Alternative/natural medicine?

[Janeway]

I just wanted to ask if any if you are taking any alternative medicine/natural supplements such as NAC (N-acetyl cysteine), liquorice root, milk thistle, high dise Vitamin C, E, D3, K2 or anything else? And if so have u had any positive results backed up by your blood test results?

[Rockie]

Janeway. I do take natural supplements and Vit A,D,E & K and calcium. My blood results are now better than in years. I was diagnosed in 2009 with PBC

[butterflyEi]

Hi Janeway

The specialist I see recently suggested that a multi vitamin including A D E & K would be helpful. I think I read that milk thistle was not proven to help. I think anything high dose could prove to be unhelpful as it would give the liver too much to do. Before the multi vitamin I was using a Vitamin D spray under the tongue. All in all I feel better of recent although my itch brings me very low sometimes but I am now also listening to helpful meditation and visualisation techniques on my mobile from You Tube.

I have not had any real change show up in my recent blood tests.

best wishes

[Caraway]

Hi Janeway , I'm also interested in how else -apart from the usual- can we help ourselves. I was only diagnosed about a month ago, so I haven't got many answers yet, I'm still doing my research trying to navigate through the unbelievable jungle of info! Much of it seems dubious and borderline suspicious, and there's a overwhelming number of "facts" that contradict each other... So I wouldn't trust most of the info I stumble upon, but things start to emerge, slowly - many people here mention go gluten free for example - I looked into that and I'm not convinced, I am rather coming to conclusion that it's too drastic and for most people probably unnecessary, apart from one thing - the over modified wheat. So thing number one - because bread making industry is crap in the UK and bread is not really bread anymore but something processed with additives, too much sugar, no yeast etc. - I'm personally going to avoid all mass produced bread and make my own using other grains that also contain gluten, but not so heavily modified, such as rye etc. If I can't make it myself (I've tried already and it was not as difficult as it might seem! But sometimes one just doesn't have the time or energy..), I will buy proper bread from artisan bakery - made the traditional way from leavening, using healthy yeast, no additives and only traces of sugar.

I was told I was a bit low on Vit D, so I started adding it, I'm at 800mg/day, but I will have to wait another 2 months til I see my Dr. to ask if I need to add more or less or what. Spring is here and longer days and I started on Urso a month ago, and I do feel more energised but cannot say for sure what it is that helps the most - probably everything combined - the Urso, sunlight, extra vitamin D, better diet... ☀️

I also came across a suggestion to add extra magnesium (I suffer from sceletomuscular pains), that's also something I'll be asking my Dr about.

Next thing I want to try - the famously anti inflammatory curcuma powder (contains turmeric) - but only if taken together with piperine (in black pepper) for max absorption.

I also found out that we should be careful with food containing copper (some seafood, kale, broccoli, some nuts, dark chocolate, sesame seeds..)

Milk thistle and coffee - I had big hopes in those until I came across a couple of articles /research, which unfortunately seem to have come to the conclusion that although both seem to have beneficial, healing even, qualities in terms of liver diseases, it does not seem to apply to PBC - they suspect it will be down to the fact that PBC has at least partly something to do with genetics and so "outer" supplements don't have power or means to overcome that (?) 😕

But! There just might be something, one thing for now, that seems to be able to get through in full power - simply because although it's plant-based and so just as "outer" as milk thistle or coffee, we humans apparently have natural receptors in our bodies - the endocannabinoid system- and the substance I'm talking about is cannabidiol - "CBD" for short - legally extracted from cannabis and legally sold in EU and UK. It's legal because there are only traces of THC and CBD itself cannot make anyone "high", it's also all laboratory tested and certified.

There's much interest in the CBD properties now, many scientific studies and researches have been done and are being done re CBD & liver, and it looks very very hopeful indeed, they all seem to be coming to very positive conclusions! Including PBC! So, probably because we already have natural receptors in our bodies, we can make the best use of the plant-based CBD as if it was our own protective/healing substance, our bodies don't just "process" it, but actually use it where needed - anxiety, pain, nausea, insomnia, even cancer and - liver diseases too.

UK manufacturers and companies that produce CBD recently formed an official trade association with all sorts of transparent information, I've got links and to the relevant research too, but I'm not sure if it's ok to post here?

[Hidden in reply to Caraway]

Hello Caraway.

I have just read through your posting. Disagree with some of what you are saying. I live in the UK (England) and know it is possible to buy bread that is exceptionally good. My husband and I don't overly consume a lot of bread but I do buy it. I do agree that going gluten-free is not necessary unless there is a medical diagnosis that states one should (ie being diagnosed coeliac).

It's all well and good posting negativities about certain items (ie coffee - of which I've posted a lot on here about in the past and quite recent) but it might be best following up where you have read the articles/research. From what I've gathered on coffee in this instance (I did see a tv programme late last year, it was shown by a scientist in Italy who had done research and showed that coffee can help hold back progressive inflammation). I do think even in PBC if there is something in our diet that we can take and it can help the liver remain that bit healthier it is surely better than nothing.

Prior to being informed I had PBC December 2010 and starting on the urso I was never a big coffee drinker. Can't say I have been since but I am sure a strong cup every day doesn't do much harm.

I've never been advised to be careful with any foods and there are a lot of foods that do contain copper but as far as I know there is no known reason not to consume foods that are considered to be healthy (ie broccoli or nuts for eg) as I am sure other additional nutrients that each contain outweighs and I fod one won't cease consuming what is said to be a good thing.

I think once we have PBC it can throw things into a bit of a wary mode regarding what to eat and what not to. I have the itch of PBC and some days it is not so bad, others it isn't so good. I only itch late at night until around 6a.m) and then I think about my day, what I've consumed and have to say that certain times I don't think I've done so good (might have eaten what is considered a naughty treat) I tend to find I feel better than when I've taken more care.

The one thing I do feel is right for anyone with PBC is to cut back on fats We do need fats but living today we probably have more than ever due to fast foods, etc (I don't to consume and they tend to be a one-off on a rare occasion if I do) and to me it is important as more fats in our system needs more bile for digestion.

Going back to turmeric, I did once read on this site in the early days (I've been on here since practically the beginning of it) a poster stated that to go easy with turmeric, apparently it can block bile ducts. Again I don't know where the information came from. I only tend to have a bit of turmeric in the odd mild curries I make myself as not a big curry fan and making at home, know what I am using.

[Caraway in reply to Hidden]

Hi peridot,

you're so right about the after-the-diagnosis "wary mode"!

It doesn't help finding out that there's so much information out there and soon realising that probably most of it is useless, irrelevant to PBC specifically, or even contradictory. It's hard to find any responsibly consolidated and verified information on diet and supplements in greater detail anywhere.. Just little bits and bobs here and there or general food groups that are not detailed enough.

That's why I tried to mention things I've found so far, not as facts (much research still needs to be done), but rather as bits that I'm slowly coming to conclusions about - and I've said that some things "seem to" be (or not be) of benefit, not that they conclusively are or are not. I just wanted to mention in which direction I'm personally inclined to go, and perhaps some will agree and some not, it's all very individual and diet should ideally be tailored to our own circumstances, I know.

Bread - I did say mass-produced bread, as that's what most people consume, and I'm sorry I shouldn't have used the word crap, but of course you can still get great bread in the UK - that's why I was able to suggest choosing artisan bread over factory made bread, because the option does exist here in UK, or even making our own bread - perhaps from other than wheat grains, and that's what I will try to do and others might find interesting enough to look into as well

Coffee - I wasn't sure about posting links, but of course I can. I didn't say that I believed coffee is not beneficial to liver at all - I actually really hope it is!! But what I meant was that so far I also came across a couple of conclusions based on research - and the way I understood it is that although coffee is proving to be good and beneficial in most other liver conditions, PBC doesn't seem to be one of them - that's how I understood it and wrote it as a point to be further explored. Anyone can make their own opinion on the research and maybe they'll see it differently, it's possible. Hence the "?" at the end of that paragraph in my original post. I drink about 2-4 cups of coffee a day myself, I love it, and as long as it doesn't cause any other problems or a specialist tells me otherwise, I will continue enjoying it

Links:

1) gastrojournal.org/article/S...

2)ncbi.nlm.nih.gov/pmc/articl...

Milk thistle: I've found more on this but can't locate the links in my browser history right now (I've got so many saved links re PBC in my browsers, in my Inbox...it's crazy trying to find something again quickly as details are often hiding under complicated scientific titles!) but here's at least this one: onlinelibrary.wiley.com/doi...

Food/copper - I didn't say avoid eating something otherwise healthy for no reason, I just said that we might need to be careful - meaning go easier in respect of the amount consumed - it's just something else to bear in mind (if interested at all) and perhaps ask our doctors/nutritionists about it individually if in doubt and also depending on where in PBC we are, what stage. I believed it worthy mentioning as copper is toxic. The respective foods with very high level of copper are easily searchable online for reference.

Turmeric - I would never start with any supplement, be it vitamins or minerals or whatever, in high doses without consulting my Dr. first (same goes for CBD). But they often don't know enough either. We use lots of caraway in food preparation for example, and a while ago I've came across a note somewhere that something in caraway may be possibly related to something in liver - I wish I remembered where I saw that and what it was, but I just took it into consideration to later ask my gastroenterologist about it hoping he'd know, but he had no clue, never heard of it... So I just go easier on it now. It's just a food spice like cumin, I don't have to use it at all, but it does taste great and helps digestion (pork, cabbage etc.) so don't want to leave it out completely unless someone educated tells me otherwise... I'm ok to eat less fat, no alcohol etc., but I still like food to be flavoursome!

I'm sure there will be much other stuff that some of us, if not all of us, should better go easy with or avoid altogether (I don't mean just the most obvious alcohol), but still being able to find a good balanced diet.. I do wish however it was all easier and less confusing to find!

Well, most of all I wish PBC was avoidable to start with! But maybe one day we'll know enough to cure it or even prevent it, where there's Life, there's Hope, right? I guess we must believe at least that

[Caraway in reply to Caraway]

I don't know why one of the links is not clickable - I'll try one more time:

ncbi.nlm.nih.gov/pmc/articl...

[Ktltel in reply to Caraway]

Caraway,

Great research, I read a lot of those same online articles months ago. Got most of it off of the PBCers meals and menu guidelines. Since reading that I don't drink coffee or eat foods high in copper. Haven't for 6 1/2 months. Only super low fats, no added salt, nothing fried, no simple carbs or complex for that matter besides carbs in some veggies. No dairy, gluten or sugar either.

Lean meats, fish, and veggies. I occasionally make baked sweet potato fries.... But only once in a while as a treat. 😊

All my lft's gave gone to normal ranges with the exception of my alk-phos which is currently at 141. I attribute this to URSO, prednisone, and my diet.

Stella

[Biddyb]

Hi Janeway, I would be really interested too for natural remedies to help with this ailment, Cider Vinegar has been mentioned although with all things there have been mixed reports, not sure about milk thistle either I can't take any calcium as my levels are high and I have board line Hyperparathyroidism will try anything really other than immunosuppressant s. Keep posting if you get any suggestions

[Hils67]

Hi Jane way, I take a herbal tincture which does seem to help with the itch and my lfts are now in the normal range, although this could be the Urso. The herbal tincture was made up by a qualified herbalist and contains other things to help me sleep too. It contains Rose, skullcap, milk thistle, nettle, Schisandra, chamomile. Dandelion and lavender. Not sure how much it works, but it does help with the itch...if the itch gets bad (usually when I'm stressed) I also take passion flower. I came off the herbal stuff for a shirt while and the itch came back so I went back on it. And like I said my lfts steadily improved when I went on urso and now the last 2 6 month bloods have been normal...only the GGT is just slightly above normal but still coming down.

Good luck x