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MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
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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

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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

Sunday, October 11, 2009

TMAU odor-management protocol - 'British style'

This protocol was shared in the 2009 Thames Festival BO & halitosis meet-up by one of the sufferers to show what has worked for her and others. It’s a list of effective odor management measures derived from the NIH TMAU odor-management protocol, of the article on Trimethylaminuria authored by Drs. Ian Phillips and Elizabeth Shephard, Treatment of Manifestations of the Gene Reviews article on Trimethylaminuria, from discussions in the blog and boards, from the USDA Database for the Choline Content of Common Foods, Release Two (2008), and from a great deal of trial and error adapted to the British cuisine, lifestyle, and supplements/cleansers found in Britain.

Some Low Choline Cooking


Check the USDA choline content and try and stick to about 200 units a day
[NOTE: “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.” This AI is handled well by persons with normal FMO3 levels. Nonetheless, sufferers should consume only as much as tolerated for odor-management while focusing attention on better health. See additional posts in this blog about the important developmental role of choline. Pregnant and lactating women should not decrease their choline intake for proper fetal development.]


*Most importantly:
Look out for the additives - soya lecithin, phosphates, ammonia, pectin, E numbers if you're buying shop bought stuff - also avoid anything with yeast if possible!*



For cooking - dairy stuff, fresh or fried herbs (never garlic or onions!), balsamic vinegar (but some of them have ammonia so check the label) and cheap white vinegar, fresh lemon juice, wine, tinned tomatoes or certain brands of pasta sauce (Lloyd Grossman brand has no additives)

Most “normal” dishes can be adapted by just omitting the onions and garlic. Instead, make sure you use a good coarse salt and pepper along with small amounts of fresh herbs – this can replace the taste.

Use probiotic yoghurt mixed with cream or cream cheese in sauces to replace gravy


Foods:


Staple Ingredients for cooking:


Plain roast chicken, non smoked pork or bacon and pork sausages (cheaper ones are best but check the label)
Dried non wholewheat pasta or white rice
Porridge oats
French bread, pita bread, (check the label for soya), white crusty rolls
Any full fat dairy - butter, cream cheese, mozzarella, fresh cream, sour cream, creme fraiche, tzatzikki (make sure it doesn’t have mayo in it), probiotic yoghurt, olive oil
Pears, berries, citrus fruits
Tomatoes, courgettes, mushrooms, peppers, sweet potatoes, potatoes, lettuce,
Oven chips (but just the ones with potatoes and oil on the label)
Egg whites
Co-op chicken tikka is mild, nan bread (but not with garlic)
Pizza - the cheaper ones have more additives so check the ingredients
Honey, home made jam or marmalade (not shop bought as it contains pectin)


Sweets
Shortbread (certain brands - organic usually doesn’t have soya) and meringues and some organic biscuits - but check the ingredients for soya or ammonia - not Marks and Spencers tho.
Sainsbury’s Taste the Difference Belgian Dark chocolate and Waitrose Bovetti Milk Chocolate!! Jelly Babies - but not the red ones as they have beetroot in them.
Plain crisps or salt and vinegar ones but check the label for additives
Plain tortilla chips
Home made caramel sauce
Rice crispy cakes
Apple pie
Apple or pear crumble
Tablet
Fudge
Flapjacks
Fruit Jelly
Rice pudding
Yoghurt ice or sorbet
Egg free sponge
Yoghurt


Drinks:
Tea
Lemonade (but check the label for phosphates)
Soda water
Fruit juice or smoothies - any with citrus or berries but not apple or banana
Wine
Spirits which are not grain based are ok
Hot chocolate made with milk and melted soya lecithin free chocolate


Some Main Courses


Roast chicken
Roast Pork
Pasta
Rice
Curries - make without using onions or garlic or chillies
Thai Chicken “Curry” – make without using onions or garlic or chillies
Sweet potatoes – mash or wedges
Roasted vegetables
Salads
Pizza
Nachos

Sauces for pasta or rice
Tomatoes and courgettes, mushrooms or peppers
Chicken or turkey or chicken or turkey mince
Tomato passata or juice
Fresh cherry or plum tomatoes with basil

Iskander:
Fry turkey mince until brown
Add the mushrooms, tomatoes and a little tomato juice
Add seasoning
Spoon into a casserole dish and top with Turkish bread and natural yoghurt
Top with fresh herbs
Bake until cooked

Risotto
Blanch cubes of sweet potato
Fry in a spoonful of olive oil and a little butter with fresh parsley and seasoning
Add risotto rice and stir
Add any of the following: chicken, red pepper, courgette
Keep adding stock cooked (and a little white wine) slowly about a cup at a time until it is absorbed and until rice is cooked

Easy Tzatziki
Mix together:
• Half a large tub of Probiotic yoghurt
• Finely chopped fresh mint
• Half a peeled and finely cubed cucumber
(This tastes better the second day as the flavour soaks in


Soups

Homemade stock – this is very versatile and can be used for soups, risottos, stews and can be frozen into smaller portions for later use:

Leftover roast chicken
2 x carrots (unpeeled) – cut into large chunks
Half a red pepper – remove sides and cut into large pieces
Half a lemon cut into large pieces
Fresh parsley
2 x bay leaves
Salt and pepper

Fry the carrots, red pepper and seasoning in butter until brown then add the other ingredients, cover with water and simmer for 1 hour

You can use this stock to make the following soups:

Carrot and coriander
Sweet potato and carrot
Tomato and red pepper


Breakfasts


Full English – but without the egg yolk
Smoothies with probiotic yoghurt
Any fruit – except apples and bananas with pro yoghurt
Porridge oats with milk
Brose – pinhead oatmeal microwaved with water and butter
Egg white omelette or scrambled
Turkey bacon or unsmoked back bacon, tomatoes, mushrooms, egg white fried
Pork sausages (check the brand for soya or beef casings)
French toast – beat and egg white and fry thin slices of crusty white bread


Washing stuff:

Washing powder - either Ecover or Fairy non bio. I also have a garden spray filled with
white vinegar which I spray things with before washing them

Anything with ph balanced on the label and:

Sanex Natur Protect or dove roll on deodorant
Johnson's baby shampoo and their bubble bath - just the ones in the blue or white bottles
Simple conditioner
Dove soap or Nivea
Johnson's or Morrisons own brand Baby Lotion or Simple moisturiser
Some Netrogena products
Hypo-allergenic make up
Imperial Leather do 2 or 3 bubble baths that are ph balanced
L'Oreal Perfect 11 dye - has no amnonia


Medications:


Boots own make Digestive Health Probiotic and Prebiotic tablets (or any strong probiotics -
but not Holland and Barret ones as they contain pectin) along with probiotic drinks - 3/4 a
day but I stop the probiotics when I'm taking the antibiotics (Metronizadole for about a
week every 4/5 weeks) as they cancel each other out

One in the morning and one at night


2 spoonfuls of Lactulose twice a week


Oxytarm from http://www.oxytarm.co.uk/

One in the morning and one at night



Bodymint from:

http://www.victoriahealth.com/

About 3 in the morning and 2 at night

(Bodymint is pure copper chlorophyllin and it's the highest content available in tablet
form. I sometimes alternate it with charcoal tablets but don't take together as apparently
the charcoal stops the CC from working)



Vegetarian Omega 3 With Flaxseed Oil, Multivitamins, 90 capsules from:

http://www.omega4.co.uk/category/vegetarian+omega3.html

One every morning


It's important to keep in mind that some of the people in the meet-up were saying that they have adverse reactions (odor) to foods high in sugar and/or to dairy products, and that choline foods don'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 this year's meet-up was Arun and another medical professional (also a sufferer) who attended, explaining to us that there may be various odor producing sources in sufferers. This diet addresses two of them, dysbiosis (or gut micro-ecology imbalance) and the deficient metabolic enzyme or enzymes. One may also want to see the following keywords 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 smelly toxins to leave your body. Just think how long it took to build them up in your blood and tissue, 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. 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 when attempting any odor-management protocol, and then eventually, you will find that it begins to diminish slowly but surely.

Please do give us some 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 let us know how it works for you.

NOTE: Bear 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.

Genetests.org page on Trimethylaminuria
Rarediseases.info.nih.gov: What treatment is available for trimethylaminuria?

Our thanks goes to the person who has shared this information with us!


María

María de la Torre
Founder and Executive Director

A Public Charity
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maria.delatorre@meboresearch.org
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