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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
See RareConnect
rareconnect.org TMAU

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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)

Thursday, January 15, 2009

Women's Conference Call topic of discussion: treating vaginal odor

Our Women’s Conference Call yesterday was primarily about medical treatments prescribed by our gynecologists and remedies that have worked for some of us with vaginal odor. Women who suffer from a body odor condition in which volatile organic compounds (VOCs) are found in their blood and released through their breath, their skin through oils and perspiration, urine, and vaginal fluids seem to develop a secondary condition involving a very alkaline vaginal environment that is conducive to a microbiota imbalance.

As we have discussed in the past, a metabolic BO sufferer’s usual body odor is heightened before and during menstruation as a result of the hormonal changes that take place at this time of the month. After consulting with their gynecologist, some women have opted to use Depo Provera (medroxyprogesterone) injections to almost completely eliminate or completely eliminate ovulation and menstruation. With this hormonal treatment, women are able to forego the more odorous time of the month because in addition to preventing ovulation this hormonal treatment also changes the cervical mucus and uterine lining.

For this same purpose, some women have also taken Ortho Cyclen (ethinyl estradiol and norgestimante) under their gynecologists’ care. This combination of female hormones prevents ovulation resulting in changes in the cervical mucus and uterine lining.
Some of the VOCs, such as trimethylaminuria (TMA) are very alkaline (have a high pH). When the pH is not balanced at or around 4.5, an overgrowth of certain microbiota in the vagina may occurs, thus yeast or bacterial (gardnerella) infections may develop. See post in this blog entitled, ‘Non-infectious and infectious causes of vaginal odor'.

Due to the close proximity of the urethra to the vagina, bladder infections may also develop. Both need to be treated together or they will continue to contaminate each other resulting in a long term condition. Some gynecologists have prescribed Aci-Jel (Acid Gellant) to some of the ladies, which is a bland non-irritating, water-dispersible, buffered acid jelly for intra-vaginal use.

Due to the close proximity of the urethra to the vagina, bladder infections may also develop. Both need to be treated together or they will continue to contaminate each other resulting in a long term condition. Some gynecologists have prescribed Aci-Jel (Acid Gellant) to some of the ladies, which is a bland non-irritating, water-dispersible, buffered acid jelly for intra-vaginal use. Aci-Jel has a pH of 1.6 and lowers the vaginal pH to 4.5 when used every 3 days. By stabilizing the vaginal pH, a healthy microbiota balance can be maintained.

One of the women on the call was concerned about the fact that Aci-Jel contains egg albumen (egg whites), and wondered if it would be high in choline, and we had a discussion about egg whites not being high in choline, but instead the egg yolk is high in choline. In addition, the amount would be very small, and we were not convinced that it would permeate into the bloodstream, so we felt that it should not contribute to the odor. Nonetheless, women who have sensitivity to egg products should consult with their physician before using this prescription medication.

In addition to the above-mentioned prescription medications, we discussed the benefits of a probiotic specifically designed for women, called Fem-Dophilus® from Jarrow. As far as we know, it could only be purchased only online.

After all this discussion, we reiterated to each other the importance of a proper diet to control the VOCs in our blood that in addition to producing odor, may also be altering our vaginal pH resulting in odorous infections as well. We also strongly emphasized the importance of consulting with one's gynecologist before undergoing any hormonal treatment or using any prescription medication.

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