This could be amazing but I have some doubts

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This could be amazing but I have some doubts

Postby robert123 » Mon Oct 28, 2013 11:29 pm

http://www.mytummytantrum.com/2013/10/2 ... -for-tmau/
Hi all, I think everyone really should have a read of the article above on the excellent my tummy tantrum blog.
Fecal transplants, however yucky the concept is, are something that, it seems to me, hold out great promise for us sufferers and whats described above seems to back this up.
However there's two things which I would love to see clarified. Firstly obviously it would be great to hear from the patient herself, like without wishing to invade anyone's prvacy I wonder does anyone on here know of this lady who felt she is cured. I don't for one second want to cast asperions on people's honestly but when someone who's offering a very expensive treatment says one of their patients got cured then it would be nice to have some independent verification.
Also perhaps more importantly has the success she's had continued? Like though I feel that I smell pretty constantly sometimes I don't seem to be too bad and also a lot depends on the type of people you interact with - some can be kind and considerate while others are the exact opposite. So a person proably couldn't judge for sure as to whether they smell on not going by a few experiences in a cafe or a tube journey.
The last part of the statement really confuses me, hopefully someone with more expertise than I can explain it to me. I never heard before that gut bacteria can produce fm03 (at least I think that's what being said here?) Secondary tmau is caused by particular gut flora which produced too much tmau for the liver to convert it all. So the reason given for the apparent success of the procedure doesn't make sense to me, I thought fmt implants would work not by producing fm03 but rather by not producing tmau. Am I wrong on this? Would love to hear what everyone else thinks, thanks.
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Re: This could be amazing but I have some doubts

Postby Suzie » Sun Nov 03, 2013 10:56 pm

Hi Robert,

I would be very interested in being part of the 'formal trial procedure' that Taymount is talking about. I actually had a consultation with Glenn Taylor in the summer about the procedure but that was before he had treated any TMAU patient. The no TMAU patient results plus the cost of £4K is what has stopped me booking the treatment so far.

Yes, I agree with your questions 1. about whether symptoms disappear in the long term - but prob too early to tell as I assume this patient only did the treatment in Sept '13 at the earliest. This was Dr Lachmann's concern when I asked him about FT...although at my last consultation he said he thought FT will become a more common treatment in the future due to its success rates with other gastro disorders. 2. I also don't understand the part about FM03 enzyme production in the gut. I, like you thought it was about overproduction of TMAU by gut bacteria.

Have you had any contact with Glenn at Taymount about FT?

Suzie
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Re: This could be amazing but I have some doubts

Postby robert123 » Tue Nov 05, 2013 10:37 pm

Hey Suzie,
Thanks for your reply. I did contact Glenn early this year but to be honest with you I was a bit coy about mentioning my odour condition as in my experience doctors seem to be quite dismissive when you mention it. I was really glad to see then that Glenn knows all about tmau and affiliated disorders. I was sent out a brochure, I'm guessing you were as well, which detailed exactly what the procedure would be, the diets you have to be on before and after. It does look pretty impressive alright.
In one way I'm sort of happy you are a bit mystified about the gut flora producing fm03 comment also as I was beginning to think maybe I had completely misunderstood what secondary tmau was about.
I haven't got back in contact with Glenn recently but perhaps I should now. It's a pity it's so expensive, for me also there would be the expense of going over and staying there as I live in Ireland.
The guy that runs that tummy tantrum blog told me that he was in contact with an odour sufferer who got five sessions of fmt done by Dr Borody in AUstralia. Unfortunately it didn't seem to cure his odour though some of his other digestive issues did get better.
You know I couldn't care less about the money if i knew it would work, it would be better than winning the lottery for me if it could rid of my smell but for an unproven treatment it is a bit scary to be handing over so much money.
I'm really between two minds at the moment as to whether I'll go through with it, may I ask how do you feel about it?
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Re: This could be amazing but I have some doubts

Postby Suzie » Wed Nov 06, 2013 4:13 pm

Hi Robert,

I feel exactly the same way as you do about FT - the money is a lot but if it were to work, it would be a small price to pay to get my life back. I have tried every diet under the sun, countless supplements, antibiotics and probiotics, CBT, alternative medicines and relaxation therapies, seen so many doctors....but I still have absolutely no control over this horrible problem. Some days it is OK, other days just awful and I can't work out what triggers it. My feeling is it's both diet and hormones but I can't be sure. It is so consistently inconsistent.

I saw a Gastro Consultant last week - Dr Ailsa Hart at St Mark's Hospital in Northwich Park, Harrow. She has done several clinical trials of FT for patients with C-Difficile and the results have been very successful - there's been lots in the press about this and her research is in one of the links in this section I think... The research is only for C Diff though unfortunately so I/we wouldn't meet the recruitment criteria for the trial and FT is not offered on the NHS in the UK for anything other than C Diff (yet!).

We discussed my condition though in depth and talked about Taymount and she said that she didn't think there would be any harm in trying it. I am going back for a follow up appointment with her in December - she did say that she would be happy to review the donor screening process etc for Taymount and that she would see me for pre and post analysis if I wanted - I don't think this would change the cost but at least there would be input from a leading doctor in the field...

I might well get in touch with Glenn again at Taymount to ask him a bit more about this patient and the trial that is talked about in the blog - if you want to call me, I would be more than happy to chat - just send me a PM with your number.

Suzie
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Re: This could be amazing but I have some doubts

Postby Glasgowguy » Fri Nov 08, 2013 8:58 am

Hi suzie or Robert. I would be willing to donate upto £50 for someone on here to try FT. I reckon it's probably our best hope in this generation anyway. If others would donate then we could send someone who would come back and give an honest opinion. At £4k it's a lot. But if it really worked. I would pay £40k to get it done and try and salvage something from this horrid life.
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Re: This could be amazing but I have some doubts

Postby robert123 » Sat Nov 09, 2013 3:34 pm

Hi GG,
That's a very kind offer of yours, thanks so much. To be honest if there was a large amount of money donated I wouldn't turn it down, I'm guessing you wouldn't either Suzie or anyone else for that matter. Unfortunately there probably isn't a big enough pool of donors for that to happen. Definately though if there's anyone out there on the cusp of going I'd put in 50 also. I know Malory contacted Glenn before, not so much for herself but on behalf of this community. She asked whether there could be a group discount if a few of us went together but unfortunately Glenn felt that it would be uneconomical. Actually Malory said also, I'm sure she wouldn't mind me sharing this, that she has one worry about this procedure, namely what happens to all the old "bad" bacteria. Like dothe implants just push it out or what. I guess that's one more thing to consider.
I totally agree with you GG about the cost not being an issue if you could be sure it would work. It would be better than winning the lottery for me if I could get rid of my smell. It's a pity Glenn doesn't offer a treatment to one of us at a much reduced rate as if it worked there probably would be a mad rush of people from here wanting to get it done then.
Hey Suzie sent you that pm, am interested to hear too what Glenn means by hoping to set up clinical trials. I must say you really put me to shame in your efforts to cure yourself. I've tired a lot of stuff too but in a hap hazard fashion and not probably for long enough either. That doctor of yours sounds really understanding, wish I had a doctor as caring :(
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Re: This could be amazing but I have some doubts

Postby PoetFire » Mon Nov 11, 2013 12:41 pm

If it was something people wanted to try then maybe they could try using a crowdfunding site like indiegogo. Really these sites just act as a page on the net to collect the money and take a fee but I guess they have some respectability. I think they take like 13% if you don't reach your total or 9% if you do. Then again there is the 'anonymity' problem. Often these sites say you can donate anonymous but they make personal details available in a way you don't realise. The same psychology as Facebook. So you can never be sure your anonymity is respected. It is daft because I would guess if crowdfunding sites witheld personal information from the public they would raise much more money.
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Re: This could be amazing but I have some doubts

Postby robert123 » Mon Nov 11, 2013 10:11 pm

Hey Poetfire,
That's a very interesting idea, thanks for posting it. Looking around the forums there are a fair few people interested in fts for odour conditions so maybe some money could be raised but perhaps not that much, who knows.
Actually if you don't mind me asking Poetfire what is your take on what was said in the article about the new bacteria being able to produce fm03? Does that make sense to you? And also would you ever consider some point in the future going for the procedure yourself, if that's not too personal to ask? It's just that reading your posts you obviously have an extremely good grasp about malodour conditions in general, or at least as good as anyone could have seeing how medical science is so lacking in coming up with any answers to our problems.
Thanks again - Robert
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Re: This could be amazing but I have some doubts

Postby PoetFire » Wed Nov 13, 2013 2:18 pm

Hi Robert. I don't know if new bacteria (presumably friendly) would produce FMO3. Maybe they do but it's not something I have heard. It might be possible that they naturally do. I think the practitioner is maybe getting mixed up a bit. I don't know. I have thought that if FMO3 could get to the gut it may oxidize sulfides and amines there before absorption. The official line from medical professionals is that FMO3 would be destroyed in the stomach and they think of it more as acting in the liver, rather than the notion of making it present in the gut. I doubt any expert would 'sanction' the idea of taking FMO3 orally (or anally) soon, so we won't find out until someday. I also wondered if perhaps probiotics could be genetically engineered to include FMO3 and get to the gut that way but if FMO3 could just be taken orally (or in say an enema) then maybe that wouldn't be necessary.

It's all blue-sky thinking at this stage.

I think in principle the idea of trying to implant 'healthy' microbiota to the colon is a sensible one, although I'm a bit wary about the idea of FT. However I am not dismissive of it and it may be the best way to implant a good microbiome into the colon. I prefer the idea of probiotic infusion all the same, but they may not yet know how to determine the right mix. I think people with fecal body odor will often have gut dysbiosis of a certain type but then many people have gut dysbiosis and don't smell, so I think there is an 'cell enzyme' aspect to it too (in my opinion FMO3)

Glasgow guy there is a Dr at a hospital in Glasgow who does FT for certain types of gut disorders. I don't think he usually replies by email. Dr MacConnachie at Gartnavel hospital. http://qjmed.oxfordjournals.org/content/102/11/781.long

I doubt he believes in fecal body odor so may not be very interested in such cases.
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Re: This could be amazing but I have some doubts

Postby Glasgowguy » Thu Nov 14, 2013 12:21 am

Hi poet fire I just e-mailed the doctor and asked him if he would be interested in trying to cure TMAU through FT. And that I live in Glasgow and could come meet him to discuss it. A long shot. But you never know. He might just be looking for a new project.
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