Suggested secondary Trimethylaminuria

help with getting a diagnosis

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Suggested secondary Trimethylaminuria

Postby Lisa » Fri Oct 29, 2010 5:22 pm

Hi all, had letter from Dr. L, says suggested secondary Tmau, can someone explain in layman's terms what this means please, as I dont quite understand. Thankyou. :roll:
Lisa
 
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Re: Suggested secondary Trimethylaminuria

Postby SmellyKelly2 » Fri Oct 29, 2010 5:35 pm

Hi Lisa
Thats good news. This is my understanding:-
Secondary is that TMA has built up in your system caused only by the bad stomach bacteria.
But your liver functions properly when the level of TMA is reduced to a normal level.
Primary is when the liver is a problem like mine. So even if you try to reduce the TMA in the body, it might still not be enough to make a difference as my liver just does not function properly anyway (built in gene not working).
SK
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Re: Suggested secondary Trimethylaminuria

Postby Lisa » Fri Oct 29, 2010 7:05 pm

Hi Kelly2, Thankyou for explaining. So basically, I have the "easier" to manage of the 2? It's nothing to do with the liver enzyme, just bad gut flora? So, I can manage it? Dare I risk a little smile? lol. :D . My liver and renal results came back as normal too. x
Lisa
 
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Re: Suggested secondary Trimethylaminuria

Postby lyndsey » Fri Oct 29, 2010 7:27 pm

Hi Lisa

Thats great news! I would risk a big smile but please ask SK opinion too on this but I would cut out sugar too as it is supposed to feed the bad bacteria.

Love and best wishes

Lyndsey
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Re: Suggested secondary Trimethylaminuria

Postby smelly » Fri Oct 29, 2010 10:38 pm

Hi Lisa,

Pleased for you that you've got a proper diagnosis. :) I think most of us are given the diagnosis 'likely secondary TMAU.' I dont know if it necessarily means you smell less than with primary TMAU or its any easier to treat - my smell factor was thought to be 'very high', and made worse with hormonal fluctuations, which cant really be avoided! But on the positive side, the thinking is that you might be able to re-populate your gut if you take the antibiotics and probiotics (which is the straw Im grasping onto at the moment! - alongside researching overgrowth of other organisms that could be producing odour such as yeast.....)

Give yourself a pat on the back for getting to this stage, could you have imagined this time last year you could have a diagnosis? Great huh? :D
smelly
 
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Re: Suggested secondary Trimethylaminuria

Postby SmellyKelly2 » Sat Oct 30, 2010 1:04 pm

Yes Lisa I was under the impression that secondary was easier to treat.
Lyndsay is right about cutting out sugar for bad bacteria.
You might want to replace sugar with xlyitol a sweetener from fruit, can get in Sainsburys.
As I have a sweet tooth and find it difficult.
SK
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Re: Suggested secondary Trimethylaminuria

Postby kittycat » Tue Nov 02, 2010 2:19 pm

Thanks for all this info people :D I've just had email result from Mullhaven saying prob tmau2 :D :D They say that another cause could be dimethylglycinura which they're testing for free. Will look that up later when I've more time. Kx
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