To build or not to build: I am really... - PBC Foundation

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To build or not to build

Biddyb profile image
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I am really confused (again) should I be improving my immune system as I thought that part of the PBC problem was immune system being too active and attacking Bile Ducts thus causing problems eventually to the liver, or should it be calmed to avoid further damage,

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Biddyb profile image
Biddyb
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gwillistexas profile image
gwillistexas

You are correct. That’s how it was explained by my Internist & GI. Autoimmune targeted my liver ducts. 😊

My dr told me that my immune system is trying to attack my liver and bile ducts. I have autoimmune hepatitis and pbc. He said that pbc is secondary to my aih. He also said that I was caught so early I shouldn’t have a issue with my disease. I was told no herbal supplements. That I need my immune system suppressed. I get my vitamins through liver friendly foods and juicing. Remember our liver is different from others. We have to baby our liver. I will not take a single pill without going through my doctors first. Vitamin or not

Ktltel profile image
Ktltel

Hi Biddyb,

PBC is an AI disease. I've talked about building up my immune system on other posts. What I should say instead is that I'm trying to "balance out" my immune system.

Google Mark Hyman or Functional Medicine

(Nine Steps to Treating Autoimmune Disease)

1. Check for hidden infections — yeast, viruses, bacteria, Lyme, etc. — with the help of a doctor, and treat them.

2. Check for hidden food allergens with IgG food testing or just try The UltraSimple Diet, which is designed to eliminate most food allergens.

3. Get tested for celiac disease, which is a blood test that any doctor can do.

4. Get checked for heavy metal toxicity. Mercury and other metals can cause autoimmunity.

5. Fix your gut. For details, see his blog on irritable bowel syndrome. Leaky gut has been linked to autoimmune disease.

6. Use nutrients such as fish oil, vitamin C, vitamin D, and probiotics to help calm your immune response naturally. (Our immune systems are over active.)

7. Exercise regularly — it’s a natural anti-inflammatory.

8. Practice deep relaxation like yoga, deep breathing, biofeedback, or massage, because stress worsens the immune response.

9. Tell your doctor about Functional Medicine and encourage him or her to get trained — go to functionalmedicine.org for more information and to get a copy of the Textbook for Functional Medicine.

....and I'm gonna add one more in... Sorta a no brainer but... "Stay hydrated"👍.

Stella ❤

shadowme2 profile image
shadowme2 in reply to Ktltel

Have you heard of hemp oil? I've been taking that for about 2 years, I thought everything in my liver was calming down...alt and ast have been slightly elevated for around that long. Then 2 months ago I get this pbc diagnosis. Alk was 370. Never even knew of alk before this. I see you mentioned heavy metal poisoning, I've always been concerned about that. I have a mouth full of amalgam fillings that I cannot afford to have removed safely. 2 of my teeth chipped around the same time a couple of summers ago and that seems to be when everything started to go downhill.....

donna01 profile image
donna01 in reply to Ktltel

I too follow Dr Hyman. I believe He is on the right path

Ktltel profile image
Ktltel

Biddyb,

Oops... I forget to mention,

My post about " balancing out the immune system" 9 steps for treating AI's,

This protocol is what "I'm" trying out for myself. Please check it out. But it may not be for everyone. For me, I'm attempting to balance out what I can, while I can. I do feel better. My P.A. is on board with this alternative way of dealing with my RA and PBC. I say alternative because mainstream is, medications to suppress the AI. I'm marrying together both mainstream and alternative ways to attack my AI's.

Stella ❤

GrittyReads profile image
GrittyReads

My understanding - and this is just my understanding (!)...

... is that autoimmune conditions are caused by 'rogue' factors - that some autoimmune agents have become odd, mutated or increased to high levels, for some reason, and then they can then cause an autoimmune illness. These 'autoimmune agents' are (sort of) separate to, or aberrations of, the normal immune system, that usually protects us in more unobtrusive or ways.

The AMAs (antimitochondrial antibodies) in PBC, are often already there, but inactive and/or at low and harmless levels. However, they are sometimes activated, and/or caused to be there in large amounts, and then they can start attacking their specific targets. In PBC, the AMAs attack the cells of the minute biliary tubules that run throughout the liver, transporting good things to where they are needed, and removing bad substances to where they can be got rid of (eg via the gall bladder and big main bile duct and away from the liver).

Lots of illnesses - particularly as we get older - are caused by autoimmune factors. For example rheumatoid arthritis is an autoimmune condition, and lots of people have / carry the RA autoimmune factor - but only a fraction of the people with the autoimmune RA factor go on to develop rheumatoid arthritis. Researchers are still trying to work out exactly why some people get RA, and others don't

Experts are still only at the forefront in the fight against these rogue autoimmune agents. So far as I can tell, sometimes the various factors for the various autoimmune conditions are introduced or activated by infection, bad diet, bad lifestyle, chemicals, genetic pre-disposition and all sorts of other means that researchers are still trying to find out. It's now thought that lots of conditions that were rather ignored, or pooh-poohed (for example - I think I'm right - endometriosis and coeliac disease) may well be autoimmune conditions, but there is loads more work to be done.

We can help ourselves by encouraging our basic, natural immune defences by good diet, exercise, medication and so on. Having fun and not being stressed is good too. But sometimes we just have faulty genes or chemical pathways or are exposed to harmful substances, and the autoimmune factor is introduced, formed, or activated. There are no easy answers, but specialists are searching for explanations and cures, and more is being discovered on a daily basis. We can help ourselves by looking after our health, having the right checks and tests, taking the medication and helping organisations that work to find cures - eg 'The PBC foundation'.

Hope this helps,

Gritty

Biddyb profile image
Biddyb in reply to GrittyReads

Gritty that is really interesting reading, think all we can do is eat healthier avoid alcohol and try to stay positive I have an attack of fatigue which lasts 3 days usually at a time, normally when I have overdone things it is hard when you feel well to not overdo stuff, plus age doesn't help as new ailments crop up. Keep positive and don't let the buggers get you down.

Skypony profile image
Skypony in reply to GrittyReads

That's an excellent summary Gritty, thank you. I find it especially helpful to be reminded that we may be genetically predisposed, because that means I don't have to wonder too much about what 'caused' it. I know the theory is that there are environmental triggers, but finding those is definitely a job for the experts!

upintheair profile image
upintheair

I agree. That is a very good write up Gritty. In my own case I believed for a long time that Chronic Lyme disease was the trigger to my getting PBC. Now, I see there has been research done that confirms Lyme can lead to other autoimmune diseases depending on the course the Lyme disease takes.

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