REAL test for TMAU?

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REAL test for TMAU?

Postby smelly » Sat Dec 19, 2009 6:20 pm

Hi all,

After reading about TMAU for about 6 years I have finally got the chance to be tested (maybe.)

Its a long boring story about medics looking at me as if Im mad (which probably sounds familiar to people here!) and a final session with a GP a couple of weeks ago where I said my next step was : give up my job / suicide / self treatment with antibiotics via internet - in no particular order, hahaaaha! (Im laughing now, but.....)

I was about to order flagyl on the net and was researching how to repopulate guts with something less smelly, when a tube popped through the letterbox with instructions to fill with urine and deliver to local hospital lab ASAP afterwards. Ooooo, how curious. The accompanying letter was from a gastro consultant I had seen a year ago, (for about 3 minutes, after a waiting list time of 12 months) who had dismissed me at the time with 'I cant smell anything' and ''I dont think you are ill' and 'you are probably already aware that I cant help you.'

Clearly GP has passed on update to consultant that I am now a loose cannon about to go off and they had better get me a test - ANY test to shut me up.

Now, my question is, is this test I will receive the REAL test for TMAU?

I havent found anything anywhere saying that local labs can test accurately for this. Maybe they will post my sample via internal NHS transport to Sheffield lab, but the tubes I have been sent dont sound like the ones people have mentioned (they do not contain any liquid to acidify sample, and I haven’t been told to freeze it or anything.)

I am suitably grateful to be getting any help at all, so will go along with it, but I can remember reading that Donald? had his sample unsuitably tested locally and I am fearing the same may happen to me. Its frustrating because I took all the contact info for Dr Lachmann and Dr Manning along to GP but she was dismissive, and didn’t look at any of it. And I haven’t got any contact with the people who are arranging the test, so I suppose I just have to wait until I get the results and then ask Dr Lachmann if the results mean anything.

Has anyone with a ‘good’ test experience any info to offer about how they collected their urine sample, what the tube was like, if they had to freeze it etc .

Thanks all !
smelly
 
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Re: REAL test for TMAU?

Postby magsie » Sun Apr 25, 2010 12:27 pm

Hi,
I've posted off my urine sample this morning. Having had a blood test FM03 via GP before and that was positive, but that was by a GP down south. I don't wish to ask my GP here again, 'cause he does'nt see what's wrong with me - needs training on TMAU like the majority of them.!
I decided I'd like to get the urine test done, & I've paid Mullvern Laboratories to do that. I ordered the test online, you don't need to pay up front, its just over £193 including post & packing both ways. I ordered it on Thursday night, and received it on Saturday. What came was the invoice with instructions on the back. There's a plastic bag which contains a tiny tube of acid, and a pipette. Then there's a normal sized urine tube, which is placed into a slightly larger tube with some padding around it.
The instructions are to eat choline rich foods for 24 hours before the test, then after catching urine in the tube, you open the acid tube,and with pipette drip the acid contents into the urine and then mix it a little. Then you post it back, it'll go to the specialist in Sheffield & you get the results, it can take upto 4 weeks. There was no need to freeze/fridge the sample - because you're inserting the acid already. For those living outside UK you can use the same lab & post in mail order.
Eating - 6pm Friday I had 2 scrambled eggs & a large tin of baked beans, Saturday breakfast I had toast with a small tin of salmon, I had an ice cream for lunch, and dinner was a small fish/chips/peas serving and another ice cream, so I've had lots of 'forbidden' foods, and drank coffee for the first time in weeks too. I had extra smelly urine & took the sample early this morning. Although my nose is blocked today, maybe that's because i've eaten dairy foods .
I hope the test picks up a high score. I did'nt want to continue eating that way today, 'cause I have to brave the office tomorrow.
I'll post the results on here when I receive them
magsie
 
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Re: REAL test for TMAU?

Postby magsie » Sun May 16, 2010 6:18 pm

Hi,
My email test results have arrived this Sunday afternoon. Its Good News folks, it says I'm TMAU2 - secondary TMAU. Test results say as follows:-
Urine Creatinine 10.80 mmol/L
Trimethylamine TMA 153.3 umol/mmol HIGH reference range 2.5 - 10.09
TMA-n-oxide 1242.4 umol/mmol HIGH reference range 17.0 -147.0
TMA/TMA-n-oxide ratio 0.12 ratio NORMAL reference range 0.05 - 0.21

The info says that because the last figure is within normal range which indicates my liver function of TMA is working, that denotes I'm likely to have bad smells from my breath,sweat and urine due to enterobacterial overgrowth. It suggests contacting GP for course of antibiotics, and gives me 'phone number to contact for
further information.

They have also posted a copy of this out to me, so I'll be able to show that to the GP.
Glad I spent my money on this test, 'cause its validation of my condition. I can also show them at the office who reckon 'its all in my mind' - that's the latest comment from my manager.! Some manager!
Magsie
magsie
 
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Re: REAL test for TMAU?

Postby smelly » Sun May 16, 2010 7:09 pm

Great news Magsie! :)
smelly
 
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Joined: Wed Dec 09, 2009 7:49 pm

Re: REAL test for TMAU?

Postby magsie » Sun May 16, 2010 7:29 pm

Hi Smelly,
Thanks, yes its great to get it confirmed that I'm 'smelly' for a reason!
Magsie
magsie
 
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Re: REAL test for TMAU?

Postby PoetFire » Mon May 17, 2010 12:33 pm

magsie wrote:Hi,
My email test results have arrived this Sunday afternoon. Its Good News folks, it says I'm TMAU2 - secondary TMAU. Test results say as follows:-
Urine Creatinine 10.80 mmol/L
Trimethylamine TMA 153.3 umol/mmol HIGH reference range 2.5 - 10.09
TMA-n-oxide 1242.4 umol/mmol HIGH reference range 17.0 -147.0
TMA/TMA-n-oxide ratio 0.12 ratio NORMAL reference range 0.05 - 0.21
...


That's good news Magsie. Not only do you have the highest TMA result I have seen (a bad thing), you have a super-human TMA-oxide result to match ! (a good thing). Ironically you are producing so much of both compounds that your ratio is deemed 'normal'. I just had a look at Nigel Manning's pdf on the mebo website, and out of 716 test results apparently yours has roughly been matched by about 6 results. I'm guessing your Dr will let you retest, saving you money.
PoetFire
 
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Re: REAL test for TMAU?

Postby magsie » Mon May 17, 2010 6:46 pm

Thanks Poetfire,
I'll have a look out for the PDF you mentioned to check my place on the ranking! I would have been perplexed and dissapointed if my results had come back saying there was nothing wrong with me after all these years of suffering from odours.
Magsie
magsie
 
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