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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

Scroll down and select country
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
or contact
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

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

Blog Archive

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

ANONYMOUS QUESTIONNAIRE FOR RESEARCH DESIGN

If you have difficulty submitting your answers to this questionnaire, please use the following link:

DIRECT LINK TO QUESTIONNAIRE

Thank you for your participation!


18 comments:

Anonymous said...

I COULD`NT SEND THE QUESTIONNAIRE CAUSE I CAN`T REACH THE END OF IT DUE TO FAILURE IN THE PAGE. I COPYED AND PASTED AND WANT TO SEND IT MAYBE AS AN ATTACHMENT OR SOMETHING. WOULD YOU HELP ME PLEASE?

Jan 19, 2013, 5:00:00 PM
Maria de la Torre said...

Hi Anonymous,
Perhaps the site was down? It's working alright now. Please try it again. Only the first 2 questions are "Required," and if you have not answered them, then it won't submit your answer. Please try again and let me know if it doesn't work for you. There have been 13 successfully completed responses, so it should be OK now. Thanks for your participation!

Jan 19, 2013, 5:07:00 PM
Anonymous said...

Hi María, I have try twice again and in my monitor the form only shows up to the question "ulcerative colitis" in a way that I`m not able to reach the "send" bottom. I don`t know if it is because I`m using a lap top and the monitor is too small or what. I really want to send my comments.

Jan 19, 2013, 6:12:00 PM
Maria de la Torre said...

Sorry you're having a difficult time. You can email it to me. My signature is in my signature box on almost every post. It is maria.delatorre@meboresearch.org. Thanks for your enthusiasm.

Jan 19, 2013, 8:52:00 PM
Anonymous said...

Hi I am having problems completing the questionnaire as well. It stos half way through the medical history questionnaire and does not show the rest of th questions or the send button. Is this something wrong with my computer? Thanks.

Jan 20, 2013, 2:21:00 PM
Maria de la Torre said...

Sorry to hear that some of you are having problems submitting the questionnaire. If so, then you can try this link to see if it helps, https://docs.google.com/spreadsheet/viewform?formkey=dE0xWU1wM1hSdjlZSTkxOExIc3NpYkE6MQ#gid=0

Jan 20, 2013, 2:44:00 PM
Anonymous said...

Finaly I had it done; the adress that Maria gave does work.

Thanks

ANONYMOUS 58

Jan 20, 2013, 4:09:00 PM
Anonymous said...

Thanks Maria, I can access it now.

Jan 20, 2013, 4:42:00 PM
Anonymous said...

I don't see a send button, so I will email my responses.

Jan 20, 2013, 5:04:00 PM
Anonymous said...

Thanks for the link. I see the full questionnaire now.

Jan 20, 2013, 5:08:00 PM
Maria de la Torre said...

If having difficulty submitting the questionnaire, anyone is welcome to email it to me at maria.delatorre@meboresearch.org

Jan 20, 2013, 8:07:00 PM
Sharon L said...

Do you have to freeze the urine if it s schedule to Florida's lab then to your lab in Cleveland.Its approxmently in 3 days.

Sep 29, 2013, 12:08:00 PM
Maria de la Torre said...
This comment has been removed by the author.
Sep 29, 2013, 12:22:00 PM
Unknown said...

Omggggggg after 24 years of bad breath and body odor
I am now odor free!!!!! ☺️My story is just like some of u. My odor would come during stressful moments, b4 my period or sometimes for no reason at all. I work in a hospital and my coworkers talk about me something awful. They avoid me like the plague. The family members of some patients would hold their noses or look at me in an angry manner. My friends would say things like "what's that smell or It smells like shit in here."���� Standing on any line or sitting on the bus drew unwanted attention. I have knots all in my back from being so tense all day with stress because of this. My life was pure hell!!!��
Good thing my husband and children don't smell anything at all.
Now I've been to about 14 diff doctors (GI x 3, dentist x3, dermatologist x1, GP x2 infectious disease x1, ENT x3 psychiatrist x1
They all thought I was crazy. I had my tonsils removed,ears cleaned, Colon cleansing, liver cleans, special deodorants, all kinds of supplements, candida diet, antibiotics, probiotics, low choline diet, copper, chlorophyll, lotions
and bleach baths. Nothing worked!!!
So I prayed very hard for a cure or to at least mask the odor. While searching the internet I came across this combination that does work!!!��

This is my daily routine
1. I take kelp 150 mg and zink 100 mg. (AM)
2. One cup of orange juice with 2 tsp of maca (AM)
3. One cup of black tea with two tea bags - no sugar (AM)
4. 8 ounce bottle of spring water with one tsp of baking soda for breakfast (AM)
5. One cup of black tea two tea bags- no sugar (Noon)
6. 8 ounce bottle of spring water with one tsp of baking soda with lunch (Noon)
7. Sip on spring water & baking soda through out the day while chewing gum!

I eat regular foods through out the day ( no restrictions)
I had a week consisting of
1. pre menstruation,
2. a busy & sweaty day
3. A nerve wrecking meet
All are the worst times for me and I had no BO!!!!
I'm elated, ecstatic and joyously humble. I'm assuming so are my coworkers��
I want to thank God for giving me a resolution to my problem!��❤️

Sep 12, 2014, 9:59:00 AM
Anonymous said...

I'm very happy to hear you found a remedy for you (our) condition. I tried a couple of mixes of things and behaviors that help some people, but it looks like it's up to every individual if same things work for him also. I'll try your receipe also and I hope it will work for you on longterm basis also, not just short term like it likes to happen with this disease.
Keep us informed, ok?
Good luck
Peter

Sep 17, 2014, 1:48:00 PM
Unknown said...

I have the same issue please help me

Aug 9, 2016, 11:38:00 PM
HML said...

BB BO, is your solution still working....I've been suffering with this problem for over 12yrs.

Feb 12, 2017, 12:21:00 PM
HML said...

I'd like to know if the solution that BB BO posted has been working for anyone?

I've been suffering for over 12yrs with this issue and I'm praying for an answer.

Feb 12, 2017, 12:23:00 PM
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