I recieved info that I tested positive. What do I need to ask the Dr.?

[creekdweller2002]

I just got my test results back. Good news is HIV was negitive, Bad news HEP C tested positive. What do I need to ask the Dr. about? I am suppose to go in this week for a ultrasound on my Liver? I think it's for my Liver. What are the good counts and bad counts. Any information you can pass on to me would be appreciated. As I am kinda of slow on the uptake please keep it simple.

[jmjm530]

Well, good news and bad news, it could have been worse :)

First, you might ask if your dx is positive from a viral load test or an antibody test. If the former, you want to know your viral load, genotype and liver enzymes. Ask for copies of all tests for your own files. If you've only had an antibody test done, then you'll want your viral load and genotype tested. A positive hep c antibody does not mean you definitely have the virus. And depending on what the results are, you might also want a liver biopsy.

Is your doctor a liver specialist (hepatologist)? You don't need to see one initially, but when it comes to the point of making a treatment decision, it's not a bad idea to at least consult with one and usually they're set up better to do and read the biopsies.

There's also a thread below --"Not treating--what questions to ask" that has some tips.

Good luck.

-- Jim

[cuteus]

creek, if indeed you are chronically infected with hep c, which is about 75-80% of people infected with the virus, your best weapon is to learn as much as you can about the illness. It has become a waiting game until you have had all the tests needed. The main one, is the PCR, either qualitative (tells you if the virus is still in your blood) or the quantitative(tries to count how many rna particles are present in your blood, sort of "counting" the virus). If that  one is positive, you have chronic hcv. a good site to gather medical info is janis7hepc.com.  Until you know for sure whether you have hcv or not, try not to let your mind overwhelm you with worse case scenarios.  It is easier typed than done, but try.  ANd, don't let your mind tell you that you are on your way out, time is on our side most of the time.
keep us posted, and hopefully you are one of the lucky 20% who cleared the virus on their own.

[jmjm530]

Anyone drink camomile tea on treatment? Camomile has been getting some press lately as an anti-bacterial/anti-inflammatory and calming agent -- so I thought it might help a bit with both my GERD (reflux) and current prostate infection which has put me on antibiotics. Some recommend 4-5 cups a day for a few weeks.  Haven't read anything negative about camomile regarding the liver, or drug interactions, but thought I'd ask for the collective wisdom what it thinks.

-- Jim

[vegas777]

hey Jim - I say go "green" if you're going tea...But I'm a dip what'da I know  hehehe

[jmjm530]

I gotta lay off caffeine for now -- do you know if decaffinated green tea has all the good stuff the caffinated kind has? Good to hear from ya -- hope your spirits are high and let us know any future decisions regarding treatment or not. BTW I know at one point you were interested in Vertex. They project preliminary (3 month-post treatment)SVR data by the end of this year, so you should definitely stay on top of those trials if you don't decide to treat beforehand.

-- Jim

[vegas777]

I buy my tea online, it's rooibus, it's from africa and yes decaff tea has all the bennies you want...

yeah I am hearing so many different things about vertex, not so sure it's all it's cracked up to be...but I am having a hard time understanding it all too, so maybe it's just me....

**dippa dee doo dah**

[jmjm530]

On Vertex -- While I'm personally optimistic, I respect the skeptical line as well. But I think one statement that everyone can agree on is only time will tell. That's all I'm saying -- so if you decide not to treat before, keep a watch later this year for preliminary SVR data and let's see how some of the numbers pan out. Thanks for the tea info.

-- Jim

[NYgirl]

Well I know how you feel - that of course is how my results came out too.

It's bad news of course but better than it could have been

Do you have any idea how long you may have had this?  My doctor figures I had it for 25 years and never knew.  He came to this conclusion because of my biopsy and the damage that was done already.

I'd always ADVISE someone to have a biopsy pronto to find out what liver damage you are dealing with first of all.  The ULTRASOUND will ONLY tell you if you have things like malignancy's or tumors it will NOT tell you the Grade or Stage of your liver damage.  That is pretty much will tell you what is going on so I'd schedule that asap.

Many people believe when they hear "your ultrasound was perfect" that that is IT and that is BAD information. While it means you don't have tumors...remember the condition and damage of your liver is of paramount importance.

Most likely you will have weekly CBCs to tell you what is going on with your blood work.

When you get your results come on in here and put them up and people will take the time to explain what is what.

THE BEST THING you can do is learn every single thing you can about this disease so you know what is going on in YOUR body.  Treatment is DOABLE for most people - not fun but manageable and if you do need to...know that we are all here in the same boat.

Best of luck!

[GoofyDad]

Been thinking about VX-950 vis-a-vis our discussion on INF therapy's mission of trainnig the immune system to deal with Hep C infection. As I undestand it, VX-950 is an agent that works at the viral level to unmask it to our immune systems. I wonder if, like a vacine, this would serve to train and condition our immune systems to provide a suitable stand alone response?

[dammitjanet]

I like the Celestial Seasonings Rooibus Madagascar Vanilla Red.  Delicious!!  The red tea is very high in antioxidants, and I read somewhere that it was proven to prevent or reduce cirrhosis in lab rats. (For whatever that's worth!)  For iced tea, I like Turkey Hill Green Tea with Ginsing & Honey.  Arizona makes one also, but it's a little sweeter.  I think you have to drink a lot of any of it to get the antioxidant benefits, but it's a nice switch from water to drink something with flavor.  DJ

[jmjm530]

Interesting speculation. I've got a call into a hepatologist regarding my end game strategy -- phasing down the peg or not -- and if there's time I'll try and pick his brains on Vertex a little. Maybe CTON will have more to add.

-- Jim

[GoofyDad]

I wasn't too clear in my earlier post. I guess I'm wondering a little about the durability of a vx-950 response, if a re-conditioned immune response is a requirement of a sustained and durable response.

CTON - If you see this, it is an extension of our talk yesterday concerning some hepatologists assertions that INF therapy serves to condition the immune system so as to prepare it to do battle against HCV stand alone.

[dyce]

Mr.BB how are you doin today?Shot 3 yesterday thats good,you'll be done before you know it.I had a rough day at work.Im having sx's from this virus and can't wait to start tx.

Jim my wife suffers from depression and sleep disorders and her doc recommened the camomile tea so there must be some benefits.Sorry to hear about your other problems and thanks for the heads up on the diet ?.Also I've drank the decaffinated green tea and it seems just as beneficial as the caffenated.Hope this helps you and GOODLUCK!!!

Dyce

[Mister beagle bailey]

I feel bad for you,what kind of sx's are you having?  When do you start is it Feb.?  I keep confusing every one, there are alot of us, sorry.  
Please let me know.

  The Beagle

[dyce]

Thanks for asking!Going for bx this Friday and it seems like a eternity.Keep getting this ringing in my ears and I feel like I'm going to jump outta my skin.Today at work I just stayed really busy and that helped.Next month on the 8th I revisit the doc and well get tx started.C.Ya

Dyce

[cuteus]

re immune system "mopping" up whatever is left after tx, it looks like it would only be to the advantage of those with residual HCV, if at all. In that study that published finding HCV in 4 out of 108 SVR subjects, statistically insignificant number, they also said that those 4 did not relapse after 5 yr follow up.  They seem to think that whatever is left, can not replicate. Whether its presence in the liver adds to the risk of HCC is food for more research.

[dyce]

Thats a good deal the tx is getting rid of the sx's for you!I want the hepman to give me pegasy and 1200 rib..if my tsh is a issue maybe he"ll tx for that.Hopefully I won't get to anemic.I really don't believe I would tx if not for reading other peoples experiences and talking here.

Dyce

[jmjm530]

There seems to be an association between how fast the viral load gets knocked down and a sustained and durable response.

With interferon, it seems that viral load drops very quickly in some folks and but longer (if at all) in others. It's possible that those that drop quickly simply have a stronger immune system. Just speculation here.

In the case of Vertex, everyone seems to drop very fast. So maybe a different mechanism is at work. As far as how durable the response is, with Vertex we'll know more when 3-month post treatment SVR data available hopefully later this year.

-- Jim

[Forseegood]

I'm a firm believer in the wonders of chamomile, I put into my bath  as well! giant teabag that I am! I'm convinced it helps me to relax and sleep at night...Have you ever tried Sleepytime tea by Celestial Seasonings? Really good. You know I tried that Roobiboos(?) tea or whatever, and it actually made me feel a little speedy, I have such a sensitive system, weird.

I wouldn't be surprised if Chamomile helped with inflammation, so many herbs do. Call me crazy, but I like to see people who are treating like you, NY girl, and so many others, looking for other ways to help their health while on those strong meds, I know I will...

beautiful day in the neighorhood, guess I'll take the pooch for a walk in the woods, be well! Oh, and Chev, thanks for the inspiring words from DR. MLK! They are going to have a big service at the AME church, a favorite church of his, and I'm thinking if I have the energy I'll go downtown for it. Love the gospel singing there...

[GoofyDad]

You probably have this down, but for the benefit of other interested parties - based on my limited understanding:

It is a different mechanism in that INF is stimulating the immune system, where as VX-950 works to unmask the virus, making it visible to the immune system.

The similarity of course, is that with both VX-950 and INF, the immune system actually does the work of assaulting the virus.

So my speculation would be that if INF therapy does in fact leave small viral levels and a reinforced immune system, VX-950 (at least in mono-therapy) would need to either erradicate the virus completely, or somehow durably bolster the immune response to deal with any remnant virus.

[jmjm530]

I confess I haven't spent much time reading up on the different mechanisms at work with peg versus the protease inhibitors. But, indeed, if Vertex -- unlike Peg -- targets/attacks/destroys the virus directly -- then there would be no need for it to boost the immune system as well.

I guess how completely vertex destroys the virus will come out in the wash when monotherapy versus dual therapy trial data arrives.

Current speculation seems to be that Vertex won't be strong enough for a durable response without the Peg for now. But in the future, perhaps combined with other anti-virals as in the HIV model -- speculation is that peg will be out of the picture.

-- Jim

[GoofyDad]

Not to split hairs, but VX unmasks the virus and the immune system takes over from there - destroying a much easier target virus. My concern is whether the immune system will be able to deal with any remaining virus left over once VX therapy is withdrawn and the virus returns to stealth mode. Smarter minds than mine obviously think it will.

[jmjm530]

jmjm530: "I can say that Goofy and Forseegood are two different people...."

Goofy: Well I ain't menopausal, I can say that much with certainty. I don't know what post Jim was trying to set straight..... but paranoia runs deep these days! Too, too funny!
---------------------------------------------------------
Regarding my quote:

At least how I read it, one of our members that you two were recently "conversing" with recently intimated that a certain circle of people may have multiple identities. I was just trying to stand up you both. But now that I think about it, your posts always do follow each other very closely, although I imagine the only herb Goofy has ingested is Herb Block. LOL.

-- Jim

[Tallblonde]

Jim,

If you want the benefits of tea, without the effects of caffeine, I would suggest drinking Rooibos.  There have been several studies which suggest that it protects the liver.  Here's a short blurb on one:

Hepatoprotective effect of rooibos tea (Aspalathus linearis) on CCl4-induced liver damage in rats.
Physiol Res. 2003;52(4):461-6.
Hepatoprotective properties of rooibos tea (Aspalathus linearis) were investigated in a rat model of liver injury induced by carbon tetrachloride (CCl(4)). Rooibos tea, like N-acetyl-L-cysteine which was used for the comparison, showed histological regression of steatosis and cirrhosis in the liver tissue with a significant inhibition of the increase of liver tissue concentrations of malondialdehyde, triacylglycerols and cholesterol. Simultaneously, rooibos tea significantly suppressed mainly the increase in plasma activities of aminotransferases (ALT, AST), alkaline phosphatase and billirubin concentrations, which are considered as markers of liver functional state. The antifibrotic effect in the experimental model of hepatic cirrhosis of rats suggests the use of rooibos tea as a plant hepatoprotector in the diet of patients with hepatopathies.