went to the doctor today

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went to the doctor today

Postby gemtree » Fri Aug 02, 2013 4:50 pm

Hi I have been reading these forums for a couple of weeks i am 42 female and I think I have had this for a long time, but I went to the doctors today and he said why would you need the test if theres no cure? I said I just want to know and ended up getting quite tearful when explaining about my new job and reactions from there. So in the end he said he would refer me as he has never heard of tmau before and will also refer me to endocrine?

Its such a nightmare but anyway hello and thank you for these forums they have been a support.
gemtree
 
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Re: went to the doctor today

Postby gemtree » Fri Aug 02, 2013 5:02 pm

Just found this petition when googling

http://epetitions.direct.gov.uk/petitions/42219
gemtree
 
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Re: went to the doctor today

Postby Fenella » Sat Aug 03, 2013 6:15 am

Hi I have just read your post and just joined this site. Well done for going to the doctors I am sorry yougot upset. I notice you are in your 40's have you always had Tmau?
Fenella
 
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Re: went to the doctor today

Postby bigvern » Sat Aug 03, 2013 9:48 pm

Hi Fenella,

Sorry your GP reacted this way, take a small crumb of comfort form the fact that this ignorance is not unusual, I would ask for a second opinion, print off the test protocols from the main site and demand a test, although not curable there are antibiotic protocols which have certainly helped some people, these obv have to be prescribed by a GP. Be assertive

If he will refer you, you need to see Dr Lachmann in london, hes' the expert, most endocrines will not have heard of tmau IME.
(I am seeing an endocrine for another issue (adrenal) and he has never heard of TMAU)

Dr Robin Lachmann PhD FRCP
Consultant in Metabolic Medicine
Charles Dent Metabolic Unit
Box 92
National Hospital for Neurology and Neurosurgery
Queen Square
London WC1N 3BG
bigvern
 
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Re: went to the doctor today

Postby dodge1980 » Wed Aug 14, 2013 12:14 am

Hi Gemtree,

I got my diagnosis just last week and believe me the circuitous route that got me there was unbelievable. But tenacity is the key. In the mean time I found activated charcoal tablets helped settle my symptoms while I was waiting for a diagnosis. You can pick that up at any health food store. As you are in a new job you may find that helps in the interim. Also I just ordered some "body mint" tablets online. They contain copper chlorophyllin which is used by hunters to mask their scent whilst hunting. I'm going to take both together. I'll keep you posted on my progress.

I am 33 and have suffered through this most of my life. Don't give up. Also wearing another hat, tell your new boss your having investigations into a medical condition for a potential metabolic problem. This puts a duty of care onto them to protect you from bullying in the workplace. I have suffered from some pretty nasty remarks/behaviours from people and once I started telling them I may have a medical problem causing the smell it soon got them to back off.

I hope this helps.
Take care and don't let them wear you down.
dodge1980
 
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Re: went to the doctor today

Postby gemtree » Sun Sep 29, 2013 12:08 pm

Sorry to take such a long time to reply. I have been trying to work out how to get the smell down after some upsetting days at work, and trying to build myself up to post again.

Hi Fenella I believe I have always had tmau yes, I had it during puberty though no one knew what it was I have some horrible memories of the smell of urine filling a small school bus and everyone assuming its a hygiene issue and wondering why mild soaps didn't work and strong ones didn't work for long enough etc etc.

Bigvern thanks very much for your advice I have had an appointment come through for November but it is as you state local hospital endocrinology, so I have just emailed Dr Lachmann (as its a Sunday) to ask for his advice on how to get an appointment with him.

As for work I am now in a side office where I can open the windows without bothering people with my smell too much, I still get really bad days but am taking Champex, Chlorophyll, Spirulina, Candex, Vitamin B2 since I last posted which are helping, though its still not gone entirely. I have noticed when anxious it gets a lot worse like if I have a dentist appointment. It has really helped to read of others experiences on this site and elsewhere. I am quite shy, tend to keep myself isolated so these forums are a great support to me.
gemtree
 
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Re: went to the doctor today

Postby idealist » Mon Sep 30, 2013 11:26 am

Where does your smell come from?

is it you breath? your feet? your whole body etc... if it is your whole body? Try and control your diet (sensibly) and continue to see if the supplements work for you (DON'T TRY ANY NEW SUPPLEMENTS UNTIL YOU KNOW IF THE OTHERS HAVE OR HAVE NOT WORKED) . Don't forget a good probiotic and try to refine your sugar intake. I would also recommend Bionsen -Total-Body anti-odorant (a crystal deodorant, activated by water for the whole body- but make sure the product says Japanese Spa treatment)- and use Bionsen stick & spray etc... Use only sensitive products (when bathing) use non-fragrant products (unless applied to your clothes and not directly to your skin/or light fragrance products such as lotions-like aloe-vera). Also Trust (wash off underarm product) from boot/amazon is really good (that used in conjunction with Bionsen) .

If you buy on sale/special/use reasonably than you can spend that much on all the above....

If it is your breath there are only a few good products but I am not sure where you think the smell is coming from....
if you are also mentally broken see a counsellor/ or a healer

The main thing is try to relax!
idealist
 
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Re: went to the doctor today

Postby LJNLindsay » Tue Oct 01, 2013 12:05 am

It's so nice to hear that your GP has at least decided to refer you for testing. That must be a relief for you in that respect.

My (useless) GP still refuses to budge. She just won't, or cannot, see why I need to know one way or the other.

But, with my mental health *history* it is, in her mind, all in my head.

Just began a new course today in business administration, after 12 years of living as a recluse (mostly due to my depression/anxiety/social phobia, etc. Which was all in place before this belief that I have B.O came up :-(

Just *venturing* out there, though the paranoia does take the enjoyment out of everything, sigh.

Anyway, good for you. I hope you'll find an answer one way or another...

Linds x
"When No One Else Cares; My Dogs' Still Love Me"
LJNLindsay
 
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Re: went to the doctor today

Postby Ms Bananas » Sun Oct 06, 2013 7:45 am

Hello Gemtree

don't think taking Spirulina is such a good idea, it's algae as far as I know. Also chlorophyllin had a really bad effect on me, so it doesn't help matters with everyone, try to make sure it's not making things worse for you. Take care.
Ms Bananas
 
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Re: went to the doctor today

Postby gemtree » Sun Oct 06, 2013 2:28 pm

Idealist The smell is all over (from the skin), I do get bad breath too. It comes and goes. I do take holland and barrett acdidophilus which helps. Since I started reading up on tmau I stopped the egg diet I was on at the time (a protein diet to lose weight) which helped a lot! Didn't realize egg was one of the main triggers till then so that has saved me a lot of misery. I hardly eat protein now except some chicken and really cut down on dairy, beans and eat more plain pasta and rice.

Ms Bananas I know the spirulina and chlorella is helping me as the smell got less strong when I started taking them, and I have more energy and feel better, so thats why I continue, I suppose everyone's body reacts differently.

Good luck to you LJNlinsey, though I find it really nerve wracking going out to work, it is also great to go out and about after being isolated so I wish you the best. As to your GP she doesn't sound too helpful, are you able to see any other GP's or even go to another practice to get the test that way?
gemtree
 
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