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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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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

Wednesday, September 17, 2008

An odor-reducing management protocol for TMAU

When my son and I found the section entitled Treatment of Manifestations of the Gene Reviews article on Trimethylaminuria research funded by the National Institute of Health, he printed it and took it to his physician who prescribed the specific dosages as noted on the outline below. After my son achieved total success in eliminating his odor by following this treatment step by step exactly as prescribed, I began to share it in CureZone with other sufferers in hopes that it would help others as well. Some sufferers told me that it didn’t work for them, but others said that it did help them.

At the London meet-up this weekend, one of the sufferers told me that it had helped her as well. She had also taken that post and consulted with her physician and nutritionist as she began to apply it to herself with great success. So since our blog visitor ‘orange’ asked me to find out about diets that have worked for some sufferers, I’m posting for all to see.

1. RIBOFLAVIN (Vitamin B2) SUPPLEMENTS: 30-40 mg three to five times per day with food ( a low choline diet) to enhance residual FMO3 enzyme activity. THIS MAY POSSIBLY ONLY BE NECESSARY IF YOU HAVE TMAU AND/OR OTHER COMPROMISED METABOLIC ENZYMES. Enhancement of residual FMO3 enzyme activity with Supplements of riboflavin, a precursor of the FAD prosthetic group of FMOs, may help maximize residual FMO3 enzyme activity. For additional info, see http://rarediseases.info.nih.gov/gard/6447/trimethylaminuria/more-about-this-disease)

Always read the lable on all products, especially Vitamin B complexes because I read in some of the bottles that Vitamin B50 that this complex also contains Choline, which is what the lack of the liver enzyme FM03 cannot oxidize resulting in trimethylamine (TMA) in our blood and tissues. TMA smells of fish, and is an extremely volatile odor that seeps through the sweat on your skin, especially in the groin and vaginal area, and in your breath. OK to take Vitamin B2 while taking antibiotics.

2. Sequestering of trimethylamine produced in the gut:
Activated Charcoal, also know as activated carbon : 750mg twice daily for 10 days. Do not take charcoal while taking antibiotics as it could stop the antibiotics from working.
• Copper Chlorophyllin: 60mg three times/day after meals for 3 weeks. OK to take chlorophyllin while taking antibiotics.


Since activated carbon has been used for thousands of years by many societies, I believe the Chinese and other Asian countries have been using it for thousands of years for gas and bloating, it has stood the test of time to significantly minimize odors. It is used in chemical plants specifically to decrease chemical odors and for other reasons to. Europeans have been using it also for many, many years, and I know that my relatives in Cuba and Spain have used it for generations.

Chlorophyll is an ingredient that makes plants green, and they say that green vegetables are good for you. Chlorophyll is also a deodorizer in the intestines, so just the combination of both are very effective at significantly decreasing or eliminating body odor.


3. LAXATIVES, such as LACTULOSE (2 TB once to cleans the gut within 24 to 48 hours. Repeat if total cleansing has not occurred)
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682338.html ,
as needed: decrease intestinal transit time may reduce the amount of trimethylamine produced by bacteria in the gut. Be careful because you don't want to have accidents in the wrong places. Don't overdo it or you may become dehydrated with diarrhea. A simple intestinal cleansing every once in a while helps get rid of the bad bacteria overgrowth.

Lactulose comes in liquid form to take by mouth. It usually is taken once a day for treatment of constipation and three or four times a day for liver disease. Your prescription label tells you how much medicine to take at each dose. Follow the directions on your prescription label carefully, and ask your doctor or pharmacist to explain any part you do not understand. Take lactulose exactly as directed. Do not take more or less of it or take it more often than prescribed by your doctor. To improve the taste of lactulose, mix your dose with one-half glass of water, milk, or fruit juice

You can also use other laxatives, such as rubbing Castor Oil (an over the counter laxative) on your lower abdomen to produce intestinal cleansing. Be careful because you might produce a strong reaction, so make sure you’re near a bathroom. Castor Oil can also be used as a rub-on treatment for muscle tension and sprain. My father-in-law said that in his childhood days, it was used to soften the very tough leather on their baseball catcher’s glove – so it is very potent on the intestines just by rubbing it on the skin.

4. Suppression of intestinal production of trimethylamine: A short course of antibiotics to modulate or reduce the activity of gut microflora, and thus suppress the production of trimethylamine. Such treatment may be useful when dietary restriction needs to be relaxed (e.g., for important social occasions), or when trimethylamine production appears to increase (e.g., during infection, emotional upset, stress, or exercise) Antibiotics recommended for trimethylaminuria to suppress production of trimethylamine by reducing bacteria in the gut:
neomycin(500mg tabs 1 tablet every 8 hours for 7 days) appears to be the most effective against the bacteria in the gut that actually produce TMA from the choline in the food. This kills off most of the remaining microflora after the gut cleansing with lactulose. Another sufferer said that her doctor prescribed it for 30 days. NOTE, that you would need to be replacing your gut microflora with probiotics (the good microflora) after the completing the antibiotics treatment to re-populate the gut with the proper healthy microecology.
metronidazole - alternate antibiotic that is selectively taken up by anaerobic bacteria AND sensitive protozoa,
• amoxicillin - alternate antibiotic

5. PROBIOTICS to be taken after completing the course of antibiotics to replace the gut microflora with “friendly bacteria.” Acidophilus, is found in some milk products, yogurt, and even in pill form. HOWEVER, store in a cool place, because the bacteria dies in warm room temperature, although some manufacturers claim that their product has been prepared to survive room temp. Usually, the pharmacist keep some brands refrigerated. See label 'probiotics' in this blog for more information on probiotics.

6. Using soaps with a moderate pH, between 5.5 and 6.5. Trimethylamine is a strong base (pH 9.8), thus soaps with pH closer to that of normal skin help retain the secreted trimethylamine in a less volatile form that can be removed by washing. See label 'skin pH' in this blog for more information.

7. AND LAST BUT DEFINITELY NOT LEASE, THE LOW CHOLINE DIET:
The U.S. Department of Agriculture, Nutrient Data Laboratory, Agricultural Research Service has posted online the following pdf file, the USDA Database for the Choline Content of Common Foods (table on page 12):

It is the most comprehensive list I've found, although it lacks info of a lot of foods, especially ethnic foods. “In 1998, the Food and Nutrition Board of the Institute of Medicine established dietary recommendations for choline intake, estimating an Adequate Intake (AI) at 550 mg per day for men and 425 mg per day for women.” (page 3)




It's important to keep in mind that some of the people in the meet-up were saying that they had adverse reactions (odor) to foods high in sugar and/or to dairy products, and that choline foods didn't seem to be their particular source of odor. The attached protocol’s diet is choline based, thus inherently addressing protein deficient metabolism as well, so it may not be the answer for everyone.

Another topic of discussion during the meet-up was Arun explaining to us that there may be various odor producing sources in sufferers, and this diet addresses two of them, dysbiosis (or gut micro-ecology imbalance) and deficient metabolic enzyme or enzymes. You might also want to see the following labels on this blog for additional information: dysbiosis, microflora, nutrition, probiotics and prebiotics, skin pH, supplements, and vitamins.

Please be patient, as it takes a couple of months for all the odorous toxins to leave your body. Just think how long it took to build them up in your blood, tissue, and cells, possibly years? Rest assured that your body will try to eliminate them, especially when it detects that you are no longer giving it more and more of the same compounds it cannot metabolize well. In fact, as your body attempts to secrete these volatile compounds through your sweat, breath, urine, vaginal discharge, and feces, you may be even smellier at first, as the cleansing process tends to go on overdrive; eventually, you will find that it begins to diminish slowly but surely.

Please give us feedback after a month or two letting us know how it went for you, but please do so only if you did follow this protocol very strictly. If not, then you would only be confusing the results. I hope some of you try it, and then let us know how it works for you.


NOTE: Keep in mind that you have to stick to the treatment for a while before you see results because it takes time to get all the volatile compounds out of your system.

See translation into Spanish
by Natalia

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