Need more people to speak out

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Need more people to speak out

Postby B407 » Thu Jun 25, 2009 2:22 am

Hi all,

I am a new member. I am suffering from a condition that has baffled my doctors. I have done my own research and came across TMAU. I have tried to change my diet as the articles suggest. However, I still have an odor. I have gone as far as not eating all day and only drinking water and taking vitamin supplements. This has not helped either. Perhaps, I did not do it for a long enough of a period to see the desired results. I am willing to fast for a few days to get all the choline out of my system, however will this really work? Not being able to eat meat, legumes and milk products among a whole lot of other foods, has only caused me to get stressed out and feeling deprived.

Does anyone know if sweating profusely is a symptom of TMAU?

My symptoms are:

Foul breath (20 minutes after brushing my teeth, I have a bad taste in my mouth).
Pungent general body odor (underarms -- sweat and smell even with deodorant on, head -- sweaty and smelly after one day of being washed).
Foul smelling vaginal discharge (however, when I drink lots of water, it seems as if the smell lessens).
Sweating profusely (even under conditions I have done many times before. For example, eating a hot meal or sitting under the hair dryer).

I am more stress out due to increase workload (I feel this has worsen my symptoms which in turn causes me to stress out more)

I am in a dire situation, please help!
Who can I turn to here in the United States? If I have to go to the UK, I will!
Please help!!!

Sincerely,

B407
B407
 
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Re: Need more people to speak out

Postby bigvern » Thu Jun 25, 2009 5:59 pm

Hi there,

my name is vern and I suffer from tmau, I live in england uk. (male 30 years old)

It took me years to get finally diagnosed and it was a slight relief to know I wasn't imagining it.
I know how you must be feeling right now..

I do know that tmau does not in itself cause excess sweating, although my Dr says that the constant stress of thinking 'shit - i must be smeeling bad' can increase sweating and therefore the odour released.

I have also had my daughter tested and unfortunately she will have transient tmau, which my dr suggested can be worse in girls around puberty and menstruation

To be honest I think tmau is really quite specific in that the smell most people describe it as is that of rotting fish - has anyone ever commented anything like that (I used to get called 'fish head')?. I myself cannot smell the odour on myself, though obviously others can. There are other causes of malodour and you may fall into that category.

On a positive side, if it is tmau then it can be 'managed' to a degree, I regulary take prescribed antibiotics which flush out the 'stuff' causing the smell from the stomach.

During my own research I came accross a place in USA which deals specifically with tmau and also other malodours
heres the link:

http://www.monell.org/contact_us/tmau/

That would be good starting point for you I think. Let's know how you get on. I know the board admin on here myself, I thnik they will reply when they get a minute.

good luck and try to stay positive, use your stress to find a diagnosis as quickly as possible.
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Re: Need more people to speak out

Postby B407 » Thu Jun 25, 2009 8:18 pm

Hi All,

Thank you Bigvern for responding to my post. I will go to the website you provided. I hope that I can manage my stress levels and use it as motivation to find a way to control this disorder.

Once again thank you for writing. Keep in touch. Hopefully we can provide encouragement to others suffering from this disorder.

Sincerely,

B407
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Re: Need more people to speak out

Postby admin » Fri Jun 26, 2009 12:14 pm

Hi b407,

I would go along with big vern’s suggested starting point; even with a waiting list at least you are taking a step forward. I would also point you own Dr towards the monell site. The main advice I would give is to be assertive with your own Doctor and explain calmly and clearly your concerns and that you want them addressed.

I am not a Doctor or an expert but I would not necessarily assume at this stage that you have TMAU, however you can treat yourself as such by restricting your Choline intake.

No eating all day is something I went through when I was in despair and had no knowledge of diet. Believe me; this will only make you feel less able to deal with the issue. You can control the amount of Choline by eating the right foods:

http://www.nal.usda.gov/fnic/foodcomp/D ... holn02.pdf lists the content of choline in foods

http://www.nutritiondata.com/facts/food ... kfc/6534/2

This allows you to search for the Choline content in any food.

Try and keep the stress levels down as much as possible – easier said than done I know, and remember you are not alone and have already made friends in the UK!
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Re: Need more people to speak out

Postby B407 » Sun Jun 28, 2009 10:46 pm

Hi All,

Thank You Admin for the writing back and providing the link. I have a question. The article said "in 1998, the Food and Nutrition Board of the Institute of Medicine established dietary recommendations for choline intake, estimating an Adequate Intake (AI) at 550mg per day for men and 425 mg per day for women." Is that statement true for those suffering from TMAU? Some other sites suggest avoiding broccoli, nuts, milk, beans etc. However according to the choline chart there is only around 18-40 mg of total choline in for example, broccoli. Can I have a few broccolis and watch the amounts of choline I eat so it doesn't surpass 425 mg? Not that I like broccoli but it is very nutritional. But I find that it and a lot of the other foods we should avoid have very strong odors. Should TMAU sufferers avoid them because they contain large amounts of choline or because they have strong odors? Please reply when you get a chance! If there are any researchers out there who can give more advice, please do.
Thank You,

B407
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Re: Need more people to speak out

Postby admin » Tue Jun 30, 2009 7:17 am

I am not sure if there is a recommended daily minimum amount of choline, I just know that choline is a precursor for TMAU and consumption should therefore be reduced. I think the avoidance of broccoli is mentioned because the amounts relatively high compared to other foods in the same group (ie vegetables) and therefore you should, if you can, choose another food from that same group.


I personally try and avoid all foods with strong odours as if it’s present in the food then I guess it may present itself when consumed. As an example I avoid any strong cheese and other foods that you instinctively know smell bad when they go off. (eg. Cabbage)

I am starting to compile a list of FAQs and will include your specific question about quantities of Choline. Please bear with me on this (I have access to am metabolic dietician)
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Re: Need more people to speak out

Postby lexiblu216 » Fri Jul 10, 2009 12:24 pm

with ref to the question about broccoli, i read in a science paper that its not because its got a high chloine content but because all cuniferious veg including broccoli reduces the body's Fmo3 prodution,
if I missunderstood this and have it wrong please let me know :?:
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Re: Need more people to speak out

Postby admin » Fri Jul 10, 2009 1:54 pm

Hi lexiblu,

welcome to the forums, are you diagnosed with tmau?

Certainly sounds like you know your stuff, never heard of if put like that, but I will stand corrected and thanks for the info. ;)

I'll add that point to a list of faqs I'm compiling, is there a link to the paper on the web??

speak soon..
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Re: Need more people to speak out

Postby lexiblu216 » Sun Jul 12, 2009 2:33 am

hi admin

not tested yet but due to go in on the 15th july to arrange testing, :D i'm one of the lucky ones inso much as my Dr knows about TMAU and is very open and helpful.

i've has this since i was 15 now 40 but it was only 18 mths ago that i found out it had a name, since then i have tried to find out as much as i can about this and other similar conditions in the hope of trying to understand it and increase my own quality of life.

i have bookmarked, saved and sometimes hard copied as much of the relevant 'science stuff' that i could find ( and understand! ) so while it may take some time to locate the article i will gladly do so, will also dig out anything else that might be relevant or useful

speak soon

lexiblu216
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Re: Need more people to speak out

Postby admin » Mon Jul 13, 2009 5:51 pm

Hi l,

Thanks very much for the links, I've posted them on the 'web links' page.

When I was diagnosed I was put in touch with Elizabeth A Shephard, (one of the authors of the gene review) via the genetic councelling service.
She was very good and I had my daughter tested as well (gene sequencing they called it)

I'm 41, and had it since my mid-late twenties and am lucky as well in that I have been diagnosed and am under the care of a dr who is an expert in trimethylaminuria.

If you can think of any questions you want answered please post them in the FAQ section of the forum so I can get a list together which Dr Lachmann has agreed to answer.... :P
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