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

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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


Participation info : LINK English

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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
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

Saturday, May 30, 2009

how do you find out if you smell ?

With systemic body odor, the general pattern seems to be that close genetic relatives and partners can't seem to smell the suffererThere can't be a problem as uniquely frustrating as body odor or halitosis in that it is others that suffer the symptom (the smell) whereas the sufferer normally can't smell anything. This seems to be the overwhelming pattern both with the well-known types of body odor and halitosis, but also metabolic body odors, with the most common one seeming to be fecal body odor. This means the patient is dealing with an 'invisible' problem that they can't monitor, which is an impossible situation.

With systemic body odor, the general pattern seems to be that close genetic relatives and partners can't seem to smell the sufferer. It is still unknown why this should be. One theory is that they themselves may be carriers and there is not a distinct enough 'sensitivity gap' for them to detect the smell (having the same toxins in their bloodstream at much lower levels). Others feel it is to do with desensitisation (geting too used to the smell).

Most people may know someone who has 'typical' washable external body odor or halitosis that is married, and may wonder why doesn't his/her wife/husband or children tell him so they can wash it off ? The main assumption again must be that for some reason they can't smell them. The same seems true for people walking about with chronic permanent halitosis of the 'bad tooth' kind. Perhaps with foot body odor, usually genetic family and parntners can usually smell it. Perhaps it depends if a family generally has the same body or gut flora composition, with foot odor being an exception. At the moment we cannot be sure about anything

The remaining part of the article will focus on systemic body odor, but may be the same principle for those who feel they have other untreatable odor problems. It's an attempt to come up with a strategy to help you understand your problem as best you can.

1: Ask people you trust if you smell and when: This would seem a good idea. However, because of the general pattern of family/partners not detecting a smell as mentioned above, there's a good chance family/partners will be of no use in this sense. There's a chance with their wish to help you, they may focus on 'unimportant' smells, which is not much use or even makes the situation worse. Probably the best chance of finding a 'smell helper' is an outsider 'friend' or professional person or someone that you feel you can trust. Ask them every aspect about your smell problem. If you are at school, you could ask the school nurse or a teacher. A teacher would be ideal since they should have smelt you sometime.

2: Always ask medical 'helpers': In a perfect world no extra info would need to be added to this point, but we live in such an imperfect world that it must be said to be careful if you think you are going to be locked up for olfactory reference syndrome. Also, the general trend seems to be that nobody smells all the time (even though it feels like it), and so medical helpers probably genuinely can't smell you if they say so.If you go to medical helper about your problem, make sure you tell them about it. Many people understandably go and then don't mention it, because of shame and also the lack of feedback from possible 'helpers'.

3: Ask a non-genetic relative: This is a risky option, but there must be a chance a non-genetic relation has smelt you, although it cannot be assumed. For instance, if the 'carrier' theory was correct, they may be carriers too. Perhaps carriers tend to marry. Also it is unlikely you smell all the time. Perhaps an aunt would make a good confidante

These are just a few examples of trying to understand your body odor problem. Possibly a general rule could be, don't expect a genetic relative to say they have smelt you (at least in the way others have described), and you may well smell really bad at times, but not as often as you think (unless it's a washable or treatable surface problem).


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