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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

Sunday, September 20, 2020

Fluxovas makers interested in TMAU

The makers of FLUXOVAS ( Department of Pharmacy "Federico II" University, Naples) are very interested in the TMAU community, and wish to develop relations with our community in relation to how FLUXOVAS might help TMAU.

MEBO has been in communication with the lab.
They write to MEBO (some quotes) ...

***

" Our preliminary studies lead us to think 
that Fluxovas acts in the intestine. For this reason we are conducting 
current experiments on the possible remodeling of the intestinal 
microbiota. But surely as a next step we will also evaluate the 
possible action on lyase.
Probably, following these experiments, we will test fluxovas and a 
modified formulation of fluxovas on Italian patients.
If you are interested, we would be happy if any of you try it for feedback.

Of course, the product has been tested on humans with trials and 2 
studies have already been published, but only on the decrease in TMAO 
levels and without yet clarifying the mechanism of action. For this 
reason we are continuing with other studies.
I understand that the difficult is the anosmia to your smells, but 
maybe someone will benefit and can give us a feedback.
If possible, propose it on the blog and let's try to organize.

***

Clearly, even if not directly, many people contact us to understand if 
Fluxovas can help in TMAU. As already happens for some realities in 
Italy, we are happy to collaborate with you too.
As you know, Fluxovas is a totally natural food supplement, it has no 
contraindications and problems of association with other drugs and 
foods. Here in Italy many pharmacies sell it and possibly we could 
help you get in touch to buy the product. We don't want you buy the 
product now, we would like to send you samples of Fluxovas for 3/4 
people so that you can try the product and then give us some feedback 
about it.
We are also working on other formulations and when they are ready, we 
would like you will try them. Your opinion on the effects of the 
product is important for us.

***

 we work on food supplements and nutraceuticals for health disorders 
(cholesterol, triglycerides, glycemia, hair health, acne, 
cardiovascular health, etc)
We test these products developed by us in vitro and in vivo with 
clinical trials. Fluxovas has been on the market for almost a year.

***

Our scientific assumption is based on studies in the literature that 
have shown that polyphenols are able to reduce the growth of bacteria 
that produce TMA and increase the share of those that do not.
We assume that fluxovas works by remodeling the gut microbiota. In 
particular, currently we are investigating on the possible effect of 
Fluxovas in reducing the growth of TMA producing bacterial. Where our 
results will be confirm, we will be able to established this one as 
the main mechanism of action for TMAO reducing effect of fluxovas, in 
this way fluxovas might be a useful therapeutical for management of 
tmau since could be blocked tma production.  "


MEBO will keep the community informed with how this opportunity develops.

***
For TMAU people wishing to try Fluxovas.
It seems it's only curently available from Italian Pharmacy sites (and perhaps Ebay).
The cheapest seen so far is PETRONEONLINE at 13.5 euros + shipping.
Let us know where to buy from, or purchase issues.

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A EURORDIS and NORD Member Organization

2 comments:

Unknown said...

How is Fluxovas supposed to help with TMAU when it is a cardiovascular supplement??

Sep 20, 2020, 9:14:00 PM
Val H said...

I have just bought Fluxovas but am not sure how I should be using it to best effect, I.e. with food, before food or maybe first thing in the morning?? If anyone can advise I would be most grateful. Thanks, Val H

Sep 21, 2020, 6:22:00 AM
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