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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
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

Tuesday, September 23, 2014

Pelvic Floor Dysfunction possible cause of odor

Pelvic Floor Dysfunction can be a very disruptive to a person's everyday life, not to mention the odor it can cause. Without proper regular evacuation, all kinds of odorous chemicals produced by bacteria stays trapped in the intestines, which may seep into the bloodstream for the cleansing organs to eliminate from the body. These organs are the lungs (breath), skin (perspiration), and kidneys (urine).

An easy home treatment for this condition is the Kegel exercise, or pelvic floor muscle training exercise.

Therefore, a sufferer of halitosis may never think to consider the pelvic floor being a contributing factor, but it very well may be. In fact, any sufferer may have more than one source of odor. This is why MEBO has never wanted to focus all our attention on TMAU. After all, just look at the MEBO TMAU Test Results Charts (scroll down to see all posts). It is evident that most of the chart is white, meaning that the majority of sufferers DO NOT HAVE TMAU!
Click on icon

As a community, we focus so much attention on TMAU, as it has become the flagship of tests because it has been the only test left when the medical establishment can give us no answers. However, we need to take another look at other options. There are other areas we need to look at. We have to look for answers, and not give up when TMAU has been ruled out to most of us.

Additional Reading: Patient Information on Defecography

María de la Torre
Founder and Executive Director

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Anonymous said...

My fecalbodyodor didn’t start till after I had problems with chronic constipation. It took me 13 years to even get the right dr (colorectal surgeon) to give me the proper testing to diagnose me.

Prior to that I kept getting sent to that I kept getting sent to gastroentologists who didn't do anything for me.I saw 5 in total and had 2 colonoscopies, ct scan of abdomen, upper endoscopy and everything came back normal.
I found out about the colorectal surgeon on my own and made an appointment.
Though I haven't done the pelvic floor therapy that I was supposed to have done but can't due to an upcoming heart surgery, I believe once my bowel starts functioning properly my odor will go away . I'll post any updates once I start the therapy.

If anyone hasn't had a lower gut motility test done get one done ASAP.

Nov 8, 2014, 12:48:00 PM
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