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

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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, March 28, 2014

Beware of "Snake Oil" Remedies

As I look through the various online forums on body and/or breath odor, I continue to see the same pattern that has existed for years, at least during the last 8 years since I discovered TMAU. It was at that time that I joined CureZone’s Body Odor, and Trimethylaminuria Forums, and some posts were many years older at that time. The rhetoric sounds exactly like today’s rhetoric – sufferers are desperately experimenting with their own bodies with remedies that do not have strong supporting statistics; science has very little answers, except for a few medical conditions that produce body/breath odor, and some basic information about TMAU. It just goes round and round, with some sufferers claiming to have found the cure, which doesn’t seem to work for others…

I most certainly feel for everyone involved. If we take all of this away, what else do we have to hang on to? Sadly, the answer is not very much at all… just hope for research to discover something for some of us in 5, 10, 20 years from now, when our lives have passed us by???

My biggest fear is that sufferers can end up making matters worse instead of better by trying anything and everything. Heck, even something apparently needed by the body, such as iodine, has caused sgaet to develop hyperthyroidism. For years, my doctors have insisted I take calcium every day, which instead of helping me, have produced painful kidney stones. Everything we take has to be digested, metabolized, and eventually eliminated by our cleansing organs, and instead, some things just end up stored in our bodies (in our fat, tissues, bloodstream, etc), which only makes matters worse. A perfect example is Miracle Mineral Supplement (MMS),which many sufferers have taken. I know of the case of a sufferer who ended up in the hospital in serious condition as a result of MMS. Yet, people still post about them in the forums.

I know I paint a bleak picture, and how depressing this is, but I am far more afraid of adverse reactions to makeshift self-experimentation than I am of the depression produced by an odor condition. Since I obviously don’t know of a cure, or even an effective treatment for many, if not most causes of body and breath odor conditions, the following are guidelines I recommend:
  1. The majority of sufferers have a body or breath odor condition, which is not necessarily TMAU. Some sufferers are convinced they have TMAU without testing, when in fact, they might not have it. That is NOT to say that they don’t have a body/breath odor condition, it just means that the TMAU odor-management protocol might not be the answer if they don’t have TMAU. Nonetheless, the protocol might still help some other types of BO/BB conditions, but not all. Therefore, it is best to not assume one has TMAU because it might be more hurtful than helpful in their quest to find a solution.
  2. The majority of sufferers have intermittent odor, detected by some people, though not necessarily by everyone. This is the most difficult condition for which to use a trial and error approach to find a solution. Who is to say that a remedy stopped the odor, when it might have stopped on its own between intermittent flare-ups? Sometimes, a no-odor episode might last a month or two, or even years with or without the remedy being tested. So, how could we really know if it was the tested remedy that worked or not? We can’t know without scientific evidence, which MUST ALWAYS START with a diagnosis, a premise, a starting point, a clear understanding of what the cause(s) of each person’s particular problem is.
  3. When we share with other sufferers about what has worked for us and what has not, we have a duty and responsibility to emphasize to those we are sharing with that perhaps it may not be helpful to others who have a different cause of odor, and that in fact, it might even be potentially harmful to some people. I always refrain from recommending something – anything, without referencing it to a professional and reputable scientific source.

So what do I recommend we do until research is finalized and therapeutics are provided? Stick to what experts in body and breath odor recommend, and EVERYTHING IN MODERATION. Believe it or not, there is a significant amount of information provided by experts, though none have discovered a totally effective treatment or a cure. Try to eat healthy, treat your digestive system, your metabolic system, and all aspects of your body with care – don’t make them go on overdrive by overloading them with unproven, “snake oil” remedies. Always be wary of ideas that claim that one or two remedies are a cure-all for all types of body and breath odor conditions. If there is a remedy or a supplement that you want to try, do so in moderation and listen to your body – not only to the odor, but be vigilant to the effects it may be having on your organs and your health as a whole.


María de la Torre
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