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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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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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NORD Member Organization
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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

Sunday, April 11, 2010

Personal testimony of various odor types and triggers

One of the sufferers in our community has done a great job describing the various types of odors he suffers from, which he breaks down into two categories, systemic and secondary sourced. He has also categorized them on a scale from 1 to 10 for us to better note their intensity. In addition, he attempts to trace them back to food and medications he's consumed in an effort to make sense of their origin.

Of course, this is his own personal perception of his problem and not a professional diagnosis. Nonetheless, I believe that it is important to include in this blog a sufferer's point of view about his/her own condition, as most of the posts are geared toward the experts' opinions. After all, the purpose of this blog is to bring sufferers and experts together.

He has graciously given us permission to post this information in this blog in an effort to bear witness and to promote research. Our gratitude and best wishes goes out to him.

...For me, there are a few types of odors.[emitted from my body]

One of the odors I can smell strongly is a gas odor (like a fart) that comes out of my breath when I talk, and up out of my nose when I swallow. People also comment when I can smell it. I can control this odor by avoiding the triggers.

The triggers are:
Alcohol - 10 (very positive, have noticed every time)
Trazodone - 10 (on one occasion, I will have to test again)
Soy Sauce - 5 (very certain)
Salsa - 5 (very certain)
Pickles - 3 (not certain)

There is another type of odor that I can control. It is flatulence odor, and it can become very strong. It smells exactly like propane and sometimes garbage, and Ive also had a friend confirm this. The odor is so strong that it sticks to my pants or a chair for longer than 24 hours, yet there is no leakage of feces.

Sugars and Wheat 1-10. I am not sure if it is just one of them, or both. Whenever I try to gain weight, and eat a whole bunch of cookies or cakes consistently over a week, I eventually get this very very strong gas.
Sweets also give me a terrible tasting post nasal drip over time. And I also get a primary moldy/fungal type of smell in the nose (you know, like a vinegar, or foot type of smell).

So I wonder if a secondary odor I smell is coming from my nose.

This secondary odor I experience smells like clay and poop I guess. People tell me they smell something weird with this one, but when they say that, I can't always smell it. The secondary odor doesn't seem to be coming from any body part. I can smell it in the air around me, but I cannot smell it from my armpits, or skin, or if I wipe my anal area with tissues there is no smell. I can also not smell it the same as I smell the fungal type of smell in my nose. Also at times I get stronger scents of it, and other times not. Nothing I eat seems to affect or change it. Even on the low choline diet for 2 months, I can still smell it. It is possible that smoking is the cause of this. I have quit, and I may have noticed an improvement, but I am totally unsure. It has been about 4 weeks since I've quit, but Ive had about 2 cigarettes on occasion during this time. So if that is a cause, it may need more time.

One time, when I washed out my nose with a sinus flush, my friend said "it smells like poop in here". So it could also be something fungal in the nose.

The problem is, Ive been to two ENTs twice each, and had CT scan and they found nothing. But one of the ENTs told me, they still don't know anything about odors because there is no research. I haven't noticed this type of odor until recently (past 2-3 months), so I would like to see if it goes away with the Flip Turn sinus rinse, as people who have had this odor problem on other boards have gotten rid of it with this method.


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