I'm coming around to the idea...

antibiotics, nullo etc. - what works for you?

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I'm coming around to the idea...

Postby kittycat » Sun Feb 17, 2013 7:13 pm

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Re: I'm coming around to the idea...

Postby Lisa » Mon Feb 18, 2013 12:45 pm

Gulp, whoa, you're on ya own there Kittycat. :shock:
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Re: I'm coming around to the idea...

Postby kittycat » Wed Feb 20, 2013 2:17 pm

:lol: Lisa... I've even picked my clean living donor friends, just in case.. No rush to ask them yet though, I bet it's not even being offered to people dying of C. Diff in our terrific/terrible NHS hospitals :cry: kcx
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Re: I'm coming around to the idea...

Postby robert123 » Wed Mar 06, 2013 11:26 am

Hello Kitty,
Just to let you and everyone else know that there doesn't seem to be too many doctors in the UK willing to do fecal transplants. It's a pity as while it sounds kind of disgusting it does seem to have great potential - http://www.wired.com/wiredscience/2011/ ... ants-work/
Very interestingly in a web seminar Dr Lachmann was asked about fts and he said that it could well work in secondary tmau cases, it should clear out the old, odour producing bacteria and insert new ones. Unfortunately though he felt it could be a very short term solution as due to the environemntal factors in our guts the old bad bacteria may just grow back again. He's not saying they definately will though but it could happen.
I live in Ireland but unfortunately I don't think there's any doctor willing to do the procedure here. It's been a few months since I've looked at whats the story in the UK so this could be out of date but from what I can gather there is only one doctor in the NHS willing to do fts. I think he's called Dr MacConnachie (or something like that) and is based in Glasgow but unfortunately he only does it for c.difficle patients so I don't think you would have much luck contacting him.
The only other place i found was more of an alternative medical clinic - www.taymount.com If you look it up you'll see it's pretty expensive £4000 for a ten day treatment. If anyone else knows of somewhere else in the UK which does fts I'd be so grateful if you could let me know.
I'm really thinking of going to Taymount, it will leave me broke and it's no guarantee of success I guess but I'm so desperate now I might well give it a go.
If you Kitty or anyone else has thoughts on fts I'd lvoe to hear them
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Re: I'm coming around to the idea...

Postby kittycat » Wed Jul 03, 2013 8:02 pm

http://shar.es/AqTDO

The treatment is gaining ground in the US Robert :D

Would you take the triple wrapped gelatine capsule Lisa? Yum :mrgreen: Kcx
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Re: I'm coming around to the idea...

Postby Lisa » Thu Jul 04, 2013 10:18 am

Would make a change from rice Kc. ;)
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Re: I'm coming around to the idea...

Postby Suzie » Sat Jul 13, 2013 9:07 pm

Hi Robert and Kittycat,

Have just read this post and done some Internet research about FT - I'd definitely give it a go as I feel my problem is because of bad bacteria rather than FMO3 disfunction - I would do / try anything that might give me my life back.

Robert, did you go ahead with Taymount? They even list TMAU as a condition on their website.

Kittycat - did you do anything about FT since your last post?

Pippa
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Re: I'm coming around to the idea...

Postby kittycat » Fri Jul 19, 2013 11:02 am

Hi Pippa.. I would only have FT if it was available in the NHS, and recommended by a specialist to be honest. I still think it's the way to go personally, and will be a guinea pig if they ever want one. The only other research in our favour is the one mentioned by Malory, afaik... Kx
Last edited by kittycat on Wed Jul 24, 2013 2:25 pm, edited 1 time in total.
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Re: I'm coming around to the idea...

Postby Suzie » Sun Jul 21, 2013 1:19 pm

Hi Kittycat,

I am seriously considering going ahead with doing this privately as TMAU is totally destroying my life - my job is on the line and it has wrecked my social life and any chances of a love life. I feel I can't move on with anything until this is sorted and would be willing to pay anything if there is a chance of curing it.

I would obviously prefer to do it on the NHS but that doesn't seem to be an option at the moment as the only doctor is Dr MacConnachie in Glasgow - but he only does it for C. difficile. www.bbc.co.uk/news/health-15113440

I have been speaking to Glenn Taylor at Taymount and have an initial consultation booked with him this Wednesday. He said that he's had some enquiries about TMAU but of course cannot give any guarantees that it will work as he's never treated anyone with TMAU. He did run it past his TMAU 'guru' in Australia though - Profesor Borody whose words were: "I'd really go ahead with the FMT in TMAU. It's not genetic but feels like it is.. Antibiotics and diet improves ... must be flora driven. You will need to write it up so pre and post data needed".

I am totally happy to be a guinea pig in this treatment (as revolting as it sounds) as I don't see that it holds any big risks. According to their website it is a 10 day treatment with a cost of £4,000 which is a huge amount I know but I would pay it if it works - anything to get my life back.

I know that some people have already been in touch with Taymount about FMT...if there were a group of us to do the treatment as a pilot group I'm sure we could negotiate on cost - as it's in his interest to have some data on the effects post treatment. If anyone else would be interested in going ahead with the treatment could you let me know before Wed and I could talk to him about it? Am just using Wed's consultation for fact finding at the moment - have not made any commitments to go ahead at this stage...

Suzie
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Re: I'm coming around to the idea...

Postby PoetFire » Sun Jul 21, 2013 3:56 pm

I currently don't know enough to decide about fecal transplant. Don't know what to think of it yet. I do believe that most/many (perhaps all) of us will have a gut dysbiosis of some sort though.

I saw a programme where London researchers were using FT but I don't recall their name. I took a quick look on pubmed and found this for inflammatory bowel disease. Maybe they will help but I'm guessing not
http://www.ncbi.nlm.nih.gov/pubmed/21682755

The lead researcher for the above paper seems to be Dr Ailsa Hart
http://www.stmarkshospital.org.uk/consu ... sa-hart/75

Here is my pubmed search of 'fecal transplant'
http://www.ncbi.nlm.nih.gov/pubmed/?ter ... transplant

I have a feeling there will be researchers in London using this method but perhaps do not treat patients other than in studies.
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