autoimmune hepetitis

When i was 30 1980 i got very sick seen several doctors was told i was depressed i worked too much. I was fatigued sick at my stomach this went on for several months,Finally turned jaundiced was then told i had type A hepetitis got worse every day i really swelled with fluid. I made my way to a GI doc in portland or. I was in the hosp for 48 days my liver was totally destroyed yeah i know you can't survive without liver function but to the astonishment of all docs involved i did just that after a few days of that i was scanned again and showed regeneration of a small group of liver cells. My liver is small but it serves me fine. I was put on prednisone 60 mgs. a day over a two year period i gained a lot of weight but my motto was better fat than dead. Anybody else have this? At the time i had this only 2 cases on the west coast. The lesson i learned from this don't think doctors know everything they don't. When something is really wrong be aggressive if you don't feel right about your doc find another,it could save your life.

By tobimax
Posted May 29, 2009 at 1:10 pm
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My husband was told he has autoimmune hepatitis which caused cirrhosis. It has only been 6 mos. and he has had LOTS of test. Hopefully, they can figure it out.

If you have any suggestions, please let me know.

I am glad to hear that you beat the odds and survived.

By PEGGYB
Posted May 29, 2009 at 1:39 pm
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Sorry to hear about your husband. to stop my immune attack i was put on prednisone 60 mgs. a day for about 2 years til labs were normal. I have no scaring because my liver was totally destroyed.The liver does have a chance to regenerate some new cells.I pray that is what happens with your husband. Also he should be treated by a gastrointerologist Best of luck to you both. Ask any questions of me will try to give you info.Peggy

By tobimax
Posted May 30, 2009 at 5:17 pm
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Thanks for responding. My husband's doctor, a gastroenterologist, does not want to give out too much info. I know they are trying to find the answers- probably because I ask so many questions. Were you jaundice? The doc is trying to find out why his jaundice returned. He has had several blood tests, EGDs, colonoscopy, MRI, CAT scan, and the list goes on. The doc says it "may" be autoimmune since my husband does not drink.
It is nice to be able to talk about this. I feel like when you tell someone about cirrhois they assume it is all alcohol related.
You seem to have a very strong will to survive and I wish you the best of luck. I will keep you in my prayers.

By PEGGYB
Posted May 30, 2009 at 8:46 pm
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I was diagnosed through blood tests it was called a smooth muscle,i was positive for autoimmune. yes i was very jaundiced had a rash big purple bumps especially on my forehead.Has your husband had a nuclear liver scan or liver biopsies? I hope they can solve this soon its frusterating when there is no clear answer If yor doc can't find the answers i hope he can send him to someone who can, good luck and keep asking questions.peg

By Learning1
Posted June 1, 2009 at 1:00 am
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Any autoimmune problems are challenging, both for traditional physicians and for alternative medicine.

The most success I've heard of with alternative options is using Cosmodic (an advanced type of Scenar, a Russian electro-stimulation, biofeedback type device developed through their space program). Not a lot is written about it, but apparenlty auto-immune problems are routinely treated in Russia, and some therapists in England have also treated different problems with success. And Dr. Irina Kossovoskaia (a former Russian eye surgeon, now Canadian naturopath who does a lot with Sceanar and Cosmodic, has done some treatment of auto-immune problems, and has done some training on this. Her web site is www.truescenar.com, and there is an email and phone contact there. Call and her assistants might have some ideas, and might be able to suggest an approach, and the odds of success, based on the known research in this area. They won't be in the office until next Tursday, since they are running a training conference this weekend, but should be available after that.

One of the Scenar related sites says the "brain regulates the nerve force, the meridian system (wireless anatomy), as well as the neuroimmunological functions through neurohormones and neuropeptides. Chronic disease can be viewed as blocked or 'stuck' energy. Quite simply, the brain is not recognizing the trauma, the immune function follows, and pathology continues to grow on its own. This quite summarily sums up the degenerative process of cancer, allergy, autoimmune disease (diabetes, lupus, MS), and many others."

These problems have been treated with varying degrees of success using Scenar, and especially with Cosmodic.
A couple links to various auto-immune success situatoins are:
http://www.scenar-therapy.com/forum/viewtopic.php?f=4&t=101
http://www.scenar-therapy.com/publications/ex715ag_personal_use/
http://www.scenar-therapy.com/publications/ex735_parkinson/
http://www.scenar-therapy.com/publications/parkinson/

By Scribner
Posted June 2, 2009 at 9:07 am
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Dear Tobimax-

Have they ruled out Hepatitis C and Wilson's? I ask because they told me my son had Autoimmune hepatitis OR Wilsons Disease. He ended up having Wilson's. They have a lot of the same symptoms. Just curious and trying to be helpful. As far as your doctor not giving you info, I don't understand that. He should give you the "possibilites" so you could research them. You, as the caregiver, need to know what you are in for too - your husbands care will be in your hands at home. Ask as many questions as you want - that is great. You deserve to be informed - especially now, when things are so confusing for you. How knowledgable is your doctor in regards to liver disease? We went to a "specialist" who never had one case of Wilson's Disease - we got transfered. If you are not comfortable - please ask to be transferred. Time is crutial.

Oh, by the way - I have 2 children with Wilson's Disease. My son went into liver failure and had a transplant 9-1-08 and my daughter is on medication to hopefully flush out her extra copper before damaging her liver - it is enlarged, but they don't think she has damage yet. I am on several sites for info and support. I would encourage you to branch out as well. The Wilson's site is great - the disease is different, but yet, some of the patients have experienced similar experiences that you may find comfort in conversing with them. Prayers go out to you. Keep your faith.

By tobimax
Posted June 20, 2009 at 1:05 pm
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Thanks for the info. I am sorry to hear that both of your children has Wilson's Disease. It sounds like you have a very positive attitude. My husband has had several test - ruling out everything except for autoimmune. His doctor, with some prompting from me, has re checked his blood work, done an eus, scans, and he is scheduled for another biopsy. The doctor has recommended that my husband is put on the transplant list. He will be going to see another doctor for a second opinion first. Since you have been through this - how does it work? Did you wait a long time before your son received the transplant? Was he hospitalized for a long time before the procedure? I cannot imagine what you were feeling since it was your child. I apologize for asking so many question but I really appreciate all the advice I can get! I will be praying for you and your family.
Tobi

By PEGGYB
Posted June 20, 2009 at 4:06 pm
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diagnosis long time coming but mine was too. I assume they have him on a drug to shut down the immune system to stop the attack so the liver can start healing. I was on prednisone 60 mgs a day for about 2 years til labs were normal I did not have any liver left to scar just regenerated cells. Its good they know what the problem is. Hopefully the scaring is not terribly severe and will improve with time. thank you for letting me know. Please keep me posted with recovery. peg

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