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

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

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
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
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Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

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
NCT02683876

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
EURORDIS and
NORD Member Organization
See RareConnect
rareconnect.org 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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Tuesday, December 3, 2019

3 cases (2 'cured') of TMAU due to portosystemic shunt (Madrid)

Keywords/concepts
Congenital Portosystemic Shunt (a 'liver shunt').
A bypass of the liver by the body's circulatory system.
Example : a vein forms between intestine artery and systemic artery.
Common in dogs and cats.
In humans ? (unknown). Is it regardless mostly harmless and not detected ?
Madrid Hospital, 2019.

CPSS and TMAU ?
A Madrid Hospital took a look at 15 cases of CPSS in humans. 
3 of them said they have TMAU.
After surgery to solve the CPSS (presumably cutting the rogue vein), 2 of them were pronounced 'cured' of TMAU.

How common might CPSS type TMAU be ?
Nobody knows.
Maybe little is known of CPSS in humans ?
One paper from a long time ago mentioned a baby with a Portal Shunt that's only problem was TMAU. Perhaps this inspired the researchers in this case.

It's another avenue for the TMAU community to discuss and explore, the concept of a Portal Shunt causing TMAU, which could be 'cured' (?) by surgery.   

Full paper : Link

This study aimed to report three new cases of an association between two rare conditions, congenital portosystemic shunts (CPSS) and trimethylaminuria (TMAU), and the efficacy of endovascular closure of the CPSS for resolving TMAU. Between November 2014 and April 2017, 15 patients with CPSS were enrolled in this prospective study to assess the efficacy of percutaneous endovascular shunt closure. Three patients presented with clinical symptoms of TMAU that were confirmed by urine analysis of trimethylamine (TMA) and TMA n-oxide. One year after endovascular closure of the congenital portosystemic shunt, the same parameters were evaluated were obtained and the values were compared to the pretreatment values. The results indicated the disappearance of clinical symptoms of TMAU and normalization of the urine test parameters in two patients and no changes in one patient, who developed new portosystemic communications.

General links :
Wikipedia PSS
Radiology : CPSS
Pubmed : 1 case in 1997

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A EURORDIS and NORD Member Organization

5 comments:

Josh said...

Very interesting to see, that there can be different causes of TMAU2.

Dec 4, 2019, 2:29:00 AM
blogcontributor2 said...

I think the 'official' meaning of TMAU2 is 'anything that is not genetic TMAU (TMAU1)' ... but in practice is almost always due to TMA overload.

Dec 4, 2019, 4:54:00 AM
Anonymous said...

Im wondring if ammonia analyses would be a good thing to check before I go to a doctor duo this if ammonia way high too it could be a sign right ?

Dec 4, 2019, 11:16:00 AM
Anonymous said...

I had a gastric bypass in 1990 and subsequent reversal the next year due to complications. Years later After ending up with multiple injuries and c sections etc one after the other I was on narcotics for about 6 years. Not addicted just kept having issues and this constipated me to only go about once a week. I believe this is what (only tested properly after twenty years of excruciating time) prompted that bacteria overload that was stagnant for so long turned into prime feeding ground into tmau. Now I have been treated for SIBO, and still have the problem so that’s why I think it’s now tmau and here to stay. I smell very skunky in urine a feces.

Dec 4, 2019, 4:20:00 PM
Unknown said...

Im from canada please give some update about this and can my family doctor do that surgery for me here in canada...please let me know thank u..

Dec 18, 2019, 8:43:00 AM
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