TMAU

[Ruben]

True.. and until I found this site nearly a year ago now, I had "compartmentized" my BB (if u know what I mean), in other words I'd just moulded my life so well around my problem that I could live with it. Infact, as far as people were mostly concerned I was even GAY, but I was just so numb it was so irrelevant like most things in my life had become..

This is hard to deal with, i'm not gay, but i know some in my family think i am, although i just rather avoid being embarrased. How many girls will go out on a date with Mr. Stinkbreath?

So yes, until I found this site I never knew anyone else like me either. I SWEAR that until I found this site last year, I felt like the only person on the planet who suffers so physically and psychologically because of bad breath - I have still NEVER seen anyone take any of the measures I'd take to hide from it, I was supersensitive to anyone being able to smell me. Holding my breath and grunting my words out etc. Running for dear life at the prospect of having to sit with others in the middle of a back seat of a car - i'd rather be buried alive. Sometimes pretending to go NUTS if I felt a trapped situation was looming..

And that's just meeting people on here, so to meet others in real life would be the most therapeutic ever thing I think.[/quote]

Funniest BB related thing i;'ve read in a while. pretending to go NUTS lol.

about a month or so ago i went to church. I sit at the back always to avoid others. On this particular day, a man an his son came and sat beside me. I didn't say anything and made sure i faced away from them, until it was time to shake hands per Catholic-offering-of-peace protocol. After that the guy started coughing uncontrollably and left, i was so embarrased, and really sad.

[Ruben]

for those of you using ozonators, can someone link to a version thats working for them even if not totally, thanks.

[caramiamine98]

Hi Ruben,

This is the one I have. I like it and have been using it for over a year now. Below is a copy of the instruction manual if you are interested in how it works.

http://therabreath.com/docs/Ozone_Generator.pdf

Cheers, C

[Ruben]

Hi Ruben,

This is the one I have. I like it and have been using it for over a year now. Below is a copy of the instruction manual if you are interested in how it works.

http://therabreath.com/docs/Ozone_Generator.pdf

Cheers, C

Thanks

[caramiamine98]

Information on TMAU testing from the Bloodborne Body Odor and Halitosis website.

International TMAU testing in Canada : Special Group Rates

MEBO Research, Inc. and Eliapharma Analytical Services, Inc. in Laval, Québec, Canada have entered into a joint undertaking creating a low group rate Testing Program initially for TMAU phenotype (urine) test, and eventually for TMAU genotype (genetic testing) and other body odor related tests. The TMAU urine test will be for TMA & TMAO as well as creatinine, and will be done using mass spectroscopy. A physician referral is not needed to be tested. Eliapharma is charging $110 for 2 urine samples test per kit, a $30 fee for the kit, plus a $10 donation for MeBO to invest in its Mission and Strategies as described in MeBO’s website. This $150 cost includes a kit containing 2 glass tubes, two 4mL of 6N HCL, gloves, ice pack, an insulated container, and a box for round trip shipping. In order to be able to provide such a low group rates, it will be necessary for the lab to store the frozen samples and to wait for samples from 30 persons be collected. Each person can collect two samples at different times before shipping them back to the lab.


In an effort to create a “One Stop Shopping” experience for those members of our international community to be able to test comfortably, MEBO Research is having negotiations with FedEx, and initially with the Canadian and US Customs Agencies to arrange low roundtrip shipping rates of the kit to the person testing with a return shipping label, International Airway Bill, and Commercial Invoice. This will allow the person testing to not have to deal with these concerns. These negotiated international shipping rates, which are normally costly (precisely because the samples need to be shipped to arrive within 2 day) are yet to be determined. The shipping rate will be based on MeBO’s earned discounts (bulk rates). After this initial shipping phase is established between and within Canada and the United States, MeBO will then proceed to begin consulting with Customs Agencies of other countries, one country at a time in an effort to expand this service to all countries around the world that would have at least one sufferer wishing to test. FedEx assures us that they can offer 48 hour shipments from anywhere in the world. This may not apply to some very remote areas, thus instead of door-to-door service, some countries may allow to hold for pick-up at a FedEx Office, or airport to airport service.

Since shipment of samples from countries that are at a greater distance from Canada than the US may be more costly, it is MeBO’s intentions to pursue grants that would further assist us in providing free testing opportunities in the name of research. Anyone wishing to test is invited to participate in an OPTIONAL and VOLUNTARY confidential survey so that we may acquire data in an effort to establish a platform for research. These efforts are very much geared toward our primary goal – to research into all types of body odor conditions of persons with a positive and a negative TMAU test result.


The following highlights the benefits to this program:

1. A doctor’s referral is not necessary since we are collecting data for future research.

2. Two vials of urine specimen per kit, which may be collected on different days, per person for $150 plus shipping.

3. The speed of receiving test results depends on how quickly 30 persons submit their samples.

4. The more people test, the lower the shipping cost.

5. Confidential test records will be used to pursue research grants from international private and government agencies.

6. Those persons who test will be the first to be invited to participate in grant-funded studies, providing additional testing free of charge. This will be on first come first served basis based of date tested.

7. This program’s primary aim is to systematically provide testing as affordably as possible to all sufferers throughout the world, most of whom currently do not have any testing opportunities whatsoever.


Once the phenotype testing is underway, MeBO and Eliapharma intend to add genotype testing as well, hopefully, also with a good bulk rate, depending on the volume of phenotype (urine) tests already performed. We hope to progressively add other Body Odor related tests to our list of tests, so as to offer all sufferers from around the world a worthwhile, low cost “One Stop Shopping” to help each of us arrive at a proper diagnosis of each and all body odor conditions.

Anyone interested in participating in this program may email [email protected] to place yourself on the waiting list with no obligation. As soon as the shipping costs are established, it will be announced in this blog and MeBO’s website, and we will get back to you when the testing process is initiated. Eliapharma have guaranteed that they will have the test-process set up within 3 weeks of the 30 kits being returned to them. As soon as arrangements are made with the Canadian and US Customs Agencies, we will contact another Customs Agency of whichever government sufferers asks us to consult. It will be on a first-come first-serve basis. So no matter what country you are in, if you wish to test, please send an email to [email protected] with no obligation to participate. PLEASE NOTE WHAT COUNTRY YOU'RE IN ON THE EMAIL. Once we receive the negotiated shipping rate information from FedEx, we will contact you.


María de la Torre
President and Executive Director

[email protected]

http://www.bloodbornebodyodorandhalitos ... anada.html

Further information and updates:

Tuesday October 5, 2010
http://www.bloodbornebodyodorandhalitos ... rough.html

Monday October 11, 2010
http://www.bloodbornebodyodorandhalitos ... -mebo.html

Wednesday October 20, 2010
http://www.bloodbornebodyodorandhalitos ... pdate.html

[caramiamine98]

I can’t remember where I found this but it may be of interest to anyone following or attempting to follow a low choline diet.

Beginners Diet Help for Trimethylaminuria

1) 4-5 oz of meat per day: That could be ONE serving about the size of your fist or a deck of cards. Egg whites do not count and can be eaten or used in baking without counting them as a meat just no egg yolk. (No or very limited Beef or red meat as you get choline and carnitine. Nothing from the ocean, no liver or organ meats).

2) 4-5 servings of fruit and vegetables: Avoid the Cruciferous vegetables, also called Brassica or Indole Vegetables: Arugula, Broccoli, Cauliflower, Brussels Sprouts, Cabbage, Watercress, Bok Choy, Turnip Greens, Mustard Greens, and Collard Greens, Mizuna, Tatsoi, Rutabaga, Napa or Chinese Cabbage, Daikon, Horseradish, Radishes, Turnips, Kohlrabi, and Kale.

3) 5-6 servings bread: Serving is about 1/2 cup. This can be white rice, pasta (no egg), processed cereal, crackers, 3 graham crackers, Pancakes or waffle without egg, 1 slice toast, potato, 1 pop tart, ½ English muffin, Flat breads would be the best. (Avoid whole grains, bran, nuts or legumes).

4) 1-2 servings of dairy foods: This is about a ½ cup size serving (two servings may be too much so consult MD or Nutritionist).

5) Adequate amounts of low-choline fats and oils: The best would be olive oil based. Limit soy as it contains lecithin but avoid Canola as it is made from rapeseed which is an Indole. ½ cup Potato chips or fries may be included here or breads?

6) One dessert food each day: Use the guide above or save this one for later in the diet planning.

This is based on the study below but should be done with a MD or Nutritionist’s guidance. Supplementations may be advised so talk with your MD regarding extra Folic Acid, B2, Probiotics, Calcium, Vitamins, etc.

Study: Choline- and Betaine-Defined Diets for Use in Clinical Research and for the Management of Trimethylaminuria 2004

Written by STEVEN H. ZEISEL, MD and others who did the USDA Choline chart 2004

1)"A more moderate level of restriction, such as 200 to 300 mg choline per day, would provide much more variety in the diet and would include foods from all food groups. For example, a diet at the moderate level of choline may include 4 to 5 oz of meat, four to five servings of fruits and vegetables, five to six servings of bread, one to two servings of dairy foods, adequate amounts of low-choline fats and oils, and one dessert food each day."

Abstract: http://www.ncbi.nlm.nih.gov/pubmed/15565078

Information from the UDSA National Nutrition Database on the Total (mg) Choline Content of Selected Foods per Common Measure.

http://www.ars.usda.gov/SP2UserFiles/Pl ... 22w421.pdf

[malory]

Thanks for this low choline diet ,link Caramiamine.
It's important that TMAU sufferers know the risks of the treatment protocol they are provided with. I recently followed a low choline diet for 2 months and have now altered it because I felt so ill and weak. My immune system was weakened and I had dizzy spells/faintness.

For anyone who is on a low choline diet:

Lymphocyte gene expression in subjects fed a low-choline diet differs between those who develop organ dysfunction and those who do not2

Mihai D Niculescu, Kerry-Ann da Costa, Leslie M Fischer, and Steven H Zeisel
Department of Nutrition, School of Public Health and School of Medicine (MDN, K-AdC, LMF, and SHZ), and the Nutrition Research Institute (SHZ), University of North Carolina at Chapel Hill, Chapel Hill, NC.
Reprints not available. Address correspondence to SH Zeisel, Nutrition Research Institute, School of Public Health and School of Medicine, University of North Carolina at Chapel Hill, CB# 7461, Chapel Hill, NC 27599−7461. E-mail: [email protected].

Abstract

Some humans fed a low-choline diet develop hepatosteatosis, liver and muscle damage, and lymphocyte apoptosis. The risk of developing such organ dysfunction is increased by the presence of single-nucleotide polymorphisms (SNPs) in genes involved in folate and choline metabolism.


To read the rest of the article see:
http://www.pubmedcentral.nih.gov/articl ... d=17616785

Like Halitosisiux (who was wondering about the possibility of neutralizing the TMA), I am also shocked that nothing more can be done to treat this condition. Apparently FMO3 enzyme replacement therapy is extremely expensive and by no means guaranteed to achieve good results.

From what I have read on the TMAU website, it seems that a lot of people are harming themselves by trying to eliminate choline in their diet. Also, some people are taking repeated courses of antibiotics which further disrupts the balance of gut flora and causes leaky gut and candida overgrowth. I think the treatment protocol for TMAU is inadequate to say the least, although I am glad it works for some people.

What is more shocking is that no research is currently being undertaken in this area in the UK. The (DIAGNOSED) cases of TMAU are small so the medical profession is able to ignore us quite easily. My reasoning is this: people should get tested asap if they have suffered from chronic halitosis and investigated most potential causes unsuccessfully (UK testing is free). If negative, it will at least eliminate another possible cause and stop you wasting time and money doing the wrong thing. If positive, it will contribute to giving a more accurate indication of how many people actually have the condition. I think we should then push to publicise and, therefore de-stigmatise, the condition of TMAU and halitosis generally. Non-halitosis sufferers and GPs are stilll ignorant!

I had several years of being told I was halitophobic by doctors. Now, finally that I have been diagnosed, the best the medical profession can offer me is a list of expensive supplements which I must fund myself, a cocktail of antibiotics which I have tried before without success and a diet which offers little nutritional benefit.

Given the inadequacy of the treatment prootcol, I would like to pressurise the medical research council into taking the condition more seriously and investigating potential cures more thoroughly.

I aim to write to the medical research council and then some... If you are TMAU positive and interested in sending a testimonial, please contact me so that I can collate all of our experiences and send them off.

In the meantime, for inspiration, read Victoria Hislop's historical novel about leprosy, 'The Island,' which shows how cures CAN be found when people really want to search for them.

[halitosisux]

Nice post malory.
Have you been diagnosed with primary/genetic TMAU? Did you have the gene test?
Do you share any common BB symptoms, such as bad smelling tongue/saliva? Do you get tonsils stones or bad tonsil odours? PND, etc

[malory]

I asked Dr Lachmann about the gene test but he said it wasn't necessary as it wouldn't change anythingso, no, I have only had the urine tests.

My symptoms are almost exclusively bb (not much body odour) and the tongue sometimes smells fecal. I have excessive PND and coated tongue, very pale. Even if the tongue smells really clean and fresh, the breath is still fecal/rotten eggish.

There are a couple of charities (NORD and ATF) trying to raise funds (and awareness) for TMAU and MEBO research. In Australia, the ATF website mention a doctor called John Christodoulou who is eager to do research in this area but can't because there's no money for it.

If we can get more publicity and more funding for research into conditions causing odour problems, then, maybe one day int the future, we may be able to change things

[halitosisux]

Thanks for your reply malory.
Your symptoms sound very typical of what the majority of people on this forum describe.

BTW, I couldn't figure out what MEBO meant, so I did a google search and found this site:-
http://www.meboresearch.org/
Has some nice info on there.

[caramiamine98]

Malory, I posted that study about low choline diets as a warning not to attempt a diet that is too low in choline. The test subjects were fed a diet of less than 50 mg of choline a day and some but not all developed organ dysfunction (hepatosteatosis, liver and muscle damage, and lymphocyte apoptosis). All the test subjects in that study had their symptoms reversed with additional choline. I sincerely hope that nobody is attempting a no choline diet as that would not only be practically impossible (choline is present in many foods) but not exactly healthy either. Choline is still an essential dietary nutrient and needs to be included in the diet. The TMAU diet sheet from the UCL recommends between 250 mg to 450 mg of choline per day. Other sources have suggested a daily intake of between 200 mg to 300 mg of choline. It all depends on the individual. Is it possible to book an appointment with one of the metabolic dietitians at the UCL (or any other dietitian/nutritionalist for that matter) if you are having troubles with the diet?

[malory]

Hi caramiamine,
I am delighted that you posted the low choline diet info.
The diet made no improvement to my condition unfortunately,(although I know it works for some) and I have no intention of becoming ill as well as stinky. UCL dieticians are less informed than other dieticians and naturopaths I have met over the years and I am rather cynical about trusting any advice given to us by the medical profession.

I am trying to urge people - TMAU people particularly - to write down their experiences so that I can collate them and send them off (medical research council etc...) to increase public awareness and demand research into what is a devastating, but misunderstood, medical condition.

Send me a private message if/when you would like to contribute your experiences/letter to the collection. I have been underwhelmed by the responses on TMAU.org.uk. Even if you haven't been tested yet, your experiences are valuable. Make yourselves heard!

[caramiamine98]

If anyone is interested to see if TMAU is potentially their issue they could try taking choline supplements to see the effects on themselves. Choline supplements aren’t expensive and if your smell worsens while taking them TMAU may be a possibility and if the smell doesn’t worsen they won’t hurt you as choline is an essential dietary nutrient. This is, of course is in no way, shape or form meant as a substitute for getting tested through a doctor but could be a starting point for some. It’s worth noting that only 10% of those diagnosed with TMAU have a fish like odour. The other odours associated with TMAU include rotting garbage, burning rubber, fecal, ammonia-like, sulphur and chemical type smells. It is also possible to have TMAU and have BB but not BO (most likely secondary not primary TMAU).

[halitosisux]

Apparently, if a person who normally does not have a problem with TMAU (or any other type of odour problem) eats enough eggs they can end up overwhelming their bloodstream with TMA and start to give off odours associated with TMAU. Taking choline tablets is a great idea because nobody with any kind of BB wants to be eating any eggs at all. If odours clearly worsen on a high choline intake then the significance goes without saying.

[caramiamine98]

Yes, it’s true that ANYONE can induce TMAU like odours in themselves if they ingest high enough amounts of choline. The average North American diet contains anywhere from 500 mg to 1000 mg of choline daily so taking amounts significantly higher than that (6000 mg or more) may produce an odour and may skew any potential results. So, if anyone wants to try this mini very nonscientific experiment make sure you don’t take the whole bottle of choline pills at once Anybody with TMAU will probably start to smell worse after just one pill.