New member with questions

Hi

So I am new here. I've always known of my Trimethylaminuria, diagnosed at about 6-7. I have no idea of the severity of my case relative to others. I can tell you it was very strong when I was a teenager which I suspect was partly due to hormonal changes etc. Along with the likelihood I was simply not that hygienic, as most pre-adolescent + teenage boys generally aren't anyway.

I have been taking chlorophyll since I was about 14. Just the standard 100mg p/capsule supplements. I found in my teenage years it helped but it was still quite obviously and explicitly noticeable to others. I should note I loosely follow the "TMAU diet" as it appears to be referred - by loosely I basically mean I absolutely avoid fish and crustacea, whilst limiting intake of egg, nuts and spinach.

Once I hit around 18 (maintained chlorophyll usage the whole time) people seemed to start noticing less and less. I have never really been able to smell myself so rely on others as my indicator (one of the most frustrating things about the disorder). I never took what people close to me say because I would generally assume they are A) Lying (white lie) or B) Have become so accustomed to my scent that it is a lot less noticeable to them..

Now I can honestly say I rarely have an issue, I take precautions of course - I have lowered my dosage to two capsules every morning and have done so for the past 3 years (I know you're meant to take it with food I;ve just gotten lazy I guess). When I play sport or go to the gym I will try to get to the shower as soon as possible. I will ALWAYS wear deodorant - shower once or twice a day - usually wear cologne - go for the scented hair gels etc - anything that can help mask it. Anyway you get the point.

I try my best not to let the disorder consume me. I was totally paranoid about it as a teenager and sure, copped some bullying for it. It had a hugely negative affect on me - Paranoia, depression, anxiety, a feeling of hopelessness, narcissism (why me god?), all of the above. I just signed up to this forum for two reasons, the first is to share my story in the hope it'll help others and the second reason I will get to. But just on the first reason.. honestly people, I hit rock bottom agonizing myself over this thing for a couple of years. I've been reading posts for the last 2 hours on this site and it saddens me to read some people going through a similar mental process as what I did. Some even talking about taking their lives over it.. It's a rubbish thing to have but honestly as much as I used to hate my mother saying it - it could be a lot worse, she was right. Life is too short to let something like this consume you and a life with TMAU is certainly worth living. As I said - I have been in a bad place over this. I now lead a perfectly normal and happy life.

I just felt like I had to say that after reading a sellect few posts. I had no intention of rambling on a personal level, I even wrote at the start of the post that I would not give my life story - swiftly back-spaced. It just occurred to me as I was writing that I have never really spoken with anyone about this. I even have a family member who has it but we barely talk about it, certainly don't talk about how it affects us emotionally.

Anyway enough. Second reason I signed up is due to some changes in my life, I am suddenly becoming more conscious of my TMAU again. I think I have literally spent 15 minutes of the last 5 years thinking about it. The icing on the cake was we just ordered Chinese and I mistook the prawns for chicken and I am suddenly feeling very self conscious.

So I come here as I have not looked into any advancements in research into how to manage TMAU over the past number of years. At the time I started on the chlorophyll, research was still well within its infancy - not much info was available at all. Now, years and years down the track I'm thinking there must have been some advancements.. Reading some posts was somewhat promising however lots of mixed messages.

So.. Aside from my chlorophyll intake (which has helped me greatly but it certainly has not cured me) and abstaining from fish/choline rich products.. what can I do?

I've seen the Ozone generator suggestion which sounds interesting..
I've seen Activated Carbon?..
I've seen suggestions of a stricter diet..
I've seen Milk Thistle Extract..
I've seen an increase in potassium consumption..

Lot's of different ideas... Is there anything that's concrete?

Can anyone who has tried any of these or alternative methods HONESTLY tell me that they can reasonably and as objectively as possible conclude that it is effective?

Feel free to offer any other thoughts/suggestions/comments/questions also. Tweet