Discussions By Condition: Liver conditions

Sarcoidosis In Liver

Posted In: Liver conditions 11 Replies
  • Posted By: BONNY RICKARD
  • November 13, 2006
  • 08:51 PM

My 49 Yr Old Husband Diagnosed With Sarcoid3 1/2 Yrs Ago,

In Most Organs But Really Bad In The Liver; All Lft's Elevated
Granulomas Pressing On Hepatic Vein Causing Toxins To Build Up
In Liver, Doctor Has Him On Bile Salts Medication. Does Anyone
Have Sarcoid This Bad In Liver And What Can Be Done

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11 Replies:

  • I also have liver involvment due to sarcoidosis. At present I am being treated with the Marshall Protocol, which I suggest you research on the website www.marshallprotocol.com I have innumerable small foci seen on a CT of the liver and my LFT's go up and down at random. However, three years ago I lost my spleen because all the docs thought the same foci in my spleen was lymphoma, so they removed it and I got my sarc diagnosis. If only the doctors had done a bronchoscopy as I had asked at the time. Now, they want to biopsy my liver, but I am refusing this invasive procedure, as I feel a diagnosis from one lost organ is enough. This is a systemic illness and can and does attack any organ of the body. I feel confident that Dr Trevor Marshall's protocol, although long and not easy, is a much better alternative to the commonly used steroids and other immunosuppresives used for sarcoid treatment. This time, I am sticking to my guns and carrying on with this novel treatment, which has been backed by sound science and is gaining greater acceptance slowly in the world wide medical world.Go and do a lot of reading on the board there and ask as many questions as you need to, to see if this is the way you want to treat your illness.I wish you better health down the road.Kas
    Anonymous 42789 Replies
    • November 22, 2006
    • 07:58 PM
    • 0
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  • Here are some great Sarco sites off MNS's SarcoBuddies on-line group. For some reason they don't discuss the MArshall proticall (I think because so many have decided not to go that route.) There is a lot of info on the MP on line, I say check it out - make your own decision.Hope your Hubby's process slows down a lot.http://www.sarcoidosissharma.com http://www.nsrc-global.net 3.) The Sarcoidosis Networking Association (striving to educate,provide and promote awareness of Sarcoidosis) http://www.sarcoidosisnetwork.org 4.) Life and Breath Foundation (Searching for a cure for Sarcoidosis) http://www.lifeandbreath.org/ 5.) Medical University of South Carolina Website (MUSC) http://www.muschealth.com 6.) The National Jewish Medical & Research Center http://www.njc.org/index.aspx 7.) Sarcoidosis Awareness Webring List http://www.ringsurf.com/netring?action=info&ring=sarc 8.) The American Lung Associationhttp://www.lungusa.org/site/pp.asp?c=dvLUK900e&b=22542
    Anonymous 42789 Replies
    • November 23, 2006
    • 09:31 AM
    • 0
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  • Mainstream medicine does not discuss the Marshall Protocol (MP) because it is new and cutting edge technology. New medical discoveries take a long time to gain acceptance in the mainstream - often 20 years or more. However, Dr Marshall has sound science backing his protocol and many, many people from all over the world who are making definite headway on it. Someday, the MP may become the gold standard treatment for diseases like sarcoidosis, but for now, only the brave will give it a try. Most of us don't have 20 years to wait for a new treatment to be approved. Dr M is working with NIH and has made great strides in having his work evaluated, so it is certainly not being dismissed.The MP is not easy or quick and if you are not comitted to it or cannot find a doctor who will follow you on it, that is a problem. No one can make you do anything you do not wish to do, but at least go and read about it and decide if you are willing to go this route.Good luck in whatever you decide.
    Anonymous 42789 Replies
    • November 28, 2006
    • 07:44 PM
    • 0
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  • Unregistered,Have your liver enzymes gone down since using the MP?
    Anonymous 42789 Replies Flag this Response
  • Helped many people with Sarcoidosis. Email me to discuss. Dfarrish@starband.net
    dfarrish 34 Replies Flag this Response
  • I also have liver involvment due to sarcoidosis. At present I am being treated with the Marshall Protocol, which I suggest you research on the website www.marshallprotocol.com I have innumerable small foci seen on a CT of the liver and my LFT's go up and down at random. However, three years ago I lost my spleen because all the docs thought the same foci in my spleen was lymphoma, so they removed it and I got my sarc diagnosis. If only the doctors had done a bronchoscopy as I had asked at the time. Now, they want to biopsy my liver, but I am refusing this invasive procedure, as I feel a diagnosis from one lost organ is enough. This is a systemic illness and can and does attack any organ of the body. I feel confident that Dr Trevor Marshall's protocol, although long and not easy, is a much better alternative to the commonly used steroids and other immunosuppresives used for sarcoid treatment. This time, I am sticking to my guns and carrying on with this novel treatment, which has been backed by sound science and is gaining greater acceptance slowly in the world wide medical world.Go and do a lot of reading on the board there and ask as many questions as you need to, to see if this is the way you want to treat your illness.I wish you better health down the road.Kashello i just want to to give a few words, i had a liver biopsy down and it was determined that my liver was completely covered with sarcoidosis except one spot. I went to a liver speciality and you know what he said your liver is an innocent by stander in this, ok im looking at him like what is the treatment for it, and you know what he said steroids, i hate steroid they have made my life a living ***l, so i never went back to that doctor. You know what i hate more abut this disease is you run into doctors that just dont know **** about it, so they tell you a bunch of bull. I see a kidney dotor too due to sarcoidosis, i was on the Marshall Protocal but i guess it wasnt for me, because it seems like im not doing good. What i hate the most about sarcoidosis is Doctors start about strong trying to help but in my case eventually they cant figure things out so they pass me on to another doctor, like i cant figure it out so i dont want to treat her anymore, thats the hardest to me. i hope you have better luck.signed,TIRED
    Anonymous 42789 Replies
    • October 24, 2009
    • 10:54 PM
    • 0
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  • Can someone please point me directly to the MP for Sarcoidosis in the liver? My husband is at a meld of 7 because of all the prednisone. The prednisone is destroying his body for the sake of preserving his liver. Desperate to prevent varices from bleeding out! Thank you.
    Anonymous 42789 Replies Flag this Response
  • My name is johnny, I'm a 46 yr old vet, I also have had sarcoid for 3 1/2 years, my lungs liver and stomach have granulomas, liver is distended, I'm always so tired, sometimes I don't have the energy to wash my face, taking a shower has become a chore, I have a lot of floaters in my eyes, had fevers as high as 103 deg, I don't want to die like Bernie Mack, but its possible. I wish yu all luck, Johnny Miera st George Utah. My 49 Yr Old Husband Diagnosed With Sarcoid3 1/2 Yrs Ago, In Most Organs But Really Bad In The Liver; All Lft's ElevatedGranulomas Pressing On Hepatic Vein Causing Toxins To Build UpIn Liver, Doctor Has Him On Bile Salts Medication. Does AnyoneHave Sarcoid This Bad In Liver And What Can Be Done
    Anonymous 42789 Replies
    • September 23, 2010
    • 07:47 PM
    • 0
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  • Hi, i am 24 and have had sarcoidosis bad in my liver and a little bit in my lungs since i was 19, i was told to look after myself and not to drink alcohol, but being young i didn't listen, when i was 22 i ended up spending 5 months in hospital from my varagus viens bursting, what i didn't know is that sarcoidosis can burn itself out, which mine has now done. Unfortunetly i already have done the damage so now im stuck with a bad liver, my advice would be to look after yourself the best you can and hope it burns itself out. I know pretty much everything there is to know about sarcoidosis so if you have any questions please ask.
    Anonymous 42789 Replies
    • October 22, 2010
    • 11:46 AM
    • 0
    Flag this Response
  • Hi, i am 24 and have had sarcoidosis bad in my liver and a little bit in my lungs since i was 19, i was told to look after myself and not to drink alcohol, but being young i didn't listen, when i was 22 i ended up spending 5 months in hospital from my varagus viens bursting, what i didn't know is that sarcoidosis can burn itself out, which mine has now done. Unfortunetly i already have done the damage so now im stuck with a bad liver, my advice would be to look after yourself the best you can and hope it burns itself out. I know pretty much everything there is to know about sarcoidosis so if you have any questions please ask. HiI have sarcoid in the liver, I have red sores on my legs and I itch like crazy. Have this ever happeded to you? If so how did you treat it.
    Anonymous 42789 Replies
    • January 15, 2011
    • 07:57 PM
    • 0
    Flag this Response
  • Hi All, I also have sarcoidosis in my liver. Initially started 1997 in my lungs and that was treated ok. Then it went further in my spleen and liver. I was on cortisone and due to too many side effects I was put on Azathioprine 200mg. Has anybody been treated for spleen and liver and I was wondering what was the outcome? Thanks for letting me know.
    Anonymous 1 Replies Flag this Response
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