Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out

Labels

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

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

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

Friday, March 27, 2009

De-Fishing Soap

The De-Fishing Soap : Is it good for TMAU sufferers?

There are many skin products in the market that persons with odor need to cipher through to determine what will work and not work to help reduce fish odor produced by a deficiency in the FMO3 enzyme. After running across this video on De-Fishing Soap, I decided to research a little more into it. I think it’s important that sufferers become informed consumers.

After reading the ingredients of this soap, I see that it contains glycerin. It so happens that glycol concentrate (Propylene Glycol) has a pH of 9.5, as indicated in a chart in raypak.com . In another site, peacefulscents.com, I found these beautiful soaps that also contain glycerin which they claim has a very high pH of 8 to 9.

Soaps with such high pH seem to go against the research posted in this blog, one of which basically quotes a Trimethylaminuria paper written for the NIH Gene Reviews, sited by Drs. Phillips/Shephard in London,
Use of acid soaps and body lotions. Trimethylamine is a strong base (pKa 9.8). Thus, at pH 6.0, less than 0.02% of trimethylamine exists as the volatile free base. The use of soaps and body lotions with a pH close to that of normal skin (pH 5.5-6.5) helps retain secreted trimethylamine in a less volatile salt form that can be removed by washing.
This paper recommends the use of acid soaps and body lotions to reduce the very alkaline pH of TMA. Another paper by the University of Washington, Seattle, funded by the National Institutes of Health, also recommends the use of acid soaps and body lotions.

Therefore it appears that the De-Fishing Soap works well only for fishermen whose source of fish odor is an external source. It may be that the star anise essential oil and the Australian tea tree essential oil could work well with the glycerin to remove the TMA smell of the fish. However, the TMAU sufferer’s fish odor comes from an internal source - the TMA flowing through the blood and coming out of the skin through perspiration. Therefore, a person with TMAU have different needs, which are primarily to lower the skin's pH.

These are the ingredients of this soap:
De-Fishing Soap contains purified water, glycerin, sodium stearate, sorbitol, propylene glycol, Sodium laureth sulphate, stearic acid, lauric acid, sodium chloride, star anise essential oil, Australian tea tree essential oil, and FD&C blue dye #1

http://www.defishingsoap.com/

4 comments:

Dave nguyen said...

Hi,

Really appreciate your article.
Do you happen to know the proportions of the ingredients of Defishing Soap?

Thanks in advance.

Cheers,
Dave

Jun 18, 2013, 2:20:00 PM
Maria de la Torre said...

Not really, sorry. Would you like to write to them to find out and let us know?

Jun 18, 2013, 4:04:00 PM
Dave nguyen said...

I thought that would be their propriatery info...Btw, may I know where you get the infi on the ingredients?
Thanks!

Rgds,
Dave

Jun 25, 2013, 8:35:00 AM
Anonymous said...

There are brands of soaps such as Aveeno which have glycerin in the ingredients but the soap itself is a pH of 5.5

Feb 26, 2017, 3:35:00 PM
Post a Comment