My Appointment

help with getting a diagnosis

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Re: My Appointment

Postby EmptyCup » Fri Nov 02, 2018 6:44 pm

PoetFire wrote:Do you think this consultant is more 'community friendly' than Dr Lachmann ?

If you could get the DNA test done somehow, I would guess you carry 2 or more of the common variants or some other 'variant combo'.
They are taught this is still not enough to make a person 'potentially smelly', but I think they are mistaken.

you could maybe mention to the consultant the recent paper by Dr Wevers et al about new metabolic malodor suspect metabolites .... DIMETHYLSULFIDE and METHANETHIOL .... from a paper in 2017 ... ad-breath/

I have never been in contact with Dr Lachmann myself so I don't really know what he is like. I was under the impression that he was more 'community friendly' out of everyone and that's why everyone wanted an appointment with him. My experience/view of the consultant I saw is based only from this one appointment I had. It could change after further appointments. Hopefully not. Time will tell.

I will bring up the DNA test and article in my next appointment. I know you mentioned the DNA before my appointment but I think I was just so relieved about being able to do the 24 hour test that I forgot to mention it to the consultant. Thanks for the reminder.
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Re: My Appointment

Postby EmptyCup » Fri Jan 11, 2019 3:15 am

I got my second lot of results.

I was praying, hoping, scraping the barrel for a miracle.

Didn't happen.

Negative. ******* ********

:( :x :( :x

Have appointment to see the consultant again. Hopefully I will be allowed a third test.

My figures were better than from my first test. I will post the figures at some point. I know I said that with my first set and I still haven't but there is a reason, I just can't say what the reason is.

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Re: My Appointment

Postby EmptyCup » Fri Mar 01, 2019 10:01 pm


I attended my appointment with the Consultant Specialist.

I was offered a 3rd test thankfully without having to ask but unfortunately it was a spot test which I didn't refuse although I did try, unsuccessfully, to push for the 24 hour test.
It's a shame as this is the same Consultant I previously saw and who was very understanding about the pros of the 24 hour test so not sure why the 24 hour wasn't offered.

So basically I've had 1 spot test, then a 24 hour test and now a random spot test again.

I was advised to do a low choline diet for a maximum of 6 months and if it has no positive effect to resume 'normal' eating after that. Alongside this I have been prescribed:

Metronidazole to be take for 10 days a month for 3 months
Riboflavin to be taken twice a day.

I'm so glad that this is being done even though my tests have come back as negative so far.

I also mentioned to the consultant again about how people who were diagnosed positive on the old test are testing negative on the new test. The Consultant didn't say anything to that but there was a 'knowing' smile. Maybe I'm just reading too much into things but I don't think so... :lol:

The Consultant agreed to a DNA test although when that's going to be done I don't know.
Whilst talking about the DNA test the Consultant mentioned something about possible fault in other genes other than the Tmau one - obviously the Consultant used scientific terms but I don't remember exactly what was said :?

I have to send in a food diary to the Nutritionist every so often to ensure my diet is not too low in choline as obviously some is needed for healthy body function.

I think that's about it.
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