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TOPIC: How to restore gut flora

Re:How to restore gut flora 8 years 8 months ago #25

  • idkwia
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Maff - I believe that like me you are in the UK, is that correct?
I am very interested in Human Probiotic Infusion (HPI) and have spoken to Prof. Borody on two occasions. Having done a certain amount of research I know a reasonable amount about this procedure.
I also know someone who has CFS and following a stool test was found to have almost zero 'friendly' bacteria in her gut hence she is going to undertake HPI herself as she cannot afford to travel to Australia.
I have been thinking of treating myself with HPI and I am here to ask if you got any further with your decision to try this?

PS Maff on a separate subject I note that you say that you have SIBO, I assume that you have tried rifaxamin for this?
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Re:How to restore gut flora 8 years 8 months ago #26

  • Chrrr
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Im going to try the infusion at home with my 2 year old son as a donor soon, probably in a month or two. I have IBD in the rectum and also a septated gallbladder and gilbert's syndrome....

Will post results/experience when its over
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Re:How to restore gut flora 8 years 8 months ago #27

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I'm male, 21 btw, with a history of antibiotics, sinusitis and liver disease. I also have SIBO which i successfully manage with a 0 carb diet.<br /><br />Post edited by: Chrrr, at: 2010/10/23 12:51
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Re:How to restore gut flora 8 years 7 months ago #28

  • Maff
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Hi guys,

This topic clearly has a lot of us interested!

idkwia - yes I am in Harrogate, UK.
What came of your correspondence with Prof. Borody? Do you have any further information on the logistics...do you need to be referred? How much does it cost?
Following my initial diagnosis of CFS 20 years ago I had a stool test (CDSA) 10 years ago which revealed an almost entire lack of Lactobacilli (and beneficial E. coli) but healthy numbers of Bifidobacteria.
From my understanding Lactobacilli are more common in the small intestine than Bifidobacteria, which almost exclusively inhabit the colon. My lack of Lactobacilli would therefore tie in with the timing of my symptoms of intoxication following meals...and diagnosis of small intestinal bacterial and fungal overgrowth.
This then presents a problem for me, and I suspect many others with similar problems. Doing HPI at home will simply not cut it in this instance as there is no way you can get the transplanted bacteria from a donor into the small intestine where it is needed. If the dysbiosis is restricted to the colon then in theory you might get positive results.
If you're going to do this yourself then you also need to do all you can to clear the gut of the less friendly microbes before commencing the HPI or there will be no \"real estate\" on the intestinal mucosa for the beneficial bacteria to implant on.
On a personal note, I am still seriously considering a trip to see Prof. Borody or perhaps someone closer he might recommend. I was planning on contacting him shortly. However, I want to give low-dose naltrexone (LDN) a try first as it is cheap but potentially a very powerful immune modulator that might just restore my immune function enough to get things in my gut under control. Many testimonials suggest LDN works wonders for gut infections in those with CFS, autism, IBS etc.
I haven't actually been on rifaxamin as my primary issue is fungal overgrowth and I am unable to tolerate antifungals (hence interest in HPI) so I don't see rifaximin or similar as worthwhile at present. In the past stool tests indicated potentially problematic bacteria in my gut were most sensitive to ciprofloxacin, which I took and ended up with toxic hepatitis.

Chrrr - It sounds like a rectal infusion is much more likely to be of benefit to you than those of us who have our primary issues in the small intestine. I think you need to be careful doing this procedure yourself though. I would seek na doctor's supervision if at all possible. If you do decide to go ahead, please do keep us updated on your progress/results.
If you are going through hell, keep going - Winston Churchill
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Re:How to restore gut flora 8 years 7 months ago #29

  • idkwia
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Maff - Firstly I can tell you that I think it is highly unlikley that any doctor in the UK will treat anyone with HPI for any condition other than refractory C. Difficile. I have written to several doctors to ask this, including one that does it for C. Diff, and they all said \"no way\" and none of them knew of any other doctor who does it. I also wrote to some doctors in Holland but again no joy. I asked Borody if he knew of anyone else in the world who does it and he said he doesn't but he believes that one or two in Nth America might be starting. I have heard anecdotally elsewhere that this might be the case.
I am unable to go to Oz so Borody wants me to take high doses of antibiotics, which is always part of his protocol, and if I show some improvement this might indicate that I would be a good candidate for HPI. At which point he suggested sending over his nurse to the UK to do it; this seemed a bit far fetched to me but he did say it. Maybe if there were a few of us it might become a reality.
You don't need to be referred to Borody, you just contact his clinic and arrange an appointment. I don't know the cost of the treatment. It is likely that he will want you to take antibiotics for a few weeks so it would be sensible to do this before travelling to Oz.
With regard to how they infuse the faeces, they usually do the first one via colonoscopy and subsequent ones via enema although they can do it via nasal tube into the duodenum.
I have also read that the small intestine is predominantly lactobacilli but I have to say that I am not sure about this as there is so much confliciting information on probiotics out there and I have read elsewhere conflicting info regarding this. And of course much is still to be learnt about this whole subject. Anyway I can see why you think that doing HPI at home will not work for you but I have an idea that it still might but of course that is your call and I fully understand your reasoning.
I do have Borody's Home Infusion Protocol if anyone is interested.
Interesting what you say about LDN as this is something that I am seriously considering too. You mention that LDN has had some excellent results specifically for gut infections, may I ask where you have seen this please as this is something I have been searching for and have not yet found hence my reluctance to take it?
Also, have you heard of Dirk Budka who claims great success with CFS etc, etc? If so I would welcome your thoughts before I waste another huge amount of money.
And whilst I am asking, all of these alternative therapists and practitioners out there in the UK do you know of any that are actually any good? If you are unable to answer this here I would be happy to give you my email address as I would really value your thoughts.
By the way, I don't have CFS, I am suffering with constant nausea and/or stomach discomfort and have done so for just over 2 years.
I assume you have tried the SCD?
Well done for this brilliant site Maff, it must be very hard to keep this going when you are so unwell.

Chrrr - I have come across one or two others on the net who have treated themselves with their child's poo with pretty good results. One of them is here:- www.healingwell.com/community/default.aspx?f=38&m=1841211
If you do it then please let us know how it goes.<br /><br />Post edited by: idkwia, at: 2010/10/26 17:30
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Re:How to restore gut flora 8 years 7 months ago #30

  • Maff
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idkwia - Yes from my limited search for possible gastroenterologists performing this procedure I'd come to that conclusion. Every reference to the use of HPI I have come across has been in C. diff patients. I believe there is a doctor in Glasgow who cured an elderly lady using her grandaughter as a donor. I haven't contacted any doctors in the UK and Europe purely because with the procedure only being used for C. diff infections I find it highly unlikely I could convince anyone to take me on with my \"controversial\" diagnoses.
It sounds like Prof. Borody is a lot more open-minded so may be the only option at present, although as you mention, there seem to be possibilities developing in the US (still a long journey but not half as taxing as Oz!). You have probably already come across this article in the NY Times published July 2010 but here's the link - http://www.nytimes.com/2010/07/13/science/13micro.html?pagewanted=1&_r=1
That sounds like potentially very good news if Prof. Borody is willing to send his nurse over the the UK...although what would be the cost of that? I think it would definitely need a few of us to make it affordable. Are you planning on trying the antibiotics in the near future?
Sammy, who posted earlier in this thread has actually had the procedure at Prof. Borody's clinic and had the infusions through a nasal tube into the small intestine, so we know that is something they do. Sammy also said the cost of treatment was AUS$2000 five years ago so certainly not outisde the realms of possibility.
I totally agree, the research on probiotic bacteria is far from clear at the moment so it's hard to be sure about anything. Going from my lab results and symptoms however I am confident my problems are primarily in my small intestine, specifically the ileum. The home HPI may well be worth a shot however (before spending a fortune!). I'd be very interested in reading the protocol. Could you upload it with your next post?

I have a read a lot of testimonials for LDN at the major LDN websites such as LDN Research Trust and found quite a few mentions of gut issues clearing up, along with improved sleep quality and a host of other benefits. I also posted about LDN on the EIR Facebook page and had the biggest response for a single post I'd ever had. Many people related that the or their kids (typically autistic with gut issues) had seen remarkable improvement in gut symptoms on the treatment. It makes sense given that LDN supposedly restores immunity and 70% of the body's immune tissue is located in the gut.

To be completely honest I haven't seen any doctors or other medical practitioners for years as I was so busy with my degree. However, I am now working with Dr. Damien Downing who certainly knows his stuff and by coincidence, Dirk Budka actually lectured on my degree course and was clearly one of the most knowledgeable lecturers we had in this area. Some of his approaches are a bit different to the \"norm\" ...but perhaps that is a good thing! I would certainly recommend you talk to him.

Were there any proceeding factors that may have contributed to your illness or did it come on suddenly? Did you have an infection? I have just procured my medical records from the NHS (at a cost of £50!) and am astounded by how many prescriptions for broad spectrum antibiotics I had throughout my childhood, leading up to my ME/CFS diagnosis, and in the 5 years following. Trully shocking...it's no wonder I am in such a state!

Many thanks for your kind words about the site :)
I am about to start work on a major update and re-design and hope the results will make it an even more useful resource. At the very least I want the forums to stop timing out so everyone ends up double-posting ;)
If you are going through hell, keep going - Winston Churchill
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