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

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at UK Findacure conf 2020

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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
MEBO Research is a
NORD Member Organization
See RareConnect TMAU

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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 20, 2017

Wevers : New gene suspect for METABOLIC MALODOR : SELENBP1

Information very fresh. Treat blog interpretation with caution.


Drs Wevers, Tangerman and Winkel of Holland have long been known to have an interest in the sources of HALITOSIS, including metabolic disorders that may cause METABOLIC HALITOSIS.

Today they publish a paper that gives us a new gene that may cause METABOLIC HALITOSIS.

The Gene :
(Selenium Binding Protein-1)

Chemicals that cause the smells (in their view) :

How to identify in urine :

Pubmed : SELENBP1 abstract paper

First impressions from the abstract paper :
(from abstract, not full paper)

5 patients reportedly having 'CABBAGE BREATH ODOR' had gene mutations.
Malodor was judged to be due to METHANETHIOL and DIMETHYLSULFIDE (mainly).
Biochemical test : probably DIMETHYLSULFOXIDE in the urine (dimethylsulfoxiduria).
They say it may be POTENTIALLY FREQUENT disorder.

First thoughts on the paper :
The sulfur, methyl compounds in humans possibly are oxidized by various enzymes at different points in the cycle, probably including FMO3. So while they seem to be certain it's SELENBP1 at fault, perhaps there's room to speculate.

It's probably not properly agreed as a consensus what chemicals cause the smell of feces, gas etc, (no-one interested yet), but TRIMETHYLAMINE is probably more likely a small player compared to the likes of METHANETHIOL and DIMETHYLSULFIDE. These 2 chemicals are probably at the top of the list of maybe 5-10 chemicals which may cause fecal/gas/cabbage smells, with TMA possibly being a much lesser 'player'.
So CH3S and DMS are welcome candidates for (partly/mainly) causing metabolic malodor, and in this paper the researchers seem to believe they have identified the gene for 'a new metabolic malodor syndrome disorder'.   

Dr Wevers webpage

Media links on the story :
Medical Xpress
Science Daily
UCLA press release

Any other links to the story welcome

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Anonymous said...

That is fantastic news. Will they pursue a treatment as well or only exploratory?

Dec 20, 2017, 6:25:00 PM
blogcontributor2 said...

not got access to the paper. i guess this is the announcement paper.

Dec 21, 2017, 4:21:00 AM
Annonimous said...

I hope this would be persued and that fecal/gas smells will also be investigated. They say "there is no interest yet"!!! :((.

Dec 21, 2017, 8:49:00 AM
Anonymous said...

I see an organization by the name of Dermetel. Org is selling dmb supplement for 125 is this legit or a scam. Pkase help is to verify.

Dec 21, 2017, 12:26:00 PM
Unknown said...

I hope you guys don't mind a comment that's less on the latest blog post and more on an earlier post that I only came upon recently, the one concerning the benefits of extra virgin olive oil in our condition. But the articles I read specified that only CERTAIN extra virgin olive oils worked in the desired way--but it didn't say which ones. Could someone here-- or the blogger herself-- enlighten me as to which ones, if the information is known by anyone here. Thank you!

Dec 21, 2017, 3:28:00 PM
blogcontributor2 said...

Re EV Olive Oil, I think Maria may have wrote that post, as getting DMB from food is not a route I have an interest in. IMHO I would guess all EV olive oils probably contain DMB. Maybe it's a general rule such as the darker the color the more DMB, but I do not know.

Dec 21, 2017, 9:29:00 PM
Unknown said...

blogcontributor2: I'm the one who wrote the comment asking about which particular EVOO are beneficial in our condition. As I recall, in the article I read that quoted the expert (and provoked my question today), the man was quite emphatic in stating that only some EVOO brands had a positive effect, and if I'm remembering correctly he mentioned that it was the 'fruitier' ones that did. But, unfortunately, I'm not such a connoisseur of EVOO that I can tell a fruity one from a non-fruity! In fact all my attempts to do so have thus far proved fruitless!

But seriously,surely someone in our community is well-enough connected to have DIRECT ACCESS to the set of professionals involved with our disorder, and coaxing the information out of one of them doesn't seem a task that presents insuperable obstacles! Actually, it strikes me that a politely-expressed curiosity should easily suffice to entice even the most taciturn of experts to speak up and tell us what we want to know. There's nothing an expert loves more than demonstrating his expertise to the layman! And the less often he has a chance to do so, the more eager he will be when the rare opportunity arises-- and I can tell you, no ailment has experts who have as few opportunities to show how smart they are than ours-- 99% of the unaffected population does not even know our ailment exists, let alone possess the curiosity to pepper an expert with questions about it!

Dec 21, 2017, 10:48:00 PM
Maria de la Torre said...

The following link to an article written by Dr. Hazen's team states that DMB is a TMA lyase activity inhibitor, and lists naturala product in existing foods or alcoholic beverages that contain DMB:

"Of the choline TMA lyase activity inhibitors identified, we suspected that DMB, given its structure, might be relatively non-toxic, and possibly even found as a natural product in existing foods or alcoholic beverages. Indeed, screening of multiple fermented liquids, oils, and distilled products confirmed that it is present in some alcoholic beverages and oils to varying levels (e.g., DMB was detected in some balsamic vinegars, in red wines, and in some cold-pressed extra virgin olive oils and grapeseed oils; highest levels observed were 25 mM; data not shown). Therefore, we elected to take DMB forward as a potential tool drug with which to test the hypothesis that inhibiting microbial production of TMA might serve as a potential therapeutic approach for the treatment of atherosclerosis."

They recommend cold-pressed olive oil because the olive is not obtained with heat.

The following posts in this blog address DMB (scroll down to see them all),

Dec 22, 2017, 7:38:00 AM
Maria de la Torre said...

I would like to take this opportunity to reply to some of the comments, concerns, and recommendations expressed in this post. These are the very topics I receive in emails, facebook messages, and posts in the MEBO Support Group on a daily basis from sufferers. When I present questions to the extensive list of experts we have consulted with, their reply is always prefaced with the declaration that little research has been made on the subject. They can sometimes provide us with an educated guess, but in such case, they are hesitant to allow us to publish their comments, understandably so. Nonetheless, their educated guess gives MEBO direction in our pursuit for research, and we are most appreciative for their contribution to MEBO. Their opinions are frequently discussed in the MEBO Support Group without us mentioning their name, per their request.

As most of members of the world-wide MEBO community know, very little research has been carried out throughout the years on TMAU, bromhidrosis, systemic halitosis, and other causes of breath and/or body odor that have not even been identified yet. As professionals are expected to do, their counsel has to be based on data acquired from research performed in the field. When research is very limited, as is the case of breath and body odor conditions, professionals are also very limited in what they can determine and advise us to do because it would simply be baseless and borderline unethical to do.

MEBO not only has experts we consult with, but we also have experts in the UK and US who have carried out formal research, not only on a therapeutic for TMAU, but also two exploratory studies in an attempt to identify and establish other causes of breath and body odor. To get an idea of who the professionals who have contributed to the MEBO cause are, you simply have to look at this blog, which has 1,547 posts to date since April 2008. I realize that it is difficult to read all the posts in the MEBO Blog, and therefore we have set up the keyword list and the blog’s Search engine, which you might be able to find what you are looking for. I frequently refer to posts in this blog in my reply to questions because the posts themselves always contain a link to the source of the information discussed. We have always tried to list at least one link/source to each topic discussed in each post. In order to find names of a few of the professionals MEBO has consulted with through the years, I recommend the use of the following keywords in your search.

I will write a post very soon here giving more information about MEBO's relationship and projects carried out with many experts in Europe and the United States.

Dec 22, 2017, 8:39:00 PM
Unknown said...

Maria de la Torre: [What a majestic name, based on just the SOUND of it, and how especially appropriate for YOU, based-- more importantly-- on the MEANING of it ('of the watchtower', in English-- can there be a name more suitable than that for someone who has assumed the role of standing guard over her community of fellow sufferers, alerting us to the slightest movement in the underbrush (a quivering leaf, a snapping twig) that may signal the arrival of something we should know about-- good or bad-- while it's still quite far away.]

Y'know Maria, here in New York, there's a term from Yiddish that's been incorporated into the everyday language of the city, "macher" (pronounced the way you would say the composer Bach's name, plus -er) that has no ready English equivalent so we use 'macher'when we want to refer to someone who makes things happen, who, without an 'official' position, nonetheless makes it their job to get other people to do things and usually succeeds spectacularly! It is typically with a distinct note of admiration that we New Yorkers call someone a 'macher', and, in that exact spirit, I dub you a 'macher extraordinaire' for your work on this blog and related matters.

Of course I thank you for your response to my inquiry. Isn't it ironic, Maria, that our community, often feeling thinly-veiled resentment at the neglect by mainstream medicine, may finally get an effective medication for OUR ailment only because DMB and similar compounds have dramatic benefits in mainstream medicine's primary obsession, fighting cardiovascular disease?

Incidentally, are you aware, Maria, of the dramatic heart and arterial benefits demonstrated for Extra Virgin Olive Oil, and the fact that they are very much dose-related (the benefits increasing linearly with increasing consumption of EVOO)-- while ordinary olive oil's salubrious effects along those lines are far more modest, if they exist at all. Since I've become aware of the presence of DMB in EVOO, I realized that we have every reason to believe that the secret of Extra Virgin Olive Oil's cardiovascular benefits lies primarily in its DMB content.


Dec 23, 2017, 2:06:00 AM
Maria de la Torre said...

Richard, what lovely words! Thank you! You have a true mastery of the English language, and being a student and lover of languages, I love the Yiddish term, "macher". I feel honored that you consider me to be a 'macher extraordinaire', and I hope to be able to live up to it throughout the years. Thank you very much!

I agree. It is preposterous that we find ourselves having no other recourse but to piggy-back on cardiovascular disease research to somehow find a relevant treatment that could be beneficial to our community. This situation aqccentuatates the uphill battle our community has been facing through the years. We have had to be creative in our quest to possibly find the opportunity to create research or to 'borrow' from unrelated research to see whether their findings will provide sufferers with relief. I strongly believe that if we persevere with this approach, we will continue to move forward in the better understanding of the various body and breath odor conditions, and hopefully, inadvertently discover functional remedies and treatment.

I am, however, so very grateful to the unexpected positive response MEBO has received from so many professionals in the scientific and medical field. There are some out there that are truly compassionate, but their hands are tied without significantly large research grants. This is why I am now working on doing a post in this blog highlighting the long list of some of the professionals who have dedicated a great deal of their time and pro-bono work to help MEBO in our Mission. Also, I would like to recognize sufferers like you, who give us a shot of energy that propels us forward with your very kind words. It really does make a difference as we continue our uphill journey.

I would like to point out that even though Extra Virgin Olive Oil is helpful, you will find that it contains more DMB if it is cold pressed EVOO. This means that the oil is obtained from the olive without heat, thus preserving DMB better.

Dec 23, 2017, 6:43:00 PM
Unknown said...

Maria! Hello!

You said, "Richard, what lovely words! Thank you!"

And I say, "Maria, what lovely words of your own you uttered in response! Thank YOU!"

I find it soooo very interesting that you describe yourself as "a student and lover of languages". I wish-- with a fervor that would surely astonish you, Maria!-- that more people in this world were like you (and like me, for that matter, if that doesn't sound TOO narcissistic!): a lover of languages, someone who cherishes the oddities that crop up in the most unexpected nooks of a language and baffle us by their mere existence (even while delighting us with their quirkiness!), someone who wonders at the way a language will allow us to express an endless array of nuances in one domain-- just as a finely-honed precision tool will allow us to drill holes of a seemingly infinite range of sizes (think of how the Eskimo language has 38 different words for snow... or is it 50?) -- while in another domain that same language is a crude, blunt instrument that leaves us frantically searching, like Flaubert, for the 'mot juste', but, unlike Flaubert, never finding it!

And if you look in the seemingly obvious places for lovers of language, you don't find them! I'm sure you know, Maria, that the New York metro area has many, many people who are children of immigrants and who are therefore truly bilingual, entirely comfortable speaking English at school or their jobs, and equally at ease conversing with their parents or aunts and uncles in Spanish or Italian or Arabic, Hindi, Mandarin, Tagalog, Urdu or whatever the case may be-- even Serbo-Croatian! Certainly THOSE people-- who every day have an opportunity to compare two quite unrelated languages-- would be mesmerized by the interesting differences they notice. But in truth hardly any of them would ever describe themselves as you did-- 'a student and lover of languages'-- because they acquired their bilinguality through simple exposure, the way someone acquires influenza. There never was any volition on their part, based on interest, let alone 'love', as was the case with you and me. It just 'happened' to them.

And even when there IS volition involved-- as with someone actively learning another language at an older age, say by living in a foreign country for the express purpose of acquiring that country's language-- they are almost always prompted by purely utilitarian motives, a sad fact that is betokened by their never displaying the slightest interest in novel aspects of the new language they are learning. Such a person would never say to me, "I love the Yiddish term, 'macher' ", as you did. They don't love ANYTHING about the new language they are learning, or about ANY language for that matter, including their native one. They're not stupid, it's simply that their interests lie elsewhere.

Here's a perfect illustration of such a person-- otherwise a fine, intelligent human being, but with absolutely no interest in language per se-- just a utilitarian impulse to learn the language so they can employ it to their benefit. When I was a small child, we had an eighteen-year-old German 'au pair' named Linda living with our family. She'd come to the US with the sole purpose of learning English by immersion; she grasped that English, even then, had become the world's lingua franca, and as such, it would be very useful to her to be able to speak it fluently. And she certainly went about learning English in a systematic, dogged, and conscientious way. For example, she carried a little pad in the pocket of her blouse, and every time anyone in the family used an unfamiliar word, she'd whip out her pad and ask the user to please spell it-- and she'd carefully write it down, along with the definition we gave for it.

End of Part One

Dec 24, 2017, 3:49:00 PM
Unknown said...

Part Two:

But before I tell you the rest of the story, I must pause to impart this crucial fact to you. My mother studied German in school, and of course knew the Yiddish that practically every New Yorker knew back then (and remember, Maria, Yiddish is a German dialect that differs only slightly-- and predictably-- from standard German. The two are much closer than Spanish and Portuguese.) So even before the arrival of Linda, my mother would occasionally use German or Yiddish words with me and my sisters, often for comic purposes. For example, although I was, under normal circumstances, a fairly civilized child, in the presence of my favorite food (a turkey sandwich on rye, with Russian dressing and cole slaw brought home piping hot by my father from the neighborhood delicatessen), I would lose most of my self-control and all of my sense of decorum. Now the German/Yiddish verb for 'eat' is 'essen'-- but that only applies to human beings. They use 'fressen' for eating by animals. And, admittedly, at age ten, when in the presence of turkey on rye, with Russian dressing and cole slaw, I devoured it with such a frenzy (and such a lack of table manners!) that I WAS indeed an animal. So when my mother humorously admonished me, "Richard, stop fressing!" she was entirely justified.

Well, not long after Linda started living with my family as an au pair, my father arrived home with a turkey on rye, with Russian dressing and cole slaw, and even with the addition of Linda to the family (whose presence. you'd think, would have had something of a restraining effect on me) I devoured the sandwich with my usual excessive zeal, and triggered a particularly vehement (though still humorous), "Richard, stop FRESSING!!!" from my mother-- with the fressing more emphasized than usual. Whereupon, Linda plucked the pad from her pocket, and said to my mother, "Ma'am, what was that word you just used-- 'fressing'???"

After my mother stopped laughing at Linda's question (though not in a nasty way, but simply an incredulous one, as a person might laugh if catching Santa gluing on his beard in the Men's Room!), she explained to Linda what she shouldn't have had to explain.

Yes, Linda PRESUMED my mother would be addressing me in English. And yes, my mother's 'fressing' was not EXACTLY the German 'fressen' but an anglicized version of it. But Linda's real obstacle was that she was so uninterested in language per se, and therefore so unreflective about its use, that she-- a lifelong German speaker-- couldn't make the minuscule intellectual jump from fressing to fressen and only for that reason was she unable to understand the meaning of what my mother had just said to me!

End of Part Two

Dec 24, 2017, 3:51:00 PM
Unknown said...

Part Three (thankfully the final part!!)

I, on the other hand, instantly notice, become fascinated by, and wildly speculate about any linguistic anomalies I encounter. So, in this case, why would the German language, practically uniquely in the world, use essen to refer to humans eating and fressen to animals? Is it that Germany, in recent centuries the European hub of the arts and sciences, has had as a part of its collective unconscious going back millennia (to the very origins of the German language) a sense of itself as supremely cultured-- the antithesis of 'animalistic'? Interestingly, Maria, the two men most responsible for developing the Theory of Evolution, which stripped human beings of their status as special creations of God and definitively reduced man to just another animal, Darwin and Alfred Russell Wallace, were both Englishmen-- and when Bronn, a renowned German paleontologist of that era, translated Darwin's work into German he changed some crucial words of Darwin's to restore a measure of specialness to our species that didn't represent Darwin's perspective. So, can we explain the German language's 'essen' and 'fressen' as one manifestation of a millennium-long need to sharply distinguish between human beings and animals? Probably not! But it's fun to wildly speculate, as I just did-- fun, that is, for me and perhaps for you, Maria, but certainly not for Linda and most of the rest of the world!

Dec 24, 2017, 3:55:00 PM
Unknown said...

Richard here: When I was chopping up my post to meet the restrictions, I think I inadvertently omitted the last paragraph of Part Two, so if I did omit it, Maria, could you insert it for me?:

Yes, Linda PRESUMED my mother would be addressing me in English. And yes, my mother's 'fressing' was not EXACTLY the German 'fressen' but an anglicized version of it. But Linda's real obstacle was that she was so uninterested in language per se, and therefore so unreflective about its use, that she-- a lifelong German speaker-- couldn't make the minuscule intellectual jump from fressing to fressen and only for that reason was she unable to understand the meaning of what my mother had just said to me!

Dec 24, 2017, 4:06:00 PM
Anonymous said...

Sorry to sound negative, but there seems to be too much lethargy and inaction in the tmau and fbo community. I know that every sufferer who has fbo but who has tested negative for tmau is asking "hw can i get tested for selenbp1 mutation?" We are not interested in meaningless chit chat on this board, but action. Can MEBO at least look into partneri g with a lab for such a test, or will we just be offered only the tmau test that seemingly leaves a large number of us undiagnosed? I know i speak for all those who havefecal bodr and breath odor, especially those of us who tested negative for tmau. Please help get something going Maria. Thank you.

Jan 7, 2018, 10:16:00 AM
Anonymous said...

Que dieta hay que seguir?en caso de tener este trastorno metabólico o genético

Jan 7, 2018, 9:36:00 PM
Anonymous said...

Felicidades por su investigación es importante saber que problema genético puede provocar mal olor y así poder buscar una cura o tratamiento

Jan 7, 2018, 9:44:00 PM
Anonymous said...

I agree with annoymous's comment from Jan 7th.

It would be great if we can get least get diagnosed to see if it's selenbp1.

I believe TMAU only plays a tiny part if any at all in most of us.

Jan 7, 2018, 11:09:00 PM
blogcontributor2 said...

I'm guessing Wevers lab will do the test (soon ?).
He has a public email which is listed on his webpage (link is in post).

Jan 8, 2018, 2:47:00 AM
Anonymous said...

Not sure, but from the article, could diagnosis be as easy as a dimethylsulfoxide urine test?

Jan 8, 2018, 5:51:00 AM
Anonymous said...

Most of us would prefer a gene test and not a urine test, because if we are not experiencing the odor at the time it might not show up in a urine test. We might be asymptomatic at the time of a urine test. A selenbp1 gene test would let us know regardless of whether we are symptomatic or not.

Jan 8, 2018, 6:26:00 AM
blogcontributor2 said...

dimethylsulfoxide urine test?

it seems thats what they are using, but i might be wrong

Jan 8, 2018, 6:50:00 AM
blogcontributor2 said...

selenbp1 gene test

im guessing they may do this too, but might use blood.
23andme have a few codons listed, but cant work out if they are relevant or not. i think no.

Jan 8, 2018, 6:51:00 AM
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