Hey

[smellynelly]

hey, I've been suffering with the symptoms of TMAU since I turned 18,(9yrs) sometimes it is a fishy odour but mainly 1of poo, smelly feet and bad breath. I plucked up the courage to tell my gp a few years ago about these and was told he couldn't smell anything and that it was in my head, also the reaction of my family. I can only smell it sometimes as my nose seems to be blocked alot. But the amount of comments and hurtful remarks I recieve, I know I smell!!! I have been given a new gp and after researching
symptoms I'm positive that I have TMAU and have asked to be tested. My gp gave me a blank look when I asked and I seemed to know more on the subject than he did!He googled TMAU and I've given a urine sample but he seemed at a loss as to where to send it to. i.e which lab? Does anyone know where or if I can be tested in the N.W (u.k).
Also I'm a heavy smoker, I read somewhere that this can make symptoms worse, Is this true??
Thanks Neil

[bigvern]

Hi Neil

Your GP can find details of test procedure my contacting Nigel Manning, details below, he will then email the GP with test procedures (what to eat, where to send etc.)
I am not sure if the test is still available on the NHS through that route, but at least it's a start.
You cold get referred to Dr Lachmann in London and they would, I believe, do the test on your first visit (that is take a urine sample and send of for analysis)

There is FAQs by these 2 on this website that you could direct your GP towards.


Mr Nigel Manning, Principal Clinical Scientist
Dept. Clinical Chemistry
Sheffield Children's Hospital
Sheffield

Dr. Lachmann
Consultant in Metabolic Medicine
Charles Dent Metabolic Unit
Box 92
National Hospital for Neurology and Neurosurgery
Queen Square
London WC1N 3BGD

[flower]

Hi Nelly,

It's a whole process where you are going through, living with this condition.
I received so much understanding, love, help, patience,...on this side ...
I guess I can never give them back what I received.

Things will working out after a while, there are a lot of experts on board,

Flower

[flower]

Sorry, your name must be Nail,

Flower

[smelly]

Hi Neil,

yeah I think nicotine gets dealt with in the body by the same process as the foods we have to limit ,so by smoking you are placing an extra burden on your body making it less able to de-smell your food. I think its quite common for people with body odour to smoke because they feel it masks the odour. If you can face it, you would be doing yourself a massive favour by giving it up. Although you might not be a barrel of laughs to be around if you are going on the low TMA/choline diet AND giving up smoking at the same time.

On testing, read the posts on that subject before you have your sample taken. The way it is taken and transported make the difference between getting a positive and negative result, its so important. And the feeling amongst GPs is that it is so expensive that they will only let you have it done once, so make sure you get the sample treated correctly. If your GP wont pay for it, ask him to send it and you pay for it? That way you will get the proper interpretation of the results and the follow up treatment if it is positive. If your Gp agrees to sending the sample make sure he contacts Lachmann/Manning to find out exactly how they want the sample taken etc. You can also get it tested at a private lab. Im not sure if you still need a referal from you GP though.

Post in the 'getting tested' section if you have any problems or questions, and good luck

[smellynelly]

Thanks for the info guys,
wot a relief to find people who actually understand wot the crack is!!
Im due back to see my gp on tue so i will pass on the info and hopefully
get it on NHS! pretty gutted about this diet though, i'm a chef and i constantly
have to taste my food So dont no how thats gonna work out!!
Gona have to pack in the fags though if its gonna help with the smell!!!!
thanks again guys i'l keep you posted on how the testing/treatment goes.