Positive results

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Positive results

Postby Joelio5 » Mon Jan 18, 2016 2:14 pm

Helllooooo I posted here about 7 months ago about me potentially having TMAU, and after 7 months through the NHS I finally got results! They kept messing up samples somewhere along the line. Even though it takes part of our soul to get those samples! Even people that can’t normally smell you on a high choline diet can! To be fair I was having beans and egg yolk every meal with a large amount of choline bitrate for dessert. I got secondary or TMAU2.

So really just wanted to say hello to everyone! How is everyone coping?

Also I wanted to know if there were any conferences where we meet up once a year or something? Would be great to meet some other people with this delightful disease.

Any tips on any supplements that can be taken for type 2? So far im savvy with chlorophyll and activated charcoal, think im gonna buy nullo and digestive enzymes as well.

Thanks :D
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Joined: Wed Jun 24, 2015 10:21 pm

Re: Positive results

Postby Tenacity » Wed Mar 09, 2016 10:01 am

Helloo Joel :)

Congrats on your positive test results. It always seems weird to congratulate people on discovering they have a metabolic disorder, but it's nice to have an answer and a way forward, isn't it?

This is just a very quick reply, as I notice nobody's got back to you since January. Unfortunately I'm mega busy at the moment, and probably shouldn't really be on here. Nevertheless, I am a procrastinator to the core, and it's nice to chat to people in a situation similar to mine. :)

I think there is a group that meets up in London, but I've never been. Hopefully you've come across that by now?

In answer to your questions:
-There is no evidence that chlorophyll works (that doesn't mean it doesn't, there's just no evidence). You want copper chlorophyllin, which is made out of chlorophyll but is not the same thing. That's the Nullo you mentioned or Body Mint/Body Mint Sport.

-Also, there is no evidence that digestive enzymes make a difference. I'm not saying they won't, but if they do then researchers wouldn't have an answer to why (as far as I know). The enzymes we don't have are ones that make tiny molecules (TMA, gross) a bit bigger by adding on an oxygen and making TMAO (odorless). Digestive enzyme supplements tend to contain things like protease and lipase, which break down big things in your diet like protein and fat to make them smaller. Hence they wouldn't necessarily have an affect on TMAU. Did that make sense?

-How am I coping? It depends which day you ask me! On the one hand I'd say fine, as I don't let it hold me back and have made it into an extremely competitive & stressful profession. On the other hand there isn't a day it doesn't stress me out or make me feel like less of a person. Especially when the antibiotics have stopped working and I'm waiting for the next dose (like now).

How are *you* coping?

Good luck with everything,

T :)
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Joined: Sun Dec 20, 2009 11:07 pm

Re: Positive results

Postby Tenacity » Wed Mar 09, 2016 10:07 am

Meant to say as well that you should have received a referral to a dietitian or consultant by now. Have you? The dietitians you get aren't always great (I've been told stuff that's wrong by them before), but they will help you stay healthy on what is essentially a restrictive diet. You definitely shouldn't be going it alone in the early stages, and they can monitor your nutrition levels and check you're okay. Good luck again...
Posts: 50
Joined: Sun Dec 20, 2009 11:07 pm

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