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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

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
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Blog Archive

UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :
https://meboresearch.co.uk/index.php/living-with-tmau-lwtmau-study/

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

Tuesday, October 14, 2008

Arun Nagrath on Vitamin B2 (riboflavin. The co-vitamin in the function of Flavin Mono-oxygenase enzyme)

On 18 June 2005, Our scientist, Arun Nagrath, Pharmacist. BSc Pharmacy Hons, MSc., Postgraduate researcher in Odour Analysis, posted in MSN about his observations of a good measure of success that some people were having taking vitamin B2, and he adds some tips and advice which may help get the most out of this vitamin supplement.

Hi, I have noticed that a number of people have now had a good measure of success on taking B2 and I would like to add some tips and advice which may help get the most out of this vitamin supplement. Perhaps it is easier for me to do this in a questions and answers format:-


1 What type of odor conditions does B2 help with and how well does it work?

Well, currently Dr Eileen Treacy is looking specifically into the use of B2 (riboflavin) in patients with Trimethylaminuria. It has also recently started being recomended by researchers in the field... Clearly, it has good effect in some people. It is early stages yet and we will know more about it's place when Dr Treacy publishes her results.

My findings are that even people who do not appear to have symptoms of trimethylaminuria may derive benefit from it! I have seen this in people who have just an intermittent strong underarm sweaty odor and no breath odor and no increase in odor after consuming substantial quantities of choline-rich foods. These people have reported approximately an 80% reduction in odor.



2 What dose should one take and is it safe?

The people I know who have tried this have used doses of 100mg four times a day (sometimes more). This dose has been given to patients undergoing a trial on the use of B2 in migraine prophylaxis and it has generally been well tolerated.

Doses of 400 milligrams daily for four months were found to cause diarrhea and polyuria in two out of 28 subjects who participated in a migraine prophylaxis study. Riboflavin supplements impart a yellow-orange discoloration to urine. This color has no pathological implication. Other possible side-effects at this dose are that it can cause B-complex imbalances, dark urine, nausea, and vomiting.


I have got the following information from an excellent article on B2 and here is a link to it:-

http://www.gettingwell.com/drug_info/nmdrugprofiles/nutsupdrugs/rib_0263.shtml



PHARMACOKINETICS

The maximal amount of riboflavin that is absorbed from a single oral dose appears to be about 27 milligrams.

A significant percentage of large intakes of riboflavin—greater than 30 milligrams in a single dose—is excreted in the feces.


DOSAGE AND ADMINISTRATION

Doses of riboflavin greater than 30 milligrams should be taken in divided doses.


Okay, so what does this mean? It means taking 100mg four times a day will waste some B2. If the brand of B2 you buy is cheap in your store then that really doesn't matter. However, if it is expensive then you may want to half the tablets and take just half a tablet 4 times a day. The doses are a bit arbitrary so I wouldn't worry about taking exactly 400mg in a day.


3 Should I take B2 with other vitamins (eg B complex)?


Well I have read 2 things about this. These include:-

a) Vitamin b2 works with vitamins B1, B3 and B6 (aswell as other non-B vitamins eg vitamin C); consequently vitamin B2 should be ideally taken as part of a B complex supplement. Normally it is recomended to buy a riboflavin B2 product that contains other B vitamins as well as they work synergistically.

Okay, here is my advice about all this:-

Whilst it is rational to take B2 as part of a B complex supplement, there is a difference in the various preparations of vitamin B complex. Vitamin B complex contains B1 (thiamine), B2 (riboflavin), B3 (niacin), B5 (pantothenic acid), B6 (pyridoxine), B12, Folic acid and Biotin. However, high strength vitamin B complex (such as B-50 complex) also contains Choline Bitartrate, Inositol, and PABA.

Yes, that's right B-50 complex contains choline so avoid that preparation if you have trimethylaminuria! Quite honestly, the important thing is initially just to see if the B2 works so I would say for new people trying it for the first time just take the B2 by itself for a couple of weeks. If it helps then think about whether or not you want to add vitamin B complex aswell. B2 has been tried by itself at these high doses for migraine sufferers for a few months so it should be relatively safe in the short-term.

Also, remember that we are temporarily treating a particular condition with higher levels of one particular nutrient. This is what the research is about so adding other things (vitamins, minerals etc) may confuse the results.

b) B2 should be combined with a roughly similar quantity of B6?

If this were true, then this would mean taking large doses of this. I do not advise this since there have been concerns about possible toxicity resulting from prolonged use of B6 at high dosage. These concerns have not yet been resolved.


Disclaimer - the above information is true to the best of my knowledge. If you have any concerns about taking B2 then you should wait for Dr Treacy to publish her findings on the subject or see your doctor before trying the supplement.

I hope that helps answer some questions.

Arun

http://groups.msn.com/BodyOdorSupport/general.msnw?action=get_message&mview=0&ID_Message=6338

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