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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


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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

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned

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Return cut-off date : passed
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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

Tuesday, August 4, 2009

Three main protocols of TMAU diet

There is some confusion about food issues regarding TMAU and other possible metabolic BO conditions because usually what works for one person may not necessarily work for another. However, it is always best to ‘arm’ ourselves with knowledge about the content of foods, then to try to ‘read’ our respective body to determine what our saturation point is for the various foods with respect to our body’s ability or inability to metabolize them. Unfortunately, without more scientific tests to help us with the process of understanding the physiology of our bodies, we just have to experiment on ourselves using the trial and error method.

...the choline content alone of the foods is not the only factor to consider in a TMAU odor-management effort; instead, the trimethylamine-N-oxide/trimethylamine (TMAO/TMA) content of the foods as well as their inhibiting effects of FMO3 enzyme activity need to be taken into account as well. An attempt is made in this post to shed some light on this question by presenting 3 different points of interest, but in the end, each sufferer will have to ‘test’ their respective saturation levels to determine how much choline and TMAO rich foods can be ingest without the body odors going off the roof. We as sufferers also have a choice as to when and how much we are willing to smell in order to enjoy foods every once in a while and in order to provide the nourishment our bodies need.

Feeling physically ill while smelling: One important thing we do need to keep in mind is that when our bodies do fail to metabolize TMA and the TMA builds up in our blood, we may be in an unhealthy state with a high level of compounds that should not be in our blood, as our bodies will try very hard to clean it out. These compounds makes some of us feel sluggish, sort of ‘hangoverish’ and some may even develop ‘Chronic Fatigue Syndrome,’ anxiety and depression, and possibly other more serious physical and emotional/mental conditions as a result of toxins flowing around our bodies in our blood. Some sufferers have found that as their odor increases, so do their allergies and chemical sensitivities also increase. See post, TMA and Epilepsy, learning disabilities, anxiety, and more, which presents studies of high TMA serum levels triggering seizure activity, increased symptoms of learning disabilities; and it also discuses a case of a small boy with severe seizures linked to a metabolic condition controlled with diet.

Point #1:
“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.”

*(Discussion) For a sufferer with a weak or deficient FMO3 enzyme, or a gut dysbiosis consisting of an overgrowth of TMA-producing bacteria, perhaps taking this recommended level of choline will produce high under-metabolized TMA level in the blood, which would not only produce strong odor, but also may make the person feel sick as described above. Therefore, each person needs to find ways to weigh the options and make the necessary decisions to consume the amount of choline recommended without over-saturating the metabolic enzymes too much, so as not to trigger negative side effects.

Point #2:
The NIH recommended Trimethylaminuria Management Protocol.

Treatment of manifestations recommended by NIH: dietary restriction of: (1) trimethylamine (present in milk obtained from wheat-fed cows) and its precursors including choline (present in eggs, liver, kidney, peas, beans, peanuts, soya products, and brassicas [Brussels sprouts, broccoli, cabbage, cauliflower]), lecithin and lecithin-containing fish oil supplements, (2) trimethylamine N-oxide (present in seafood [fish, cephalopods, and crustaceans]), (3) inhibitors of FMO3 enzyme activity such as indoles (found in brassicas)…

*(Discussion) Note that this recommendation is broken up into three parts.

Part #1: refers to choline being a Trimethylamine precursor in this food group. A precursor is a substance, cell, or cellular component from which another substance, cell, or cellular component is formed. In this case, the choline is the precursor that is broken down by bacteria which then produces trimethylamine. A person with this bacteria producing excessive amounts of TMA may overwhelm a healthy FMO3 metabolic enzyme level. This form of TMAU is referred to Secondary TMAU. In this case, a low choline diet and possibly antibiotic treatment is recommended. See Treatment of Manifestations of the Gene Reviews article on Trimethylaminuria

PART #2: refers to the trimethylamine N-oxide (TMAO)ALREADY PRESENT IN SEAFOOD. This is a different precursor. So in this case, we are more concerned with the actual TMAO content of the food as well as the choline content.

In a Google book, Advances in Fish Processing Technology, by D.P. Sen 2005 (pg 240, #6.4.2 Trimethylamine) it states,

Trimethylamine (TMA) is a most known compound to indicate freshness quality and degree of spoilage of marine fish. TMA is associated with “fishy” odour and with the odour of fish spoilage and is clearly a part of the spoilage pattern of many fish species; odour goes, more or less, hand in hand with TMA concentration…

TMA is formed from trimethylamine oxide (TMAO) [in fish] which is an osmoregulatory and buffering compound found in many marine teleosts, elasmobranchs and shellfish…

Small amount of TMA may be produced by the endogenous enzymes* of fish. But main degradation of TMAO to TMA is due to enzymes of psychrotrophic bacteria particularly Achromobacter that invade the fish after death…

*Definition of endogenous enzymes: Developing or originating within the organisms or arising from causes within the organisms.

PART #3: refers to foods that act as inhibitors of FMO3 enzyme activity. This concern is independent of the choline content or TMAO content of the food, because this food group actually inhibits FMO3 enzyme activity, which can be very detrimental to someone who has a weakness or deficiency of this enzyme. It is most detrimental to Primary TMAU, which is a genetic metabolic disorder inherited in an autosomal recessive manner. This type of TMAU, is determined by DNA mutation analysis of the FMO3 gene indicating a deficiency in the FMO3 metabolic enzyme produced in the liver. This deficiency of FMO3 enzyme results in an inefficient FMO3 function with a failure to metabolize (add an oxygen molecule)to the chemical Trimethylamine(TMA), which smells of rotting fish, as well as other compounds that contain nitrogen, sulfur or phosphorous. Symptoms are usually present from birth and may worsen during puberty. In females, symptoms are more severe just before and during menstruation, after taking oral contraceptives, and around the time of menopause. This condition benefits from reduction in all three diets, low choline, low TMAO/TMA-rich foods, and low consumption of inhibitors of FMO3 enzyme activity, such as indoles (found in brassicas)…

IN SUM, It is important that we understand how these three food groups differ and how the choline content of the foods alone is not the only factor to consider in a TMAU odor-management effort; instead, the TMAO/TMA content of the foods and their inhibiting effects of FMO3 enzyme activity need to be taken into account as well.

Translated into Spanish
by Natalia

María de la Torre
Founder and Executive Director

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Anonymous said...

Thanks for such an informative article. I've been struggling with TMAU for years and have found a direct co-relation to the level of stress in my life to the intensity of the odour. I've found that the only deodorant that works half decently for me is Dr. Mist. Definitely worth trying. Good luck everyone and don't give up.

Jan 1, 2010, 1:04:00 AM
Anonymous said...

I've read many articles and this has been the most informative and beneficial to date. I have the primary form of this illness. The build up of these compounds has left me with all of the emotional and physical symptom. Before reading this article I had no idea why I feel this way. You have helped me to continue with a life so difficult to accept. I am 52 years old not knowing what it's like to be in a relationship but it teaches you tolerance and.hope.

Jan 18, 2012, 1:21:00 PM
Maria de la Torre said...

Hi anonymous,

I am so very sorry that you have had to struggle so much through your life. And yet you still have hope! That’s right, your life is still ahead of you, as it is for me – I’m only 5 years older than you. Slowly but surely we go learning more and more about how to control this condition and to have greater control over our own lives and our destiny. Hang in there, together we can move mountains!

Jan 18, 2012, 5:02:00 PM
Anonymous said...

Lord Jesus I pray for all of us who has sufferered with this foul demonic disease. God has a divine purpose for us and satan seeks to stop and destroy us. This is our Season of breakthru. Lord I pray that you lay your hands on us right now and set us free. Let us digest proteins, choline, sulfer, etc. Jesus came to heal all of our diseases. Show us how to live our lives to the fullest and make us whole for Your Glory!!! Amen Amen and Amen. Avengerluv

Jan 29, 2012, 9:01:00 PM
Anonymous said...

I just found out I may have TMUA and I'm horrified

Jul 19, 2012, 7:10:00 AM
Anonymous said...

Has anyone had TMAU testing done through MeBo Research? They seem to be the least expensive, but I'm hoping they are not the slowest to get your results to you. I only discovered this disorder yesterday, and of course have no patience and want a diagnosis ASAP in order to start changing my diet and lifestyle. I guess I'd also like to put a name to the disorder, and reinforce that it's not my fault or anything to be ashamed of. Logically I know that, but emotionally this condition has been utterly devastating. Has anyone discovered any products that are really effective at reducing odor? I just read about low pH soaps and creams - wondered if they worked.

Dec 4, 2012, 1:57:00 PM
Maria de la Torre said...

Hi Anonymous,

Thank you so much for raising this question, anonymous, because I had not realized that some sufferers were under the impression that MEBO’s program was taking longer than usual to get results back. I will write a post in this blog explaining how successful the MEBO program has been so far, and that compared to other programs, the wait time is not that much different. I think it is something that needs to be discussed, so that people can make an informed decision on which testing opportunity will work best for them.

Yes, MEBO’s TMAU Test Program with the Cleveland Clinic currently will cost each person less than $200 including shipping to any part of the US, and shipping cost is usually higher to other countries. This rate is based on the current fuel costs that UPS passes down to us as well as the negotiated rates we have with UPS. Once payment is made to MEBO, there will be not additional charges for kits, shipping, Customs fees, etc. You don’t have to ship your sample on dry ice or any other type of ice, with the initial shipping charges. The return shipping label and Customs documentation, as needed, is sent to you by MEBO, so that you only have to place your samples in the box/Pak enclosed and ship it without any additional cost or concerns about setting up shipping labels.

Normally, the test process lasts 2 to 3 months, from the time the sample is sent to MEBO to the time MEBO emails the Results Report to show one’s doctor. This wait-time estimation is based on the past 6 months of testing involving 94 tests purchased. Any test trial runs done before June 2012, cannot be considered because it is not the program being offered, but rather the developmental stages of the program. We are currently working on Batch #4, and began Batch #1 in June 2012. However, if a sufferer finds a program that would give them results faster, while costing them over $100 to $150 or more than MEBO’s rate, and the sufferer believes that perhaps getting the results a few weeks earlier will make that much difference for the price, then by all means, they should go for it. Each person is the best judge of what he or she needs.

NOTE: I have received 2 additional Requisition Forms and one purchase after this report was written, so it is not completely updated.

All TMAU test programs using the instruments, such as Gas Chromatography, Liquid Chromatography, Mass Spectrometry, and Nuclear Magnetic Resonance (NMR) instruments, discussed in Dr. Richard Mackay’s webinar this past Sunday, December 2nd, are equally as accurate, as he pointed out in his powerpoint presentation.

Based on what we’ve seen these past three months, it may take 8 to 12 weeks to receive your results depending on the time I begin collecting 20 samples for your batch. This month is the Christmas and New Years holiday, so people might not be purchasing kits when spending money on their holidays. Having said that, MEBO has received 6 Requisition Forms and payment for 2 kits, in only the first 4 days of December. The more we get, the faster we ship batches to the lab, and the faster the results come back.

Dec 4, 2012, 3:03:00 PM
Anonymous said...

I am 62 yrs old and have lived with the negative consequences of TMAU since I was 13 yrs old. I understand having few or no close relationships, depression, and ugly remarks from people. I work and still hear "remarks for me to overhear". Socially, some people are still outright rude when they tell me I smell like rotten vegetables, urine, and/or other unpleasant odors. What I have learned, is when I share my condition with family and friends I discover who my real compassionate family members and friends are. They see me for the good things I am. I've also learned that those who care about the fact I have a biological disorder don't matter, and those who don't care matter the most to me. I believe my disorder has made me a much more compassionate person able to tolerate others' shortcomings. It wasn't until I was much older (probably because social pressure doesn't matter as much)that I learned to accept myself as I am. I then moved on. I quit thinking EVERYONE didn't want to be around me and/or were making fun of me behind my back. This led me to be more relaxed and my personality came through the "odor". Good counselling and a few good friends who love you for who you made me realize I could live a happy and full life. Just my two cents. Hang in there!

Apr 6, 2014, 12:00:00 PM
Maria de la Torre said...

62yr old anonymous, you have cultivated great wisdom through the years of living with this disorder. I take my hat off to you. Your words are refreshingly uplifting. Thank you!

Apr 6, 2014, 5:15:00 PM
Anonymous said...

Hi Ms. Maria, I would love to receive more information about this disorder. I believe I may suffer from TMAU for several reasons after reading many articles about this imbalance. I suffer from allergies as well as chemical sensitivity, digestive issue, severe acid reflux, sinuses that causes my breathe to smell awful, I've been under more than the usual stress in the last 14 months and I'm 36 119lb with an underweight IBM. I really would appreciate if you could provide me with information to where I can receive proper treatment, help and support. I am always questioning my cleanliness and it's driving me crazy. I have a lot of confidence and trust in my Heavenly Father Jehovah that soon the former things will be a thing of the past. He makes a way for us to cope with the adversities we face and that may always be with us until this system ends so I trust him fully in this aspect. By means of Christ Jesus, I am very grateful and thankful to him that I was directed to this page and many others. Now, I don't feel so discouraged or mentally drained.

Sep 22, 2015, 9:38:00 PM
Anonymous said...

Wow many thanks for the useful information. I've been a TMAU sufferer for years now, and am trying you manage to live with it now. What I've found useful recently is the use of lime to scrub my body when bathing, this is in addition to a low choline diet and the use of vitamin B2 riboflavin. I'm not in support of taking too any supplements, I prefer the use of herbs instead. I usually drink fresh parsley with green tea twice a day. Sometimes just the fresh parsley in boiled water and drink it as tea. This has greatly help thank God! Prior to this I've been deeply miserable.

Dec 7, 2015, 10:39:00 AM
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