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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info:
MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

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MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

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BO Sufferers Podcasts



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

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
NORD Member Organization
See RareConnect 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

Saturday, September 20, 2008

Odor-reducing management protocol PART II

Q & A follow-up to odor-reducing, management protocol from meet-up post

1. What’s considered too low enough of a choline count for people like us? USDA Database for Choline Content of Common Foods, 2nd Edition (JAN 2008), ,

“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.”

As stated in the conclusion of the pubmed paper entitled Choline- and betaine-defined diets for use in clinical research and for the management of trimethylaminuria,

We developed several research diets with defined choline and betaine content. These diets were well accepted by human volunteers and compliance was excellent. The 550-mg choline diet should deliver the recommended adequate intake of choline for humans. The choline-deficient diet described should deplete humans of choline and choline-related compounds in tissues. Because of the potential risk of physiological imbalance, these very-low-choline diets should be used in a clinical research setting for the investigation of questions related to methyl-group metabolism and not as therapeutic diets.
2. What’s the name of the probiotics your son is using? The brand name he uses id Jarrow Formulas, Enhanced Probiotic System (EPS), Jarro-Dophilus. They are enteric coated vegetarian Capsules that contain 8 species, including Bifidobacteria longum BB536. Even though it claims to be Room Temperature Stable and no refrigeration required, I make sure that my Health Food Store has kept it in their refrigerator, and I keep it in my refrigerator.

I posted in my blog a research I did in the FIU library on probiotics where it explains the 'die off rate for probiotics' and how it is highly recommended to keep it refrigerated as long as possible to try to keep the living organisms alive. I would call around to all the local Health Food stores or your local pharmacy to see which ones have it refrigerated. Many do so because they are aware of the bacteria die-off problem with probiotics.

The article ends with a final note: "...there is a chance that you will precipitate a die-off of bad bacteria in your intestinal tract. This can lead to gas, stomach rumblings and cramping for up to three weeks." So if you feel any of these symptoms originally, keep taking them until the die off process ends (not more than 3 weeks). Just keep in mind that it is the healing process. Then it should all go to a healthier state. My son was finally able to wear a belt afterwards when he had not been able to do that as far back as he could remember because his lower abdomen was always so bloated and painful.

Here are some more posts on probiotics/prebiotics in this blog Scroll down and click on "Older Posts" to see them all.

3. Do I start taking the probiotics, and the Vitamin B2-Riboflavin along with the neomycin or do I wait until I finish taking the neomycin? Neither of these would hurt you, and would probably help you. However, it is recommended that you begin taking probiotics after completing the course of antibiotics to replace the gut microflora with "friendly bacteria." You might want to take higher doses of probiotics at first and then taper down in time (based on the dosage recommended on the box). My son now takes one a day of each along with one pill of folic acid as well.

4. I'm concerned that while I'm "detoxing" I may smell really bad at work. What are your feelings on this? My son did smell worse during the initial stages of detox. He started doing it right after graduation before going to job interviews. It took about a few weeks to a month for the odor to significantly decrease. I don't know if you have vacation time or sick leave. I can't guarantee how your body will react. I feel pretty certain that he cleansing will help, but I don't know if your problem is choline/protein related or not. You will know for sure once you see if this diet helps you or not. Keep in mind that once this protocol/diet reduces your odor significantly, then you would not be able to accurately be tested for TMAU with a urine test. You would have effectively eliminated the high dosage of TMA from your urine, so it may give a false negative. I've attached info for you with this email regarding the choline content of foods. I don't remember if I had already given it to you.

5. I have tried taking charcoal and Riboflavin in the past and they seem to make the odor worse. Could it be that it's because I didn't cleanse [with a laxative] first? That's right. My son had done the same, he did only a few things at a time with no positive results. It wasn't until he did it word, for word, step by step, beginning with the gut cleansing, that it began to worked for him. Also, my friend did it word for word and step by step, and she has no odor now. Her house also has no odor. However, if she breaks her diet, it comes right back, just like in the case of my son. The good thing about it is that since their bodies were clear of TMA and any other unmetabolized compound that comes from protein when they break their diet, it would take a week or 2 to clear it up again when my son breaks his diet with an overdose of choline/protein.

Remember THAT IT IS VERY IMPORTANT THAT YOU DO HAVE SOME PROTEIN DAILY. You can increase your betaine intake while decreasing your choline intake as suggested by Dr. Zeisel et al, in their article, Choline- and betaine-defined diets for use in clinical research and for the management of trimethylaminuria Choline- and betaine-defined diets for use in clinical research and for the management of trimethylaminuria. You can have moderate amounts of chicken or turkey, and do have egg white omelettes, but only every once in a while. Egg whites have sulfur, which may also produce odor if you may also have a deficiency in the sulfur metabolic cycle. If you have too little choline, it begins to affect your nervous system, your hair may begin to fall out, and your nails too soft.

Translated into Spanish
by Natalia


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