Diagnosis

help with getting a diagnosis

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Re: Diagnosis

Postby kittycat » Wed Jan 05, 2011 12:51 am

Thanks for your good wishes flower and maisie, I certainly have lots of questions to ask the poor man. Especially about VSL#3 which he recommends on his site. He also mentions alternative therapies, and I recall that he didn't dismiss acupuncture, so he must be open-minded.
You should be taking probiotics flower. I've seen Multibionta in Normandy supermarkets, do they sell that in Belgium? I noticed that my 'daily clear-out' (sorry, just didn't know what else to call it :oops: ) was less offensive, as soon as I started taking it. The more serious ones didn't have the same effect, so now I take both. But I'll let you all know what he says about it all. I hope you had a lovely NYE flower.
A poster on yahoo just said that they've been prescribed 'Impramine' which wiki says is an antidepressant and anticholinergic. The side effects menched would put me off, but I'll ask his opinion, for the record. And allicin/champex/charcoal etc.....
Happy new year maisie, did your colleague read his book yet? I hope so, for your sake :D love kittyx
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Re: Diagnosis

Postby flower » Wed Jan 05, 2011 1:19 pm

Thanks Kittycat,

I had a very happy new year with some very good friends.
They talk about tmau and want to help me with this.
I am very happy I can still visit them and we still trust each other,....
I have only told it to friends who I trust for long long time.

I know I must take probiotics .
...only thing I do untill now is follow low choline diet and using soap ph 5,5.

I must do another test quickly I suppose to become a real treatment.

The GP specialist of Dept of Hepatology and Metabolic center, University
asked me for a finally rapport of diagnosis and urine testings.

I think he will gives me an appointment when he has all the results....

Succes tomorrow, Kittycat, hope you will become a lot of answers.

Flower
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Re: Diagnosis

Postby Maisie » Wed Jan 05, 2011 7:53 pm

Hi Kittycat

I saw my colleague for the first time today since Christmas but he's not shown any sign that he thinks he's had a lovely present from me! No cruel comments either though. :D

I take the Multibionta as well as the Boots probiotic - covering all eventualities hopefully!!!

Good luck tomorrow.

Love Maisie x
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Re: Diagnosis

Postby smelly » Thu Jan 06, 2011 9:22 pm

kittycat,

just catching up with posts after xmas 'break' (from worrying about this!)

your consultant sounds really useful guy. I saw a bit on his interests about 'iron overload syndrome' or something which is something connected to my gut I feel - when I drank a little bit of someones guiness once somepeople were covering their noses and gagging like half hour afterwards and someone made a gesture to me and said something about iron moving through some peoples system quickly because they cant attach it or something - didnt understand but have heard similalr comments before when people seem to be smelling something horrendous and I can t smell anything - they aare a bunch of self taught medics -watch a ot of house on sky channel (diagnosing strange disease by their symptoms!) I have tried researching to see if thhis fits in with dodgy guts and odour bu thavent been able to understand enough to see a connection.Its interesting that he has a connection there somehow.

I have irish and scottish ancestry (there cant be many people who dont!) and I read in a book onbread making that its very common for people of irsh ancestry/birth to have caeliacs disease (intolerance of gluten found in wheat etc.) I have had a negative test resul tfor caeliacs but when I have been eating no gluten products then eaten a few slices normal gluten bread and my stomach has blown up like a balloon. I read there are different levels of having problem withgluten and tests not 100% reliable

I'll check out his breath tests you mention...
smelly
 
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Re: Diagnosis

Postby smelly » Thu Jan 06, 2011 9:28 pm

and kittycat I think you may be on the right track with a gastro/liver specialist - the liver seems to be so heavily involved - they are used to seeing people with liver disease who will be producing a strong bad odour - it would be fascinting to see if he thinks you smell simillar - I would hope that would get his scientific juices flowing as to why an otherwize healthy woman smells like his seriously ill patients :ugeek:
smelly
 
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Re: Diagnosis

Postby smelly » Thu Jan 06, 2011 10:00 pm

kittycat -

I think Ive found the proper site for dr moodie you were talkiing about. Jackpot! This guy is offering all the tests Ive been asking consultants gps nurses about for the past 10-15 years! The NHS people all blanked me, and when I tried contacting private hospitals in scotland they didnt reply or were kind ofvague in a way that disheartened me form pursuing it further (its hard to keep motivation when people tell you you are wasting your money and should just forget about it :? )

I managed to get a test for helo? bacteria (urea breath test?)negative and I pushed for a test for bacterial overgrowth and was grudgingly given one but they used glucose which I read is a waste of time because it is absorbed at very very beginning of intestinal tract so never gets to the bacteria in target area (if you have too many bacteria they give a large amount of waste gas - in response o sugar drink - which is supposed to be detected from your breath) The resuts were never even passed back to gp - they were so unconvinced of the procedure themselves I guess! but I got an unofficial negative from the nurse who was carrying it out.

I ran out of steam for testing around when I got the TMAU test but if anyone has interest in these kinds of tests I might be ableto give some info from when I was researching them. I think they are very worthwhile if you can get them done by soemone who WANTS to do them and willl do them properly . I dont think I can get them done well here. I found a company via bloodborne site that you breath into bags and post them to london lab and they test your breath but I wasnt sure how well that would work (if samples get contaminated by normal air its a duff result.) When I get some energy back I might start on testing route again, since you can get one that just detects smelly compounds in your breath after eating sugar solution and that lets you know if you have a problem eating sugar (which is very useful to know!)

I cant believe his site even says he takes interest in food sensitivities etc. If I had access to this guy I wold see what he could get medone on NHS then Id start paying for tests as could afford them. If he was my consultant he would be able to pull all theinfo together to make sense of it.

If this guy mentions doing a patient study in odour/liver/gastro area let us know - Id be prepared to get down to London a few times a year to see him to do tests or whatever. I dont know how these things work. I think he would need to get funding for it because they usually pay people to take part I think? But I would give my samples for free! ( :oops: whether Im aware of it or not... :lol: )
smelly
 
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Re: Diagnosis

Postby kittycat » Thu Jan 06, 2011 11:22 pm

Happy new year smelly, I hope you ate and drank, and put on some weight!! You can't say that to many people :lol: I thought of all the breath sufferers when I saw those tests offered, but he tells me that they're not on the NHS. I've used private facs a couple of times and it's cost a fortune. E.g. Cancer smear test ...over £500!! changed mole....similar amount. Be afraid...


He didn't know much about tmau, apart from the party line...
Don't eat fish.
Antibiotics work.
Take probiotics.
He'd only ever seen one lady who thought she had it, but he said she had 'a mad diet of fish and garlic every day, and wouldn't change it.' But I must say he didn't dismiss me out of hand, and wants me to take another urine test while on my normal low choline diet, and is also looking into Isovaleric Acidemia.
He..'Then, if you do have tmau2, we can give you antibiotics'
Me...'I'm not sure about that as I think antibiotics gave me/us this' ... He..'No, that's just a coincidence'..you'd probably always had it, but hadn't noticed before'...
Me..'People on the forum have felt very sick and only had improvement for a couple of weeks'
He...'I find that hard to believe, they are such a low dose, they can't make anyone feel sick'
kittycat
 
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Re: Diagnosis

Postby kittycat » Fri Jan 07, 2011 12:08 am

I asked if I could ask him some questions and he agreed but half way thro' he more or less said I'd overstayed my welcome, so these were all I got out...
Charcoal...does not remove nutrients, and should work if we eat something we shouldn't.
VSL#3...good manufacturer, has been tested for quality and has many strains but with all the lobbying in the world, won't be on NHS for tmau :(
He bridled at mention of his theories on Celtic 'disposition' as he considered Celtic to be Irish, Welsh,Scots and Cornish, but 'had got a lot of flack' from historians, who insisted the Celtic race stretched all the way to Rome...
Allicin....had never heard of any benefits for gastric probs...
Lemon juice...not beneficial for gastric complaints
Me...tma is alkaline. He...Is it?
Long intestines...dead common...skeletal abnormalities..... never heard the like....

Anyway, I've got my test and go back to see him in a couple of months, and another Dr. knows we exist. He said he'd like me to see the dietician...another lesson in tmau for someone???? And I think I may take antis for holidays etc. but that doesn't help the rest of you, sorry. love kittyx
kittycat
 
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Re: Diagnosis

Postby flower » Fri Jan 07, 2011 1:08 pm

Hi Kittycat,

Thanks for giving feedback of your appointment.

Flower
flower
 
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Re: Diagnosis

Postby Maisie » Sun Jan 09, 2011 11:35 am

Hi Kittycat

Thanks for the info on your appointment. Shame he couldn't be more helpful but I think people who suffer with this know a lot more than the doctors as we've got a vested interest in doing research on it!

I might bite the bullet and send for some VSL#3 to see if it works.

Happy new year!

Love Maisie x
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