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Methylation and Primary Sclerosing Cholangitis

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Uno, Jan 23, 2012.

  1. Uno

    Uno Senior Member

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    Brighton, United Kingdom
    Hello

    I haven't posted on here in a while, I just thought I'd pose a question to the more knowlegable members of the forum than myself, about methylation and Primary Sclerosing Cholangitis.

    I am under investigation for the disease PSC, a chronic liver disease caused by progressive inflammation and scarring of the bile ducts of the liver.

    I am at the moment taking Methyl-B12, NADH with Ribose, Active B-Complex (active B6), Magnesium, Selenium and Alpha Lipoic Acid. I haven't yet added in the Actifolate or Phosphatidyl.

    I am having quite good success with the protocol at the moment, I can now get out of bed and potter around the house for a good hour with rests in-between, type on the computer, read and shower by myself whereas before I was bedbound. I was off the protocol for a month when I was rushed into hospital and the difference off the meds was staggering, I was back to being bedbound and took me nearly two months to get right again (taking me to the present day as hospital was November).

    What I wanted to know is how does this protocol affect the liver if I have a disease of the bile ducts. I can't come off the protocol as I will go back to b'eing bedbound and I am very sick with liver pains and blocked bile ducts causing massive infections.

    I have raised levels of Glutathione in my blood as well which I don't want to get worse.
     
  2. Freddd

    Freddd Senior Member

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    Salt Lake City
    Hi Uno,

    I don't know about this problem at all. I had raised live enzymes for several years in the early 90s, in retrospect possibly from APAP which I was taking massively. I asked for a switch to meds without APAP and the problems went away in a couple of years. Mb12 and Metafolin help reduce inflammation and aid tissue healing throughout the body. SAM-e has some research showing benefits for liver problems but I don't know anyting more on that.
     
  3. Uno

    Uno Senior Member

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    Brighton, United Kingdom
    OK thanks Fred. Maybe Rich can answer - I am trying to find out through researchers how many people with M.E have this diagnosis ontop or if I am just very unlucky!
     
  4. fla

    fla Senior Member

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    Montreal, Canada
    Primary Sclerosing Cholangitis is an autoimmune disease. My brother has had it for sixteen years. It eventually leads to liver failure requiring a liver transplant which can be from a live donor these days. He is being released from hospital today following a cadaver liver transplant. His doctors automatically excluded me from being a possible living donor because M.E. has known immune dysfunction. His doctors told him that he possibly has both but they could not test for M.E. directly but that after a transplant he would know he didn't have M.E. if his energy comes back. He was never as disabled as I am with M.E. and only got close to my level when his MELD put him as the #1 most urgent on the liver transplant waiting list for his blood type.

    I've always suspected that we have the same genetic predisposition for autoimmune disease that simply triggered different autoimmune diseases. I've previously suggested he talk to them about Rituximab. If the same type of autoimmune mechanism is involved in M.E. and Primary Sclerosing Cholangitis then perhaps Rituximab could help both conditions. Since the liver has the ability to regenerate, one would expect liver damage could reverse itself while Rituximab was keeping the guilty parts of the immune system in check. After a liver transplant, immune suppressants are a must so the risk of immune suppressants are already there eventually.
     
  5. Uno

    Uno Senior Member

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    Brighton, United Kingdom
    Oh no Fla, my heart goes out to your brother. I hope the transplant was a success, I've heard lots of positive post transplant stories on my PSC forum so fingers crossed.

    My mum has PSC and autoimmune hepatitis, it's definitely in my mind genetic. Am having gallbladder surgery first to get rid of the infected gallbladder then see how the ducts behave after that. Dreading it all. Eurgh:In bed:
     
  6. fla

    fla Senior Member

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    Montreal, Canada
    Did your Primary Sclerosing Cholangitis (PSC) start only after you started the protocol? One serious concern I have is that trying Freddd or Richvank's protocol may help my M.E. but could then trigger PSC which is a risk in my family. Richvank has mentioned worsening of autoimmune illnesses for some while on the protocol. Even the Norwegians had some cases of autoimmune flare ups during their Rituximab trials.
     
  7. Freddd

    Freddd Senior Member

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    HI Fla,

    I've done some reading since my last post here a couple of days ago. I believe that the sometimes worsening of autoimmune diseases on the simplified ptotocol is becasue of the folinic acid in susceptable peopl causing a lack of methylfolate. This will increase inflammation and hyper-responsiveness. This is where I say that if a person is susceptable to paradoxical folate deficiency from folic or folinic acid, and in the case of folinic acid then vegetable food folate too, and/or glutathione (precursors), NAC, whey. A severe folate deficiency dramatically increases inflammation system wide and hypothetically could be the autoimmune trigger. There is definitely a tie-in between deficient mb12/methylfolate and some autoimmune disorders and suspected in some others.

    It appears that folate deficiency is predictive. An induced folate deficiency would be far worse becasus far more severe.

    search string in google >> PSC folate

    PSC in UC: Is it or is it not a risk factor for the development of ...

    http://onlinelibrary.wiley.com/doi/10.1002/ibd.3780060113/pdf
    onlinelibrary.wiley.com/doi/10.1002/ibd.3780060113/pdf


    by DJ Helper - 2000 - Cited by 2 - Related articles
    additional risk factor, and the use of folate may be protective. Comment: Studies looking into the relationship of UC, PSC, and neoplasia have been plagued by

    Inflammatory bowel disease and cancer.


    www.ncbi.nlm.nih.gov/pubmed/9119437


    by SH Itzkowitz - 1997 - Cited by 83 - Related articles
    ... but newer factors such as associated primary sclerosing cholangitis, folate deficiency, and family history of colon cancer may help to refine risk stratification

    Kaplan: Serum Folate and Homocysteine and the Incidence of Acute ...


    www.psc.isr.umich.edu Publications


    Kaplan: Background: Several, but not all, prospective studies have shown that low folate intakes, low circulating folate concentrations, or high plasma total
    Inflammatory Bowel Disease (IBD) - Merck Manual


    www.merckmanuals.com/.../overview_of_inflammatory_bowel_dise...


    Primary sclerosing cholangitis, which is a risk factor for cancer of the biliary tract, ... Patients should take daily folate supplements 1 mg po and have CBC and
     
    fla likes this.
  8. Freddd

    Freddd Senior Member

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    Hi Uno,

    See my reply to fla
     
  9. Uno

    Uno Senior Member

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    Brighton, United Kingdom
    Ah ok, thanks very much for finding that out Fredd. The PSC symptoms began in November 2010, before that in late 2009/ the early part of 2010 I had raised liver enzymes but no symptoms. I started the protocol in 2011 so it can't be that. I might just be unlucky! I shall look into folate then....is Actifolate or Folapro better? I couldn't remember....
     

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