If you have explored every possible avenue in your search for the cause of bb then you really must have a TMAU test.
I have been diagnosed with tmau after 13 years of fruitless searching for a cause for my monstrous breath odour. I have, over the years, done several diets and numerous alternative treatments, as well as taken several strong antibiotics. I have always concentrated on boosting the strength and energy of my immune system. Since my diagnosis (3 months ago) I have followed the treatment protocol carefully but am not happy with it.
In Australia, there is a doctor who is ready and willing to research the condition and the Australian TMAU website are trying to raise funds for the research. In the UK, research is also non-existent so we have a 'recognised' medical condition which is largely unheard of by doctors and not given any real importance by those who DO know of it.
If you don't have tmau and think this post is not relevant to you then you are wrong. ALL halitosis/body odour conditions need to be highlighted, the taboos and myths surrounding them need to be lifted and the research into curing them needs to be better considered. Public awareness and better education of GPs could prevent lots of people from wasting their time and money on inappropriate cures. Greater public awareness of TMAU would have a knock-on effect for all halitosis/BO conditions.
Fact 1: halitosis/BO is a devastating condition to live with as it is socially isolating, therefore psychologically damaging, and encourages little sympathy from the general public or the medical profession.
Fact 2: the TMAU diet has caused weight loss in some individuals and, perhaps, could cause health problems if done over a prolonged period of time.
Fact 3: the TMAU supplements etc.are extremely expensive and, in some people, their effectiveness is not evident.
Fact 4: prolonged usage of antibiotics can cause candida, make those bad gut bacteria more resisitant in the long term and deplete our immune systems of energy.
While we are struggling to deal with this condition on a day to day basis, I don't think we should forget that a cure for this condition is not being properly researched at present. Ok, so a liver transplant may not be feasible but is that it? Enzyme replacement therapy is not an option because there is no conclusive eveidence that it could work or because it is too costly to investigate? We all know that nobody is interested enough to sponsor research into this area of medicine.
I would like to: to further publicise this condition (I saw the 'Embarrassing Bodies' and 'This Morning' clips etc) so that the condition can be destigmatised and so that those who smell but don't know why can go to get the test. My second mission is to encourage the powers that be to research this issue more thoroughly.
I am in the process of drafting a letter to send to my MP, the secretary of state and the medical research council; I don't think our condition is taken seriously enough. I would like to make contact with other UK tmau sufferers (tested or otherwise) as there is strength in numbers. I feel we must be proactive in helping ourselves and future generations of tmau sufferers. Perhaps I could collate some testimonials of people's experiences and send those off with my letter. If you are interested in this, PLEASE make contact!
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Call to arms fromTMAU sufferer UK
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halitosisux
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Great post. This is a snippet I found about TMAU:
" The current estimate of severe TMAU is not greater than around 1 in 5000, which in the USA could mean a 'severe TMAU' estimate of around 60,000. Presumably the number of 'mild' cases would be much higher."
TMAU & TMAU related causes should not be underestimated.
" The current estimate of severe TMAU is not greater than around 1 in 5000, which in the USA could mean a 'severe TMAU' estimate of around 60,000. Presumably the number of 'mild' cases would be much higher."
TMAU & TMAU related causes should not be underestimated.
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dick.karma
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halitosisux
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Malory, did you ever have your breath gases analysed - halimeter tests, oral chroma test etc? Do you know whether people with TMAU generally have low or high readings with these kinds of diagnostic tests.
Can gas chromatography be used to determine the levels of trimethylamine in the breath gas and thus determine whether or not it is of sufficient concentration to cause noticable odours?
thanx
Can gas chromatography be used to determine the levels of trimethylamine in the breath gas and thus determine whether or not it is of sufficient concentration to cause noticable odours?
thanx
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halitosisux
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I just found the "this morning" clip on youtube:-
http://www.youtube.com/watch?v=7IPV72B4-3c
Bless her, she's very courageous to go on live TV in front of a whole country to talk about it. You kind of sense the fear and fascination in the presenters because anyone could have this problem and not even know it or it can develop in anyone, so they seem genuinely very interested.
They couldnt smell anything though, but by the youtube comments It seems she hasnt yet been tested for TMAU. It may be a very mild case she has.
She doesnt smell fishy either, she has fecal odour, and it comes out of her breath.
Should have the name changed from fish odour syndrome because its only the much rarer severe forms which smell strongly fishy, the rest smell of a range of foul odours. And who is gonna remember "trymethlyaminuria" ffs, it needs a more effective name.
http://www.youtube.com/watch?v=7IPV72B4-3c
Bless her, she's very courageous to go on live TV in front of a whole country to talk about it. You kind of sense the fear and fascination in the presenters because anyone could have this problem and not even know it or it can develop in anyone, so they seem genuinely very interested.
They couldnt smell anything though, but by the youtube comments It seems she hasnt yet been tested for TMAU. It may be a very mild case she has.
She doesnt smell fishy either, she has fecal odour, and it comes out of her breath.
Should have the name changed from fish odour syndrome because its only the much rarer severe forms which smell strongly fishy, the rest smell of a range of foul odours. And who is gonna remember "trymethlyaminuria" ffs, it needs a more effective name.
I agree, Halitosisiux, TMAU should not be called fish odour. I had come across 'fish odour syndrome' on the internet but discarded it from my investigations as I didn't fit the description of it at all! (or I thought I didn't). It was only after reading the posts on this site that I bothered to get the test. My problem is fecal mouth odour. It doesn't seem much affected by restricting to low choline foods.
Oralchroma tests (done in Amsterdam) showed I had quite high methymercaptan - above the cognitive threshold - but it was not incredibly high. Halimeter readings were also not very high.
The girl on 'This Morning' has contacted me but very few others. I thought more people had this thing!
Oralchroma tests (done in Amsterdam) showed I had quite high methymercaptan - above the cognitive threshold - but it was not incredibly high. Halimeter readings were also not very high.
The girl on 'This Morning' has contacted me but very few others. I thought more people had this thing!
Hey Malory,
After 21 years of suffering from bb, and having many of the more obvious causes investigated, I'm beginning to think there's a possibility that I may be suffering from secondary TMAU. I've always rejected this in the past as I assumed (along with many others), that to suffer from this would involve smelling stongly of fish, particularly in areas where you sweat.
I've recently been investigating some of the symptoms involved in secondary TMAU, and many of them fit with my experiences. For example, the onset of my bb was around the age of 14-15 and just after a dose of antibiotics for glandular fever. It worsens around my period, and I've noticed that I develop a faint body odour after eating particular foods around this time, sort of a 'foody' kind of smell across my shoulders and chest. When I eat cheese, my breath the next day is really fishy, and I'm always incredibly bloated and constipated. I found the FAQ section of this website useful for information about symptoms if anybody is interested:
http://www.tmau.org.uk/index.php?option ... &Itemid=41
I've tried a low choline diet in the past, but I didn't combine this with taking laxatives, (which would've been needed to clear out the bacteria from the intestines), so I'm thinking of trying this again, using all the recommended supplements and adding in the laxatives.
I'd really like to be tested for secondary TMAU, but I'm worried that my GP won't take this issue seriously, or that the test will come back with a false negative, because I may have taken it at the wrong time or when the TMA? wasn't particularly high in my urine.
Anyway, I'd be really interested to hear from you with any advice you may have about this, and maybe ideas of how to persuede a GP to take this seriously. You can pm me on this site, or I could let you have my email address.
Snobuni
After 21 years of suffering from bb, and having many of the more obvious causes investigated, I'm beginning to think there's a possibility that I may be suffering from secondary TMAU. I've always rejected this in the past as I assumed (along with many others), that to suffer from this would involve smelling stongly of fish, particularly in areas where you sweat.
I've recently been investigating some of the symptoms involved in secondary TMAU, and many of them fit with my experiences. For example, the onset of my bb was around the age of 14-15 and just after a dose of antibiotics for glandular fever. It worsens around my period, and I've noticed that I develop a faint body odour after eating particular foods around this time, sort of a 'foody' kind of smell across my shoulders and chest. When I eat cheese, my breath the next day is really fishy, and I'm always incredibly bloated and constipated. I found the FAQ section of this website useful for information about symptoms if anybody is interested:
http://www.tmau.org.uk/index.php?option ... &Itemid=41
I've tried a low choline diet in the past, but I didn't combine this with taking laxatives, (which would've been needed to clear out the bacteria from the intestines), so I'm thinking of trying this again, using all the recommended supplements and adding in the laxatives.
I'd really like to be tested for secondary TMAU, but I'm worried that my GP won't take this issue seriously, or that the test will come back with a false negative, because I may have taken it at the wrong time or when the TMA? wasn't particularly high in my urine.
Anyway, I'd be really interested to hear from you with any advice you may have about this, and maybe ideas of how to persuede a GP to take this seriously. You can pm me on this site, or I could let you have my email address.
Snobuni
malory, can you smell your breath? or have any bad taste in your mouth?
i saw that this morning clip when it was on. i think the stats about TMAU are not accurate though
they said 1 in 100(maybe more) suffer from this. i think i have only come across one person who could possibly have had this. somebody i used to work with always used to smell. it was not fishy type though, it was like garbage. i used to think he just never washed but he smelt every shift and everybody knew so i think he had something like this. but that is the only one and i have met way more than 100 people
i saw that this morning clip when it was on. i think the stats about TMAU are not accurate though
they said 1 in 100(maybe more) suffer from this. i think i have only come across one person who could possibly have had this. somebody i used to work with always used to smell. it was not fishy type though, it was like garbage. i used to think he just never washed but he smelt every shift and everybody knew so i think he had something like this. but that is the only one and i have met way more than 100 people
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halitosisux
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Snobuni, ltns
Malory, thanks for your reply. Lots of people on here who've been tested with halimeters etc have been told they have low readings too. Interesting.
Danger, are you referring to people with BB? I reckon at least a quarter of all the people I come across have some degree of odour on their breath.
The main source of odour for this woman in the clip was her mouth, and it was mainly fecal. Interesting how her husband is incapable of detecting her odour. I think its possible that more of us than we realise have enough TMA in our blood to render us incapable of detecting TMA on others. When you think about it, if TMA is involved and this if this is true, it makes sense why at meetings nobody is able to smell anyone else's BB, if the same identical chemical is involved.
Testing for TMAU is also not a perfect science, even with the genetic test for primary TMAU. The way in which this problem manifests itself is also different for each person affected by it because there are factors that go with it, such as acidity, the skin, the lungs etc.
Malory, thanks for your reply. Lots of people on here who've been tested with halimeters etc have been told they have low readings too. Interesting.
Danger, are you referring to people with BB? I reckon at least a quarter of all the people I come across have some degree of odour on their breath.
The main source of odour for this woman in the clip was her mouth, and it was mainly fecal. Interesting how her husband is incapable of detecting her odour. I think its possible that more of us than we realise have enough TMA in our blood to render us incapable of detecting TMA on others. When you think about it, if TMA is involved and this if this is true, it makes sense why at meetings nobody is able to smell anyone else's BB, if the same identical chemical is involved.
Testing for TMAU is also not a perfect science, even with the genetic test for primary TMAU. The way in which this problem manifests itself is also different for each person affected by it because there are factors that go with it, such as acidity, the skin, the lungs etc.
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halitosisux
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[quote="Snobuni"
I'd really like to be tested for secondary TMAU, but I'm worried that my GP won't take this issue seriously, or that the test will come back with a false negative, because I may have taken it at the wrong time or when the TMA? wasn't particularly high in my urine.
Hi Snobuni, I prefer to reply publicly in case this is of help to anyone else.
The GP I saw was hard to convince but I was quietly assertive and took in a sheet with the name and address of the testing department on it and also told her about TMAU. Print out some info on TMAU; it helps convince the GP.
TMAU.org.uk tells you the address and explains the procedure. If you are near London, you can take in your urine specimen in person to Dr Lachmann in the metabolic unit of the UCL hospital for neurology in Queens Square. Try and arrange the date of your appointment near your period so you get a realistic reading. Also eat choline rich foods prior to the test (eggs, beans, wholemeal bread - they give you a list).
Alternatively, you can send off the specimen. It is tested in Sheffield and takes about 6 weeks to get the result.
The whole process is not fast but thankfully it is free. If it comes back negative, try looking up MEBO. I hope you dont have either TMAU or MEBO but it sounds possible.
Please write down your experiences and perhaps you will consider sending letters with us to medical research, etc.
I'd really like to be tested for secondary TMAU, but I'm worried that my GP won't take this issue seriously, or that the test will come back with a false negative, because I may have taken it at the wrong time or when the TMA? wasn't particularly high in my urine.
Hi Snobuni, I prefer to reply publicly in case this is of help to anyone else.
The GP I saw was hard to convince but I was quietly assertive and took in a sheet with the name and address of the testing department on it and also told her about TMAU. Print out some info on TMAU; it helps convince the GP.
TMAU.org.uk tells you the address and explains the procedure. If you are near London, you can take in your urine specimen in person to Dr Lachmann in the metabolic unit of the UCL hospital for neurology in Queens Square. Try and arrange the date of your appointment near your period so you get a realistic reading. Also eat choline rich foods prior to the test (eggs, beans, wholemeal bread - they give you a list).
Alternatively, you can send off the specimen. It is tested in Sheffield and takes about 6 weeks to get the result.
The whole process is not fast but thankfully it is free. If it comes back negative, try looking up MEBO. I hope you dont have either TMAU or MEBO but it sounds possible.
Please write down your experiences and perhaps you will consider sending letters with us to medical research, etc.
No. Can't usually smell my own breath but on rare occasions I smell a fart which, to my horror, comes from my mouth. This is rare - usually I can't smell it myself.danger wrote:malory, can you smell your breath? or have any bad taste in your mouth?
I no longer have any bad taste in my mouth or even tongue odour. My mouth feels actually clean and fresh and I scrape my tongue.None of this changes anything. I smell of rotten eggs/farts/rotten food. It is almost exclusively mouth odour.
Hey Hali, long time, no speak
Hi Malory,
Thanks for your reply. Does Dr Lachmann take urine samples without a referral from a GP. From what I understand from reading his website, he still needs a referral from a GP. I've considered paying for a urine test from online (you send the sample of to them, they send you the results back), but they seem to be incredibly expensive (around £350).
As I mentioned, I'm going to try the low choline diet again and see how this effects me, particularly around my period. It would be nice to know either way if I have secondary TMAU, but I'll need to pluck up my courage to approach my GP for this at some point
Thanks for bringing this issue to the attention of this board though, I think for some of us it's a possible explanation for long term chronic bb, particularly when all other underlying causes have been explored
Hi Malory,
Thanks for your reply. Does Dr Lachmann take urine samples without a referral from a GP. From what I understand from reading his website, he still needs a referral from a GP. I've considered paying for a urine test from online (you send the sample of to them, they send you the results back), but they seem to be incredibly expensive (around £350).
As I mentioned, I'm going to try the low choline diet again and see how this effects me, particularly around my period. It would be nice to know either way if I have secondary TMAU, but I'll need to pluck up my courage to approach my GP for this at some point
Thanks for bringing this issue to the attention of this board though, I think for some of us it's a possible explanation for long term chronic bb, particularly when all other underlying causes have been explored
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halitosisux
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Snobuni, I have read somewhere that GPs do not and cannot refuse to refer you for this test, unless of course they have very good reason to do so. Most GPs may not have even heard of TMAU, but that's no excuse because this service available to all NHS patients for free so if u have problems, just ask to see another doctor, or make a complaint.
Malory, how have you managed to reduce the bad taste and the odour in your mouth, though your diet?
Malory, how have you managed to reduce the bad taste and the odour in your mouth, though your diet?
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brightonguy
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FYI, yes you need a referral but it doesn't have to come from your GP - any clinician can do it. Ironically the psychiatrist I'm seeing referred me for a TMAU test. Ironic because I got referred to her for being hypersensitive about smelling bad but she's the first medical professional to take me remotely seriously. My TMAU test is scheduled for April.
