Vitamins and antioxidants as well as an alk... - PBC Foundation

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Vitamins and antioxidants as well as an alkaline diet help immensely

bartholomewpatri profile image

Has anyone tried vitamins and antioxidants to stop the scarring of the liver and to fight the underlying cause which is inflammation. I've been taking n acetyl cysteine also a acetyl glutathione and ubiquinol along with vitamin a.e and c daily as well as selenium and colostrum my energy levels are awesome again and I limit my exposure to sugar salt and far since they fuel inflammation I'm also considering a more alkaline diet to stop the inflammation as I've had success before while on an alkaline diet with alleviating my inflammation. Please check out the benefits of a acetyl glutathione as it prevents liver scarring which may halt progression of this disease

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bartholomewpatri
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19 Replies
Wass71 profile image
Wass71

I'm glad you have found something which you think is helping. Personally I wouldn't use any anti oxidants, the body works by a system of homeostasis, by introducing high levels of vitamins and anti oxidants your body stops making them, thus reducing the amount in your system in the long run until it registers it needs to make more. Also using any additional supplement your liver has to break these substances down, adding extra strain on the liver. Fat soluable vits like a, e, etc can be depleted in liver disease, so its worth having levels checked before taking. Vitamin a can be toxic to the liver in high doses. Vitamin c cannot be stored by the body so most supplements are just urinated out.

All these things are no different from taking medicines and should be checked and agreed by Dr. Supplements are a huge unregulated industry, quite honestly you don't know what is in the bottles. They do not come under the strict licencing of medicines, the are under food standards and as such can claim lots of things without having to go through rigourous testing/ research etc. So please take care with these things.

If you eat a healthy balanced diet then you shouldn't need to add anything unless specifically tested and found deficient. IMHO.

Wishing you well

E

bartholomewpatri profile image
bartholomewpatri in reply toWass71

Well I disagree since for one it's obvious our Bodies are not making the vitamins and antioxidants we need because if it was we would not be sick in the first place however I read many PBC trials where these antioxidants have shown promise it's just finding the correct combinations of medicine and diet as well as Antioxidants to prevent the free radical damage and every site I have gone to to research PBC including the national liver foundation has suggested supplements since we cannot eat enough to provide all we need with PBC and it states vitamins a and e are needed to help prevent more damage

Wass71 profile image
Wass71 in reply tobartholomewpatri

Yes I agreed that vit a and e are often depleted in liver disease, this can be confirmed by a blood test and the correct dose prescribed by a doctor.

If any credible clinical research trials showed that any supplements worked for improving the health and well being of people with pbc then they would be advised by hepatologists and prescribed. I know there are studies looking at vit e in nash and nafld, it seems from what ive read they are very small studies and the bigger rct dont necessarily have the same findings. They are also using very high doses of vit e . some of these studies date back to early 2000, so given they have been researching for more than 20 years in some of these studies i would have thought doctors would be more aware and routinely prescribe if they were convinced of its efficacy. I have been diagnosed with PBC for 10 year's. I've seen specialists in London, Birmingham and the derriford Hosp ( kings college satalite unit), and other than being tested for vit d, a and e deficiency I have never been advised to take supplements.

I am still open to the idea that vitamin therapy may one day be recommended, but i will wait until a specialist advises and prescribes. My main concern however is the unregulated industry, which makes millions in this country. A recent consumer program tested a number of products from online stores as well as high street brands and found some contained either very small quantities of the stated supplements and in one case none at all ( I think that one was milk thistle). I just wouldn't feel safe taking anything not prescribed and provided by the very strictly regulated medical services.

However as stated this is my opinion.

Take care

E

bartholomewpatri profile image
bartholomewpatri in reply toWass71

I agree the vitamin industry is not regulated so we can't know for certain the efficacy of each vitamin however for me I chose a company that has a strong reputable following and read many customer reviews for a long time than one by one tried items to see if I felt better with their vitamins versus the kind I could but I'm mass merchants like Wal-Mart. I found a company that actually had good vitamins where I could feel results almost immediately I began with salmon oil and tested it against Wal-Mart's brands ..

This success have me confidence to buy a few more from the same company and when I did life quality improved as for the clinical trials I will post some later . I'm very early in my stages my blood readings just began to fluctuate. We use deodorant shampoo soap toothpaste mouthwash which contains alcohol and no one questions those products which all must be broken down by the liver so I think if we find a firm that is making good quality vitamins we should add something that could benefit is internally rather than just care for the shell of our Bodies in thinking of caring from the inside out. We had to put trust in those who make our toothpastes shampoos deodorants fragrance conditioner etc so I'm time we may also be able to do so with enough research into our vitamin company of choice. Have a great weekend

in reply tobartholomewpatri

Hello again bartholomewpatri.

The issue that we can develop with PBC is that certain vitamins (not sure about minerals) can be harder to absorb into our system than when we were without this PBC. But I still think that it would be better knowing what we might have a low count of as opposed to just guessing and then taking supplements.

One thing to note too is that it can sometimes be a case of using the internet and reading certain sites that are not wholly trustworthy.

I know it is difficult having PBC and as I am sure we all would like to somehow try to heal ourselves or try to make it better but I personally am not sure it is such a good idea attempting certain things.

I am in the UK and back in early 2011 when my consultant checked my Vitamin D levels (all my vitamins were said in 2010 when I started to itch (and wasn't diagnosed with PBC then, that happened December 2010) to be adequate as the GP said he'd checked levels) he just said they were ' a bit low'. The actual reading was on the line in early 2011 but he was not recommending taking any supplements at the time. I spent time as much as I could that summer out in the sun and on a recheck they were perfectly adequate. I am sure that if something came along that was perhaps deemed to be of a good aid for us in PBC then it would be recommended as a standard.

I do think that we should be able to acquire our needs if we are checking our as normal with our levels from the foods we eat.

teddybear7 profile image
teddybear7

I find all this very confusing. I was told that it's the bile leakage that damages our liver becsuse our bile ducts are themselves damaged. So I can't see that taking lots of other stuff will stop anything. If it did wouldn't the medical profession & researchers have us on it all. My liver is not inflamed they check that with every blood test but I'm deteriorating. My fat soluble vitamins are low because my poorly liver can't deal with fat digestion. So if it works for you then carry on but I'd rather listen to my health professionals. X

in reply toteddybear7

Hello teddybear7.

As I have mentioned in a posting on here, I too cannot see how we can somehow take 'lots of other stuff' and it will stop us having PBC either.

My philosophy once I accepted I could not be rid of PBC was to try to make sure I kept as healthy as possible so as to perhaps somehow minimise ongoing liver damage.

I think I have progressed a bit more in the last 6yrs since I started itching but I do feel that had I not taken the urso I would probably have gone mad with the intense itch I suffered 24 hours a day with just a bit of respite when I was sleeping. Yes I still itch and as you know from my regular postings, the itch has altered in how it is and though it can be a nuisance at certain times, as it seems I am stuck with it, I'd rather take it as is now as what it once was.

chynablue profile image
chynablue in reply toteddybear7

That's true, teddybear - once the bile ducts are damaged and scarred, then they are damaged and scarred. And it can cause bile to back up and damage the liver tissues. Plus, with the ducts clogged or not flowing smoothly, the liver has a hard time doing its job like regulating fat digestion and detoxifying, etc.

The idea behind fighting inflammation in the body is that it, hopefully, will help prevent PBC from causing more damage to the bile ducts. Inflammation triggers the immune system to become active. When the immune system is activated, there is a chance that it will target the lining of the bile ducts and start attacking. Keeping inflammation levels low is thought to prevent this, or at least decrease the risk.

I think if we do like Peridot says - keep as healthy as possible to perhaps minimise ongoing liver damage - that is probably the best philosophy. Some people like to use supplements as a tool to help be as healthy as possible, but for some its not the best route. Like you said, if it works for you then carry on. I think that's a good way to put it :)

Hello bartholmoewpatri.

Personally I'd not take any supplements with having PBC unless I was informed by a doctor that I may be or am deficient.

Certain vitamins (not sure about minerals) can build up in the system and not simply 'flushed away' like some can be (Vitamin C for eg).

You can overdose on selenium that can cause health issues but not sure about what is said to be a recommended daily dose.

With PBC unless someone comes up with some method of halting it then in this case I do not think that we can somehow 'fight the underlying cause' but all we can do is to try to remain healthy so the liver doesn't acquire anymore undue stress from other issues.

As Wass71 states, in the case of having PBC I do think that it is better having a chat with a doctor and perhaps having certain vitamin levels checked. At the end of the day our system has to deal with supplements we can take of which some might just prove unnecessary.

slck profile image
slck

My son has PSC, and like PBC, is an autoimmune conditon. Anything you can do to reduce or eliminate the autoimmune reaction, and the inflammation that it causes, should be beneficial. My son has had great success in using a combination of Low Dose Naltrexone, vitamins, supplements and diet to bring all his liver functions to normal as well as his inflammation markers. In addition, the vitamins and supplements should include those that detoxify the liver as well, such as milk thistle, selenium and others. If you join the Yahoo lowdosenaltrexone blog site, and read the materials in Dudley Delaney's web site, and the LDN Research Trust web site about LDN, you will find that it has been beneficial to many people in controlling a wide range of autoimmune conditions. Dr. Burton Berkson has written several books on LDN, Alpha Lipoic Acid and B vitamins, explaining the use of these and other vitamins/supplements to control autoimmune conditions. If you read the above materials you will get a better idea of how these items work and can have very beneficial effects for your condition.

bartholomewpatri profile image
bartholomewpatri in reply toslck

I agree and thank you for sharing those suggestions and websites. I have purchased the alpha lipoic acid milk thistle and b vitamins and do use those already. I will research the naltrexone...thank you kindly. I realize how much blind faith we put into using shampoos, soaps, toiletries which our liver must detoxify each day but so many are afraid to try vitamins ....I know they are not regulated but I believe with enough research it's possible to find a brand with a good customer following that actually can show benefits and efficacy . thank you again.

chynablue profile image
chynablue in reply toslck

Thank you, slck. I am checking out the LDN Research Trust site, and finding it very interesting!

nan1012 profile image
nan1012

I think this is brilliant. There's a lot of research on PBC and glutathione. It's a super antioxidant that is reduced even in early stages of PBC. Check out this article;

Biochimica et Biophysica Acta (BBA) - Molecular Basis of Disease

20 March 2003, Vol.1637(2):142–150, doi:10.1016/S0925-4439(02)00225-9

Oxidant stress is a significant feature of primary biliary cirrhosis

Thanks for sharing what you're doing to improve your life!

bartholomewpatri profile image
bartholomewpatri in reply tonan1012

Thank you as well. I was so thrilled with the research into glutathione it's amazing how much it can do to heal .

chynablue profile image
chynablue in reply tonan1012

Great article! Thank you!

chynablue profile image
chynablue

Hi bartholomewpatri, thank you for sharing your experience.

I have tried vitamins and antioxidants to stop the scarring of the liver and to fight inflammation. I had the assistance of some very good doctors to monitor my blood work and monitor my liver through MRI imaging. I was able to discuss things with them before I tried new things, which was very helpful.

At first, my doctor cautioned me to not take anything unless it was absolutely required. My liver had been inflamed for a long time, and he needed to do some testing to figure out what exactly was going wrong. He advised me to stop anything that might stress my liver - no alcohol, no supplements, no medications unless he had approved it first, no processed or fatty foods, limit salt, and limit sugar. I took care of myself and was very gentle on my body so that it could start healing.

Once I was diagnosed with fatty liver disease, PBC, and Vitamin D deficiency, the doctor knew more about how to move forward. He advised me to continue avoiding the things that could stress my liver (alcohol, bad food, etc), and to work on eating healthy and exercising to bring my weight down. He prescribed Ursodiol for the PBC and High doses of Vitamin D to bring my levels up. I asked about Vitamin E because I had heard that it can help, and he said not right now. Right now its more important to start the therapies that will definitely work - Urso, Vitamin D, and diet - and that studies show Vitamin E therapy only works sometime, its not solidly proven. He said, once my liver is healthier, then we can talk about dietary supplements.

I followed his advice and focused on my diet. I tried to eat the healthiest foods with the highest amounts of nutrition, antioxidants, and all that other good stuff. Most of my diet was fresh fruits, vegetables, and lean proteins. It was fun to research the best foods and what they had to offer my body in terms of cellular repair, detoxifying, etc. I avoided anything that could stress my body like fat, salt, sugar, processed food, animal fats, etc.

I came back for testing a few months later and my blood work was greatly improved. I had much better energy and lost weight, too. A few months after that, they repeated the MRI and said that there were a lot less fatty deposits in the liver, so the fatty liver disease was reversing. But, they said my liver had been inflamed for a long time and still needs time to heal.

Now that my liver is healthier, and my whole body is healthier, I have been adding some vitamins and supplements to boost my nutrition and support my immune system. I take a multivitamin and multimineral to make sure that I am offering my body all the nutrients it needs, even if the excess gets peed out. The multi vitamin/mineral includes Selenium and the precursors needed for my body to make glutathione. I also take a high quality Omega 3 supplement. After adding these basic pieces of nutrition, I had even more energy and felt very good.

I noticed that although my energy was greatly improved, it was still low and I had feelings of depression and brain fog. So I added Sam-e and CoQ10 (aka ubiquinol). I no longer have the brain fog or sad moods. I did feel a decrease in energy for a few months, but when my Vitamin D levels were retested low, I just doubled my Vitamin D supplements and that issue is much better.

I think its important for us to take personal responsibility for our health. No one knows our body better than we do, so we are the best person to figure out what works best for us. For some, there's no reason to add supplements to their diet. If it ain't broke, don't fix it. But for me, it was important to add in some of this extra support. I still have PBC; there is no cure for that. But I'd rather have PBC with a healthy body than PBC with an unhealthy body, fatty liver disease, depression, vitamin deficiencies, low energy, and weight problems. I don't know if I am halting or slowing the progression of PBC, but I'm sure eliminating the curable conditions is a good thing.

bartholomewpatri profile image
bartholomewpatri

Awesome....I too want to do whatever I can to be healthier and I am also being monitored closely to see what effect these antioxidants will have on my levels and the inflammation. Best wishes to you on continued success. I'm new into this so ibqont have results for a bit yet.

Becca75 profile image
Becca75

oh that's wonderful news that you're having success with it :) good to know! :)

bartholomewpatri profile image
bartholomewpatri

Thank you kindly and best wishes to you

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