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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

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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

Tuesday, July 2, 2013

Batch#6 Results and More Options MEBO TMAU Test Program

NEW TEST AND PAYMENT OPTIONS

$150 plus shipping for ONE TEST
$250 plus shipping for TWO TESTS OVER TIME


MEBO INTERNATIONAL TMAU TEST PROGRAM

Click on icon to see chart
As the results of Batch #6 arrived, patterns begin to emerge. The most significant pattern in particularly is noted when persons repeated their test two or three times over time. Below is a brief portrayal of various cases:

  1. Changing the length of time between intake of choline pills and sample collection: Sufferers modified on their second test, since they had noticed that their odor became stronger a few hours after they had already taken the sample the first time. Some, not all, had a different results.
  2. Some sufferers had been on a low choline diet for a long time (sometimes years) prior to doing their test, and a one-time dose of choline pills was not sufficient to produce a positive results. However in some cases, the second time around, consuming a diet higher in choline for a longer period of time prior to taking the choline pills seemed to "saturate" their bodies with TMA, resulting in a positive test result.
  3. Other persons chose to test a second time waiting for the moment when they were certain that the odor was strongest, especially under certain personal conditions. The negative results of the first, and positive results of the second tests were indicative of intermittent TMAU.
  4. An other persons' second TMAU Test reconfirmed to them that they do not have Primary or Secondary TMAU, and most likely, do not have intermittent TMAU. These sufferers are the ones who most need additional research to understand other causes of breath and body odor conditions.

As a result of the above-mentioned experiences, it appears that it would be more beneficial to sufferers for MEBO to offer various testing and payment options, and effective immediately, the following will be offered:

TEST OPTIONS:
Test Option #1: One test kit for $150 plus round trip shipping cost.

Test Option #2: Two test kits to test over time, for $250 plus round trip shipping cost.

NOTE : If you have already done your TMAU Test through MEBO, you can test again for $100 plus round trip shipping.

PAYMENT OPTIONS:
Payment Option #1: Payment in full using initial invoice sent by MEBO.

Payment Option #2: Two payment option, with the minimum first payment to cover round trip shipping cost, and the second payment prior to the samples being analyzed.

HOW TO REQUEST TEST OPTIONS
Anyone interested in taking advantage of any of the option noted above, would first need to fill out the TMAU Test Requisition Form, and send me an email informing of any any Option #2 you may prefer.

HOW TO ARRANGE FOR MY TMAU TEST
Click here

TMAU Test Requisition Form
No additional cost throughout the test process will be incurred
after initial payment of test & round trip shipping


María


María de la Torre
Founder and Executive Director

  A Public Charity
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)


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A EURORDIS and NORD Member Organization 

6 comments:

Anonymous said...

Boost diet update....my odor returned stronger than before the antibiotics and I'm taking large doses of align and vsl#3...........roughly how many people tested positive for tmau after initially testing negative then retesting.....????????????

Jul 3, 2013, 6:27:00 PM
Maria de la Torre said...

Hi Anonymous,
Sorry that your odor returned stronger than before antibiotics. I do hope your large doses of align and VSL#3 will help. You might also want to examine whether you've been under greater stress, physically and/or emotionally. I find that physical stress like allergies, being exposed to people who have a cold, for example, could trigger my odor for a while. Perhaps that's because being exposed to it may create some degree of physical stress as my body tries to fight the virus??? Don't really know, it's just speculation on my part, but I’ve seen this pattern in me.

Regarding re-testing, the main reason I created the chart of results, http://www.meboresearch.org/Individual%20stats%20compared%20to%20group%20of%20141%20results%20of%20Batch%231-6.pdf is because there are way too many people asking to re-test, and I refer them to the chart. I point out to them that if they believe they had odor around the time they took their sample and their results is deep into the negative area of the chart, and then I try to discourage them from spending their money again. Some have insisted on re-testing, and their results do come back negative.

On the other hand, those that are borderline negatives may ask me whether they could test again because they wonder if perhaps they did something wrong during the collection time, or had been on a low choline for a long time and not reached a saturation of TMA in their system, etc. And those I do not discourage, and instead give them a discount for their second kit. Off the top of my head, I can think of one who recently was borderline negative on her first test, and then positive on the second.

According to Dr. Cashman, there are people who have transient TMAU, i.e., menstruation, or even only at certain times of their lives, childhood TMAU, adolescence or menopause, for example (see ‘Differential Diagnosis’ in NIH pages http://www.ncbi.nlm.nih.gov/books/NBK1103/. I wonder if there could be other causes for transient TMAU (don’t know). I suppose it would be important to some borderline negatives to re-test to see if their results are altered under different circumstances.

In your case, with what you are telling us here, you had no odor under certain conditions (diet, gut management under your doctor’s care, probiotics, etc.), and then the odor returned strongly after a course of antibiotics. It doesn’t mean that your odor was necessarily TMAU, though, and that you would need to re-test. I would double check where your first test results falls in the chart and consult with your doctor who’s been helping you so much with such great guidance. I wish I had answers for you. Someday, we’ll know more about these things. Hope your probiotics will help you. Please let us know how you progress.

Jul 4, 2013, 8:34:00 AM
Anonymous said...

Thanx that helps, my results were well negative not borderline, it might be best spent to donate money toward research than to retest. Yes i have not been sleeping much so physical stress, and new work stress too so emotional stress, that could be triggers. Really my doctor says because the odor symptoms change so frequently, its hard to know really what affects the odor positive or negative.......yes stress could be a trigger right now?????????

Jul 4, 2013, 5:15:00 PM
Anonymous said...

boost diet update, i am eating wheat and gluten again, without any noticable side affects at all, and no odor increase....its been 1 week.

Jul 13, 2013, 12:17:00 PM
Anonymous said...

boost diet update, i spoke too soon, my body has been having a strong negative reaction to gluten the past couple days. gi upset, heartburn, sore throat,

Jul 16, 2013, 5:58:00 AM
Anonymous said...

boost diet update. ,my reaction to gluten is a thousand times worse than it ever was before i began the gluten free diet, no odor changes though.

Jul 18, 2013, 10:01:00 PM
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