TMAU Alert

[malory]

I did not expect my TMAU test to be positive because:
I had read about the odour being usually rotten-fish-like and mine is fecal/sewage/rubbish also because my problem is predominantly bb and not really bo.

Be warned. I have had all the symptoms of ENT problems and candida so I spent 13 years trying to resolve these. I was diagnosed with an overgrowth of bad gut bacteria which I tried to resolve but I was still unable to get rid of bb. Despite strong antibiotics to treat parasites (I had blastocystis and dientamoeba for 14 years), raw food diets, non-dairy diets and the like, I could not get rid of bb. I thought I had found the solution with sinus flushes and a non-gluten diet but I had not.

My symptoms have been constant:
PND, coated tongue and excessive catarrh. BB that can disappear but can become horrific and detected from a few metres away in an instant. I have had some bo (but quite manageable) from one armpit only! BB is much worse around menstruation. That's it.

I'm telling you all this because I think everybody should get tested to eliminate this from their search for the bb cause. Make sure you eat loads of choline prior to doing the test. If you are female, try and do the urine test near your menstrual period. If it comes back negative (especially men) don't be convinced you are clear! A woman on the TMAU website got a negative result when she did the test first of all but then repeated it near her menstruation time and it was strongly positive.

I HAVE WASTED LOTS OF TIME AND MONEY SEARCHING IN THE WRONG DIRECTION. I would not like this to happen to anyone on this site. TMAU is incurable but at least you will know what you have and how to deal with it. And you will avoid memorable scenes with specialists like these:

bb malory (distraught): I've got bb and it's really depressing.
GP (gently): Would you like some anti-depressants and we can tackle it that way?
bb malory (resolutely): No. I want to find the cause. I've paid lots of money to have all these food allergy and intolerance tests done but I still haven't found out what's wrong.
GP: (defensively): Nobody asked you to pay money for tests.
bb malory (defiantly): I know but I want to find out what's wrong.
GP (with irritation):I don't think you ever will. It's something you're just going to have to live with.

bb malory (melancholically): I've had bb for several years now.
Gastroenterologist (impatiently): Now who told you that?
bb malory (nervously): People at work show me by how they react and some children have actually told me.
Gastroenterologist (briskly): Look, I work in a hospital and I know what halitosis is. I'm sitting near you and I have the fan on and I can't smell a thing.
bb malory (insistently): I was wondering about the condition of my gut. I had parasites several years ago. I contracted them in South America and they were treated but I was wondering if they could have lain dormant and survived.
Gastrenterologist (confidently): No. They are self-limiting.
bb malory (perplexed): But I thought they could have survived the treatment and be causing an imbalance in my intestines...

A test done at a private lab later revealed high levels of blastocystis and dientamoeba parasites. I'd hosted them for 14 years.

bb malory (bravely, because the specialist is really hot): I have loads of post nasal drip and it makes my breath stink.
ENT specialist (enthusiastically): You're not going to believe this but I think I can help you. Research has shown that people who have the sensation of pnd actually have GERD. If you take these Proton Pump Inhibitors...
bb malory (gratefully): Ok I'll try them. Thanks (for being hot)

PPIs inhibit your stomach acid production which then lowers your stomach's resisitance to infection! I didn't take them.!

Fresh Breath Specialist (brightly): And how do you know you have bb?
bb malory (matter of factly): Reactions from people and also children, especially at work.
Fresh Breath Specialist (confidently): You can't rely on people's reactions. I can't smell you, nor could my assistant.
bb malory (desperately): It's worse after I eat. A test I did showed I had a lot of bad bacteria in the gut...
Fresh Breath Specialist (patronisingly): All bb is made better by eating. You can't get bb from the stomach because once you have swallowed your food the gullet closes off.

I could go on forever but don't YOU. Get tested and eliminate TMAU from your investigation.

[halitosisux]

Hi malory. Fascinating to read your story.

Do you also get tongue odours and what does your saliva generally smell like? Does it vary with your BB or is it constant?

What measures have you tried so far against your TMAU and are they managing to help you much?

[caramiamine98]

Hi Malory, did your BB start around the time of a pregnancy?

[malory]

Halitosisux,
For the past 2 months I have had less tongue odour than I used to have but this does not seem to affect the bb, which, sadly, is still bad despite the diet and supplements. I had horrendous smelling saliva during the summer which was white and sticky but I seem to have got rid of this completely. I don't know if this was gluten-free diet or grapefruit seed extract mouthwashes or Profresh mouthwash.

[malory]

Hi Malory, did your BB start around the time of a pregnancy?

My bb started 15 months after the birth of my first child and one month after receiving some injections for a trip to North Africa.

[TIRED]

WOW malory - I could have written this - my story is identical to yours...the pnd, your experiences with drs and them not smelling anything or taking you seriously, kids validating it, refusing the ppi meds, smelling worse around your periood, everything you wrote I have done. I pretty much know it is TMAU, but I am waiting for my next period to test. Where did you test at? I live near San Diego. There is a place near here that charges $400. I think I will go to them.

So are you on a special diet now? The woman on you tube, Clarise I think, follows the diet and looks anorexic. It's just no way to live especially near the holidays, but if I had the body odor like her I guess i would follow it strictly too.

my bb started after taking birth control pills at age 18. I am now 39. Luckily my husband does not smell it - what a blessing!

Do you happen to have any amalgam (silver) fillings? At one point I thought maybe my fillings caused the tmau. Also, has anyone ever commented that your breath smelled smokey???

Thank you so much for your post!

[malory]

Hi Tired,

I've never had any fillings.

Nobody has ever described my odour as 'smoky' - that is an improvement on mine! It has been described as rotten eggs or rotten food. I also know it is fecal and have actually smelt that myself on occasions. An oral chroma test in Amsterdam showed the dominant gas produced in my mouth as methylmercaptan, although the results were not too high as TMAU is not type 1 (oral origin?) halitosis I suppose.

I've just had a gastroscopy to check for candida in the oesophagus but the gastroenterologist said it all looked normal. This is a relief as the TMAU diet conflicts with the anti-candida diet.

I've started a low choline diet but am unimpressed with the results so far. It will take time to work out which foods are really unsuitable for my body.

I'm in London so, fortunately, I didn't pay for my TMAU test. It was on the NHS. I'm really sorry you have to pay so much for your test! $400 to analyse one urine specimen!

[halitosisux]

Malory, as far as I know, trimethylamine which is carried around in the bloodstream comes out of all the bodily secretions, sweat, vaginal, sperm, including saliva. In very low quantities TMA (trimethylamine) can smell of many different kinds of foulness, even some very bizarre odours - even ammonia.

I can imagine that if TMA is secreted in saliva, then its very likely for the carpet coating of the tongue to take on this odour and directly contribute to type 1 BB. Just because the tongue is home to billions of bacteria, that doesnt mean to say for certain that any excessive odour buildup on there is derived from the bacterial activity on this surface. Its perfectly feasible for the odour to build up there from something like any TMA contained in saliva and in mucus.

Look at the odds too. In purely the genetic cause of TMAU, we have to inherit faulty genes from both our parents to end up with 'genetic' TMAU. We have a 1% chance from each parent of inheriting this faulty gene mutation. The odds of this are quite high - 1 in 100, which for both parents the odds are 100x100=10,000. Therefore 1 in every 10,000 people in the world have the genetic form of TMAU. So, although its rare, it isnt when you think of the statistics. And yet TMAU can occur for reasons other than absense of the particular enzyme that normally exists to breaks down TMA. Anything that disturbs the gut flora can result in the excess production of TMA, enough to overwhelm the body's ability to break it down fast enough. A Diet high in choline can also overwhelm the body with TMA.

[TIRED]

malory - do you get constipated often...I do...I tried fiber, but it made things worse. I decided to try apples and they made it worse at first, but I just kept eating one a day and now I am regular - maybe this will help me be less stinky. I remember when i used to work I ate an apple everyday on my way to work and I wasn't as stinky back then. i never put the two together until now.

[halitosisux]

Bear in mind that eating an apple is regarded as one of the most effective ways to clean your mouth out.

[malory]

I can imagine that if TMA is secreted in saliva, then its very likely for the carpet coating of the tongue to take on this odour and directly contribute to type 1 BB.

This is good in the sense that it means that I haven't been totally wasting my time keeping the mouth so clean and visiting the hygienist regularly. We know excessive mouth/tongue cleaning isn't good for the natural mouth ecology but when I go the dental hygienist next I won't feel it is a waste of money knowing that the process is cleaning away the accursed TMA (even if momentarily!).
However, the dental specialists who insist people like me have type 1 halitosis and need only to use their zinc-based mouthwash to improve it cause us to waste time and money and the whole point of my first post was to say exactly this and to encourage people to get tested for TMAU if they have symptoms like mine.

To reply to TIRED: I have only been doing the TMAU diet 10 days now and I miss the healthy food I used to eat before. I did not get constipated before but now I feel like the stools are incomplete and, to put it frankly, not abundant enough. I have stopped the charcoal tablets for a while.

I am taking Nullo. Also calcium, magnesium, zinc combination. Vitamin C powder and Spatone liquid iron plus Lambert's probiotic plus Riboflavin B2.

I eat (at present - I am still experimenting with the diet):
rice including rice milk, rice cereal and rice crackers, corn pasta, aubergines, iceberg or hearts of romaine lettuce, courgettes, peppers, squash, carrots, beetroots, alfafa, tofu, lacto-free cheese, gluten-free bread, some mozzarella di buffala, some goat's butter, pears, grapes, some potatoes, tortilla chips, figs, dates, occasionally feta cheese (sheep/goat milk), occasionally chick peas or pinto beans. I've stopped eating porridge for now but I will soon reintroduce this. To keep my weight up I eat fried dumplings made with Dove's Farm gluten-free flour.
Flavourings: Bragg's All Natural liquid aminos soy sauce or Tamari soy sauce. Organic bouillon (but contains parsley and turmeric - not good!). Herbamare salt/herb combination.

[caramiamine98]

Hi Malory,

Have you been given the TMAU diet sheet and meal plan from UCL Hospitals? If not, you can view them at http://health.groups.yahoo.com/group/Trimethylaminuria/ under ATTACHMENTS.


If you haven’t already seen them these links are specifically for choline content in food. Both are very good. I like the first one the best because it’s easier to read.

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

http://www.ars.usda.gov/SP2UserFiles/Pl ... holn02.pdf


This link is good too. Although it’s not just for choline content.

http://www.nutritiondata.com/


Both the first link and the preceding one have lots of information on them including recipes and diet tips that you may find helpful.

http://www.tmau.org.uk/

Hope this helps you. Cheers C

[TIRED]

thank you cara for all the info - I was happily surprised to see that wheat bread was low in choline. I read to stay away from wheat.

malory - that diet is way too strict for me - i just couldn't do it. Maybe if i was living alone without all the temptations.

[malory]

Yes thanks Cara for those links. I did actually have the UCL list but I'm not amused. I'm used to eating healthy, nutritious food full of choline!

Anyway, I've been eating this stuff since my diagnosis and I'm still waiting for the light...aint seen nothing yet...

But don't let me put fellow tmaus off doing the diet. Everyone is different - it may work better for somebody else. And you've got to have hope.

[caramiamine98]

Hi Malory,

If you are used to eating a choline rich diet, it may take a while before you see any results. Hopefully you will see results sooner than later. Have you been prescribed any antibiotics or lactulose? Cheers C