Sheffield Test Result Survey

help with getting a diagnosis

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Re: Sheffield Test Result Survey

Postby sweatybetty » Sun Feb 18, 2018 12:52 pm

dave wrote:I recently shared my test result with one of the moderators on rareconnect.
I was tested in September 2017 and finally got a copy of the result two weeks ago, so I'm definitely in the new test category. My test came back "Normal".
I only wish "Normal" can describe what I go through on a daily basis.


I'm so sorry that you are not able to access support - it's incredibly frustrating. A few of us are concerned about the test and hopefully more information will be provided at the meeting on the 1st March. I'm sure there will be an update posted either here or on rare connect.

With your permission it could be mentioned (anonymised) that an individual has posted on TMAU having tested normal (under the new test) but they are experiencing the problems of the condition. Dave is it that you are aware of an odour yourself or is it that others are reacting negatively / saying you have an odour ?
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Re: Sheffield Test Result Survey

Postby dave » Sun Feb 18, 2018 3:17 pm

sweatybetty wrote:
dave wrote:I recently shared my test result with one of the moderators on rareconnect.
I was tested in September 2017 and finally got a copy of the result two weeks ago, so I'm definitely in the new test category. My test came back "Normal".
I only wish "Normal" can describe what I go through on a daily basis.


I'm so sorry that you are not able to access support - it's incredibly frustrating. A few of us are concerned about the test and hopefully more information will be provided at the meeting on the 1st March. I'm sure there will be an update posted either here or on rare connect.

With your permission it could be mentioned (anonymised) that an individual has posted on TMAU having tested normal (under the new test) but they are experiencing the problems of the condition. Dave is it that you are aware of an odour yourself or is it that others are reacting negatively / saying you have an odour ?



Yes you could mention as suggested, I don't mind.

Initially it was more of people's reaction and I still struggle to smell myself especially when other people are reacting very badly around me. However, I occasionally get a whiff of fecal or ammonia smell, and sometimes when I smell my finger tips, I notice a really odd smell like meat or fish that has gone off. As I say, I don't always smell myself, but I definitely know when people can smell me, especially when I am at work, I certainly can't miss their reactions or the disgust on their faces, or the coughing, sneezing or covering of their noses.
My GP thought I would be relief when I got the test result as normal. He'd on a number of occasion suggested I go for counseling as he thought it is all psychological.
I think for most people, just having people (medical professional, family or friends) just believe them, that they do have a debilitating disease, which even though is not easily treated or cured will go a long way.
What this change in the test has done is simply pushing a lot of people into desperation, because no one believes you but yet you go through this condition and the daily mental, emotional and physical challenge that comes with it. I take various supplements and I've tried various remedies to no avail, all based on information read. I just pray that we don't start hearing about people committing suicide because of this. There are many sufferers out there, that goes through hell of a lot of things to maintain an above normal physical hygiene, however because of this malodorous which is not recognized by society, the first thought that crosses people's mind when around sufferers is that the sufferer lacks proper hygiene.
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Re: Sheffield Test Result Survey

Postby PoetFire » Mon Feb 26, 2018 6:32 pm

survey update
I have about 20 viable results now .. with 4 new ones.

Nigels old test used to say the NORMAL tma should be >2.5mmol (?)
but all the 4 new tests are <1 tma

TMAO in new tests also seem to be much lower on average whereas the old test could vary greatly.
new test between 10-75 mmol (?)
old test usually the same but could be in the 100's

I doubt anyone with the new test will get a TMAU2 diagnosis.
whereas the old test it was the majority of us.

The survey is still open.
I will try to make a graph sometime (need to remove unviable ones, work out how to etc)

Sheffield IMPLY the new test filters out 'false positives' (i.e. false TMAU cases).
IMHO I think the old method showed real cases better.
Its as if the new method filters out 'mild' cases.

survey form https://goo.gl/FeBLaZ

edit : I could be getting umol & mmol mixed up, but dont think so.
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Re: Sheffield Test Result Survey

Postby PoetFire » Tue Mar 06, 2018 6:07 am

update :

5 new test results now.
All of them under 0.7 free TMA.

The old test said normal TMA starts at over 2.5

1 possible theory :
1 thing Im thinking is perhaps the old test accidentally picked up other amines or fmo3 substrates THAT WE SMELL OF, and bundled them as TMA (interference).
Maybe the new test is pure TMA.
Could be way off here. So that would mean the old test was a better reflection of our smells.

survey https://goo.gl/FeBLaZ
PoetFire
 
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Re: Sheffield Test Result Survey

Postby PoetFire » Fri Mar 09, 2018 7:27 pm

survey so far : 22
17 old test
5 new test

These are the TMA levels.
As can be seen the NEW test TMA levels are like 10-80 times less than the scale of the OLD test.

Image
Image

TMAO levels :
Not such a difference in TMAO levels, but it looks like the average is lower for NEW test.

TMAU2 : possibly they have abandoned this option as an 'interpretation' (tbc)

Survey still open
https://goo.gl/FeBLaZ
PoetFire
 
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