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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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BO Sufferers Podcasts



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

Wednesday, December 18, 2013

Starvation Diet and Odor

Much too frequently, sufferers say that they are trying to stay on a very strict low choline diet, that they are losing a great deal of weight, and basically just following the TMAU odor-management protocol to an extreme degree. Nonetheless, they still claim to be emitting odor. After this attempt, some sufferers simply arrive at the conclusion that they fall into the group of TMAU+ sufferers for whom the protocol simply doesn't work.

I would like to invite these sufferers to examine one more aspect of the effects of the protocol they are following. Perhaps measuring the ketone levels in urine might give an indication of what could be going wrong.

Usually, when going on a very strict diet, sometimes referred to as a starvation and unhealthy diet, our bodies produce excess ketones, as an indication that it is using an alternative source of energy. Ketones are metabolic end-products of fatty acid metabolism. As Cass Nelson-Dooley, Clinical Consultant at Metametrix tells us in her March 24, 2009 interview for the MEBO Blog,

The smell of feces comes from short chain fatty acids (SCFAs) and bacteria like E. coli. All the SCFAs have strong smells. Butyric acid is an SCFA and it smells like feces and even like body odor. E .coli has more of a mousy odor.

So basically, by going on an unbalanced, extremely strict low choline diet, we may very well be decreasing our odorous TMA level in our blood, but then we are putting our fatty acid metabolism on overdrive, producing a feces-like odor...

precisely as a result of the very strict diet, some inadvertently create another metabolic condition that actually produces a different source of odor.
When this happens, ketone bodies show up in our urine, which is an indication that there is a strong probability that we are emit body and breath odor. One can purchase an inexpensive kit called Ketostix Reagent Strips for Urinalysis to test for elevated ketone levels. Basically, what you could do is dip one of the strips into your urine and see what color it turns into.

Unfortunately, sufferers believe that if they have TMAU, they have to starve themselves to keep TMA levels down. Sadly, precisely as a result of the very strict diet, some inadvertently create another metabolic condition that actually produces a different source of odor. Then, sufferers may feel that they don't have enough energy to do cardiovascular exercise because they don't eat enough food, so they fail to assist their cleansing organs like the lungs, kidneys and skin to clean the blood quickly and efficiently through the breath, perspiration and urine.

I recommend that sufferers read the post, "What to eat on a TMAU Low-Choline Diet," and to use Sonya McClinton's Simply Delicious: A Low Choline Recipe Book, as a tool to help develop a healthy diet. Her book includes seventy-five low choline recipes with the choline content and serving size listed for each. Categories include Light and Easy Breakfast Recipes, Simple Lunches, Delightful Dinners, Super Sides, and Decadent Desserts. These Delightful recipes prove that a diet low in choline does not have to be bland and tasteless. See links below to purchase your online/Kindle e-book. Sonya is a sufferer who wrote this recipe book to help other sufferers, and the cost is only $15.

Click here for Amazon US
Click here for Amazon UK

Note : If you don't have a kindle, if you click through the links above there is details on the right hand side of the page on how to download a free app to enable you to read the book on any device (PC, smartphone, ipad, tablet etc)   

The key is to not let one's body go into starvation mode and to avoid relying on fatty acid metabolism for energy for long periods of time. Relying solely on fatty acid metabolism for energy increases ketone levels (odorous metabolic end-products of fatty acid metabolism) in urine, and long term absence of protein, carbs, fruits and vegetables is harmful to the intestines. Ask any gastroenterologist. Instead, the goal is to eat a healthy diet by working closely with the rate of our own individual metabolism by spreading out a relatively low choline intake throughout the day to "work with" our FMO3.

If your TMAU metabolic pathway is deficient, then break up one well balanced meal into two or more smaller meals to allow your metabolic enzyme to "keep up" with the daily necessary food intake in order to prevent it form allowing free odorous chemicals into the bloodstream.

Please don't do strenuous cardiovascular exercise inf you have put your body into "starvation mode" as your home ketone test may indicate. Eat healthy with enough calories and choline to stay healthy and to give you enough energy to do cardiovascular exercise in an effort to assist your cleansing organs, in order to not have odor.

I hope I have explained this in simple terms so that it makes sense. Best of luck to all.

Translation into Spanish: Dieta de habre y olor corporal y halitosis

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