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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

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BO Sufferers Podcasts

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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
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rareconnect.org TMAU

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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

Monday, January 18, 2016

1st mention of DMB pill as Choline - TMA blocker

An article in the Buffalo News is the first to mention that the product that the Cleveland Clinic is creating in a deal with Proctor & Gamble that will help with 'tmao management' will be a 'DMB pill'. This is the compound that was recently reported in a research paper to help block TMA formation from choline breakdown in the gut. Choline is normally broken down to TMA by gut bacteria. DMB seems to interfere with this process.

Until this article, we thought the the P&G deal would be DMB pill (or something better), but until this article we could not be sure. The article is by 2 Dr's, one of whom, Dr. Mike Roizen, is chief wellness officer and chairman of the Wellness Institute at the Cleveland Clinic. Given his position at the Cleveland Clinic, it can now be confidently assumed they are working on a 'DMB pill'


Quote from article : Obtain DMB from natural diet

Go for “fruity” extra-virgin olive oil There’s DMB in some fruity-tasting extra-virgin olive oils. You need two to four tablespoons a day; at 120 calories per tablespoon, you need to be aware of how that could add up to extra calories. Be sure to use olive oil in place of other fats and make other calorie adjustments as needed. Store olive oil away from light in a tightly capped, brown bottle to preserve DMB. Grapeseed oil, balsamic vinegar and red wine also may be good sources.

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37 comments:

Unknown said...

I'm so glad about this. Thank you Cleveland Clinic. I was losing all hope but this news makes me want to live a little longer.

Jan 18, 2016, 10:32:00 PM
Anonymous said...

This is also a good read:

http://www.ohio.com/news/break-news/preventing-heart-disease-start-may-start-deep-inside-your-gut-1.648345

Jan 21, 2016, 8:39:00 PM
Anonymous said...

Is Trinzyme project looking for a second grant or is the project been delayed? Any news?

Jan 23, 2016, 6:22:00 PM
Maria de la Torre said...

Yes we have been looking for a second grant on the Trinzyme project without much success so far.

Jan 24, 2016, 4:39:00 PM
Anonymous said...

Is there going to be an update anytime soon on Trinzyme? I believe the initial phase should be completed now or in a couple of months.

Jan 25, 2016, 5:10:00 AM
Maria de la Torre said...

Unfortunately, we have not heard that the Medical Research Council is going to award a follow-up grant for this research to continue. We are very much pursuing large grant(s) to be able to move forward in this project. I hope this won't take long because forward movement with this cannot occur without funding.

Jan 25, 2016, 7:06:00 AM
Anonymous said...

This is very upsetting to hear. If I had that kind of money I would have definitely helped. I can only continue to pray for this project.

Jan 25, 2016, 8:00:00 AM
Anonymous said...

Thanks Maria. If we do get a grant is there a rough expected time frame for therapy? Have we tried other sources like crowd funding?

Jan 25, 2016, 3:21:00 PM
Anonymous said...

Maria had the council rejected the further grants or has it been proposed to them yet? How much money are we talking about to reach to the end of trials?

Jan 26, 2016, 1:19:00 AM
Maria de la Torre said...

I have not heard that the council has rejected the further grant, and I'm certain it has been proposed as well as our scientists and MEBO trying to pursue private grants, but without success so far. Potential donors are much more quick to donate to popular diseases like cardio, Alzheimer, etc., than to TMAU, unfortunately.

Jan 26, 2016, 10:00:00 AM
Maria de la Torre said...

We have tried crowd funding, and sufferers have also donated, but what we need are hundreds of thousands of dollars for each phase of research, so the burden simply cannot be put on sufferers.

In a perfect world, if the money was flowing in as needed, it would take a few years from the beginning phase (what has already taken place) to the therapeutic being available in the market. The most difficult part for us to obtain funding is the phase we're at right now because the last phase(s) will be funded by a pharmaceutical. Of course, the more the pharma invests, the greater the price of the therapeutic will be for sufferers because the pharma wants a return on their investment. This is why we are trying very hard to get government or private philanthropist or investors, as opposed to turning to a pharmaceutical company straight away.

Jan 26, 2016, 10:05:00 AM
Anonymous said...

I am benefiting from the DMD that is in extra virgin olive oil and balsamic vinegar and grape juice. I take it twice a day and I can eat high choline foods like: milk, spinach, chocolate, fish, ect. without the different odors these foods would cause me in the past. It's been almost two weeks now. I think how crazy it is after all this time trying so many things like low choline diet, antibiotics, supplements, and fasting and the answer for me is simply olive oil and balsamic vinegar. I am still in a happy daze but also angry that the answer was so simple. I am so grateful to MEBO and of course Maria because I don't know if this information would be available to us without MEBO getting together with Cleveland Hospital/Dr. Stanley Hazen. Thank You from a long time sufferer!!!!

Jan 27, 2016, 12:12:00 AM
Anonymous said...

So the last option is to turn to pharmaceutical company?

Jan 27, 2016, 2:22:00 PM
Maria de la Torre said...

All efforts will be made to NOT turn to pharmaceutical companies so early in the process because when that happens, then the therapeutic ends up being so very expensive that it becomes out of reach to many sufferers, and insurance companies will try to not cover it, etc. It has happened with other drugs, and this is not what the scientists want. This is why it's so very important to obtain donations, especially philanthropic donations, as opposed to investors.

Jan 27, 2016, 10:46:00 PM
Stephanie said...

The fact that the tribune project may not move forward is extremely distressing. This was really where many of us were placing our hopes.

Jan 28, 2016, 9:56:00 AM
Anonymous said...

We should never give up hopes for this. As Maria mentioned it is still in the very early stages. Hang in there everyone. The DMB pill may also be a temporary relief too. I suspect it may help with TMAU but may not help with other type of odor such as Sulfur.

Jan 28, 2016, 4:35:00 PM
blogcontributor2 said...

We have 2 current 'hopes'.

1 is Trinzyme, which is exploratory and has little funding. We have to keep that in context.

2 is the 'DMB pill', which is meant for the CVD market and has unlimited funding and will happen. If you think trimethylamine is the only compound you smell if, in my opinion it should either be a good therapy (inhibiting TMA in the gut) or in effect a 'cure'. P&G have said they will be producing an OTC product which is most likley a DMB pill, so it's case of waiting.

So whatever happens, we have the DMB pill to look forward to.

Jan 28, 2016, 5:47:00 PM
Stephanie said...

I believe a small part of my problem may be Tma. But choline load didn't really put out much measurable Tma. I do know my issue gets really bad when I have my period. I also know certain antibiotics (cephalexin) makes it so bad people in any building I'm in can smell it. I suspect my problem is more than just the inability to metabolize Tma.
From what I could gather, the trinzyme project was going to help with fmo3 deficiency and not just Tma.

Jan 28, 2016, 7:00:00 PM
Anonymous said...

Maria, do you think we got the wrong diagnostic from the beginning? Maybe TMAU is only a small part of the problem. This is why the odor ranges from day to day like fecal, garbage or rotten eggs. Maybe you are affected by TMAU only if you actually smell like fish which most of us don't.

Jan 30, 2016, 5:20:00 PM
Anonymous said...

Maria I've tested negative for TMAU. My understanding of secondary TMAU is that there is an over production of tma in the gut. If that's the case the ratio should be good but shouldn't TMA still show up in the report. If it doesn't it means my odor is not affected by TMA but other sulfides/amines? It's very hard to understand.

Jan 31, 2016, 2:44:00 AM
Stephanie said...

DMB being used to induce cancerous tumors in mice...
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2073889/pdf/brjcancer00376-0153.pdf

Feb 8, 2016, 8:26:00 PM
blogcontributor2 said...

It's a different DMB :)

Feb 8, 2016, 8:34:00 PM
Anonymous said...

I too have suffered from a terrible odor. You don't know how good it feels to know I'm not the only one!For years I thought I was a freek of nature.I feel for each and every one of you who are also suffering.I pray to GOD almighty that a cure is found soon so that we can all have a normal life like others.Thank you so much Maria for all you do for us GOD Bless You! Signed, waiting

Feb 28, 2016, 4:14:00 PM
Unknown said...

Am also glad there is a cure coming out soon.

Apr 7, 2016, 4:33:00 PM
Unknown said...

Has there been any updates on the research/funding?

Apr 23, 2016, 11:11:00 AM
Unknown said...

Has there been any updates on the research/funding?

Apr 23, 2016, 11:13:00 AM
blogcontributor2 said...

no word yet. as there will be so much income expected from it, we won't be given any inside info on it. we will read any news in the public domain same as everyone else. A guess is that maybe there will be an update this year but probably not that it will be available soon.

Apr 23, 2016, 12:17:00 PM
Maria de la Torre said...

The funding for this research for cardiovascular disease has come from the U.S. National Institutes of Health grants through the years.

It is by chance that their research lead towards the inhibition of TMA production by gut bacteria, which inadvertently is a "life saver" for TMAU sufferers.

Since it is so extremely difficult to obtain funding for TMAU research, because it falls under the rare disease category, MEBO saw that this research was looking for ways to control TMA production for cardiovascular disease. This is when MEBO jumped at the opportunity to reach out to the researchers to see if they could help us.

Apr 24, 2016, 11:08:00 AM
Anonymous said...

So did the researchers say they could help us?

Apr 26, 2016, 6:01:00 PM
Unknown said...

Hi, have you still been seeing results from the olive oil and balsamic vinegar?

May 8, 2016, 2:15:00 PM
Unknown said...

I pray they get us a cure soon,we are here. My heart goes out to those who passed before the answers came.

May 8, 2016, 9:03:00 PM
Anonymous said...

Wonderful news about the possibility of a pill. Maria and Dr Rozen,may God bless you for your tireless efforts.

Jun 25, 2016, 4:24:00 PM
Anonymous said...

I don't even what my condition is. My symptoms vary from fecal,garbage,rotten mushrooms to chicken manure or cow dung; and it all depends on what foods I ate or spices in them. Just the other day someone came in the rm in which I had been for a while, and she commented that it smelt like weed. I don't even know how weed smells like. People sneeze and cough at different times. So I assume I emmit sulfur compounds as well. If anyone has the above symptoms, please share some insights.I am around patients and core-workers. It is hard to ignore the reactions.

Jun 25, 2016, 4:38:00 PM
Anonymous said...

Hello all, I have suffered for many years and it hurts, I pray to God this pill comes to manifestation. If only I could live a normal life. God bless, keep praying because he does answer

Sep 29, 2016, 4:16:00 PM
Annonimous said...
This comment has been removed by the author.
Dec 8, 2017, 4:59:00 AM
Annonimous said...

Can you afford spending $160 per 10 days for DMB pills? Many of such disease sufferers do not work...

Dec 8, 2017, 3:27:00 PM
Annonimous said...

AnnonimousDec 8, 2017, 4:59:00 AM
I emit around the clock mostly fecal smell from my breath. It's horrible. If you can go out and work your problem is not that serious as mine. I have it since my childhood, I am now 50 yo, and still deal with it. I am not working, don't have friends, divorced twice, my children didn't want to stay with me. Telling my problem to the psychiatrist, st one of the sessions he said: "do you know why your husband and children don't want you? It's just because if that." Cruel person!. I am just at home 24 hours a day. I was tested negative for tmau. I am wondering if they found something suitable for tmau sufferers 1: if it will help non-tmau symptoms such as hydrogen sulphide, nitrogen, methane... And if yes, would it be offered to us by gp's or we will have to pay dearly, privately.

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Dec 15, 2017, 7:35:00 AM
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