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anti-TMA pill in a year or 2 ? (scroll 12 mins)

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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

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TMAU Petition world
TMAU UK end total:262
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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


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Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
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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

Thursday, January 24, 2013

Annonymous Survey Results: Visitors' comments on Community Snapshot

Summary See complete responses

PLEASE SPEAK YOUR MIND TO OUR EXPERTS. This is your opportunity.




In a previous post, visitors to this blog have written a few comments worthy of discussion in a new post. One of the questions raised based on the visitor's interpretation of the Summary Report is, "Am I correct in seeing that the majority of people reporting having no diagnosis of gastrointestinal conditions?"


In response to the first 40 questions, I have posted the chart created by Google Docs of the participants' entries. It's interesting to note that only 33% of the 40 participants said they don't have digestive issues, leaving 67% describing their diagnoses and/or symptoms. In addition, I have noted below comments to the survey question written by participants, “If not diagnosed with gut issues, do you experience gut issues symptoms? If so, please describe.”

IRRITABLE BOWEL SYNDROME (IBS)
9
23%
INFLAMMATORY BOWEL DISEASE (IBD)
0
0%
CROHN'S DISEASE
0
0%
CARBOHYDRATE INTOLERANCE
resulting in severe gas and
bloating following carbohydrate meals
i.e., constipation, diarrhea, etc.

1

3%
LACTOSE INTOLERANCE
4
10%
ULCERATED COLITIS
Inflammation of the
large intestine

1

3%
PEPTIC ULCERS
including gastric ulcers or
esophageal ulcers
i.e., constipation, diarrhea, etc.

0

0%
GASTROESOPHAGEAL REFLUX DISEASE (GERD)
OR OTHER GASTROESOPHAGEAL DISORDERS
i.e., constipation, diarrhea, etc.

4

10%
NONE OF THE ABOVE
13
33%
OTHER
8
20%


COMMENTS WRITTEN BY RESPONDENTS ON GUT ISSUES
with references on TMAU Test Results:

  1. (Negative for TMAU) Heartburn, lump in throat, swallowing to relieve constant drainage, gas, stomach aches.
  2. (Primary TMAU) Had IBS previous to TMAU
  3. (TMAU Test results changed with subsequent tests - initially borderline positive, 2nd test negative for TMAU) Lactose intolerance (seems to no longer be a problem since I started using probiotics)
  4. (Primary TMAU) In my early teens I only emptied bowels maybe once or rarely twice a week. After TMAU kicked in badly as age of fifteen i self-diagnosed myself so to speak and drank lots of fiber drinks to flush myself out thinking that that might stop the odour but gave myself irritable bowel which made it worse. Withe th increased stress levels over the past decade I know have very acidic stomach which i am on daily antacid for - omezprazole which i regularly have to increase to reduce symptoms. for the last four years or so I have also has severe bloating as well as ridiculously constant gas although I think this is down to the non stop stress.
  5. (Secondary TMAU) Stress related diarrahoea. Sometimes I feel I have very little control over my bowels; can be very gassy;definitely have strong heartburn, am not sure if I have reflux.
  6. (Negative for TMAU possibly due to long-term low choline diet) Although I've been diagnosed with IBS, I believe it's more than that...I have a constipation everyday. I'm afraid of going to doctor to get in-depth analysis because of my body odor and anxiety of being close to people during waiting period.
  7. (Primary TMAU) abdominal swelling and pain.
  8. (Secondary TMAU) yeast infection.
  9. (Secondary TMAU) After ingesting sugar, I develop diarrhea and bloating.
  10. (Secondary TMAU) bloating, gas, nasaua. i have since cut out grains, beans, fish, soy, dairy, eggs and most foods high in choline. it has helped quite a bit with the gas and bloating but I still notice peoples reactions to my odor ....its not nearly as bad as it was. i also had a comprehensive stool sample done and had very few pancreatic enzymes in me as well as no good probiotic bacteria
  11. (Not tested for TMAU) constipation, gas, bloating
  12. (Not tested for TMAU) I have a small hiatal hernia, transient GERD and "slow" bowels.
  13. (Negative for TMAU) I do not really present with any notable gut symptoms at all. some very brief and very very minor gas or bloating when i consume milk, i typically do not have a problem with other diary foods. when i consume milk my symptoms are on a scale of 1-10 about a 1 some times a 2.
  14. (Negative for TMAU) No i do not experience any symptoms.
  15. (Negative for TMAU)Occasionally runny stool from something I have eaten, but this is not something where I have to urgently have to go to the toilet. No stomach pain. Mucus in stool due perhaps to Candida die off. Had a gut fermentation test which showed high ethanol levels of 140 (normal is 22). No gut permeability problems as test came back normal. Indicans positive. Deficient in B2 (1.58). Normal Methionine levels
  16. (Not tested for TMAU) constipation, diarrhea, or both on the same day, bloating, my tongue feels very sour, depending on what I eat, I feel a tingle on my tongue although I don't know if it is the right description for what I feel.
  17. (Not tested for TMAU) Gassy, Bloating, Loud Stomach Noises And Gurgling

ANONYMITY


There is no need for MEBO or experts to know who the participants are for this opinion gathering effort, and personal identification is strongly discouraged. Please note that, once compiled into a report, the total end results will not be kept confidential, since the primary purpose of this questionnaire is to assist any interested expert in his or her design of a research project and to raise awareness. Only your individual input will remain confidential. Therefore, MEBO Research asks that you please remain anonymous.
THANK YOU FOR YOUR CONTRIBUTION TO THIS EFFORT!

María

María de la Torre
Founder and Executive Director

A Public Charity
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www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
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2 comments:

Anonymous said...


looks like the people who tested positive for tmau of any kind have symptoms some multiple symptoms of gastro relavance, the people who have never been tested for tmau report symtpoms as well and some times multiple symptoms of gastro relavance, but the people who have tested negative for tmau do not report any symptoms of gastro relavance???? it is hard for us to figure out becuase we see just tiny glimpses of data not the full reports of anomomyous documentors. this is all very helpful to see i think. thank you for doing this. and for clearing things up.

Jan 24, 2013, 1:09:00 PM
Maria de la Torre said...

Thank you for your questions!

I think that even informal non-scientific surveys/questionnaires can carry a message for our researchers to then pursue further.

THANK YOU TO THE COMMUNITY FOR PARTICIPATING!

Jan 24, 2013, 1:56:00 PM
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