Hello

new to tmau.org.uk ?, say a big hello here.

Moderators: bigvern, admin

Hello

Postby amethyst » Thu Jul 21, 2011 6:58 pm

Hi

I have just recently been told I have TMAU but a year ago my boss took me into the office with her and the assistant manager and told me i smelt. I just wanted to disapear i couldnt belive it i went to the doctor he was just off, i went and saw a female doctor who wanted to put m on the sick i said i cant afford to. She sent me for tests, at work i try to stay away from my colegues i shower every day, spray deodrant and perfume at work, I feel people are talking about me. I dont go out. I have no friends and I feel so alone.

i have had several tests and they are now testing my dna which i didnt like the sound of.

I found this web site and some very interesting things on here . I found a web site in america as my dietician said its more common there and there is only research there.
amethyst
 
Posts: 2
Joined: Wed Jul 20, 2011 7:39 pm

Re: Hello

Postby Lisa » Thu Jul 21, 2011 8:58 pm

I would change your GP, what an R's 'ole!
Research is done here, by Dr. Manning in Sheffield, and Dr. Lachmann in London.
Like I've said before, go back to him, armed with lots of info, tell him you'd like help, OR change your doctor.
This condition can be manage to a certain extent.
We all know how you feel, lonely, sad, angry, etc, but there will be light at the end of the tunnel.
You hang on in there, AND, you're in good company in here. You've got us! :D
Lisa
 
Posts: 412
Joined: Tue Jul 06, 2010 10:35 am

Re: Hello

Postby kittycat » Thu Jul 21, 2011 10:03 pm

Hi amethyst

Don't worry about the DNA test, they are just verifying whether you have Tmau 1 or 2, and the treatment (such as it is) is much the same anyway. Does the nutritionist specialize in Tmau? Because the healthy diet a nutritionist would recommend, would probably make Tmau odour worse.........Also, have they suggested you take vit B2 and probiotics? The low choline diet and those two suppliments are the basis for improvement, but stick with it, as it does take time. If you could tell the boss and his assistant of your diagnosis, and even your colleagues, they may show you more sympathy. Especially if they know you are mortified and doing your best...It might get them on your side..It took me years to realize that Tmau had completely changed my personality, and my watchful unhappy face just made my colleagues think that I was hard, humourless and didn't like THEM, so I forced myself to present a more positive relaxed attitude. Instead of avoiding people, I went out of my way to be friendly, which was difficult because I didn't know about Tmau, and was eating all the wrong things. Even tho I must have been very smelly, people started to respond in a nicer way. So, get your nerve up and try it. From what you say, it couldn't get much worse..Good luck, kittyx
kittycat
 
Posts: 468
Joined: Mon Aug 16, 2010 9:19 pm

Re: Hello

Postby amethyst » Sun Jul 24, 2011 11:22 am

thankyou for your posts its good to know there are still nice people out there

i am going to see a different doctor and ask if there is someone i can talk to as from what ive read on here it may help
amethyst
 
Posts: 2
Joined: Wed Jul 20, 2011 7:39 pm

Re: Hello

Postby tmau62 » Sun Jul 31, 2011 12:36 pm

Hi, i am a new member of this forum and have suffered from TMAU since the age of 11, i am now in my late 40s. I had tried to get this diagnosed since 1989 but came across ignorance and indifference from my doctors. I scoured the internet for possible causes concerning my bodyodour and through trial and error and many hours on the computer, discovered that i may be suffering from TMAU. I gathered together all the information i could on how to test for this condition and to all my information to the doctor. I TOLD him that this is what i belive i am suffering from and TOLD him that i wanted to be tested for it.

The correct method for testing is collecting a urine sample, FIRSTLY AND MORE IMPORTANTLY THE INDIVIDUAL MUST LOAD UP ON COLENE BY EATINF EGGS AND FISH 24 HOUS BEFORE SUPPLYING A URINE TEST. THIS IS CALLED A 'COLENE LOAD'. THE SAMPLE MUST BE SENT AWAY A.S.A.P TO DR NIGEL MANNING AT SHEFFIELD CHILDRENS HOSPITAL IN ENGLAND. HE IS THE ONLY ONE THAT DOES THIS TEST IN BRITAIN. DR MANNING WILL SPEAK TO ANYONE PERSONALLY WHO BELIVES THEY MAY BE SUFFERING FROM THIS CONDITION. I HAVE SPOKEN TO HIM AND HE IS A VERY SYMPATHETIC AND NICE MAN. I HAVE ALSO TRAVELLED TO LONDON TO SEE DR ROBIN LACHMAN, HE IS SUPPOSED TO BE AN EXPERT IN THIS AREA. I HAVE RECEIVED LOW COLENE MEAL PLANS AND MENUES FROM THIER DIETICIANS.

MY LIFE HAS BEEN RUINED BY THIS CONDITION, BUT MORE IMPORTANTLY, IT HAS BEEN PASSED ON TO MY TWO CHILDREN, WHICH HAS DEVASTATED ME BECAUSE I KNOW THEY SUFFER.

IF ANYONE WOULD LIKE TO CONTACT ME PLEASE FEEL FREE TO ASK ME ANYTHING. I HAVE DOCTOR MANNINGS TELEPHONE NUMBER AND THE NUMBER OF THE DIETICIAN I SAW IN LONDON IF ANYONE WOULD LIKE A COPY OF THE LOW COLENE MEAL PLAN.
tmau62
 
Posts: 2
Joined: Sun Jul 31, 2011 12:11 pm

Re: Hello

Postby tmau62 » Thu Aug 25, 2011 1:01 pm

Hi,

1. Arm yourself with information on TRIMETHYLAMINURIA (TMAU). Email Nigel.Manning@sch.nhs.uk he is the only person in the UK who tests for this condition. He will send you a fact sheet.

2. You need to load-up on choline such as fish eggs etc. TELL yor doctor you want testing for TMAU, it is a simple urine test best done at the beginning of the week (the morning after the choline load) so that it gets to the lab quicker.

3. TELL your doctor where to send the sample: Nigel Manning, Principal Clinical Scientist Dept, Clinical Chemistry, Sheffield Children's Hospital, Sheffield, S10 2TH. Dr Mannings tel no is: 0114 271 7307, he will tell you exactly how to collect the urine and in what container.

4. A copy of a low choline meal plan can be requested from THE DEPARTMENT OF NUTRITION AND DIETETICS, Metabolic Dietician, Charle Maritz tel 0845 1555 000 ext 723604.

5. After you have been diagnosed ask your doctor to refer you to DR ROBIN LACHMAN, METABOLIC RHLO2, BASIL OPD, THE NATIONAL HOSPITAL for NEUROLOGY and NEUROSURGERY, QUEEN STREET, LONDON. He is an authority on this condition.

I HAVE SUFFERED FROM THIS CONDITON SINCE CHILDHOOD AND AM NOW IN MY LATE 40'S. I TRIED FOR 20 YEARS TO GET A DIAGNOSIS AND WAS ONLY DIAGNOSED IN 2009 BECAUSE I DID EXACTLY WHAT I HAVE ADVISED YOU TO DO, ABOVE.

IF A DOCTOR DOES NOT KNOW ANYTHING ABOUT TMAU YOU NEED TO TELL THEM.

I hope this helps you and please let me know how you get on.

Best wishes to you from tmau62.
tmau62
 
Posts: 2
Joined: Sun Jul 31, 2011 12:11 pm

Re: Hello

Postby kittycat » Thu Aug 25, 2011 2:07 pm

Hi tmau62
Thanks for going to all the trouble of writing this info. 8-) I was particularly interested in point 4...as my doc was not keen to 'bother' Dr Lachmann after my 'diminished' diagnosis.... I've been mainly eating a restrictive diet that I've gleaned from the net, so thought I'd ring them and get the meal plan in case it had food on there I wasn't sure about...The dietician was very helpful, and keen for my doc to refer me to them via Dr Lachmann's dept..she wouldn't send me the meal plan without blood tests and monitoring...She certainly wasn't dis-interested, in fact, very interested in any new cases :D wishing you well, love kittycatx
kittycat
 
Posts: 468
Joined: Mon Aug 16, 2010 9:19 pm


Return to new members, introductions & greetings !!

Who is online

Users browsing this forum: No registered users and 3 guests