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TOPIC: tests and progress update

Re:DNA adducts, phospholipid exchange and other stuff 8 years 5 months ago #37

  • Maff
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Hey Nick,

Yeah pretty cool birthday! Well my dad's friend took us up and he's a commercial pilot for KLM and also has an instructors license for light aircraft so the plane was in safe hands if my dad or I screwed things up! To be honest though actually flying the plane isn't that hard (I've been up a few times) - it's the navigation, monitoring the weather and that kind of stuff that needs the thought.

The BBC podcast was good wasn't it. They had all the main players in the field on talking about gut bacteria and HPI. A friend I did my nutritional therapy degree with sent me the link for it after I mentioned to her I was looking into HPI.

There is a forum thread about it here on EiR that was active last year. One guy who had actually been for the treatment in Sydney said that you basically take antimicrobials for a month beforehand and then have something like 5-7 days where you receive daily infusions, both via enema and through nasal feeding tube so both the small and large intestines are covered. He said when he had the treatment around 2005-2006 it cost $2000 Australian. I'm sure the price tag will have gone up since then but at today's exchange rate that would be a little under £1300. Obviously about £700 or so to get there and then accomodation as well so it will be a sizeable wedge all in. I am convinced it will help me though and the cost would be insignificant if it does!

Here's the forum thread (it's a long one but keep going!) - How to restore gut flora

Thanks for the info on Breakspear. If my GPs efforts come to nothing I will certainly go down this route. It does come in handy sometimes to have EiR, and now perhaps my degree, to slip into conversations when I am after something ;)

Thanks, I am crossing my fingers that I will somehow be able to take an adrenal glandular on an ongoing basis. Either that or DHEA. I also stumbled across a very interesting glandular product from Cardiovascular Research/Ecological Formulas the other day called HRF-Thalamic. It contains glandular extracts from the adrenals, hypothalamus, pituitary, pineal, and specific brain regions. Would be a real boon for us ME/CFS sufferers if it helped support the function of all those.

Good to hear the neutralisation vaccines are having an effect. The lifting of your brain fog is definitely an encouraging sign. I'd still urge caution however as I experienced severe flu-like symptoms for a number of days after the EPD shots that actually worsened my gut situation. Your symptoms could be a good sign but they could also be bad. Just be aware of any other changes you experience as the treatment progresses. Allergies and sensitivities are certainly a key factor in this illness so whatever we can do to address them should help in the long run.

My book will be about the experience of being chronically ill rather than the medical side of things. I have enough of that with EiR and want a change of scenery after my degree. I quickly become bored focusing on one narrow subject. I think it will be a cathartic experience so keen to get going with it.

Thanks and good luck with all your treatments. I really think you're on the right track with everything so hopefully you will get some substantial improvements in how you feel sooner rather than later!

Take care,

Maff
If you are going through hell, keep going - Winston Churchill
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Re:DNA adducts, phospholipid exchange and other stuff 8 years 5 months ago #38

  • jamison
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Hey Maff,

Sorry it has taken me a while to get back to you - I have been KO'd with what essentially feels like glandular fever. I have also been getting bouts of diarrhea so not altogether a too disimilar reaction that you had to the EPD. I think I'm gonna keep running with it for a while though to find out where it leads. Dr Pouria thinks I may be clearing out something so here's hoping! I'll keep you posted either way!

Thanks for the info on the HPI and the glandulars. I'm gradually tapering down my dose of hydrocortisone so it will be really useful to have a glandular to help me do that. That stuff does look really good so I'm definitely gonna give it a go.

Good luck with the book writing! The more stories out there of people afflicted by this illness the better. Hopefully it will help the powers that be acknowledge this illness for what it really is: a genuine physical condition. Just hearing someone else who has been through it I think can also be really helpful to other CFSers and their families.

Anyway Maff let us know how you get on with the HPI and everything your end and I'll endeavour to do the same. Hopefully we can find some clues to point us in the right direction.

All the best,

Nick
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Re:DNA adducts, phospholipid exchange and other stuff 8 years 5 months ago #39

  • Maff
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Hey Nick,

Sounds like the you're having a very rough time with the immunotherapy so far. From my own experience I'd just caution that yes, symptom flares can be good and a sign that things are shifting for the better, but they can equally be exactly what they appear to be...bad news! I have in the past made the mistake of trying to push through bad reactions to treatments in the hope that I'd come out of the other end healed but it has unfortunately not worked out like that thus far. Don't want to appear pessimistic, just want you to be careful. I really hope this treatment has positive results for you!

Good luck tapering down the hydrocortisone. I'm sure an adrenal glandular would be a great help there but hopefully with all your other treatments you won't need anything in the not too distant future. The HRF-Thalamic really does have me intrigued so I'll definitely be ordering that with my next batch of supplements. Will let you know how I respond.

Thanks re: the book. You are absolutely right with what you said about ME/CFS needing more exposure but I have something else in mind for my book. I'm thinking along the lines of an inspirational book to help people see the positives that can come out of suffering from chronic illness in terms of personal growth. I need a bit of a change of direction. Focusing on the medical aspects of these illnesses all the time isn't particularly good for my soul I don't think!

Do let me know how you get on with everything. It's good to hear how other people get on with various things and compare notes. I'll be doing the adrenal and HRF-Thalamic glandulars in the short-term so will report on those. The HPI requires a lot of organisation and saving so that will probably be the best part of a year away I imagine. I will of course report in detail on that whole experience ;)

Take care and I hope the acute symptoms clear up soon.

Maff
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 #40

  • idkwia
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Maff and Jamison - I have just been reading most of this thread. I do not have CFS but I am very interested in HPI. I have actually spoken with Prof Borody. I cannot possibly fly to Australia and he said to me that he would send one of his nurses to the UK to do the infusions. Now I don't know how serious he was but if there were a few of us then maybe it would be possible. This may seem a bit like pie in the sky but stranger things have happened.
Borody's hospital also issue instructions for people who want to do HPI at home which I have a copy of (I think I might have sent this to you before Maff, did I?)
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Re:DNA adducts, phospholipid exchange and other stuff 8 years 4 months ago #41

  • idkwia
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Maff - I saw the following article which is not too complimentary about Damien Downing and I thought it may interest you www.dailymail.co.uk/health/article-10233...e-cure-children.html
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Re:DNA adducts, phospholipid exchange and other stuff 8 years 4 months ago #42

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Jamison - you said that you took Rifaximin. I am also in the UK and interested in getting some Rifaximin but it is not licensed in the UK, so may I ask how/where you got it please?
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