Hoping to help someone with my post today....

[bartholomewpatri]

I found out i had all this PBC and felt sore everywhere and no energy--- and i began researching alternatives and found robuvit helps with lmt's and doctors take it daily to stay healthy i added it and feel energetic once again i also found out about s-acetyl glutathione as a way of preventing more liver damage and scarring...it sounds to be of great benefit all i know is my bile ducts have now re-opened confirmed by a weeks worth of blue green bowel movements(excess bile in the intestine causes bowel movements to turn blue-green) and new testing and my lfts are back to normal...in addition to this i had cut down or cut out sugar, salt & fat except for coconut oil or olive oils and i had also begun juicing and eating two meals a day vegan since food seems to add fire to the damage causing much inflammation. Best of Luck.

[bartholomewpatri]

What is S acetyl glutathione used for?

Glutathione is a naturally occurring tri-peptide that is considered a powerhouse antioxidant, synthesized naturally in the body. ... That is why it is necessary to supplement Glutathione. Acetyl Glutathione benefits every system and function in our bodies and truly earns the title of our body's “Master Antioxidant”.

[butterflyEi]

Hi bartholomewpatri

do you know if this would rid PBC sufferers of the itch?

best wishes

[bartholomewpatri in reply to butterflyEi]

Cholestyrmine which my doctor prescribed stops the itch and yes over time this can too

[GrittyReads]

Sorry to be a wet blanket, but this sounds very dodgy to me. I would run all of what you are taking past your consultant, in detail: just to be sure that what you are taking is at least harmless.

Whatever the advertising blurb says, don't trust it - people just want to sell 'stuff' and make money. Also, if an advert says 'Drs take it' ... it's meaningless. I'm a 'Doctor' ... but in English Literature!! Loads of people in advertising and on dodgy TV channels do just call themselves 'Dr'.

What do you mean by lmt's ? Do you mean 'liver function tests'? lfts?? If they are improving and you are taking Urso, then it's probably the Urso doing its job.

I don't think your damaged bile ducts can 're-open'. The actions of PBC destroys them. It may be possible that new ones are forming - or that the millions of other ones in the liver - not yet damaged - are coping better ... but I would not be pleased to see blue-green bowel motions, in fact I'd be worried.

Simply: if healthy, the motions should be brown - that's the bile! If motions are black there may be blood in the bowel - see a GP - and if they become paler and more yellow ... and then even white ... that is because of the lack of bile (a classic sign of PBC or other liver problem) - see a doctor. At the same time, your urine would become a stronger and darker yellow, and then almost brown, as the blood now has to remove and deal with the bile in the liver.

Blue-green bowel movements sounds scary: and at the least, whatever is in the treatments you are taking may be masking the true colour of your faeces, so that you don't really know what is going on.

Apologies if this is a bit lecture-ish, but really: please get this all checked out with your consultant.

[bartholomewpatri in reply to GrittyReads]

I am not taking ur so and I did run these by my consultant. And no the blue green vowels movements ended after a week. So no your presumptions are incorrect please read again carefully

[GrittyReads]

As far as I am aware, the 2 new drugs that have been developed - after long official, medical testing and trials periods - are taken in conjunction with Urso, and only after a PBC sufferer has failed to improve on Urso. Until these 2 new drugs came along, Urso was the only treatment for PBC, and it has cut the fatality levels from PBC hugely in the last decade or so.

I know that my consultant would not approve of something that has not undergone rigorous medical testing - he's wary of all 'supplements'. So I presumed you had not checked with yours.

With regard to the blue-green bowel movements, there is nothing in your initial comment that makes it clear that the blue-green bowel movements have stopped ... hence my mistaken presumption that they are still ongoing, for which I apologise.

Out of interest, what are you taking if you are not taking Urso?

[bartholomewpatri]

I apologize for being short with you earlier, but yes my statement above said after a weeks worth of blue green BM's.... and so sorry i was posting this from a cell phone so spell check changed the LFT"s to LMT"s and bowel to vowel, I understand what you are saying. What bugs me most on this site is there are not more uplifting posts or posts that inspire others---it seems most people on here suffer terribly and i feel that those who are finding success should share more here without the fear of others who are skeptical. I just feel as if there is no cure and most of what they have doesn't halt progression of the disease and thats very depressing to most.

[GrittyReads]

Hi Bartholomewpatri,

Sorry if I was a bit short, too - albeit in my usual long-winded way!

I see what you are getting at, and I can appreciate you wanting to share something that has worked for you. I just worry when I hear of 'wonder drugs'. NB there was quite a debate about this chemical sometime back, I found it with some easy searching.

I also agree that sometimes this site can be overwhelming, with many people suffering, or waiting for transplants, or scared and confused having been recently diagnosed ... Especially if they have been told via insensitive GPs or other medics, or - worse - if their nearest and dearest either cannot cope, or don't even believe something bad is going on, because often people with PBC can look and act okay.

So, well done, great for trying to give us all a boost. Plus, if you look back over some older posts, there are a lot of uplifting and positive posts. For example, even 20 years ago, for most people PBC was possibly a death sentence. But thanks to the production of Urso, most people with PBC have the chance of a long and relatively pain free life: they are more likely "to die with PBC, than of it" as the saying goes. Even better, now, with the development of the two new drugs, things are looking brighter: definitely for those who were unresponsive to Urso ... plus it seems that the outlook with the combination of Urso and these new drugs may be proving to be even brighter. Plus, there are more developments in the pipeline, so really it may not be so grim.

But big thanks for trying to lift people.

Meanwhile: remember to spoil yourself, too. Do things you love, avoid stress, treat yourself: autoimmune conditions thrive on stress, so do all you can to have fun and de-stress.

Take care

Gritty xx

[bartholomewpatri in reply to GrittyReads]

thank you

[bartholomewpatri]

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