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TOPIC: tests and progress update

Re:DNA adducts, phospholipid exchange and other stuff 8 years 4 months ago #103

  • idkwia
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Hi Guys - sorry I have not responded for a while. I have been in hospital for a week and they are trialling drugs on me to see if they can help. The drugs take a few weeks to take full effect so will have to wait and see.
I cannot find any papers regarding the 'milkshake' method but I do know that there is a current clinical trial at St Mark's using this method on UC patients.
With regard to me doing DIY, I would have done it already if I lived with a partner. The stool has to be fresh and cannot be stored in the fridge so there is a problem for me to get the stool fresh. I could use my brothers but even though they are my brothers I can't imagine preparing the stool in their kitchen! Nevertheless DIY is still on my radar that is for sure.
I might try DIY using VSL#3 but I doubt whether this is as powerful as the real stuff.
I have written to McConnachie on two occasions so I agree it would be best if you two guys just go ahead and write to him from just you two. Hopefully if you get a positive response with him I will be able to persuade him to treat me as well.
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Re:DNA adducts, phospholipid exchange and other stuff 8 years 4 months ago #104

  • Maff
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Hi Guys,

Bad news on the PTRC Nick. I had a feeling they would now be getting swamped with requests. This year the media seems to have gone mad for HPI...Borody has been on the BBC, I bought a copy of New Scientist the other day because it had a big feature on microbiome research and HPI. It's also been in loads of regional newspapers etc. Good news for the world but not exactly for us! I am kicking myself I didn't do this earlier when I had the money. I first heard of Borody 10 years ago!

Anyway, glad you have sent your fax off and fingers crossed for a positive response. I think I have made up my mind that I am going to try a DIY approach first and see what happens as to be perfectly honest I don't have £7000 to throw around and I would do well to face a flight to Spain right now. I have a donor so I am going to do 10 days of HPI enemas and also fill enteric capsules (as many as possible) and take those to get at things from the top end. If I don't get any results maybe I'll then consider PTRC. Sorry to bail on you Nick but I know you want to get over there quickly and if you feel you are in a position to do so I don't blame you at all!

Seems like you've had the same experience with your GI tests as I had with immunological ones from Red Labs recently. I expected abnormal RNase L and a Th2 dominance (both supposedly key findings in CFS) only for the report to show pretty much the opposite! I had a distinct viral onset and meet ALL CFS and ME criteria so bit of a curve ball. I can only think the mess in my gut has now shifted my immune system in another direction.

Anyway, your tests. If it were just one of the two tests showing false negative then I'd say definitely possibility but it's a bit harder to dismiss two different testing methods that concur (unless Biolab were having a very bad day!). I don't think it changes your treatment plan at all though. The report states that you have lack of fermentative bacteria and SCFA production. I would therefore assume that you would be prime candidate for HPI to replenish a healthy microflora. SCFA are vital for loads of metabolic functions so you need the bactria to produce those for sure.

Idkwia - Good to hear from you, glad they didn't kill you with hospital food, cleaning chemicals etc! Hope the new drugs help in some way. You don't have anything to lose in asking your borther about HPI do you? I would go for it! Using VSL#3 is one option but I don't think it will come close to the benefits to be gained by HPI. It doesn't contain anaerobes for a start and as we know they make up the bulk of the gut ecosystem. Hope you can work something out.

Keep in touch guys!
If you are going through hell, keep going - Winston Churchill
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Re:DNA adducts, phospholipid exchange and other stuff 8 years 4 months ago #105

  • idkwia
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Maff - thanks for you good wishes.
I knew that Borody had been part of a programme on BBC Radio 4 is that what you meant or has he been on another programme?
With regard to doing HPI on yourself I am sure you will but I understand that you need to get organised to make sure you give yourself the best chance. For example you need to make sure that your tubing will allow the infusion through and not get blocked up. This sounds obvious but I have heard some people who have gone wrong with this.
Your idea of filling enteric coated capsules is an excellent idea. I would be very interested to hear how you get on with this. I don't know if you know this but I understand that there is a research group in the UK who are working on the idea of filling such capsules with faeces of patients when they enter hospital and then if they contract C. Diff whilst in hospital they can then take the capsules to cure themselves.
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Re:DNA adducts, phospholipid exchange and other stuff 8 years 4 months ago #106

  • jamison
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Hi guys,

Maff - no problem at all. To be honest, I had come round to the same thinking myself. Those test results suggest my small intestine isn't quite as bad as I thought it would be and that was the main reason I wanted to go to the PTRC. As it looks like I have insufficient/unbalanced bacteria in just the colon, I think I may be able to save £7000 and replenish these through a DIY method. By the way, do you have the procedure for that? It looks like I may be needing it...;) And will you be screening your donor or are you just going to go for it?

I was interested to hear you had some odd results too (thanks for your thoughts by the way on the GI tests). Apart from the fact that Red Labs threw up some unexpected results, do you think they are useful tests to have? Also, do you still want to go through with contacting McConnaghie to see if he will treat us on a trial basis?

Idkwia - I'm glad to hear your hospital visit hasn't been a complete waste of time and that you are undergoing a treatment. Fingers crossed - I hope the drugs work for you. As Maff says, I hope you go for the option with your brother. We could set up a small unofficial trial online for HPI at the Environmental Illness Resource...:)
Last Edit: 8 years 4 months ago by jamison.
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Re:DNA adducts, phospholipid exchange and other stuff 8 years 4 months ago #107

  • Maff
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Hi guys,

Idkwia - No problem, we all need the best luck in the world at the moment! Yes it was the BBC Radio 4 program I was talking about but Borody and faecal transplants/HPI seem to be popping up more and more in serious scientific programs and literature. The world is waking up, hopefully not too late for us!
Thanks for the pointers on the DIY HPI. As I understand it I will need to mix with saline solution, blend and filter to get the right consistency. Trial and error I guess! It willbe painstaking filling enough enteric capsules to do the job but I figure if I do that every day for 10 days it would be at least equivalent to a single nasojejunal/colonoscopic treatment at PTRC - and there's always the option to carry it on longer if needed. Interesting to hear about hospital admissions having stool samples taken in case they develop C.diff. Really being taken seriously to combat C.diff isn't it!

Nick - Seems like a sensible idea to me. I don't think you would be gaining a lot for the £700 and a whole lot of extra hassle! Without going into too much detail I know my donor to be free from serious infection so I'm just going to go ahead I think. May run the Metametrix GI Effects Profile on us both, before and after, out of curiosity! Someone sent me the home HPI instructions from PTRC a while back (think it was idkwia?!) - anyway, I've attached here. They aren't the best help though to be honest. No step by step instructions for the actual precedure, more about dietary preparation in the weeks before and choosing your donor.

This forum thread is getting rather long and confusing now so I thought the best thing to do would be to set up a group where we can have discussions on individual points. The group is setup and I've invited you both to join. You should see notifications on your community profiles and community homepage. Hope to see you there soon!

Take care both :)
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If you are going through hell, keep going - Winston Churchill
Last Edit: 8 years 4 months ago by Maff.
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Re:DNA adducts, phospholipid exchange and other stuff 8 years 4 months ago #108

  • idkwia
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Hi Guys

Yes it was me who sent you the Home Infusion Protocol. I actually think it is very uesful and pretty comprehensive so I am not sure where you think it is lacking Maff. Maff, are you going to take the antibioitcs and do the colonic lavage before the procedure?

Maff - can I make a suggestion please. You are right when you say there is a lot of 'chatter' on the net regarding HPI and so may I suggest that we start a thread on this forum specifically for this where you, Nick and me can contribute to and no doubt others will join in. This would be very useful and topical if one, two or all three of us go ahead with DIY HPI. If you agree, in order to cover all bases, can I suggest that the thread is called "Faecal Transplantation aka Bacteriotherapy aka Human Probiotic Infusion aka Colon Reflorastation". This might have the benefit off increasing the visitors to your site.

You both might be interested in having a look at this link www.myrealhealth.com/06.products/selfreflorkits.php

Maff - if you go for the DIY option I wish the the very best of luck and look forward to hearing your progress.
Last Edit: 8 years 4 months ago by idkwia.
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