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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info: https://youtu.be/811v7RLXP9M
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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

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MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

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
& PATM

Started May 2018 - Ongoing

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

NO LONGER RECRUITING

Participation info : LINK English

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TMAU UK end total:262
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TMAU (Dominican)
Metabolomic Profiling Study
NCT02683876

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned


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Return cut-off date : passed
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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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Saturday, October 18, 2008

hypothesis : what would a thorough examination of a fecal body odor sufferers system look like ?

The traditional way for sufferers of low-priority quality of life health problems to get help from experts seems to be a trickle-down method from public sector experts funded by government agencies (no disrespect meant. This does seem to be the method our systems currently use). With the coming of the internet, it seems an opportunity that research/help can now be sufferer led, with perhaps the roles of experts and sufferers reversed. Sufferers will be highly motivated and their sole aim will be to find a cure. In the case of bloodborne body odor and halitosis problems, it's an opportunity to understand the medical profile of a sufferer. Whereas the current medical system doesn't seem to pay much attention to complete profiling (TMAU is the only test offered, because of some anecdotal paper in 1970). An athlete is as fit as a human can be, and has no need for profiling in a 'health issue' sense, yet can tell you his current blood biotin level.

Under that premise, this post is an attempt to show where odor sufferers could be as a group with regards understanding the general medical profile of a body odor or halitosis sufferer. With the internet, the discovering of the pattern could be done as a group, as is the aims of MeBO Research, our non-profit organization whose purpose is to research metabolic body odor. The tests suggested are to promote discussion, and not intended as strict advice. Also, once the profile became typically known, its likely there would be no need to 'cover all bases' as is done in this hypothetical listing.

It would seem (until we know any better) that the 4 areas to start looking would be:

The metabolism : both for normal metabolism function and also for unusual metabolites, some of which are odor causing (i.e. what compounds are causing the smell(s). This would often overlap with 'standard' metabolism tests except when looking for totally unexpected compounds

The genetic profile (i.e. looking gene mutations that cause weaknesses etc)

Gut function (gut tests of any sort. Especially to do with digestive function and gut ecology)

Liver function
So with that in mind, here's an opening attempt to define:
What would a profile test of a bloodborne/systemic/metabolic body odor or halitosis sufferer look like ?

To attempt define the odorous chemicals: Malodorous Volatile Organic Compound urine/blood test: A volatile organic compound urine (or blood) test may be the best starting option. This would be looking for any odorous compounds in the system. It would include trimethylamine. Probably it would be best to test for as many VOCs as possible (not just odorous) since it seems that inability to fully metabolize compounds is at the root of the problem, and there are likely many more non-odorous unexpected VOCs in the blood too. After the general pattern has been found, such a complete list may not be necessary. These type of tests are possibly currently possible by local metabolism units of hospitals.

Genetic weakness, DNA test: At the moment the most obvious suspect would seem to be the FMO3 enzyme. But also it would seem wise to check all the main 'xenobiotic enzymes' especially. This would be the main families from the CYP450 (and FMO3), and the 6 main phase2 'conjugating' enzymes associated. However there are many more enzymes, such as dimethylglycine dehydrogenase that have been shown to cause odor problems if not functioning well enough, but the detox ones mentioned seem to be regarded the main players in detox (and in activation of compounds too). Beraring in mind no-one currently seems much interested (or aware) in bloodborne odors.

Gut tests for dysbiosis: There are many of these sorts of tests, many not used by the current medical system. The best known 'outsider' companies being Metametrix and Genova (both associated with functional medicine). Gut dysbiosis does seem a likely factor, but what exactly the pattern is for fecal body odor syndrome is unknown. For this section of the post, helpful tests will be split into 2 categories and are only to give an idea of examples:

Tests accepted by the 'official' medical system :
Small Intestine Bacterial Overgrowth breath test
Gut x-rays, colonoscopies, endoscopies, pillcam
Celiac test
Very conservative parasite test
etc

Tests done by innovative medical companies:
Gut dysbiosis stool tests (includes bacteria, fungi etc). Either a culture test or DNA test.
Liberal parasite test
Leaky gut test
Detox/Xenobiotic enzyme tests (Either functional or DNA)
DNA test of xenobiotic enzymes (Detoxigenomic test)
Dysbiosis urine marker tests
Pancreatic output finction
etc

Vitamin and mineral status:
Vitamins and minerals are often co-factors in enzyme functions, and so it makes sense to at least see if they are part of the pattern of the group. Of the vitamins, B vitamins in particular are often co-factors in function of the phase1 xenobiotic enzymes. B vitamins are also often produced by good flora in the gut as well. Minerals also often play a role as enzyme co-factors. Not just the big minerals but also macro minerals such as chromium, which is a cofactor in the enzyme that changes toxic sulfite into non-toxic sulfate. Again, most of these tests are likely best done by innovative companies.

Amino acid and organic acid tests: (normal metabolism type tests)
Whilst the VOC test mentioned above is more looking for unexpected compounds, these tests are looking more at normal chemicals and metabolism function. There is overlap with the VOC test but at this point both types of tests seem useful.

Liver tests: Of course this would include the traditional liver tests, which mostly look for signs of damage. However it would also include how well the liver handles toxins, which is not something that standard liver tests look for. This usually involves looking for unexpected metabolites in urine. Trimethyamine is an example. Other examples would be looking for any volatile organic compound in urine in particular. This is more to do with genetic variaton than damage. As we can assume, most people with metabolic odors do not have any liver damage.

Example tests:
Genova detoxification profile test. Only any use for a general view
Erythromycin urine test. General test for P450 3A4 enzyme function
Full volatile organic acid urine test

Other tests that may be worth checking

Allergy test:
The official medical system only offers IgE tests, which is the very bad immune reaction. Innovative companies check for IgG responses too, which are much more subtle. This seems not such a priority test, but who knows at this stage ?

This list is intended only to promote discussion and should be thought of as an 'opening statement' to get the group thinking of the opportunities in this area. It is only aimed at metabolic/systemic types of odor problems. It is not intended as advice or should be deemed 'correct'. As a group someday perhaps we can find a way to find out the full typical profile of a metabolic body odor problem of any type.

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