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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
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MEBO TMAU TESTING DISCONTINUED
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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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TMAU UK end total:262
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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
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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

Tuesday, August 31, 2010

Cross-Over Reactions : Possible cause of TMAU2?

INVITATION TO PARTICIPATE IN AN INFORMAL STUDY
On Cross-over Reactions

Between Fructose Malabsorption and high choline foods ingestion
With resulting Secondary Trimethylaminuria

Disclosure: This is a data-gathering preliminary measure
to present to experts to promote research.

Hi Everyone,,

But when I have no sugars that I can’t metabolize in my system, my odor goes completely away and I can eat fish, seafood and egg yolks with no bad reactions whatsoever.
Some of you may remember me from the old support group web site. For the last 2 years or so, I have been researching and experimenting and have come upon a possible cause of TMAU2. I think it was in January ’09 that I posted a message about Fructose Malabsorption as a possible cause. That was true, but it turns out it was only PART of the equation. Fructose and fructose-type sugars are metabolized by a liver enzyme called Aldolase B. It turns out there are other sugars also metabolized by the Aldolase liver enzymes. When we think of sugar we think sweet - but that’s not always the case. There is a type of sugar in red meats and milk called Sialic Acid, and the monosaccharide sugars are also metabolized by the Aldolase liver enzymes.

I was doing great on the low-sugars diet and then started taking a new medication for an ulcer called Sucralfate IS. After about a week, the odor flared up and it took me another week to start suspecting the medication. I called the pharmacy to see if the ingredients contained any sugars. The pharmacist at first said no (also there were no high choline ingredients), but then I asked about monosaccharides. She looked it up and discovered that Sucralfate is a monosaccharide sugar, hence the bad reaction.

But also there is what I call a cross-over reaction with TMAU. What that means is,

Those of us who cannot metabolize these sugars have an odorous reaction, but when we eat very high choline foods like egg yolks and fish, then the odor flares up 10 times worse! But when I have no sugars that I can’t metabolize in my system, my odor goes completely away and I can eat fish, seafood and egg yolks with no bad reactions whatsoever. There is obviously a connection and I have a theory why, but that will have to be researched biomolecularly.

[Cross-over reaction definition by an online medical dictionary: A reaction that occurs in blood testing when a disease agent reacts to the specific antibody for another disease agent. a reaction which occurs when surface antigenic determinants on different molecules of quite different sources are identical, so that antibody directed against one antigen also reacts with another. Immunology A partial reaction or 'recognition' of an epitope by an antibody generated in response to another antigen]

I’m sure I don’t have all the pieces to this puzzle yet, but may have enough to help those of us with this particular disorder.


Diet for the Study

Below is a diet plan for those of you who want to help with this research and see if this is your problem also. If you do the diet, please post your results.

*WARNING:*If you are diabetic, hypoglycemic or have other medical problems, check with your doctor before starting this diet.*


If you do the diet, please post your results.
For the first 2-3 weeks OR until you get complete odor relief, eat/drink only from the list below:

  • Aspartame sweetener (hard to find pure aspartame - don’t use aspartame mixed with other sugars)
  • Xylitol sweetener (can get at a health food store) Be watchful about how much Xylitol you consume. It has a natural laxative effect, even for people with normal digestive systems.
  • Oats (plain-add your own sweetener, butter)
  • Sugar free breads, tortillas, crackers or wafers (don’t’ overeat wheat products; wheat also contains some fructose)
  • Sugar free cereals like Shredded Wheat (ALWAYS CHECK INGREDIENTS OF PROCESSED FOODS)
  • Pasta (no sauces - just coat with olive oil and salt to taste)
  • Spinach, turnip greens (Brassica rapa L.), mustard greens (Brassica juncea), green beans, wax beans, green and black olives
  • Chicken (no lunch meats or hot dogs)
  • Turkey (also, no lunch meats or hot dogs)
  • Egg whites
  • Butter/margarine in moderation
  • Olive Oil, Canola oil
  • Calcium supplement with vitamin D, like Nature’s Bounty, that is sugar free. This diet is very low in calcium. Also, take a good sugar free multi-vitamin if you can.
  • Citrus fruits are the lowest in sugars of the fruits, so for the sake of nutrition, a small orange, tangerine, ½ grapefruit, lemon or lime no more than once a day would be best.
  • Use non-dairy creamer sparingly
  • Aspartame or Xylitol to sweeten
  • Coffee
  • Tea (No herbal teas at this time; most herbal teas contain fructose)
  • Diet colas
  • Flour
  • Cocoa powder
  • Salt and pepper, but no other spices at this time

After (if) your odor is gone, add these high choline foods: egg yolks, fish, seafood, chicken and turkey livers/gizzards, cauliflower and asparagus.

If you get foods that are processed or canned, make sure they do not contain sugars or “natural flavors” which contain fructose and/or soy. Also, little or no soy. If you get rid of the odor but then have a bad reaction to something, be sure to post your findings. If you must have sugars or are taking a medication that contains one of those sugars, be sure to eat low choline during that time.


***Remember, this is a work in progress.***


Best wishes to all of you!

Lisa M.

NOTICE: Do NOT use Splenda. It is sucralose, [In the European Union, it is also known under the E number (additive code) E955 ], which is a derivative of sucrose, one of the fructose-type sweeteners. Also, be watchful about how much Xylitol you consume. It has a natural laxative effect, even for people with normal digestive systems.

Original Source, Body Odor Support Forum

5 comments:

Mary said...

Thank you for sharing your trial and knowledge. I did not consider the sugar factor. Will update if I have any beneficial outcome to the food
program. Thks.

Sep 6, 2010, 6:05:00 AM
Anonymous said...

This was very interesting to read, as I was suspicious of my odor increasing after ingesting things with sugar. I have tried eliminating most things with sugar. I will follow the diet, although I've eliminated red meat and eat chicken and salmon sparingly. I will keep a diary of when my odor increases after certain foods.

Sep 25, 2012, 8:40:00 PM
SR said...

I have just started the recommended diet and have below queries/concerns:
1. I’m unable to find non-dairy creamer. May I use dairy creamer sparingly for tea or shouldn’t use it at all?
2. If milk has to be avoided totally, the Sugar free breads recommended also contain milk & milk products (at least in India). Is it okay to eat them?
3. The Sugar free breads recommended also contain ingredient as ‘Veg. Edible oil’ (not mentioning which oil) which may be other than Olive Oil or Canola oil as recommended. Is it okay to eat such breads?

Apr 14, 2013, 5:06:00 AM
SR said...

Hi,
I asked 3 queries regarding the recommended diet 2 days ago. I'm still waiting for the reply from MEBO Research. I’m unable to find non-dairy creamer in INDIA.

Please reply ASAP.

Apr 16, 2013, 5:02:00 AM
Maria de la Torre said...

Hi SR,

I’m sorry that I missed your questions with so many comments being posted lately. I am trying to find a way to contact Lisa M, who wrote about this diet. I haven’t corresponded with her for almost the past 3 years. She originally posted about this back in August 28, 2010, in The Body Odor Support Forum, which I believe has been closed down since then, so a great deal of valuable information has been lost as a result. In addition, I believe that all my correspondence with Lisa was as a message on this forum, so I am scrambling to try to find a way to communicate with her now to no avail.

You might want to write a post in the new forum, Breath and Body Odour, http://breathandbodyodour.proboards.com/ that replaced the one that was shut down, to see if Lisa M, who was asking other sufferers to join her in the Cross-Over Reaction diet, is still posting in the new forum.

I wish I could be of more help, but I had no way of knowing that the forum would be suddenly closed. I wish I would have asked Lisa M for her email beforehand, and corresponded with her outside of the forum, but I didn't. Sorry about that.

I am not an authority on this diet,or on the unofficial experiment organized by sufferers, or on the Cross-over Reactions concept, so I wouldn’t dare answer your questions. Perhaps you might find others who might know more about it in the other forums, or if someone would like to comment on this post.

Apr 16, 2013, 8:25:00 PM
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