2 YEARS SINCE LAST POST

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2 YEARS SINCE LAST POST

Postby Davey » Thu Feb 28, 2013 2:58 pm

Hello, please can I offload my story so far to you guys.

I last posted here almost 2 years ago, the day before i was going to see the doctor about my apparent odour. Now, two years on Ive seen 3 different different doctors, had two urine tests and now a blood DNA test. The first urine test came back negative and i was met with the doctors opinion that there was nothing more they they could do for me.

So the comments and looks and insults kept coming so I went back about a year later and saw a different doctor. All i really really wanted from this doctor was a referral to either Dr Lachman or Dr Manning as I just wanted to get some confirmation one way or the other and didn't want to be offered silly suggestions by doctors who had never heard of TMAU. So this doctor, who seemed almost determined NOT to refer me, suggested I go for counseling to change the way I think (obviously he thought it was in my head as he couldn't smell me on the day) and maybe see a dietician but eventually agreed to send me for another urine test. I made sure to do the choline load as suggested on this site of eggs and beans at 1pm and 7pm the day before the test which I hadn't done on the first negative test.
Hey ho, the test came back positive!! However, the doctor then says that the eggs and beans that I ate may be TOO MUCH choline and this is why the test is positive?? AARRGHH!So confusing and annoying! Unhappy with the positive urine test ( i have the results from this test if anyone knows how to interpret them?) the doctor then sends me for a DNA blood test and tells me that "this test will be conclusive". To which I asked why was it not done in the first place then??
I have been back to the doctors today to be told that the DNA test came back 'normal' and...... in the doctors words "why are you still pursuing this?" I felt like hitting him but instead got quite uncontrollably upset -as you do when you even begin to talk about this.

I'm a 33 year old male and have suffered insults, jibes, comments, looks since I was 12. Upon reflection, my extrovert self as a teen has over the years become the miserable, isolated, lonely, depressed and completely torn inside person that i am today.

Sorry to rant about this so much but it feels better to get it off my chest. If anyone knows how i can go direct to one of the expert doctors mentioned i would greatly appreciate it. Im sick of hitting the Brick wall!
Davey
 
Posts: 6
Joined: Mon Apr 04, 2011 4:30 pm

Re: 2 YEARS SINCE LAST POST

Postby bigvern » Thu Feb 28, 2013 4:49 pm

Hi Davey,

I have confirmed TMAU via urine test and then via blood test via the geneitic counselling service - I also had my daughter tested and that came back positive.
With your histroy and results I would demand a referal to Dr Lachman on the NHS (he doesnt see private, he is probably the only one who can accurately interperet your results - I would also ask for a copy of the blood test result - mine was quite long and involved (not simply a pass/fail type thing) and there are various mutations of the gene can mean different things.
People have posted their urine test results on here and others have tried to help interpert them but as I said I would seek out Dr L, if your GP refuses to refer you ask for a second opinion from another GP and get them to do it.
Unfortunately many of us have been in similar posistions - took me years and umpteen visits to various specialists before I was diagnosed.
good luck.
bigvern
 
Posts: 116
Joined: Thu Jun 25, 2009 5:37 pm

Re: 2 YEARS SINCE LAST POST

Postby Lisa » Thu Feb 28, 2013 6:54 pm

:evil: Grrrr, this really has got to stop!
I really dont understand that even when presented with the facts, data, info etc etc, that Gp's still cant quite grasp the concept of this disorder, knowing what I know now I would completely bypass the Doctor, and go straight to "the man himself", and I would pester him to contact my GP for a referral, not sure if I should be writing this, but sometimes needs must, and you sound at the end of your tether, so here goes.
Google Dr. Lachmann, all his details should come up, including his phone number, RING HIM, I've spoken to him many a time, and always found he has time to talk, if, for some reason you can't get his number, I'm sure I've got it somewhere.
Good luck, please don't be fobbed off.
Lisa
 
Posts: 412
Joined: Tue Jul 06, 2010 10:35 am

Re: 2 YEARS SINCE LAST POST

Postby Davey » Thu Feb 28, 2013 8:02 pm

Bigvern and Lisa thank you very much for your replies. I do feel at the minute like never going to that doctors surgery again. My plan for tomorrow was to write Dr Lachman a letter explaining my situation so far but Lisa I might take your advice and just phone him. I just dont understand why my GP would hold back from referring me. Is it a cost issue? I said i would be more than willing to pay for the whole thing myself!
Davey
 
Posts: 6
Joined: Mon Apr 04, 2011 4:30 pm


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