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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
or contact
Join/Watch the weekly
BO Sufferers Podcasts

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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

Sunday, August 23, 2009

More about the MeBO-Biolab dysbiosis tests

The MeBO-Biolab gut dysbiosis study, as well as being useful, hopes to set a precedent and an example of what sufferers can do with the power of the internet.

It has been decided to add the 'gut permeability' test to the group of tests, or as most people would know it, the 'leaky gut' test; since the volunteers are paying and they can pick which tests to leave out. This test is £75, which is why it was originally left out. There are other tests MeBO would have liked to have done, but these 4 tests seem a good choice from Biolabs list of tests for gut dysbiosis in particular.

Usually people cannot test direct using Biolabs test, but the management is kindly co-operating with us in this study. A form has been set up for anyone who wishes to be part of the study, but if people don't feel comfy giving all their details on the form, please let us know privately. The personal details are what Biolab require, whereas MeBO does not require identifiable information. MeBO hopes to collect information that is hopefully relevant to looking for a pattern.

The procedure for testing will be : to contact MeBO. MeBO will ask you to fill out the form. Then MebO will contact Biolab and yourself to see how you wish to test.

Biolab normally does not send the results direct to the patient. In this case, Biolab asked us to have the results sent to an 'expert' of relevancy. This has been arranged, and then the results will be sent to the patient along with some advice on the results. MeBO will collect the results data and will not use identifiable information.

The form to test in MeBO-Biolab Gut Dysbiosis Study is here :
MeBO-Biolab gut dysbiosis in body odor or halitosis study form-REVISED

Below is some more information on the tests chosen. The study should be seen as the first of many studies (preferably paid for by external funding), rather than the one and only necessary test. The only likely outcome in the study is that many people with fecal body odor may have dysbiosis of one or more types tested. No final conclusions can be made from such a study. For example, it cannot be deduced that this causes an odor.

Gut fermentation test : This tests checks for alcohols and short chain fatty acids in the blood after a glucose dose in a hardened shell, so that the glucose is not absorbed until it is released in the small intestine. Then a blood sample is drawn and tested. Ethanol in the blood is supposedly only likely from yeast fermentation in the gut (or alcohol consumption). The other alcohols are associated as metabolites from bacterial dysbiosis. It is vital that the person does not ingest alcohol near the test, because this will be detected and make the results void.

The alcohols are:
ethanol
methanol
2-propanol
1-propanol
2-methyl-2-propanol
2-methyl-1-propanol
2,3 butylene glycol

The short chain fatty acids tested for are associated as 'good' metabolites from colon bacterial fermentation from 'good bacteria'. In gut dysbiosis, it would generally be expected for these fatty acids to be too low, due to 'nasty' bacteria or fungus being dominant and minimizing the 'good' bacteria.

The short chain fatty acids are:
Acetate
Propionate
Butyrate
Succinate
Valerate

The patient is given 1 gramme of glucose in hardened gelatine capsules (2 x 500mg capsules) with 4 grammes of glucose dissolved in 80-100ml of water. The glucose solution prevents the capsules from disintegrating in the stomach and this ensures that an adequate amount of glucose passes into the duodenum. A blood sample is taken one hour later and the plasma is analysed for simple and complex alcohols along with short chain fatty acids. Comments are added when abnormalities of bacterial fermentation or a possible yeast overgrowth are indicated by the results. [Grey top fluoride oxalate tube (DO NOT USE ALCOHOL SWAB), No food for 3 hours and no alcohol for 24 hours before the test, kit available from the laboratory]
£46.00
1993 Abstract: Abnormal Gut Fermentation: Laboratory Studies Reveal Deficiency of B Vitamins, Zinc and Magnesium
1990 Abstract: Gut Fermentation (or the "Auto-brewery") Syndrome: A New Clinical Test with Initial Observations and Discussion of Clinical and Biochemical Implications
Biolab document: Gut Fermentation test (PDF)
http://www.biolab.co.uk/gutferm.html

Gut permeability test : This test involves taking polyethylene glycol (PEG400) which has various molecule sizes and is inert and excreted in the urine. Only the smallest molecules should be absorbed show up in the urine. If they don't, it implies an under-absorption issue. If the larger molecules turn up in the urine, it implies 'leaky gut'; that is, molecules that should normally be too large to be absorbed through the small intestine have been absorbed.

http://www.biolab.co.uk/docs/peg.pdf
http://www.biolab.co.uk/docs/pegrep.pdf
http://www.biolab.co.uk/docs/peginst.pdf

Indicans would be a straightforward and inexpensive way of looking for intestinal toxaemia and overgrowth of anaerobic bacteria, and would be an interesting approach, requiring a mid-stream, early morning, urine sample.
Tryptophan fermentation by bacteria produces a metabolite known as indicans. The test is thought to imply a problem with protein-eating bacteria.

D-lactate is a specific bacterial metabolite and would not normally be found in blood unless there is a bacterial infection. So for patients with gut symptoms it looks as if this might be an interesting way of looking for intestinal infections. The symptoms of such infections can be quite wide-ranging and a recent publication found a correlation with chronic fatigue (suggesting there may be a bacterial cause). Lactic acid producing bacteria produce d-lactic acid. this is poorly metabolized and can cause d-lactic acidosis. it is not the same as l-lactic acid. Its not often tested for or considered a problem except with people with part of their small intestine removed/missing, but a recent paper on chronic fatigue associated it with chronic fatigue. It's also known to give off H2S under certain circumstances.


The form to test in MeBO-Biolab Gut Dysbiosis Study is here :
MeBO-Biolab gut dysbiosis in body odor or halitosis study form-REVISED

Donate to MeBO Research

What MeBO is doing

MeBO Research aims to become a charity focusing on systemic body odor and systemic sourced halitosis, particularly 'bowel smells' body door, since it is the most common. Any donations are welcome to primarily reach MeBO's aim of charity status. As a charity, MeBO can then pursue grants and endowments in order to carry out large-scale international studies.

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