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MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

Current people sent kits : 100/100
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TMAU Petition world
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Denver TMAU Test Lab survey click here
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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

Tuesday, July 30, 2013



A discussion to learn from each other

After having tried different probiotics throughout the year, some under my gastroenterologist and dietitian's care, and others recommended to me by healthcare providers of alternative medicine, I would like to share in this blog my thoughts and experiences on the topic. As mentioned previously in this blog, I am not an expert.

there are various classifications of colonies of microbial species in the guts of all human beings around the world
Based on what researchers of gut microflora have told us, there are various classifications of colonies of microbial species in the guts of all human beings around the world. Not all of us have the same gut flora composition, though some of us might have similar ones. Therefore, just based on the different types of colonies that a healthy gut may have from another person’s, it would make sense that blindly taking any brand of probiotics is truly an exercise in trial and error.

If in addition, we have other variances such as lactose intolerance, Crohn’s disease, inflammatory bowel disease (IBD), Irritable Bowel Syndrome, diverticulosis disease, or other disorders, that also play a role on which probiotics will benefit some, while actually causing discomfort in others.

This is why there is so much research taking place now on the study of microbiome, initially with classifying the different groups of microbial colonies in the human gut based and the observing their effect on the body of its host. One can say that we are still in the infancy of this science, which has taken off since microbes can now be identified through their DNA.

I personally am NOT lactose intolerant, and therefore do not need to be concerned about it, so others in this community who are lactose intolerant can discuss using the 'Comment feature' of this post, to describe the effects of the various probiotics on lactose intolerant individuals. I suppose that based of what some sufferers have claimed, that it is important to first determine whether one is lactose intolerant before making a decision of which probiotic to take in order to prevent adverse reactions.

I do suffer from IBS and diverticulosis disease, and I had a very bad case of diverticulitis a few years ago. I was hospitalized and administered antibiotics intravenously for 5 days without being allowed to eat or drink anything – not ever ice chips. After the treatment had been completed, I still had to take additional oral antibiotics at home for a few more weeks. Before discharging me from the hospital, my gastroenterologist told me that my intestines were almost sterile at that point, which is highly dangerous because pathogenic strains could inhabit my gut and thus become life-threatening. I thought he would proceed to say that he would prescribe extremely strong probiotics like prescription strength VSL#3, Instead, he said that even though I was going to be taking antibiotics at home, he wanted to start me on the brand, ALIGN, which contains the strain B. infantis 35624. I would not take them together, but instead, would take the probiotics a few hours after the antibiotics. Even though Align is more expensive than some, it is a fraction of the cost of VSL#3. The box claims that it is the #1 most recommended by gastroenterologists. I took it and it helped. However, personally, I find that VSL#3 works the fastest in relieving my IBS symptoms, and I now always take it DURING a course of antibiotics (a few hours after the antibiotics has had a chance to be absorbed from the gut into the bloodstream).

VSL3 is ridiculously expensive, and probably especially so for persons who do not live in the US or UK. I have also tried the brand name Innate, particularly their Flora 20-14 Ultra Strength. This company has stronger clinical strength as well. My mom takes the Innate Colon Care, and it seems to help her.

Some sufferers may find that one brand of probiotics may give them adverse reactions, so they change to a different type and the second one may work well for them. Until researchers make greater discoveries on gut microflora, we are left to explore individually to see what works or doesn't work. I do believe that the general consensus amongst experts is that probiotics are not harmful.

On his webinar, Dr. Robin Lachmann says that it is not necessary to purchase very expensive probiotics because once introduced to the body, the good bacteria colonizes and multiplies on its own. For this reason, I don’t always take probiotics for a very long period of time – it does get expensive. I just stop taking it when I see that my symptoms have subsided, and begin taking them again when the symptoms flare up again.

This is a precise summary of the benefits of probiotics by Ian R. Rowland from a 1992 book by probiotics expert, Roy Fuller.
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:
  1. By suppressing reactions which result in the generation of toxic or carcinogenic metabolites.
  2. By stimulating enzymic reactions involved in detoxification of potentially toxic substances, either ingested or formed endogenously.
  3. 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.
  4. By synthesizing vitamins and other essential nutrients not provided in sufficient quantities in the diet...
Book: Fuller, R. (Ed.). (1992). Probiotics, The scientific basis. London: Chapman & Hall.

Another article from Fuller, R (1991) : from pubmed central

Other posts in this blog on PROBIOTICS:

Summary Blog posts on prebiotics and probiotics

International shopping for probiotics and other supplements

This seems to be an advert for a specific probiotic brand, but is posted rather for the educational purpose, since it's a good intro to probiotics. Please do not take it as a recommendation of the brand. There are many brands in the market.
María María de la Torre Founder and Executive Director A Public Charity (em português) MEBO's Blog (English) El Blog de MEBO (español)
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Hope said...

I would like to try VSL3 as I have heard a lot of people make positive comments about it, but this is too expensive for me to get sent to the UK at the moment. I have found it very difficult to find a decent probiotic in the UK. Especially, as far as I am aware, there are no probiotics sold directly from the fridge which makes me wonder how effective they are.

What I have had success with is water kefir. I feel it actually works as when first taking it I have felt die off type reactions such as dizziness. Also slight digestive discomfort when first taking it as my stomach gets used to the beneficial bacteria, this went away after 2 weeks.

What's really good about water kefir is it only cost me an initial £12 for a table spoon of kefir grains. Since then these grains have grown to a massive size and I make at least 6 litres of kefir a week. All I need to add to the grains is 2 spoonfuls of sugar and water so it is a very cheap alternative to shop bought probiotics if people cannot afford them or can't find a brand they trust.

Jul 30, 2013, 3:01:00 PM
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