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MEBO - UBIOME study 2018



MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


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TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study

Start : Aug 2016
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Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

Friday, May 8, 2009

Visiting a Dr about metabolic body odor and/or halitosis (especially 'fecal body odor')

Doctors are there to serve you, but they should be seen as gatekeepers. If you have fecal body odor or another metabolic body odor issue, referral to specialists would be the aim ... in a perfect world.
If you suffer from metabolic smells, particularly fecal or gas smells (or other 'bowel' smells), you are obviously not 'well' (in the 'normal' sense), and have a right to expect treatment (at least) from your medical system. The medical system's priority (those who work in it) is self-preservation of finance, conditions and status etc, as well as being highly motivated towards obvious defined health problems that have (supposed) answers. When visiting a Dr about a problem such as 'fecal body odor', at worst the Dr could be rude and/or arrogantly dismissive. However, it has to be understood they are there to serve you (not the other way around). The ordinary Dr should be seen as the obstacle to 'experts' (who will likely be of little use) and tests available via the system (probably of little use also, in this case). But if you could get a Dr on your side, it would be possibly helpful. So with that in mind, this post is an attempt at trying to get the most from a Dr's visit :

Notify them in advance what you will be visiting about: You can tell them by email or letter what you will be visiting about. Perhaps inform them of TMAU with a link to a couple of sites. For example, the page on trimethylaminuria . This at least prepares them and makes them aware of metabolic body odor. TMAU is the only 'accepted' metabolic odor problem, so that makes the best (and only) example of the concept. It should be also assumed the Dr doesn't keep up to date with most health issues, and will not have heard of TMAU. You will be teaching them.

Try different doctors. Doctors (probably the toughest union there is) have for decades relied upon the common courtesy that patients regard Drs as royalty, and stay with the Dr even if they seem no good and are rude. Patients should remember the system is there for patients, not for doctors. You could try going around every Dr in the surgery to see what they are like, or move elsewhere. Keep in mind, surgery Drs are only generally gatekeepers (at a minimum), who have the power to send you to local 'experts'. This would be a minimum goal. It would be better if the Dr was at least sympathetic though.

Have clear aims : If you think you may have TMAU, it would be best to find out the nearest tester and ask the Dr to send a sample there. Or be referred to a sympathetic 'expert' etc. Probably anyone who feels they have a metabolic odor problem is best to get their FMO3 DNA checked (since it deals with many sulfides and amines), but if a TMAU test is offered, it will likely be the TMAU urine test instead. Ideally, it would be best to do both, but many stop at the urine test. Or you can ask to be referred to other 'local experts', such as a gastroenterologist or metabolism unit. If you were in or near London (for example), you could ask to be referred to Dr Robin Lachmann at the Charles Dent Metabolic Unit.

Try and make yourself smell : In Dr Preti's paper in which many TMAU cases who had visited him at Monell Chemical Senses Center were discussed, even the 2 who had very little FMO3 function ( less than 30% FMO3 function) did not smell until they took the choline challenge. So it seems very possible that most cases (including 'severe') only smell transiently. Obviously if you smell in the Drs office, it will be hard for them to diagnose you as 'olfactory reference syndrome '. If you think your FMO3 enzyme is suspect, you could try 'bulking up' on fatty fish meals the previous 2 days (fatty fish are high in TMA (technically, they are high in TMA-n-oxide, but get reduced to TMA in the gut), and so it would be a straight TMA challenge test) and/or choline (this would be a TMA-bacteria test, relying on bacteria to feed off the choline and produce TMA). It would seem very important to ask a Dr if you smell. With this condition, many often assume they smell, rather than asking. Because of this, it is hard to get a true overall picture of the problem. If the Dr says you don't smell, it's very likely at that moment that you don't. But it doesn't mean you don't have a problem. Smelling 10% of the time when you don't know when you smell is not much use. It is important to understand your 'smell' as much as possible.

What tests can a Dr commonly do ? (and could be made aware of ?): If you smell fecal/gas etc, you would think at least you were worthy of a good 'gut' checkout, and liver/metabolic tests. All Medical systems are usually very conservative and resistant to new ideas (it's a wonder anything is discovered) and often learn new concepts from adverts on TV same as small children (such as yogurt ads about probiotics). They will at least be aware of some basic tests you should have a right to, but keep in mind these tests are likely to not be of much use and may only be a factor in your smelling, or not even a factor at all. These are only a brief list to get your mind thinking about the concept :

Tests normally available from a standard medical system

h pylori Unlikely to be a factor but worth ruling out
small intestine bacterial overgrowth It's unknown how common this will be in fecal body odor syndrome
Unlikely to be a factor but worth ruling out
gastroenterologist (endoscopy etc)
Get your gut checked out as best you can. Pillcam would be useful but not commonly available and expensive.
metabolism unit (VOCs, TMAU)
Would be the best choice in a perfect world. In this world, don't expect much

There are other niche labs who believe the tests offered by medical systems are not enough to get a full picture. These are labs such as Genova, Metametrix, Biolab, and many others. An example of a subset who would use these labs would be film stars and athletes looking for 'real answers'. Medical systems are usually very conservative and very slow to take up on obvious answers. Sometimes these specialist tests can be done via medical systems if the Dr is sympathetic enough. BlueCross/BlueShield allows some Genova tests. With regards testing, a problem is that as a group we do not have a profile of the syndrome (apart for those who believe that TMAU is their only issue), and so we do not know exactly what to test for. At the moment as a group, we are looking for clues, rather than doing a few tests and being confident in a diagnosis.

These are just a few ideas as to what attitude to be in when visiting a Dr about body odor and/or halitosis (they are there to serve you, but also be aware of their limitations), and to try and get the most out of the medical system. But it should be kept in mind it is the system mainly at fault, with the Dr playing a lesser role.


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