Anyone ever been tested for TMAU?

halitosisux · Post by **halitosisux** » Sun Sep 26, 2010 9:45 am

Around 1993 when I was desperately trying to find answers, I read about some TMAU research in the UK. I wrote to them with all my details and they wrote back telling me that from my information its very unlikely that I have TMAU. So I left it at that.

I'm curious to know whether anyone on here has been tested for TMAU. If not, has anyone ever tried following a TMAU odour reduction diet to see whether it has any effect? This involves a number of measures apart from refraining from certain foods, such as ingesting charcoal and from time to time using antibiotics like metronidazole to reduce the numbers of bacteria in the gut.

I dont think anyone on here has full-blown TMAU, because the symptoms of that would generally lead to obvious diagnosis. But there are forms of TMAU that dont resemble full-blown TMAU, and there could be people on here in that category who perhaps dont realise it.

halitosisux · Post by **halitosisux** » Mon Sep 27, 2010 7:10 pm

Well, so much for that question.

caramiamine98 · Post by **caramiamine98** » Tue Sep 28, 2010 3:46 am

I know of 5 people on this forum that have been tested for TMAU. 4 were negative and 1 never posted their results.

As for the TMAU protocols (besides myself) I know of at least 3 people here that tried them with varying degrees of success.

halitosisux · Post by **halitosisux** » Tue Sep 28, 2010 6:31 am

Hey C thanx for your reply. Do you know if there are any forums for TMAU sufferers? I would like to get some information from real sufferers.

caramiamine98 · Post by **caramiamine98** » Tue Sep 28, 2010 6:43 am

http://www.bloodbornebodyodorandhalitosis.com/

http://health.groups.yahoo.com/group/Trimethylaminuria/

http://www.bodyodorsupport.com/index.php

http://www.tmau.org.uk/index.php?option ... &Itemid=54

http://www.curezone.com/forums/f.asp?f=441

http://www.clinicalconnection.com/forum ... y.php?f=69

http://health.groups.yahoo.com/group/TMAUcure/messages

TIRED · Post by **TIRED** » Tue Sep 28, 2010 9:36 am

I have always thought that I have TMAU. I get less reactions when I stay away from fish, eggs, nuts and soy. Also, close friends and family that I see often do not smell it. The diet is very harsh since choline is in almost everything, so I have yet to stick to it. There is a diagnostic place near me that charges $400, but you have to go through a lab and I have yet to call the labs and see how much they would charge and if they would even do it for me. Forget going through my doctor. She doesn't think it is TMAU since I did not have body odor. It's time I get a new doctor. I do not sweat easily so I think this is why I do not smell.

Here is some reasons why I think it is TMAU...

my breath is VERY strong and can fill up the room at times
the smell varies from marijuana like (I do not smoke), to sewage to rotten eggs
husband and mom cannot smell it at all
started when I was 18 and started taking birth control - hormonal changes can bring it on.
is worse around my period
I have yeast problems and I suspect I have a lot of bacteria in the gut.

This may sound hokie to some, but it went to a renowned psychic that told me I have a lot of bacteria in my gut. I did not mention TMAU to her at the time. I went on a low sugar diet as she recommended and I got rid of my yeast infections, but the bad breath remained. I am going to see her again in two days and see if she can tell me if it is TMAU or not.

I'll keep you posted.

TIRED · Post by **TIRED** » Tue Sep 28, 2010 9:54 am

they are working on a cure...

http://www.bloodbornebodyodorandhalitos ... nuria.html

halitosisux · Post by **halitosisux** » Tue Sep 28, 2010 10:04 am

Thanks for those links C.
Thanks for your info there Tired.

jc · Post by jc » Tue Sep 28, 2010 12:44 pm

I have sent PTC Therapeutics an e-mail inquiring about ataluren last week. The auto reply sent me a number on who to talk to.

Diane Goetz ( 908 ) 912-9256

The Patient Advocacy Team
PTC Therapeutics
South Plainfield, NJ

I will try to purchase this drug if they will allow me to. If anyone is interested I suggest you call them too, not to buy yet but to let them know that they have a customer base.

TIRED · Post by **TIRED** » Fri Oct 01, 2010 4:46 am

JC I called this place, but they said the drug will not be available for TMAU sufferers.

Psychic was 99% sure that secondary TMAU is what I have and that I got it after starting birth control at age 18. I take what she says with a grain of salt, so I am still unsure what is causing this, but I am going to pay for the urine test for sure now and not get my amalgam fillings out just yet.

just fyi - I substitute taught 6 classes of 30 6th graders today. I sucked on these raspberry xylitol mints all day and got no reactions until I yawned. When I yawned a student 5 ft. in front of me said, "Whew, it smells like a gas bomb." Also, the psychic has a very keen sense of smell and she couldn't smell a thing. Now this makes me think that maybe because I am not eating the very high choline foods it is not detectable when I am simply talking, but if I take a deep breath then it is. In any case I think it is something systemic because it seems to be coming from my lungs not my mouth.

halitosisux · Post by **halitosisux** » Fri Oct 01, 2010 6:31 am

Tired, will the urine test you'll be having test for TMAU and for secondary TMAU?

How long have you been trying a low choline diet?

TIRED · Post by **TIRED** » Fri Oct 01, 2010 2:44 pm

I am going to do the urine test which should test for secondary TMAU, but I will have to do more looking into this because I need to read up on secondary TMAU some more. I read something last night that said with secondary TMAU the body produces its own TMA which means that it doesn't matter what I eat right? So confused - have to do more reading on this.

Also, I read a post from someone that tested positive for it and she said that her friends always thought that their babies soiled their diapers when she was around - this same thing would happen to me all the time when I was in a mommy group - this made me feel even more positive it was TMAU.

I am wondering now if it is secondary maybe I can be cured with antibiotics and probiotics. Then again they mentioned it being hormonal in which I am screwed until menopause.

Someone mentioned a link between foods with histamine and TMAU - this might be something to look into, but also it's just more food to avoid.

excuse my rambling

TIRED · Post by **TIRED** » Fri Oct 01, 2010 3:06 pm

I have been staying away from the foods that have high choline for about three years now and I do not get the BIG reactions that I use to get. I still get reactions though because choline is in so many foods that I think I would starve if I gave it all up. There is a girl on youtube named Camille that follows the diet strictly and she looks anorexic. She has full blown TMAU though and she used to have bad body odor - if I had BO too I would follow a strict diet too.

If I eat fish or eggs I do get these BIG reactions again and it seems to be worse during menstration. One time I brushed my teeth and went pee and went downstairs for a few minutes. When I came up I smell a marijuana type smell. Sometimes people pick up this smell around me (they think I'm a pothead I'm sure). I thought, "I finally smell it!" This happened to a woman on youtube with TMAU - she eve called a plummer because she thought it was her drains.

My bb seems to seep out intermittently - when I laugh or yawn.

halitosisux · Post by **halitosisux** » Fri Oct 01, 2010 3:44 pm

Tired, from my understanding TMA is produced in every gut by the bacteria in the gut. The more choline in the diet, the more TMA. The TMA gets absorbed into the bloodstream and normally the body can deal with the TMA up to a certain level.

If there's too much TMA in the bloodstream then it start to make you smell. TMA in low quantities doesnt smell of fish it smells of shit/garbage.

Too much TMA in the bloodstream can be due to:-

1. dysfuntion (partial or total) of the enzymes that normally deal with TMA in the bloodstream.

2. A diet which is high in choline. Choline then gets metabolized into TMA by gut bacteria.

3. Too much TMA being produced in the gut. This can be due to a number of different possibilities, but its all to do with the gut bacteria - whether its due to the bacterial profile, the ecology, digestive problems, etc etc.

This is all very simplistic, but basically what I understand to be happening.
Metronidazole helps sometimes because it temporarily reduces the bacterial numbers in the gut. Certain probiotics also have a beneficial role for obvious reasons.

Hormones can affect the body, gut flora, immune system, enzyme production.

jc · Post by jc » Sat Oct 02, 2010 8:16 am

[quote="TIRED"]JC I called this place, but they said the drug will not be available for TMAU sufferers.

Thanks for calling them. Don`t worry, I used to work as a business consultant so I know all companies think the same. Once they realize that they have a potential wide market with TMAU patients then they will switch their target market.