Keep probing for answers!

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Keep probing for answers!

Postby malory » Fri Jan 14, 2011 2:49 pm

Hi everybody,

I have quite recently been diagnosed with tmau after 13 years of fruitless searching for a cause for my monstrous breath odour. I have, over the years, done several diets and numerous alternative treatments, as well as taken several strong antibiotics. I have always concentrated on boosting the strength and energy of my immune system. Since my diagnosis (2months ago) I have followed the treatment protocol carefully but am not happy with it.

I am happy to experience the positivity of this website but I feel we still need to keep probing for a more permanent solution to our problems.
Fact 1: this is a devastating condition to live with as it is socially isolating, therefore psychologically damaging, and encourages little sympathy from the general public or the medical profession.
Fact 2: the diet has caused weight loss in some individuals and, perhaps, could cause health problems if done over a prolonged period of time.
Fact 3: the supplements etc.are extremely expensive and, in some people, their effectiveness is not evident.
Fact 4: prolonged usage of antibiotics can cause candida, make those bad gut bacteria more resisitant in the long term and deplete our immune systems of energy.

While we are struggling to deal with this condition on a day to day basis, I don't think we should forget that a cure for this condition is not being properly researched at present. Ok, so a liver transplant may not be feasible but is that it? Enzyme replacement therapy is not an option because there is no conclusive eveidence that it could work or because it is too costly to investigate? We all know that nobody is interested enough to sponsor research into this area of medicine andTMAU millionaires are in short supply.

I now have 2 missions which, I hope, UK TMAU sufferers will be interested in taking part in. My first mission is to further publicicse this condition (I saw the 'Embarrassing Bodies' and 'This Morning' clips etc) so that the condition can be destigmatised and so that those who smell but don't know why can go to get the test. My second mission is to encourage the powers that be to research this issue more thoroughly.

I'll continue eating white rice and being positive BUT I think more should be done to help us. Nobody will give it to us on a plate but I feel we should speak out. If only one more lost person goes to get a tmau test because we manage to increase interest in the subject, then it will be worth it.
malory
 
Posts: 215
Joined: Fri Nov 26, 2010 1:16 pm
Location: London -west

Re: Keep probing for answers!

Postby flower » Fri Jan 14, 2011 4:44 pm

Malory,
I agree with your 2 missions
I still believe there is hope for all of us
There are a lot of people on forum with improvement with smell when you look at the results of second test and the positive reactions....
Most of us manage very well in their life
Do you use chlorophyll tablets , it works for some....

I am trying to go off forum for a little while because I am too buzzy with it...hope I can...I will try...
Hope the missions will be succesfull ...
Flower
flower
 
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Joined: Wed Nov 17, 2010 1:15 pm


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