Trimethylaminuria (TMAU) Community

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barnowl
moderator

rareconnect tmau webinar archive: Prof George Preti

rareconnect TMAU webinar recording.
3rd April 2017.
Prof George Preti.
Latest Overview of TMAU.

https://youtu.be/5Qz56cZLTJE

Did the Professor actually say that there is no cure to be seen in his or any of the listeners lifetime? That is pretty encouraging. :P

Skunkie most doctors don't want to give false hopes so I believe he is careful with his answers as you can't put disclaimers on lectures.

barnowl
moderator

He always says this phrase in media and lectures.
Personally I don't think it true or tactful.

for a start P&G will be bringing out some sort of TMA reducer (unknown when).

The problem was no-one was really looking for therapies up to 2011 (other than basic things).
Even now it's pretty sluggish apart from this lead.

Ok, makes sense justt sounded a bit rough for me. :) I bet all of us have been trying almost everything to get rid of this so you dont want to hear any empty remedies from medical professionals. Was the P&G reducer aimed for heart problems? I have some genetical problems with my blood pressure also. Would be good to kill two flies with a one strike..To be honest i dont really care living with a high blood pressure, but this stink is killing me every day in some form...

This is a really embarrasing condition and I think earlier days, when social media was not around noone really wanted to go on stage and tell that they smell like fart. This is prolly the major reason why this condition has not got more publicity/medical research. Well when there is a will there is always hope! Lot of people seem to be looking for cure here and other forums so if there is a cure it will be out sooner or later.

barnowl
moderator

He always says that phrase. Each person can decide why.

The P&G reducer is meant to be for Heart disease. A lot of TMAO-CVD research now going on, with the aim of reducing tma levels in the gut. So for that approach, the future is looking very good for us.

It will be over the counter.

It was announced in August 2015, but no sign of a product yet.

barnowl
moderator

A few things I took from his webinar and paper :

He now seems open-minded that TMA may not be the sole cause of odors. This was a surprise to me as I had him down as a 'strict TMAU-ist'.
In their paper they had 10 'TMAU' volunteers that by the urine test were TMAU1, but only one of them even had one mutation in the DNA test.
The other 9 should have been 'carriers' or mild at best, or even non-affected (by textbook).
It goes to show how little is known about metabolic body odors.
At the moment we only have TMAU to cling to.

It should also be recalled that he is not in the medical profession.
He is a professor at a chemical senses institute.
It's his uni pal Dr Fennessey that got him involved with TMAU.
Dr Fennessey being from Denver Hospital which 'discovered' TMAU.

Thank you for the clarification barnowl. Sounds good that the involved professor is from chemical field, nasty gas / chemical this seems to be. (my personal opinion is that at times this can smell even more horrendous than feces) Hopefully the possible future medication will be available at this part of the world also..

barnowl
moderator

Im sure it will be worldwide. P&G being a worldwide company and it will be over the counter. A pity its taking so long.

Over the counter sounds good because I have not been tested/diagnosed. Difficult to find a place to do the test here. All the symptoms are with me and my other parent seem to have these symptoms also. I have spent most of my life thinking that I am just unfortunate freak and there is nothing I can do about it. Inspirating to see that some kind of solution could be coming.

thankyou sounds intresting .... a pill that lowers it by a bit would be helpful if you could combin treatments and other things includeing deit then it could be very helpful??? thanks for posting

Barnowl. In one article here, It stated that if you have the symptoms of TMAU, and test results came out negative you have TMAU. I find some of your statements and that article conflicting.

Barnowl. In one article here, It stated that if you have the symptoms of TMAU, and test results came out negative you have TMAU. I find some of your statements and that article conflicting. Please clarify. Thank you.

yes ive had that said befor there are vereations ofve fmo3 and other pathways and genes so you can have it and be negeaivte as we'll. also if you have type2 then your baCTRICAS in the gut that can make tmau it seems...like I say its very complex condation theres a vast information on genes there are other possible tests that could be done...loud tests that might also give a reading???? I post some ofve them in a few days time...

barnowl
moderator

hi Waiting

Do you mean something I wrote ? I'm not sure what you mean.
Is it to do with this paper ?

hi moderator thanks for the information ;.)

barnowl
moderator

Hi Waiting, I will take a guess ...

I said urine was +ve and DNA test -ve.
I think the strict 'rule' is to go by the urine test, then confirm it with the DNA test.
They all seemed to be 'urine' TMAU1 cases, but the DNA test has them as 'compound heterozygote' types, or even just carriers of one common variant (supposedly 'harmless') which atm experts might teach as being 'carriers'.

IMHO many more can be prone to TMAU, including those supposedly 'carriers' atm. So I am way liberal on that.

They seem to be going in another direction, suggesting it might other enzymes are a factor. I'm still a strict 'FMOist' and not a 'TMAUist'.

Barnowl it was not you. I can't remember exactly who wrote it but the article says that if you have all the symptoms of TMAU and not tested for it, it is in all probability TMAU. Also those who tested negative but have symptoms of TMAU, they have TMAU. Anyway, I may have misunderstood the article as it contains a lot of medical and scientific words and explanations which I could not follow. I hope in future, they will explain it in layman's term if that is at all possible. Thank you for clarifying this issue.

thankyou moderator for you candia points I like that.... iam not a fmoist either its to simplistic view and I also think a lot people with tmau.... or what ever classafation they like to call it.... I do think the don't get the help they need as they only look at this one thing? femoist.... the many path ways and genes are involed weather they like it or not and some trails that have shown very favable resuits never get used .... as I have seen there quite a few real negavtie things we get from having this illness .... it gravely concerns me.... I also think the abuse we get should be looked into... as its needs to be champaioned to protected them from this hate/..... I have seen first hand what this hate is like belive me when I say... that some the damage done is not fixable ,,,, and some will take thounds ofve pounds to fix,,,what they did to me.....,,, tmau is not just some simply thing ,,,,it haves grave conserquneces .....in more ways than one,,,,