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TOPIC: tests and progress update

Re:DNA adducts, phospholipid exchange and other stuff 8 years 10 months ago #19

Hello Maff - thanks for your update, and it seems you're doing an amazing amount of stuff. I've heard of Damien Downing, so you're obviously going for the best!

Things aren't good my end. I have been stopping and starting the supplements I've been prescribed as my symptoms wax and wane. To be honest I've just about given up on the whole thing and am quite desperate.

Looking back through my posts I see that for some reason I've left out a major part of my overall picture. I'm more and more convinced that my problems stem from a course of roaccutane taken for cystic acne when I was in my teens. You've probably heard of it, it's got a horrendous track record, and it's becoming clearer and clearer to me that it this is that has been causing my mental symptoms all these years.

Actually the phospholipid exchange was supposed to address this issue, by clearing up the cell membranes to detoxify whatever roaccutane may still be left in there. It doesn't seem to be doing that, and I believe that accutane does its damage at a genetic level.

I'm going to have a go at homeopathy which seems to have some association with being able to clear damage from allopathic drugs - specifically tautopathy which involves taking a potentised solution of the original drug in order to prompt the body to detox it. I've been in contact with a couple of homeopaths who say they've treated roaccutane type disorders before. I didn't dare ask if they were successful.

I wonder if you have experience or knowledge of problems caused by allopathic drugs. Whether they stick around as long as 23 years (the duration of my problems), and whether they can be successfully detoxified?

I hope all goes well with your tests, and that they yield up some useful information. I quite agree that you can't put a price on health and you should pay whatever you need to. And great news too that you are able to tolerate the glutathione and phosphatidylcholine.

John
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Re:DNA adducts, phospholipid exchange and other stuff 8 years 9 months ago #20

  • Maff
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Hey John,

Sincerest apologies for taking so long to reply to this message. I'm having trouble keeping on top of things at the moment!

Damien Downing is a prominent environmental/nutritional medicine doctor so not surprising you've heard of him. I have seen him on and off since my teens and he definitely knows his stuff. He'll be contributing a regular column when the new version of the site goes live.

I have to admit I recognised the name 'roaccutane' but knew nothing about it. I've done a bit of reading up on it just now and it does sound like pretty toxic stuff! It seems it was originally developed as a chemotherapy agent and it is a retinoid (vitamin A derivative) which means it is fat soluble and is therefore able to permeate fatty tissues (including membranes of all cells and their organelles) and is likely to hang around for extended periods of time.

I read that roaccutane can have epigenetic effects. That's to say that while it doesn't directly alter DNA it can influence the expression of genes and the biochemical processes they control...so it may have the potential to cause any number of long-term side-effects. Shame they don't tell you (or even know) all this before they hand you a prescription for it!

Given the little I've read about roaccutane I would think phospholipid exchange would be an ideal treatment approach. If it were me I'd try to give the phospholipid exchange more of a go if I could. I know that's easier said than done when you can't tolerate anything! What has your doctor said about this?

I really hope the homeopaths can give you some relief. They might at least help you to tolerate other treatments recommended by your doctor...who knows!

I'm down in London next Monday to have 11 vials of blood taken and then shipped off to various labs in the UK, Europe and the US for the various tests I'm having! I am also on the waiting list for an ultraound of my liver and gallbladder after liver bloods detected elevated AST and ALT right on the upper limit of normal. I have been reporting mild hepatitis-like symptoms to my GP for years but bloods have never ventured out of the normal range until now...will be interesting to find out if there are any physical signs of something going on.

Hope you're feeling a bit more positive. Never lose hope!
If you are going through hell, keep going - Winston Churchill
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Re:DNA adducts, phospholipid exchange and other stuff 8 years 9 months ago #21

  • Loulou
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Hi guys :-)

firstly good luck maff with the ultrasound results let us know how it goes. i have my appt on monday!

John, alarmed me reading about the roaccutane. As a 30 year old female who previously had perfect skin to now have acne and roaseacea since candida and leaky gut saw a dermatologist for another opinion jan this year and was told Roaccutane was the ONLY thing to cure it!!! she didnt agree that it came from the gut and she was quite rude really and told me I could try all this stuff(ie complinatery medicine) but that I would be back in a year to come (this is because I told her I was not willing to take the mediacine!!)....well THANK goodness I didnt cause my liuver would be in a BIGGER mess than it alreasy is!!!!!!!!!!!!!!!!! :sick: silly woman left there crying!! :blush: wehen i questioned the product she raved over it and said well i know what i am talking about i have been a dermatologist for 30 years!!!!!!!!!! well i feel sooo sorry for the peeps out there that believe in her cause by god they are going to pay for it :-(:(

anyway thought i would share that info with you bot!h!

have a good eve :P
Louisa
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Re:DNA adducts, phospholipid exchange and other stuff 8 years 9 months ago #22

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Hi Lou,

Thanks for the good luck. I'll definitely let you know about my ultrasound results. I am not sure what the best result would be - if nothing shows up that's good because it's less to worry about but if it does that's also good as it's undeniable evidence of illness. Anyway, we shall see ;)

Well done you for taking a stand and refusing to take the Roaccutane! It doesn't matter if you cried as long as you made your point and did what you kne was best for you :)

The outright arrogance of doctors (particularly specialists) never ceases to amaze me. They think they know absolutely everything when their narrow-minded tunnel vision doesn't allow them to see anything like the full picture. They would do well to start listening to their patients! I once showed an immunologist the results of some tests I had had done privately and he actually said if his kids had chronic fatigue syndrome (ME/CFS) he wouldn't waste his money on those tests. Clearly knows nothing about ME/CFS as standard tests are totally inadequate and only specialist testing looks for the abnormalities found in the illness. Safe to say I walked out of that consultation more than slightly annoyed!

Hope you're all having a good weekend :)
If you are going through hell, keep going - Winston Churchill
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Re:DNA adducts, phospholipid exchange and other stuff 8 years 7 months ago #23

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Hey guys,

I too am seeing Dr Pouria and am going for phospholipid exchange. So far I am on my 6th IV (I am also getting IV glutathione, folinic acid and intramuscular methylcobalamin (B12) and magnesium). Reading your conversation you guys have come to very similar conclusions about the origins of the illness as I have. I too have had a load of tests done from Acumen, Bodybio and Biolab (to the detriment of my wallet!!) and found I have low zinc, glutathione, aluminium toxicity, poor cell integrity and nasty stuff stuck to my DNA (specifically nitrosamines which is a carcinogen from smoking...Yes I used to indulge in the odd joint at University!)

Anyway as I have similar issues - adrenal fatigue, gut pdysbiosis and mitochondrial dysfunction - I was wondering if you have strated the PLX and, if so, was it beneficial? John, what do you make of the Burghwood clinic? Are you still working with Dr Pouria?

Any feedback you guys have would be really appreciated..

Nick
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Re:DNA adducts, phospholipid exchange and other stuff 8 years 7 months ago #24

  • Maff
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Hey Nick,

Welcome to the site :)

It sounds like you are doing pretty much exactly what I am starting to do. I began giving myself bi-weekly injections of methyl-B12 just before Christmas. I also had a test dose of IV PLX with glutathione which didn't cause any adverse effects so I'll be starting that proper in a couple of weeks.

I am currently trying to get to grips with the complexities of the methylation cycle and all the biochemical pathways it is interconnected with. Amy Yasko's book 'Autism: Pathways to Recovery' is a great help but wasn't cheap! I am stuck with getting folate into my system in a form my body can use. Genomic testing revealed I am homozygous for common SNP in the MTHFR gene so need folate in the 5-MTHF form to bypass this mutation. Only problem is methyl donors (including this and SAMe, TMG etc) taken orally really upset my poor gut so I can't take them on a continuous basis.

By all accounts if you jump start your methylation cycle you shoul;d noticve it - detox reactions, clearer thinking, brighter mood, improved immunity etc. I haven't noticed anything from methyl-B12 injections alone yet so I need to add other things in somehow it seems.

The book above also explains well how methylation problems tie in with the work of Proffesor Martin Pall regarding nitric oxide and peroxynitrite, as well as with immune dysfunction and gut dysbiosis. It seems a big picture is starting to emerge for multi-system illnesses!

How are you getting on after 6 PLX IVs? Have you noticed any benefit yet and how often are you having them? I need to get rid of the BPA identified as a DNA adduct on my Acumen tests but the cost is a bit prohibitive. I have begun using an FIR sauna blanket (borrowed from Dr. Damien Downing) and also plan to use skin brushing as another stimulus to detoxification. I've decided it's about time I threw everything at this after being ill for 20 years!

Look forward to hearing how you have been getting on,

Maff
If you are going through hell, keep going - Winston Churchill
Last Edit: 8 years 7 months ago by Maff.
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