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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
MEBO Karen
at UK Findacure conf 2020

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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

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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BO Sufferers Podcasts

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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
NCT02683876

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


Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
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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

Monday, June 1, 2009

Flagyl and Nystatin for fecal body odor ?

NOTE: in no way is this a recommendation or advice. It is suggested this will not work and may cause side effects. do your own research. Anyone who tries this does so at their own risk and are responsible for their actions.

Possibly a pattern is emerging, where someone with fecal body odor (or gas body odor or sewage body odor or however people perceive their 'bowel odor' problem to be) seems to also have what could be termed a 'gut issue' of some sort (whether it be bloating, gas, IBS, or however one wants to label the problem. In effect, a bowel issue that a doctor would not be interested in).

Since there is no research or recognition of this problem, obviously no guidance can be given as to whether what is known as 'fecal body odor' could be a gut issue alone. The guesses as to what could be the factors are never-ending at the moment. At one end of the spectrum is perhaps null-allelle homozygous mutants for FMO3, and the other end is someone with no accepted FMO issue and the problem is some sort of unique or multifactorial gut dysbiosis issue (such as secondary trimethylaminuria).

At the moment, a guess would be that someone may have one or more risky 'variants' of FMO3, and perhaps FMO3 plays a role in the colon in controlling the ecology. Perhaps the less 'severe' the DNA, the more it's to do with the gut ecology. in the end, the reason for smells is that seemingly an enzyme(s) is saturated with the smelly toxins. Anyone can smell of trimethylamine, given a big enough dose.

The best long-term approach would be to find out if there is a gut/FMO3 enzyme connection, and how much the gut issue is the factor, and if the dysbiosis is a unique type to this problem, or some sort of typical dysiobis.

For instance, some feel they have candida, but on candida boards you would be unlikely to find anyone that smells of feces. The point being, most with candida don't seem to smell. But perhaps candida is common amongst smellies, and the combination of the dysbiosis and the enzyme weakness is the 'sinker'. Or perhaps it is another pathogen to blame, as is suggested for trimethylaminuria. In this case they say it's a type of bacteria, but not which one. Speculation is that it will be the one that causes 'fish' vaginosis, which is thought to be gardnerella. or perhaps it is a parasite or some combination or some other bacteria.

While the best approach is research, some may look for treatment gambles. one gamble would be 'covering all bases' (in theory), such as taking nystatin and flagyl. The logic being, the nystatin will kill fungus, and the flagyl will kill anaerobic bacteria and protozoan parasites (in theory). This would be a 'scorched earth' policy. Flagyl is chosen since it is usually reasonably tolerated and cheap, but perhaps something like rifaximin would be better (since it isn't absorbed) but this is very expensive and probably impractical. Nystatin is not thought to be absorbed either, although it is unknown how much leaky gut would be a factor in absorption. Again chosen because it is relatively cheap. there is actually a vaginal suppository called 'flagylstatin' which seems to be using this approach for vaginosis, under the pretext they aren't sure whats causing it. Although it's probably wiser to buy the 2 medicines separately for gut conditions.

PLEASE NOTE THIS IS NOT ADVICE OR RECOMMENDATION SINCE NOBODY KNOWS WHAT CAUSES FECAL BODY ODOR, BUT IT IS POSTED SO THAT PEOPLE ARE AWARE OF CHOICES THEY THEMSELVES CAN MAKE. NO DOCTOR WOULD RECOMMEND THIS APPROACH. USE AT YOUR OWN RISK.

There are many possible downsides too, such as how does the gut ecology end up ? Or how long would it need to be taken ? or if there is any weakness in handling flagyl (it is known to interact with xenobiotic metabolizing enzymes. Also it is known to cause an 'antabuse' reaction (bad reaction to alcohol). There are known side-effects to flagyl including vomiting, dizziness, liver issues. Please research into flagyl to be aware of the issues.

The background of the post should be regarded as a desperate attempt to blindly solve 'gut dysbiosis' of an unknown sort. Testing is always the preference.

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