My Stunning Hypothesis

[Guest guest]

,

I have only scanned your hypothesis but have printed it to read in detail later.

It caught my interest as I was scanning it because, as I have told everyone, I

have autoimmune hepatitis in addition to chronic pancreatitis. Autoimmune hep

is a totally different liver disease than hep C in that it is caused by my own

immune system attacking my liver and not a virus. However, in learning about

liver disease, I was amazed to find out how much a liver that is not functioning

as well as it should can impact just about anything in your entire body. In my

case, we know that I have not one, but two different genes which can lead to

autoimmune diseases. That explains why I have several autoimmune diseases -

lupus, autoimmune hepatitis, antiphospholipid syndrome (autoimmune clotting

disorder), and a genetic IgG deficiency.

As I was scanning your article, your hypothesis makes a lot of sense to me.

However, I have a feeling most doctors may pooh pooh it just as many have pooh

poohed the idea that my pancreatitis is autoimmune in nature. I don't for one

minute believe that the liver, pancreas, bile ducts, and gallbladder all live in

a vacuum with damage to one never affecting the other.

I would love to hear what your doctors have to say about all of this and any

other info you may find.

Like you (and most in the group), my gallbladder has been removed. The short

version of my history is as follows

Oct, 1996 - diagnosed with systemic lupus

June, 1998 - gallbladder removed due to stones, sludge and only 13% functioning

Jan, 2000 - first 'documented' attack of acute pancreatitis

Feb, 2001 - Jul 2002 - no major attacks of pancreatitis, but still had pain that

ranged from just a naggy sort to sometimes level 10 (for about 20 minutes or so)

Jul, 2002 - return of acute panc attacks - with a vengance - never able to work

a full week from that time on

Jul, 2002 - diagnosed with antiphospholipid syndrome (clotting disorder)

Jan, 2003 - diagnosed with autoimmune hepatitis and stage 3 fibrosis (damage) to

my liver after having a liver biopsy

Jan, 2003 - diagnosed with type 2 diabetes

Mar, 2003 - retired on disability from my job

Jun, 2003 - diagnosed with chronic pancreatitis (vs recurring acute panc)

Feb, 2004 - diagnosed with genetic IgG deficiency (caused by same genes that

cause autoimmune disorders)

Mar, 2004 - first 'documented' TIA (transient ischemic attack/mini stroke)

Take care and try to have a nice Thanksgiving.

W

[Guest guest]

As I former nurse, and having had more contaminated needle sticks

than I care to remember, and after going thru 6 months of HIV, Hep B

and Hep C testing several times. I NEVER had a conversion of any of

them.

I also have pancreatic divisum and SOD, along with an annular

pancreas which many have never heard of. I also have many of the

symptoms that you mentioned, the fatique, the joint problems, more

than enough to make it a coincidence. I believe there are alot of

others out there that would agree with our combined symptoms.

Have your Drs. suggested any type of interferon therapy. My step-

father had Hepatitis C and did this I think for about 6 months, and

the virus can no longer be detected in his blood work. I know that

it is quite expensive, somehow he got into a clincal study I think,

it has been a while since I have heard my mom speak of it and I have

forgotten alot.... other than the tests reveal he doesn't have the

virus anymore. I hope you can find a Dr. that will help you get the

treatment you need. Pancreas divisum is a congential defect, it is

not a cause and effect type situation. Gallbladders when removed are

usually not cultured for bacteria, they are however looked at by a

pathologist, just as any organ removed and they do what is called a

gross specimen. They look at the organ and look for problems that

might have caused the issue... IE stones, necrosis ( or tissue

death). Keep us posted as to what the Drs. treatment plan for your

disease process, it might help others in the same situation.

Pancreatitis is a dreadful disease, I can only speak for myself, but

there are times I have been so physically wasted (spent) that I

could barely hold my head up. There were times I just felt like I

was loosing it, I didn't understand why I feel so bad, and of course

the Drs. are of no help, especially family pratice, they are jacks

of all trades, they know a little about everything, and alot of

nothing.

Atwell LPN

[Guest guest]

I userstand your frustration, I really do. At the ripe old age of 30

I awoke to what felt as though I had been beaten in the back with a

sledge hammer, that was 8 years ago. I knew I had the annular

pancreas from the age of 18, because of an open gallbladder removal

at that time, the Dr. just told my family pray this never gives her

problems, I have seen it twice, her, and with another guy and he is

dead.

I NEVER, had any problems with pain, looking back, I was the one who

always had the GI flu ( you know the one sitting on the pot and

holding the trash can too) Just stupid little things like

chronically fatiqued, lymph node edema in the neck. Occasionally I

would have a little rt sided upper quad pain, but nothing like what

I have experienced the last 8 years. From my understand and talking

with others on this board since either 1999 or 2000, alot or most

were the same. I don't mean to take a libery that isn't mine, but I

have talked with Karyn W. many times and I don't think she ever had

a concrete symptom, until she was told " You need to have part of

your pancreas removed " after being hospitalized one time. Forgive me

Karyn if I am wrong or have forgotten how it goes, I think I

remember it right. Sometimes there just aren't answers, we can't go

back, all we can do is go forward, and hope and do the right things

for ourselves.

I hope once your testing is complete you get the medical

intervention you need. My step-dad did well with his interferon, he

usually gave it to himself at night before bedtime, that way he

could sleep thru the side effects, you will learn what works best

for you.

Atwell LPN