Re: Cured of BO and TMAU at long last...

I have had TMAU for 5 years and have been diligent about learning as much as possible from doctors, nutritionists, genetic counselors, and what I can say is that there is NO CURE! People with TMAU suffer IMMENSELY without people making FALSE claims about being cured.

The first couple of years that I had TMAU I sought out support groups but because of posts like this "claiming to be cured" I decided to go alone. I couldn't take the constant disappointment of trying this, and trying that and having nothing work for "me" when it was "supposedly yielding great success" for the person in the support group.

Please, please, please, if you have TMAU try the supplements, try the low-choline diet but understand that it REDUCES odor, it DOES NOT ELIMINATE ODOR! You still SMELL!!! It does gets frustrating. People should not have to continue to suffer disappointment after disappointment with false claims of being cured.

With regard to water... Water is the only dietary necessity that we have in our diets that has zero CHOLINE. However, water does not "kill" the odor. If you have too much choline you can begin flushing your system so that you have to potty and can release trimethylamines out that way. BUT, the odor is still present. This is why everyone with TMAU hates this disorder. The smell rears its ugly head despite whether or not you try with all of your might to fight it or not.

With regard to air purifiers... I notice that rooms only clear out and smell normally when I leave. I have several of the Ionic Pro Ionizers and placed 3 in my living room. For the longest time I could not understand why people would react when they came in the room. Now I understand that NOTHING on the market can fight our odor.

I would offer this word of caution. If someone claims that they have tmau and their odor suddenly does subside. THEY DID NOT HAVE TMAU. I cannot state enough that there is currently NO CURE!!! Please don't subject yourself to the torture by believing these claims. These people are only going to cause you further pain and disappointment. I have to say that once I thought that I had "beaten" TMAU. It lasted for one month. I was taking antiboitics and was crazy watching my choline intake but the odor returned. I was crushed!!!

The truth about TMAU is that for a while you will begin to grieve the loss of your "normal" life (absent the odor). You might become depressed. These are all natural, normal stages. TMAU is further complicated by the fact that it is so uncommon that people don't know about it and don't understand how bad is really is...this includes doctors unfortunately. You need support. The best, support will come from a sufferer of TMAU. ONLY they know what it is like to live with TMAU.

If you have not been tested. I would suggest that you first get tested!!! Next or while in the process seek out a TMAU support group. Ignore the people who make extreme claims and follow the words of those who seem authentically genuine. You'll want to begin experimenting with the low choline diet and with the supplements. If you don't see results don't automatically convince yourself that you are one of the people who does not benefit from the diet. It takes a while. Understand though that the low choline diet will not completely eliminate the odor. It will still be there.

For me in my journey I would say that I am just frustrated with trying so hard for so long and not having appreciable results. I am not currently following a low choline diet. I just avoid the major no-nos. YES, from time to time I DO eat a hamburger, or a steak now. Find balance. We are in this for the long haul. It is not hard to switch to chicken and turkey instead of beef for the most part. As you experience the results of eating the no-nos you'll find what is worth it and what's not.

If you suffer from TMAU. I want you to hear this, YOU DO NOT DESERVE THIS! YOU ARE NOT DEFINED BY THIS! This is a difficult road. Find at least one close TMAU buddy, and if you can start talking to a pastor or counselor. You are not alone!!!

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