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

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.
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Avatar_m_tn
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

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Avatar_f_tn
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.
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Avatar_m_tn
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
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Avatar_n_tn
hey Jim - I say go "green" if you're going tea...But I'm a dip what'da I know  hehehe
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Avatar_m_tn
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
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Avatar_n_tn
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**
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Avatar_m_tn
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
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Avatar_f_tn
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!
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92903_tn?1309908311
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?
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Avatar_n_tn
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
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Avatar_m_tn
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
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92903_tn?1309908311
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.
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Avatar_m_tn
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
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Avatar_m_tn
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
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Avatar_m_tn
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
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Avatar_f_tn
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.
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Avatar_m_tn
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
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Avatar_m_tn
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

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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...
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92903_tn?1309908311
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.
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Avatar_m_tn
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
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92903_tn?1309908311
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.

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Avatar_m_tn
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
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Avatar_n_tn
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.
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Avatar_n_tn
You probably already know this, but GERD has been associated with esophogeal cancer (not that you need one more thing to worry about).  This is another good reason to consider drinking green tea (or better yet...white tea).  I drink white tea during the day and rooibos tea after 6 p.m.  Read below about green tea and esophogeal cancer:

______________________________________

5-24-04 Green tea may help to lower the prevalence of esophageal adenocarcinoma, one of the fastest growing cancers in western countries, said researchers speaking at a meeting on digestive disease in the US last week.

Previous studies have found that the major polyphenol in green tea extracts, epigallocatechin gallate (EGCG), has chemopreventive effects on cancers affecting a number of organs in the digestive tract.

The team from the Harvard Medical School reported that EGCG inhibits the growth and reproduction of cancer cells (SEG-1 and BIC-1)associated with Barrett's esophagus. Barrett's esophagus is a condition caused by stomach acid creeping back up from the stomach. The acid damage causes the cells lining the esophagus to change and raises the risk of esophageal cancer by 30 to 40 times.

The researchers concluded that exposure to EGCG induces apoptosis, or programmed cell death, and results in increased levels of the proteins caspase-3 and cleaved poly-ADP-ribose polymerase (PARP), known to play a role in DNA damage repair.
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Avatar_m_tn
Susan,

Thanks for the reference. I used to drink a lot of caffeinated tea (green/black) for all the touted reasons, but currently have to stay clear of caffeine until some urinary issues clear up.

Meanwhile I'm hoping to find a brew that will help both my digestive and urinary system. I'll definitely look into rooibos.

-- Jim
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Avatar_n_tn
hello everyone. i hope you all are doing well. i have run into a small problem and need some advice. i am on week 27 of 48 wks and am now on a new insurance through medicare as of january. i have been calling and calling my new insurance company to get my pegintron paid and shipped to me. the phone is constantly busy and the voicemails are full. i don't know what to do. i have 2 shots left and am worried about how i'm gonna get more. my gi says he can sign me up for commitment to care. i am wondering if i can get commitment to care help if i ALREADY have an insurance company that will pay for pegintron if i can just get through to them on their phone. can anyone give me any advice as to what i can do. i would appreciate all advice from any of you. thank you and have a nice evening.
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Avatar_m_tn
Yup. Your're right, and I was scoped earlier this year. My specific sug-set of GERD (LPR) actually affects things higher (larynx, throat, sinus) up but anything that can calm things down is good.

Green tea used to be my favorite both for taste and anti-carcinogenic  properties but some (including here recently)have questioned the health benefits of the decaffination process. Do you know what the story is on this? Personally, I'd like to go back to some green tea in a decaf formula.

-- Jim
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Avatar_n_tn
Ahhh, Rooibos is definitely what you want.  It has a very beneficial effect on digestive problems.  Read below:

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Rooibos Herbal Tea
Rooibos tea (Aspalathus linearis) is rich in minerals and anti-oxidants and is anti-allergic, anti-inflammatory and anti-spasmodic. It can be strongly recommended for headaches, disturbed sleeping patterns, light depression and hypertension because in is caffeine free and has a soothing effect on the central nervous system. Rooibos tea also soothes stomach and digestive problems like nausea, vomiting, heartburn, stomach ulcers and constipation. Furthermore it has a soothing effect on the skin and relieves skin irritations like eczema and acne when it is applied directly to the affected areas.
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I buy the cheap stuff at Wal-Mart...Celestial Seasoning's Madagascar Vanilla Red Tea.  $1.99 a box in my neck of the woods.

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Avatar_m_tn
You could try the Peg Intron help line, maybe they can expedite. Also, try calling your insurance company exactly when they open in the morning (or even a little earlier) and hopefully you'll get early in the cue. I recently spent 90 minutes on hold waiting for my insurance company to pick up. A speaker phone is the only way to do this. Good luck!

-- Jim
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86075_tn?1238118691
I know, I read Tallblondes suggestions of that tea and we take many of the same things so I went out and bought it. Can you believe what a weenie I am? Get wired over a cup of da roobiboos (how do you spell that?) tea?

A little caffeine isnt a bad thing, I can't take it (like I said, can't take being wired and anything wires me)and I share your concerns about the decaffenating process. Actually, been hearing news reports about Polyphenon E, a green tea extract, that supposedly works even better than drinking the tea. They did studies on it and they are incorporating it with chemotherapy patients, clinicaltrials.gov was recruiting people for its studies with it. And of course, these agents usually work because they are reducing inflammtion in the system, the root cause of most disease. So, it's part of my regimen now, ha ha ha, I'd be dangerous if I wasn't so predictable. But I've been drinking chamomile since I was a little kid, being latina don't you know...

Goof: hey, keep your foul weather up there will ya?, speaking of weenies, I can't take this cold! it's 65!
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Avatar_n_tn
Here's a pretty good answer from the Salada website:

With interest in green tea surging, a number of decaffeinated products have come onto the market. The obvious question is whether the decaffeination process affects the potential health benefits of green tea. Several studies have identified potentially powerful antioxidants in green tea. One of these antioxidants, known as EGCG is found only in green tea leaves. Researchers theorize that antioxidants contribute to good health by neutralizing free radicals. Free radicals are believed to help cause certain diseases such as cancer. The catechins in green tea are also believed to work in other ways to prevent some types of cancer as well as cardiovascular disease.

The answer to the question depends on how the tea was decaffeinated. There are two accepted methods of decaffeination in the United States. One process uses a solvent, Ethyl Acetate, to remove the caffeine. The other process involves carbon dioxide - water and effervescence. Green tea decaffeinated using Ehtyl Acetate retains only about thirty percent of EGCG and other catechins thought to be responsible for most of green tea's health benefits. However, green tea decaffeinated with carbon dioxide - water and effervescence retains about 95% of the original catechins.

Salada Naturally Decaffeinated 100% Green Tea uses "the right method" - water and effervescence
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Avatar_m_tn
Thanks again. I guess a trip to the local market/health food store is in order. Like you suggest, green tea has a lot going for it with all the protective anti-oxidants. And recently, studies suggest that it can help prevent gum disease which lately has been associated with heart disease. So - with the addition of the
catechins you mention -- green tea seems to be doubly protective of the heart.

-- Jim
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Avatar_m_tn
I like caffeine too, just have to avoid it for now. Thanks for the link.

-- Jim
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Avatar_m_tn
I have read that caffinated beverages are dehydrating and I have also read that it simply isn't true. In any event, I assume drinking de-caffinated tea, or herbals such as camomile are not dehydrating and therefore can be part of my required daily liquid input.
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Avatar_n_tn
Same thing happened to me, at the 1st of the year my coverage on meds changed. It took me 7 or 8 calls with a number of voice messages. I got my pegasys 2 days before shot day. I was getting pretty stressed out. Try to get a human on the phone, even if it isn't your contact or the right department. Try not to go ballistic, be Nice; that's what I finally had to do. I was so un-nerved before I finally got a voice that seemed to be doing something, then I got my meds a day and half later. Wishing well....Peace
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Avatar_f_tn
I had the same problem and it took quite a bit to get them to go through as well.  Talk about panic...I've been there.
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