Hepitis C

[maggie]

I was just at my nero and discussing my new issue. Not only do I have pots, but a recent test shows I now have hepitis c. My nero was wondering if anyone here on the site has this as well and if they're willing to discuss this topic what if anything are they doing about this. I saw a dr in Miami which is one of the best hep c clinics in US and there is a vaccine coming out to cure hep c in 2011. The dr in Miami has never had a case of pots and took time to look it up and discuss this with me during my appointment with him. At this point I have no liver damage and I return in two years to see how my liver is doing. The dr hopes to give me the vaccine in 2015. He wants to make sure if there are any bugs in the vaccine so that's why he's waiting to give it to me.

Maggie

[juliegee]

I was just at my nero and discussing my new issue. Not only do I have pots, but a recent test shows I now have hepitis c. My nero was wondering if anyone here on the site has this as well and if they're willing to discuss this topic what if anything are they doing about this. I saw a dr in Miami which is one of the best hep c clinics in US and there is a vaccine coming out to cure hep c in 2011. The dr in Miami has never had a case of pots and took time to look it up and discuss this with me during my appointment with him. At this point I have no liver damage and I return in two years to see how my liver is doing. The dr hopes to give me the vaccine in 2015. He wants to make sure if there are any bugs in the vaccine so that's why he's waiting to give it to me.

Maggie

Wow, Maggie- I'm really sorry.... It's so hard to get a new DX on top of our chronic stuff . Years ago when I was in my late 20's, I became VERY sick- mostly GI stuff and excruciating pain- I was hospitalized for weeks on IV pain meds. At that time, I was told that I had hepatitis. However, when they ran the test to see WHICH one, A, C, etc.- it came up negative. The docs still insisted that I had it as my liver function numbers were astronomical. Long story- short, I was transferred to a different hospital, eventually developed severe pancreatitis. After almost a month, I was released w/o ever knowing what I had. In retrospect, I think it was my gallbladder. There was no HIDA scan back then to confirm a problem. Twenty years later, (just a few years ago,) the same pain came back. Once again, my liver tests were sky high. By the time a surgeon got in to remove my gallbladder, it was a mess- covered in adhesions that bound it to the liver. Once that was removed, my liver issues have gone away.

Sorry to babble on, but I wanted to make sure you weren't experiencing something similar. If you've had the test to confirm Hep C, then that's pretty conclusive. If you have the high liver function #'s, but your hepatitis panel is clean- you might have something like I did- GB issues masquerading as hepatitis. Some here have surmised that we have early GB issues due to too small of a supply of blood getting to the organ.

The vaccine looks very promising. How wonderful that that's available now. Many people are leading normal quality lives with hepatitis, like Naomi Judd. I found this website that has lots of great info, like possible meds you could be taking NOW. She also recommends a different liver test rather than relying on blood tests. Two years seems like a VERY long time to wait to see your doctor.

http://www.naomijudd.com/hepatitisC.php

The site also has important lifestyle changes that you need to make to keep yourself as healthy as possible now that you're dealing with a double whammy (POTS & Hep C.) I'm sending healing prayers and good thoughts your way. Post & let us know how you are doing.

Julie

[maggie]

Julie thanks for your response. I did argue with the dr in regards to my results when they told me, especially since I had a negative report first about ten years ago. The dr sent my blood work to Mayo and they confirmed what the tests results were. I can't take the meds they have now because of a liver enzyme problem I have, that's why I can take the vaccine and not the drugs. Unfortunately my strain of hep c can not be helped with drugs anyway. I'm sorry if I didn't get across that I saw the dr in Miami in three weeks of dx, now I go back in two years to see how my liver is doing and learn what the results they are getting from the vaccine. The dr in Miami is now my primary, he gave me his home phone number, such a nice dr. He wants to know if any other dr that I'm seeing changes anything I first have to check with him so that it won't hurt my liver. It has been a difficult time trying to process this all. At least this time I got a dx that many people have and they are doing tons of research on, not like pots.

Maggie