Tmau 2

Trimethylaminuria
#1

Hi I have recently been tested and confirmed that I have TMAU but I have been told by Sheffield Hospital in UK that there are two seperate types. One is heriditary and cannot be cured but TMAU 2 can be treated with a large dose of strong antibiotics. Type 2 is not hereditary and is caused by a colony of bad bacteria building up in the gut and causing the FM03 gene to be unable to rid the body of excess Trmethylamine.
I am starting a course of antibiotics and will let you know the outcome when I have completed this and been retested to confirm if it worked or not?

#2

Hope everything works out for you.

#3

Hi all again, just to tell you that there is no let up in the bad smell and nothing as yet is working, so life goes on just as usual. Waiting to see specialist in London hope he can help in some small way, who knows???

#4

Any more updates?

I was born with TMAU:(( In my case, here are some tips/things that have helped me come to terms with my disease, I hope it can help some of you:
-Using Talcum powder (this is a MUST in the summer)
-Using unscented moisturizer.
-Drinking lots of water.

  • Activated charcoal which I usually get from Amazon.com (I find the Braggs capsules better than the tablets- careful if you are taking prescription meds as these may stop them from working).
  • Chlorophyll (from Amazon, I get the pure version called World Organic and only take it when I go out- I find the peppermint version too weak)
    -CBD oil drops from Get Tranquil CBD (I get that from GetTranquil.com I get original flavour- I get this because I find that my smell is worse when I am anxious and tense. These drops help me relax.)
  • A Girl’s Guide to Managing TMAU: My Personal Experiences, Diet and Solutions Kindle Edition by Katie Turner (from Amazon, this book is a godsend, it says it’s a girl’s guide, but I found that the tips can be used by anyone. It has lots of helpful tips/ideas on how to manage the disease)
    -Ashley Smells Like Garbage!: First book in the series: A Child Like Me Kamau Mahakoe (from Amazon—This could be good if you have a child that suffers from TMAU)
    -The Boy Who Smells Like Fish (2013)- Movie about a Boy who is living with TMAU.

We truly need to raise more awareness about this horrible disease so don’t be afraid to open up to your loved ones also if anyone else has any tips which could help, please share them.

1 Like