Good news for tmau sufferers

Trimethylaminuria
#1

TMAU in the Press & Good results from Treatment

Hi Everyone

Firstly I have recently been on The ONE SHOW on BBC1 regarding my story of TMAU and what it is and how hard it is to live with and treat etc. This can be Viewed on BBC i player.

The story was put over with a lot of tact and hopefully the more people who know about this terrible complaint the better for all of us with it.

I have also just been in a Magazine called CHAT with another look at the same problem, again the more that know the better it gets. This can be viewed on the website tmau.org.uk then just follow the link.

With regards to the treatment I have been trying since the end of last year, I have some really promising good news, it seems to be working and making my life a great deal easier.

I have been sticking to a very strict diet, and I mean strict ! It is hard to find ways to get the protein I need but with a lot of thought and effort I have managed. This is a diet to limit the amount of Choline I intake, it also cuts out almost comlpetely any Trimethylamine, ie; from seafood etc. I also have to avoid food with Lethicine (E322) found in many ready prepared foods.

Then I take a course of antibiotics (Neomycin,Metronidazole or Amoxicllin) for 2 weeks, this is to lower the amount of Trimethylamine in my body. After that I take probioticts to help restore the good bacteria in my stomach. I also take Riboflavin Vitamin B2 capsules every day.

This along with my daily Charcoal with either, Champex, Odor-Cleanse, Body-Mints or Chlorofresh and very elaborate cleanliness routine have certainly had a very good effect.

At the momment I find it very difficult to be confident that it is has totally cleared the odour, but I do feel it has lowered it to a much more tollerable level. I have started to do a few things that I would not have done before the treatment started.

Well I can only hope this is of some interest and use for any other sufferers and helps in some way?

Good luck everyone
Gazela

#2

Hi Gazela,

You’re a real champion guy for having the guts to go on TV and spread the word about this condition. The video of your TV appearance can be seen by other sufferers around the world and it gives people such hope to know that the condition’s become more widely known by others - including doctors 'cause they often don’t believe us when we complain about our body odours, 'cause other people have been complaining about us in a threatening way sometimes too.
I have got my urine test results back from the lab, i paid for my own test. My results are really high, but the liver function bit is said to be normal, so I’m in the TMAU2 category, and report suggests I visit the GP to start on a course of antibiotics.

My results were:-
Urine Creatinine 10.80 mmol/L
Trimethylamine TMA 153.3 umol/mmol HIGH 2.5 - 10.9 normal
TMA-n-oxide 1242.4 umol/mmol HIGH 17.0 - 147.0 normal
TMA/TMA-n-oxide ratio 0.10 ratio NORMAL 0.05 - 0.21 normal

it feels really good to have these results in confirmation that I do have an odour problem, that its not just in my head, and the fact the other people at work complain and dislike me is not just in my head either…
I’ve suffered since age of 13, now 53 so you can imagine how many doctors I have visited over those years trying to find what was wrong with me. A few years ago I read an article about this condition based on USA and it said people smell like fish and unless they shower every 10 or 20 minutes they start smelling strongly of fish again. Because its not always fish we smell like its difficult to realise that was the problem, i think maybe ‘rotten fish’ smells much the same as ‘rotten meat’ in my case.
Anyway when people share their experiences with this condition it sure helps everyone living with this on a daily basis.

#3

Gazela and Magsie,
First let me commend you Gazela for what you were able to accomplish through the tv show and the article in the magazine. This does, as Magsie said, put this out in the general public, maybe instead of someone being so rude and hateful, they may stop and wonder if that person has this disorder and be a little more considerate and understanding. The best point is the primary ones which need to hear it will , “THE DOCTORS”, who have insinuated our mental instablity for all this time will now take a new look into our claims. More publicity could even institute grants to be made availabe for researchers to study and find a cure for this. I’m with you Magsie, I am 57 and have suffered with this disorder since age 24. I have tried some of the treatments suggested and have found slight success. Gazela you are absolutely right about a restricted diet. I can be doing fine, taking two a day of Nullo, 1 multi vit, calcium, magnesium and zinc combination, acidopilus and biatin. This seems to work fine until I make the mistake of not thinking of the food I’m eating, being use to my reg. diet. When I eat wrong it doesn’t matter what suppliment I take or how much i clean and bathe, it’s just pure bad breath from hades and a dog poo smell. The charcoal deal, I’m not so sure of this pill. I took them for a while and one thing that I noticed was that after about 5-7 days of taking the char. I couldn’t smell, I mean literally I could walk in a room and let’s say an incense was burning, could not smell it. So wheter or not it elemnated my body smell I couldn’t tell you, but I do know that it affected my ability to smell and taste. I never tested the charcoal while being out in general public, should have, just didn’t. Gazela, I’m not trying to make you feel paranoid again, because I know that the mental strain of what we have been thourgh in our past would be a hard thing to shake off overnight, but maybe you should pay attention again when you are out and about and see if anyone is acting as though you have an odor then you will know if it is because the charcoal did the same thing to you, took away your sense of smell. I pray that this is not the case because I would love for you regiment to be the one that makes us confident enough to participate in the normal world without extreme emotional upset and embarassment over a condition we can do nothing about. Please let me know what you discover with the charcoal dill. Wishing only the best for us all. God Bless us all, every stinking one!! LOL