dropped it into the biochem dept and they put acid or something in it and sent it off straight away to Sheffeld to Dr Nigel Manning and I got my results in just over a week so anyone in Ireland should be able to get the same , ps it also cost me nothing as it is covered on the medical card
#19
20th May 2011
suzuki
Junior Member
Join Date: May 2011
Location: cobh
Posts: 15
Re: TMAU or not?
Quote:
Originally Posted by tutuy19
hi you guys, i cant afford to have a testing of TMAU right now...unfortunately...so im just relying on the common symptoms of other member in this society...
here is my case im 21 years old, i also smell like burning, garlic, sewage, garbage, rotten,socks odor,and some kind of salty smell like some kind of soy sauce...i also have a smell of cheese when i rub my chin...some says it is a thrush or candida infection...i also wanted to know what are the diets you are taking right now...im just relying in this forum because i think there is no doctor here in the Philippines that specializing in this kind of condition of ours...
Im sorry to hear that because of your location that you cant get tested, I would try the hospital bio chem dept Im sure if you explain your situation a doctor may help you, how much would it cost you to get tested in your country If I could I would help and I hope you get answers soon
#20
22nd May 2011
tintin10
Member
Join Date: Sep 2010
Location: cork
Posts: 38
Re: TMAU or not?
Hi Suzuki,
You're lucky to be living in Cobh. It is such a beautiful place. Could i just ask the name of that consultant you got tested with? I had thought Prof eileen Treacy up in Dublin was the only person in ireland who tested for tmau so was surprised to hear that. Actually while I've yet to get my exact results I know my tma levels were considered to be normal. I think there's a possibilty that this is an inaccurate result so I might try and go for a second test just to be sure.
Am sorry to hear about your troubles. It's such an astonishing story you have of people convincing you that suffered from ors but really had tmau1 all along.
Btw as you have joined here recently you mightn't have come across Maria's post about the tmau protocol - www.bodyodorsupport.com/showt...light=protocol
Also this thread is very informative as well -
www.bodyodorsupport.com/showthread.php?t=5380
At least now you know what is at the root of your problem hopefully you'll have some success treating it.
#21
3 Days Ago
suzuki
Junior Member
Join Date: May 2011
Location: cobh
Posts: 15
Re: TMAU or not?
Quote:
Originally Posted by tintin10
Hi Suzuki,
You're lucky to be living in Cobh. It is such a beautiful place. Could i just ask the name of that consultant you got tested with? I had thought Prof eileen Treacy up in Dublin was the only person in ireland who tested for tmau so was surprised to hear that. Actually while I've yet to get my exact results I know my tma levels were considered to be normal. I think there's a possibilty that this is an inaccurate result so I might try and go for a second test just to be sure.
Am sorry to hear about your troubles. It's such an astonishing story you have of people convincing you that suffered from ors but really had tmau1 all along.
Btw as you have joined here recently you mightn't have come across Maria's post about the tmau protocol - www.bodyodorsupport.com/showt...light=protocol
Also this thread is very informative as well -
www.bodyodorsupport.com/showthread.php?t=5380
At least now you know what is at the root of your problem hopefully you'll have some success treating it.
hey , you donty need to go to dublin or see a consultant just your gp, my gp is great one of the nicest doctors in the country , what you do is go to your gp and explain what tmau is and get your doctor to contact the dude in biolab i think in cuh hospital and he will explain it to your doc and you pee into 2 test bottles and drop them in to the dept in the hospital and they will send it to sheffeld and your doc will get the result back in a week or 2 max, sorry now i cant think of the hostipal dept name i think its bio something its located on the first floor right down at the end of the hospital, hope that helps, remember for this condition most docs dont know about it so you have to be prestisant
#22
1 Day Ago
race64
Junior Member
Join Date: Jan 2011
Posts: 22
Re: TMAU or not?
i tried Grapefruit Seed Extract but it did not work for me...
i dont really know if i have tmau because when i ask people do i smell they say no even when i told my RA to smell me he did he came smell my clothes and my arm and he said there is nothing wrong. i think my problem is my breath because when i did ask they just said chew gum.
my parents is making it even harder for me to not get tested i just wished it happened at when i am older because i would do experiments and find out instead of talking to my stubborn parents!
#23
1 Day Ago
tintin10
Member
Join Date: Sep 2010
Location: cork
Posts: 38
Re: TMAU or not?
Thanks a million Suzuki for the info, wish I had known that a while ago, would have saved me a lot of hassle. I actually did do the tmau test up in Dublin a few months ago now but it came back negative. However I know sometimes there are so called false negative test results so still haven't totally ruled out tmau. I'm trying out a different sort of treatment at the moment but if it doesn't work out I'll definately want to do another test this time following your advice. Thanks again.
Sorry Race to hear about your troubles. Grapefruit seed extract is supposed to be good in getting rid of any bad bacteria in your gut. Unfortunately I think (though I'm definately no expert on this) that it does take a while for it to work, a few months anyway. Also you may need to be taking a good probiotic at the same time to replace the bad bacteria with the right sort. Do be careful though there's a lot of probiotics out there but you may have to try out a few to find the one that's right for you. Remember too that it needs to be stored in a freezer, if you see some sitting on a shop shelf ignore them.
Finally just to make you really confused you may have to look at your diet. My problem is I can't digest certain types of foods and the undigested food stays in my gut providing a nice breeding ground for all the wrong types of bacteria. Maybe it's the same with you. I know dense protein food like red meat and nuts are a problem for me but I'm also on the low fodmaps diet if you would like to google it. Sorry for going on so much I hope you might get something out of this.
Err, just one more thing try googling small intestinal bacterial overgrowth (s.i.bo. also known as dysbiosis), statistically it's more likely you have that rather than tmau per se.
Member
Join Date: Sep 2010
Location: cork
Posts: 38
TMAU or not?
Hi everyone,
It's true that there's a whole range of conditions which we here suffer from that causes us to have odour problems. Tmau is just one of these. To make matters more complicated there are various types of tmau (primary and secondary) and as Maria has pointed out even if you were diagnosed with tmau that might not be the whole story as it can co-exist with other affiliated disorders also. I guess one of the main reasons tmau is mentioned so much here is because it is one of the very few odour causing conditions that is an officially recognised disorder by the medical community.
Anyway from what I've read here and elsewhere I was wondering if there are two signature symptoms of tmau. Firstly it's not just one type of smell you may suffer from but a range of them - fishy, fecal, garbage, sewage, burning plastic, stale cigarettes - over a period of time. Also the distance at which people can smell you from is very far. There's a youtube clip of one woman who suffers from it saying how her smell can fill up an entire auditorium and other people on here say how their neighbours can smell them. (I know how you feel)
Ok so I'm just wondering is this correct. Are there people here who do suffer these symptoms but don't have tmau or people diagnosed with tmau but whose problems manifest themselves in a different way from that described above?
Last edited by tintin10; 16th April 2011 at 04:37 PM.
#2
16th April 2011
William
Senior Member
Join Date: Jan 2009
Posts: 249
Re: TMAU or not?
I have yet to be tested for TMAU. I will say this much though, initially when I started having a chronic odor condition, I smelled of fried meat. Then it progressively got worse and changed to a garlic odor, then chemical within about 2 or 3 years. Now it's cigarette, cigar, garbage, chemical, sweaty socks, gym odor, cheesy; just plain unpleasant. I wasn't born this way; I don't remember having this condition growing up as a child.
The only medical condition that I have been diagnosed with is IBS-C (Irritable Bowel Syndrome with Constipation) I don't know which one is more debilitating at times; my MEBO or IBS-C. Also, largely it really depends on what I eat. I'm a vegetarian, so a low choline diet is out. I've tried a modified version of the low choline diet and no dice. I've also taken probiotics, activated charcoal, bodymint, body odor blocker and nullo; all with limited to no real lasting effects. My MEBO is everyday, nonstop. I use to have days and weeks with no BO; now, it's everyday all day, nonstop.
#3
16th April 2011
Mr. Stinky
Member
Join Date: Apr 2011
Location: Dublin
Posts: 32
Re: TMAU or not?
tintin,
I have the symptoms which you describe but I don't yet know if I have TMAU. I have contacted a specialist by e-mail rather than go to another randomly selected GP so hopefully I will soon know exactly what the cause is or what the causes are.
#4
16th April 2011
shania12345
Member
Join Date: Aug 2010
Location: syracuse
Posts: 59
Re: TMAU or not?
William,
You need to talk to Webster and ask him about the diet because he just posted that he is a vegetarian and doing successfully on the low choline diet. Ask him what he eats. I know it's different with everyone but couldn't hurt to try.
Shania
#5
16th April 2011
William
Senior Member
Join Date: Jan 2009
Posts: 249
Re: TMAU or not?
Thanks Shania for the suggestion. I'll have to remind myself to send Webster an email, asking him what he eats to keep his odor under control. Reading his latest updates; it sounds like he's headed in a positive direction, and that's a good thing! Although I wish it were me; it makes me happy to know that people are successfully living their lives, in spite of having MEBO/TMAU. That in itself is cause for hope, for the rest of us. Thanks again Shania for the suggestion.
#6
17th April 2011
webster
Member
Join Date: Nov 2009
Location: modiin
Posts: 95
Re: TMAU or not?
hi people, i can tell you what i eat, its not a secret, today i ate rice, burgul, chick peas,vegetable salad, a malawach (israeli dish made of dough) jahnun (also made of dough) a little bit of cottage cheese, you can also eat some ice cream i like ben and jerries, a little bit of cookies, a lot of fruit and vegetables except onion and garlic. humus, falafel is also good, thats the main things.
#7
17th April 2011
tintin10
Member
Join Date: Sep 2010
Location: cork
Posts: 38
Re: TMAU or not?
Sorry to hear William and Mr S that you are both in the same boat as I am in terms of having to cope with a range of different unpleasant odours. It is just so weird sometimes. Most of the time I can't smell myself at all but realise from other people's reactions that I must do. However now and again these stink bomb bursts of odour suddenly come over me. I know milk and certain types of meat, especially bacon, have brought on these episodes in the past, maybe it's the same with you guys. However even though I now go dairy free and rarely eat meat these outbursts still occur.
Actually I got tested for tmau a little while back but it's not going to be till late May when i get the results. Mr S I got it done at the Children's Hospital with Prof Eileen Treacy - is she the specialist who you refered to? In case it isn't here are her details -
Systemic body odor and/or halitosis sufferers in Ireland can be referred to Dr Eileen Treacy in Dublin
Finding expert help for systemic body odor and/or halitosis can be very difficult if not impossible (for most it is impossible). However, sufferers in Ireland who feel their odor problem is systemic can be referred to Dr Eileen Treacy at the National Centre for Inherited Metabolic Disorders in the Childrens University Hospital in Dublin. Dr Treacy gave us permission to publish her instructions for referral in a post. The person must go through their Irish GP to get an appointment. Dr Treacy wrote :
We are happy to take Irish referrals. These should be made by writing (not email) from the individuals’ GP to the address below (National Centre for Inherited Metabolic Disorders).
Best wishes,
Eileen Treacy
Prof. Eileen Treacy,
Metabolic Consultant,
National Centre for Inherited Metabolic Disorders
Childrens University Hospital,
Temple St.,
Dublin 1
#8
18th April 2011
Mr. Stinky
Member
Join Date: Apr 2011
Location: Dublin
Posts: 32
Re: TMAU or not?
Yes I contacted Prof. Treacy.
Speaking of stink bombs, does Budweiser cause a stink bomb for you? I had some budweiser a while back and when I got a whiff of my breath I cringed. I have given up drinking.
I think dairy causes a smokey smell. People in work have insisted that I smell of cannabis smoke in the past. They where passing obnoxious jokes, over and over and over again about this, however since I gave up dairy I have not received any such remarks.
I think steak causes a strong smell of faeces. Most of the time the odour is just plain unpleasant which people can't put a name to.
tintin, have you had difficulty with GPs?
#9
19th April 2011
tintin10
Member
Join Date: Sep 2010
Location: cork
Posts: 38
Re: TMAU or not?
Hi Mr S,
Yep I've had to give up drinking alcohol as well, really miss my few cans of bud I think I've read somewhere that while you should avoid alcohol as it kills good bacteria in our guts a small glass of spirits like brandy or vodka is preferable to beer and wine in terms of ease of digestion.
About Prof Treacy I think she might be away at the moment. Initially I was supposed to go back to see her this month but a while ago I got a letter saying my appointment has been put back to late May. Also I emailed her around two weeks ago but I still haven't got a reply yet. Maybe she's on a leave of absence or something.
Believe me you're not the only one to have problems with gps on this forum. It's a very regular complaint here about doctors not taking peolpe seriously either not having an idea of what to do at best or thinking they're crazy at worst. My gp hasn't been too much help, he says I have ibs brought about by stress - there's probably something to what he says but as I've said before loads of people have ibs but that doesn't make them smell of feces or of burning.
I did go and see a good alternative health doctor based in Naas called Dr John McKenna. He wrote a very good book called Hard to Stomach which made a lot of sense to me. He said my problem was that I was unable to digest protein - it sounds like it could be yours as well as you've mentioned you have problems with milk and steak. Overall though I definately think you are on the right track of trying to arrange an appointment with Prof Treacy first. For one thing it doesn't cost anything and really she probably is the only health professional in Ireland who has a full understanding of our condition. Hope you get to see her soon.
#10
25th April 2011
Carmen
Junior Member
Join Date: Apr 2011
Location: Groningen
Posts: 5
Re: TMAU or not?
DEAR people HELP!!
My body odor started a year ago when I was using allot of speed, but when I used I smelled very bad but it was gone after I went to sleep. Then I started drinking allot and the same thing happened.. But with the alcohol the body odor stayed for almost a week! So I stopped using drugs and alcohol. I've been sober for almost a year. But when I got to the gym the same body odor came and it stayed for 3 days! Even after showering it's still there, and I'm not poor hygiene! I also got the body odor after I was sun banking, I can't smell it myself but others can! It's so bad that my neighbors smelled it, many times when the body odor starts my ears and face start glowing like he'll and my cheeks are overheated! What is this can any one help me!?!?
#11
5th May 2011
rr30
Member
Join Date: Mar 2011
Location: NW England
Posts: 76
Re: TMAU or not?
Quote:
Originally Posted by Carmen
DEAR people HELP!!
My body odor started a year ago when I was using allot of speed, but when I used I smelled very bad but it was gone after I went to sleep. Then I started drinking allot and the same thing happened.. But with the alcohol the body odor stayed for almost a week! So I stopped using drugs and alcohol. I've been sober for almost a year. But when I got to the gym the same body odor came and it stayed for 3 days! Even after showering it's still there, and I'm not poor hygiene! I also got the body odor after I was sun banking, I can't smell it myself but others can! It's so bad that my neighbors smelled it, many times when the body odor starts my ears and face start glowing like he'll and my cheeks are overheated! What is this can any one help me!?!?
Hi Carmen, I can absolutely relate to you, apart from the drugs bit lol, although I am only 19 and this started after I drunk loads of alcohol one night and had a bit of food poisoning at the same time, also, after eating meat which hadn't been properly cooked. I get hot all over my body, and feel really sweaty which is when my smell seems to be at it's peak.... As for this bit I think we both suffer from anxiety.... it's almost like a panic attack, because a simple cough of sniffle from someone, or maybe a comment, seems to trigger and flare everything up.... Do you find that is the case with yourself?
Personally, I think I have only ever smelt it myself three times, when I am most anxious, twice it has smelled like dog feces (not human feces for some reason) and the other time I smelt it, it smelled like human feces. Ionly ever got the odd whiff of it when I did smell it, and it definitely seemed to be coming from myself as people were reacting really oddly to me by coughing A LOT, even mentioning "what's that smell" to each other, and then staring at me. So, I have no doubt the smell is pretty bad, but the thing is, my mum cannot smell a thing! Hence, it must probably be TMAU of some sort. Although, I would appreciate it if someone on here thinks otherwise? Could it still be something else and my close family (mum and bro), cannot smell a thing? I used to have loads of friends, and now the majority of them have dropped me of, and I assume it is because of this, all since the event where I drank excessive alcohol and food poisoning.
I have had enough of all of this after around 10 months, and so I am going to fork out £170 for a test here in the UK for TMAU, even if it's just to eliminate that condition then it will be one less thing off my mind, and hopefully eventually, whatever it is, I could control it. I have had enough of my doctor(s), they don't really want to know about it and just talk about hygiene... I have superb hygiene!!!!
I suggest you begin with a test for TMAU like myself, and see how it goes, you may have TMAU2 (which I believe is a good possibility of my own), although I am no expert.
Good luck and please get back to me, I will keep looking out for your response.
Last edited by rr30; 5th May 2011 at 08:28 PM.
#12
5th May 2011
Alf
Member
Join Date: Mar 2009
Location: UK
Posts: 68
Re: TMAU or not?
Quote:
Originally Posted by Carmen
DEAR people HELP!!
My body odor started a year ago when I was using allot of speed, but when I used I smelled very bad but it was gone after I went to sleep. Then I started drinking allot and the same thing happened.. But with the alcohol the body odor stayed for almost a week! So I stopped using drugs and alcohol. I've been sober for almost a year. But when I got to the gym the same body odor came and it stayed for 3 days! Even after showering it's still there, and I'm not poor hygiene! I also got the body odor after I was sun banking, I can't smell it myself but others can! It's so bad that my neighbors smelled it, many times when the body odor starts my ears and face start glowing like he'll and my cheeks are overheated! What is this can any one help me!?!?
Hello Carmen
There is a researcher in Groningen with an interest in halitosis. Maybe he will be able to help you with testing in some way, though perhaps not.
Dr Albert Tangerman
Center for Dentistry and Oral Hygiene, Department of Periodontology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands
#13
6th May 2011
abcd
Junior Member
Join Date: Apr 2011
Posts: 25
Re: TMAU or not?
Does anyone sometimes smell like garlic along with other days smell like fecal, sewage, fish, burn plastic, cigarette?
#14
6th May 2011
rr30
Member
Join Date: Mar 2011
Location: NW England
Posts: 76
Re: TMAU or not?
Quote:
Originally Posted by abcd
Does anyone sometimes smell like garlic along with other days smell like fecal, sewage, fish, burn plastic, cigarette?
I have no idea, I can rarely smell myself, just people tell me about when I do....
#15
7th May 2011
hope for the future
Junior Member
Join Date: Mar 2010
Location: London
Posts: 15
Re: TMAU or not?
Hi there,
I can completely relate to William's symptoms except that I also have terrible breath that varies in the type of smell.
I have tested negative for TMAU so am not sure what is causing the imbalance of bacteria and the strong smells.
HFTF
abcd
Junior Member
Join Date: Apr 2011
Posts: 25
Re: TMAU or not?
Anyone tried Grapefruit Seed Extract? I just started taking it now to try to get rid of the garlic odor.
#17
18th May 2011
tutuy19
Junior Member
Join Date: Apr 2011
Location: Valenzuela City
Posts: 26
Re: TMAU or not?
hi you guys, i cant afford to have a testing of TMAU right now...unfortunately...so im just relying on the common symptoms of other member in this society...
here is my case im 21 years old, i also smell like burning, garlic, sewage, garbage, rotten,socks odor,and some kind of salty smell like some kind of soy sauce...i also have a smell of cheese when i rub my chin...some says it is a thrush or candida infection...i also wanted to know what are the diets you are taking right now...im just relying in this forum because i think there is no doctor here in the Philippines that specializing in this kind of condition of ours...
#18
20th May 2011
suzuki
Junior Member
Join Date: May 2011
Location: cobh
Posts: 15
Re: TMAU or not?
Quote:
Originally Posted by tintin10
Hi everyone,
It's true that there's a whole range of conditions which we here suffer from that causes us to have odour problems. Tmau is just one of these. To make matters more complicated there are various types of tmau (primary and secondary) and as Maria has pointed out even if you were diagnosed with tmau that might not be the whole story as it can co-exist with other affiliated disorders also. I guess one of the main reasons tmau is mentioned so much here is because it is one of the very few odour causing conditions that is an officially recognised disorder by the medical community.
Anyway from what I've read here and elsewhere I was wondering if there are two signature symptoms of tmau. Firstly it's not just one type of smell you may suffer from but a range of them - fishy, fecal, garbage, sewage, burning plastic, stale cigarettes - over a period of time. Also the distance at which people can smell you from is very far. There's a youtube clip of one woman who suffers from it saying how her smell can fill up an entire auditorium and other people on here say how their neighbours can smell them. (I know how you feel)
Ok so I'm just wondering is this correct. Are there people here who do suffer these symptoms but don't have tmau or people diagnosed with tmau but whose problems manifest themselves in a different way from that described above?
hi I see you are in Cork too, I got my gp to contact the consultant biochem in cork regional and I just had to fill 2 test tube things with urine and I dropped it into the biochem dept and they put acid or something in it and sent it off straight away to Sheffeld to Dr Nigel Manning and I got my results in just over a week so anyone in Ireland should be able to get the same , ps it also cost me nothing as it is covered on the medical card
#19
20th May 2011
suzuki
Junior Member
Join Date: May 2011
Location: cobh
Posts: 15
Re: TMAU or not?
Quote:
Originally Posted by tutuy19
hi you guys, i cant afford to have a testing of TMAU right now...unfortunately...so im just relying on the common symptoms of other member in this society...
here is my case im 21 years old, i also smell like burning, garlic, sewage, garbage, rotten,socks odor,and some kind of salty smell like some kind of soy sauce...i also have a smell of cheese when i rub my chin...some says it is a thrush or candida infection...i also wanted to know what are the diets you are taking right now...im just relying in this forum because i think there is no doctor here in the Philippines that specializing in this kind of condition of ours...
Im sorry to hear that because of your location that you cant get tested, I would try the hospital bio chem dept Im sure if you explain your situation a doctor may help you, how much would it cost you to get tested in your country If I could I would help and I hope you get answers soon
#20
22nd May 2011
tintin10
Member
Join Date: Sep 2010
Location: cork
Posts: 38
Re: TMAU or not?
Hi Suzuki,
You're lucky to be living in Cobh. It is such a beautiful place. Could i just ask the name of that consultant you got tested with? I had thought Prof eileen Treacy up in Dublin was the only person in ireland who tested for tmau so was surprised to hear that. Actually while I've yet to get my exact results I know my tma levels were considered to be normal. I think there's a possibilty that this is an inaccurate result so I might try and go for a second test just to be sure.
Am sorry to hear about your troubles. It's such an astonishing story you have of people convincing you that suffered from ors but really had tmau1 all along.
Btw as you have joined here recently you mightn't have come across Maria's post about the tmau protocol - www.bodyodorsupport.com/showt...light=protocol
Also this thread is very informative as well -
www.bodyodorsupport.com/showthread.php?t=5380
At least now you know what is at the root of your problem hopefully you'll have some success treating it.
#21
3 Days Ago
suzuki
Junior Member
Join Date: May 2011
Location: cobh
Posts: 15
Re: TMAU or not?
Quote:
Originally Posted by tintin10
Hi Suzuki,
You're lucky to be living in Cobh. It is such a beautiful place. Could i just ask the name of that consultant you got tested with? I had thought Prof eileen Treacy up in Dublin was the only person in ireland who tested for tmau so was surprised to hear that. Actually while I've yet to get my exact results I know my tma levels were considered to be normal. I think there's a possibilty that this is an inaccurate result so I might try and go for a second test just to be sure.
Am sorry to hear about your troubles. It's such an astonishing story you have of people convincing you that suffered from ors but really had tmau1 all along.
Btw as you have joined here recently you mightn't have come across Maria's post about the tmau protocol - www.bodyodorsupport.com/showt...light=protocol
Also this thread is very informative as well -
www.bodyodorsupport.com/showthread.php?t=5380
At least now you know what is at the root of your problem hopefully you'll have some success treating it.
hey , you donty need to go to dublin or see a consultant just your gp, my gp is great one of the nicest doctors in the country , what you do is go to your gp and explain what tmau is and get your doctor to contact the dude in biolab i think in cuh hospital and he will explain it to your doc and you pee into 2 test bottles and drop them in to the dept in the hospital and they will send it to sheffeld and your doc will get the result back in a week or 2 max, sorry now i cant think of the hostipal dept name i think its bio something its located on the first floor right down at the end of the hospital, hope that helps, remember for this condition most docs dont know about it so you have to be prestisant
#22
1 Day Ago
race64
Junior Member
Join Date: Jan 2011
Posts: 22
Re: TMAU or not?
i tried Grapefruit Seed Extract but it did not work for me...
i dont really know if i have tmau because when i ask people do i smell they say no even when i told my RA to smell me he did he came smell my clothes and my arm and he said there is nothing wrong. i think my problem is my breath because when i did ask they just said chew gum.
my parents is making it even harder for me to not get tested i just wished it happened at when i am older because i would do experiments and find out instead of talking to my stubborn parents!
#23
1 Day Ago
tintin10
Member
Join Date: Sep 2010
Location: cork
Posts: 38
Re: TMAU or not?
Thanks a million Suzuki for the info, wish I had known that a while ago, would have saved me a lot of hassle. I actually did do the tmau test up in Dublin a few months ago now but it came back negative. However I know sometimes there are so called false negative test results so still haven't totally ruled out tmau. I'm trying out a different sort of treatment at the moment but if it doesn't work out I'll definately want to do another test this time following your advice. Thanks again.
Sorry Race to hear about your troubles. Grapefruit seed extract is supposed to be good in getting rid of any bad bacteria in your gut. Unfortunately I think (though I'm definately no expert on this) that it does take a while for it to work, a few months anyway. Also you may need to be taking a good probiotic at the same time to replace the bad bacteria with the right sort. Do be careful though there's a lot of probiotics out there but you may have to try out a few to find the one that's right for you. Remember too that it needs to be stored in a freezer, if you see some sitting on a shop shelf ignore them.
Finally just to make you really confused you may have to look at your diet. My problem is I can't digest certain types of foods and the undigested food stays in my gut providing a nice breeding ground for all the wrong types of bacteria. Maybe it's the same with you. I know dense protein food like red meat and nuts are a problem for me but I'm also on the low fodmaps diet if you would like to google it. Sorry for going on so much I hope you might get something out of this.
Err, just one more thing try googling small intestinal bacterial overgrowth (s.i.bo. also known as dysbiosis), statistically it's more likely you have that rather than tmau per se.
