I have PBC. A trusted naturopath prescribed supplements. My GP is against .Liver specialist ambivalent. Im stuck in the middle. Advice pls

[boneytoys]

The naturopath is my sister. She has researched my condition in depth. My GP says it might interfere with Urso . My liver specialist wrote down what was prescribed but really wasn't interested- too busy to think about it I suspect....but now what????

[Cristina_Romania]

My personal opinion is that (underlined *personal*, but this comes also after quite a lot of research, for personal and job reasons too):

- many doctors are against natural remedies (also called complementary, precisely becaue they can often help classic treatments very well) simply becaue they actually have no knowledge of such things, nor about all the studies on various herbal remedies out there (trials, medical articles, experience of other doctors and patients) and are also personally against these.

- a reasonable attitude is to try to get the most accurate and authorised info about these things, for one''s conditions, that is from people who do know, mainly (ideally) doctors, GPs, gastros, internal medicine doctors (like we have in Romania) who do have knowledge, training and experience with such things.

At the end of the day, each one is responbile for his/her own well-being, to try to find out/do more for it or not, to trust only one doctor (who is also only human) or to try to find out what other specialists think, and so on.

Again, just my personal attitude. Then again, I am Romanian, and here there are many doctors who have a double speciality, classical and alternative medicine, or who at least know some things about one tea or another, one natural supplement or another, which as far as I know is not the same as in the UK, so I am a bit biased :).

All the best anyway.

[miri in reply to Cristina_Romania]

Hi,i also been diagnose with PBC,some month ago,and feel very exausted at times,there are conventional doctors that dont believe in alternattive medicine,mainly because they can only give what they know,there are many people,that their lives have been saved by it,even cancer,i am in touch with Dr Cabot,now,that is a conventional doctor as well as a nathuropath,and she strongly believes,that a lot can be done,by changing the way,we live,our food intake,etc,after all,the body,can heal itself,and people use to live more than 100 years,withouth those chemicals,my humble opinion is that both need to work together,they are both needed thanks MIRI

[K-nirk in reply to miri]

I know you posted along time ago but how did your work with dr Cabot go? I’m meeting with her next week.

[Val02]

I can only tell you what my gastro said - no alternative medicine without checking with him first. Obviously if your consultant was unwilling to help (maybe he didnt know but they dont like saying that), thats a bit of a problem. Perhaps the PBC Foundation might know the answer?

[boneytoys in reply to Val02]

very often people turn to supplements because it puts them in part way control of their medications and treatment...it can be empowering also to make these decisions but its hard when you are advised against it. I have asked PBC foundation for any research they might .....thanks

[Hidden]

All I got told by my GP is " do not buy anything over the counter or take anything that we don't know about" I even got told off for having a glass of andrews to get rid of a tummy upset. I am also stuck inbetween them both on pain relief one wants one thing , one doesn't and wants another.

[boneytoys in reply to Hidden]

thanks linda

[Hidden]

Your welcome, to be honest you do feel a bit down at times with these specialists etc, I just think they don't seem interested because they don't know, I have always said that it will take a big celebrity to get this before we get recognishion but what celeb is going to amit to having it when the first thing that will happen is they will be branded an alkie.

So keep your pecker up boney we will all fight on together.

[sistergoldenhair]

I think each doctor is has different views, just like each patient. My liver doctor who diagnosed me 17yrs ago said it was up to me, it couldn't hurt and he had heard the benefits of milkthistle. I have been taking in for 15 years and I can't help but think it is one of the main reasons I didn't progress to end stage sooner, since I was diagnosed at stage 3. I listen to all my doctors, family and friends and I research, but in the end I say a prayer and make the decision I think is best for me. If I do it this way then I feel I have made the best choice I can for me and then I can relax and go on with my life till the next decision comes my way It really all depends on us to make our own choices since we deal with the results, I just try to make informed choices.

[boneytoys in reply to sistergoldenhair]

i think your absolutely compellingly correct. I also think I just reacted against taking suppliments personally as well so maybe I liked that my doctor advised against it

I have been taking them for 5 years and have been well. I stopped this year. I think Im going back to sane rationale. Thanks very much

[sistergoldenhair in reply to boneytoys]

welcome

[Silvers]

I am unable to take Urso as it makes my itching worse. I have really only suffered with the itching for the past year and it totally drives me insane as I can't sleep as the itching is worse at night. My GP doesn't like giving me sleeping meds but as I am now looking at it if I don't get any sleep my quality of life would be very poor. My specialist has asked me to consider a liver transplant which scares me to be honest! I am now taking supplements, going to speak to a medical herbalist/nutritional therapist, I also go to a reflexologist, started juicing, making healthy smoothies and looking to make my body more alkaline. The way I see it I have nothing to lose at the minute. Good Luck Sx

[nash1]

i take milk thistle and blue green algia supplements ..my GP does not approve of this BUT my consultant does. have been taking it for 7yr along with my urso,s and other stuff i take and my illness has not progressed for 5yrs, i think the supplements are helping wit this

[boneytoys]

So now I take vitamin d and a b12 spray ( might help bewilderment)

All good but I have a weird tick in my cheek as I write this

Is it a sign??

Stay well

I seem to be

Xx

[Dinasmom]

I am a RN with PBC. If I were you, I would heavily research every single supplement you are considering adding to your medical regimen. Make sure those sources are approved medical sites. After much study, I too strayed slightly from my hepatologist's recommendation when my liver enzymes remained elevated despite URSO. I started intermittent fasting. The odd thing is, my hep actually acknowled the research indicating its benefits, but wouldn't recommend it. Perhaps he thought it would be too difficult. Anyway, after over two months of following this dietary adaption, my liver enzymes are all well within normal limits and all the symptoms of PBC I had are gone. It has been amazing to me.

So, yes, I think there is some benefit to more natural health approaches, but research extensively. There are a lot of supplements out there that can do more harm than good to PBC. Good luck!

[boneytoys in reply to Dinasmom]

I like the idea of fasting

What regime did u follow ?

I’m interested

T

[Dinasmom]

I started with a daily 16/8 cycle then moved on to 18/6. I do not eat after 6 pm until 12 pm the next day. That said I drink 2 cups coffee in the am with a little cream. Here's an article on it in case you are interested. There are many of them on the net. Good luck. sciencedaily.com/releases/2....