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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, May 5, 2009

Summary Blog posts on prebiotics and probiotics

One of the most important ways in which a probiotic organism may exert a beneficial effect on its host is to modify metabolic processes, particularly those occurring in the gut.1. Post title: The different types of probiotics

  • Summary
  • probiotics that are natural inhabitants
  • probiotics that are not normal-inhabitants and so are transient, but they may have some advantageous benefit in the short-term…
2. Aruns opinion on body odor and halitosis,
Unfortunately, these types of rare strong odour conditions are difficult to treat but some people have had some success by following unusual diets e.g. vegan diet, low choline diet etc combined with excluding indole-producing vegetables from the diet. They have combined such diets with the use of supplements such as probiotics, chlorophyll, and used low PH body washes etc. It is my belief that for the systemic variety (means passed round the body via the blood) of breath/ body odour, if you do not get the diet right then no amount of supplement or body wash will help since you are still getting high levels of smell-forming metabolites being produced from the diet...
3. The Barron Report: The Probiotic Miracle
Then there's the question of how many live microorganisms are left in your formula when you actually use it. Pick up any probiotic formula, look at the label, and you'll see something like: "Contains 13 billion live organisms per capsule at time of manufacture." And that's the problem: "at time of manufacture."The die-off rate for probiotics can be astounding. Most formulas will experience a die-off approaching log 3 within just 60 days of manufacture. That means that the 13 billion you see on the label may be down to 13 million, or less, by the time you use it. Heat and moisture accelerate the process, which is why most manufacturers recommend keeping your probiotic supply refrigerated...

4. Prebiotics also discussed in video, Healing Quest TV article on probiotics (in general)
While probiotics are the actual friendly bacteria (hopefully, depending on what the manufacturer put in the capsules), prebiotics are regarded as the food for the desirable bacteria. They usually discriminately favor desirable bacteria (to different degrees of specifity), such as bifidogenic meaning they are good food specifically for bifidobacteria. As well as being naturally in certain foods, prebiotics can also be bought as a separate supplement and often are added to probiotics…

5. What are probiotics? This book, Probiotics, The scientific basis, presents the notion of probiotics since 1989.

6. Probiotics: Metabolic interactions in the gut
One of the most important ways in which a probiotic organism may exert a beneficial effect on its host is to modify metabolic processes, particularly those occurring in the gut. Such a beneficial effect could be achieved in theory by a variety of mechanisms:
  • By suppressing reactions which result in the generation of toxic or carcinogenic metabolites.
  • By stimulating enzymic reactions involved in detoxification of potentially toxic substances, either ingested or formed endogenously.
  • By stimulating mammalian enzymes involved in the digestion of complex nutrients, or when such enzymes are absent (due to genetics or disease) providing a bacterial source of these enzymes.
  • By synthesizing vitamins and other essential nutrients not provided in sufficient quantities in the diet...
7. videos : introduction to probiotics and Healing Quest TV article on probiotics (in general)

8. Part 2 of interview with Cass Nelson-Dooley of Metametrix

What do you think of the quality of probiotics on the market and are there any brands of probiotics you recommend ?

We are impressed with Klaire Labs probiotic and prebiotic formulas. I also like Custom Probiotics and a high dose probiotic called VSL#3. Designs for Health has a good probiotic product as well.

Is taking prebiotics on its own a good idea ? And which type of prebiotic do you feel is best ?

Fruits and vegetables are a great source of fiber (prebiotics). Other ideas are inulin, xylooligosaccharides, larch arabinogalactans, and beta glucan.

Is there general treatment advice for 'suspected' dysbiosis or does it vary too much ? For instance, take nystatin and metronidazole in a 'scorched earth' policy ?

I think the “4R Protocol” is the most general treatment advice and it’s comprehensive, but every doctor has a different approach and dysbiosis treatment should be tailored to the patient.

Treatment using 4 “R” Protocol for Intestinal Health from the GI Effects Interpretive Guide

Remove offending foods, medications, gluten (if sensitive) and reduce poor quality fats, refined carbohydrates, sugars, and fermented foods (if yeast is present). Consider antimicrobial, antifungal, and/or antiparasitic therapies in the case of opportunistic/pathogenic bacterial, yeast, and/or parasite overgrowth (see below for specific recommendations).

Replace what is needed for normal digestion and absorption such as betaine HCl, pancreatic enzymes, herbs that aid in digestion such as deglycyrrhizinated licorice and marshmallow root, dietary fiber, and water.

Reinoculate with favorable microbes (probiotics such as Lactobacillus sp., Bifidobacter sp., and Saccharomyces boulardii). To enhance the growth of the favorable bacteria, supplement with prebiotics such as inulin, xylooligosaccharides, larch arabinogalactans, beta glucan, and fiber.

Repair mucosal lining by giving support to healthy intestinal mucosal cells, goblet cells, and to the immune system. Consider L-glutamine, essential fatty acids, zinc, pantothenic acid and vitamin C.

Why does the intake of probiotics sometimes produce bloating and gas in some people and not in others?

Not all people react the same to probiotics because it depends on their microbial populations. When a person has a poor diet (high simple sugars, low fiber), taking probiotics can produce gas. However, this usually goes away with time. If the patient increases complex carbs and decreases simple sugars that often decreases any gas and bloating brought on by the probiotic. When there are unexplained reactions to probiotics or prebiotics, it is a good idea to run an Organix test, a GI Effects test, or food antibody test to identify underlying imbalances.

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