Rare illness, Idiopathic Granulomatous Hepatitis, need support

Discussion in 'Fibromyalgia Main Forum' started by mlbbarry, Jun 14, 2009.

  1. mlbbarry

    mlbbarry New Member

    Hello I am new to this website and was looking for a support group. Unfortunately there is no support group for my condition, so I have decided to join a group that closely fits my symptoms, and this seems to be the board.

    I was diagnosed with IGH about one year ago. Symptoms include enlarged liver and spleen, fever fatigue, malaise and an overall crappy feeling all the time. Did the Prednisone thing which only worked on high doses which gave me so many other problems it wasn't worth taking. Now am on an anti malaria drug but just started so won't know for about 6 months if it is working. Ideally I would love to meet someone with the same illness to see if I am missing anything, but it would be nice to have support from other people who are suffering daily from similar issues. Who know maybe I can help someone else. Thanks for allowing me to join your board. Monica
  2. Sacajawea2

    Sacajawea2 Member

    I am glad to see you here...I hope the anti malaria drug will work for you. There are a few here who have taken it for M.E./CFS

    You probably will be able to help someone else.
    How did you get your diagnosis and what was your health like before? Do they have any idea how you developed this? Did they rule out viruses? I know nothing about it but hope you find some good support and perhaps others with some help/support to offer.

  3. AuntTammie

    AuntTammie New Member

    It stinks so much to have a chronic illness - I can only imagine how hard it would be to have one that is so rare. I hope that you find community and support here.
  4. mlbbarry

    mlbbarry New Member

    Man you do know your boards. Thanks for sending me this direction, it does appear that my illness has similar symptoms as the other people here. Mainly I had a liver biopsy that showed really large granulomas which was enlarging my liver. they rule out every thing else massive blood test like 25 tubes of blood, looking for viruses, parasites, TB, sarcoidosis, etc.... once they have done test for everything else and everything is negative then they are left with IGH. So they just treat symptoms and try to keep my liver enzymes down, which is difficult since I weened myself off of Prednisone, so we have to try other stuff. Now I can't work, spend half the day laying down for 5 or 10 minutes at a time to recoup for another hour before doing it again. Gained a ton of weight since the Prednisone, and am out of breath walking up my driveway. Before the illness I was in great shape worked a bunch, took care of kids, (which now half the time they take care of me), hiked 12 miles at a time with friends. Just loved my life.

    So still love my life just differently I guess. Boy reading this looks more like self pity then anything else. Oh well i guess that is what a support group is for. Better saying it to strangers than saying it to my family. Thanks Sacajawea for taking the time to listen.
  5. wanda@email.uky.edu

    wanda@email.uky.edu New Member

    If you call Standard Process and ask for places who carry their supplements near you, those are people who may be able to help you with igh using muscle testing or MSA. If you go to www.naet.com and find a practitioner near you, that is a person who may be able to help you eliminate allergy/asthma/sensitivity. If one person is on both lists, that would be even better. I also get chiropractic adjustments. I also am on the guaifenesin protocol for fibromyalgia. I also take prescription medication for my symptoms, including non-generic synthroid. If your tissue type is mz for carrier of alpha-1-anti-trypsin deficiency, as mine is, you may want to try alpha-1-anti-trypsin, although I have not yet tried it. I am improving under my care, and I know that you can improve under your care. I still rest a lot and I still sweat a lot, so I still have symptoms; I am temperature sensitive; however, I am much better each year than the year before. A colon cleanse followed by a liver cleanse might help. I have not tried that yet. Decreasing prescription medication lowered the liver enzymes, but I had to increase them again due to a broken foot. Take care of yourself!
  6. mlbbarry

    mlbbarry New Member

    thanks for the info. You seem so educated in this area, it was unclear if you too were suffering from this. I am a carrier of alpha 1, i don't understand how that might help with anything, I do see a Chiro for atlas adjustments. Thanks for giving me some new info. Monica
  7. jasminetee

    jasminetee Member

    When I first read your title I though you had ME too. It's fine that you don't, everyone is welcome here. It certainly sounds like your illness has impacted your life the same way that ours have all been. Feel free to vent away, that's what this board is for.

    Personally, I find solace in listening to other people's stories here because I'm going through the same things. I certainly can't relate to healthy people anymore. I know how much I want to find others going through the same issues so I'm really glad you were directed here.

    Hope you're awap (as well as possible)

  8. Debra49659

    Debra49659 New Member

    SJ can never steer anyone wrong:) And I am but one of her huge list of supporters! I do have some type of benign cyst on my liver but as far as I know that is not causes any of my symptoms. We have many wonderful people on this site and as well as a source of information, this site and the folks on it are the best at listening, sharing and caring.

    Those that suffer from chronic illness really need a huge support system, and you've found one of the best.

    Welcome and I look forward to chatting with you again.

  9. skeptik2

    skeptik2 Member

    A new report in the latest issue of Journal of Lab Analysis by Dr. Hokama et al at John A Burns School of Medicine in Hawaii shows severe liver complications caused by antibodies to cardiolipin. the anticardiolipin tests (ACA) showed 95% of patients were positive to this test.

    It's not a new test; just a new way to use it and look at the liver in CFS/ME patients.

    Dr. Hokama is respected worldwide, and he even recommended the med that would turn this around; Retuximab (spelling!). It causes the liver to malfunction, leading to several different liver abnormalities.

    You might ask for this common test to see if if gives any answers for you.

    I have NASH, non-alcoholic steato hepatitis; drs don't know what caused it, either, but say 'maybe it's viral'.

    I took milk thistle for 6 months, and my next liver enzyme tests were normal! I've had normal ones for two years now. I credit the milk thistle for this.

    Just my info and suggestion...I hope you find the right answers for you!

    Best to you
  10. mlbbarry

    mlbbarry New Member

    Thanks skeptik2, for your info. I see my doc in a month I will ask him about that test. I really do appreciate all the comments, and information I have received from this site. Thanks for taking the time to care.