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My genotype

I got more lab results.. My Genotype is 1b with hcv quantitation 847,000. SGOT 44, SGPT 54 and I was also positvie for Hept which is the first time the Heptitis A came back positive.  My Sonogram showed a fattie liver no masses I see the Hepatologist tomorrow. At which time I will be getting my appointment for the liver biopsy.  What do I need to ask tomorrow.  Everything that I have read states I should have got vac for the hept a when I was diagnosed with hept c.  I did not.  Can I still get the vac now?
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Avatar universal
definitely get the hep a and b vaccine especially hep b vaccine first because that is a 3 series of injections that take 6 mos to complete at a dr off I have type 1b also my advice to lower viral is buckwheat tea from a korean market is the only place I know of that you can purchase this particular tea it has factors in the tea to lower hep c viral.  The new triple therapy includes interferon for 1a or 1b victrelis ribavirin and interferon all 3 together is like a 48 wk treatment plan that can have up to 90 side effects if you are newly diagnosed and under 2 mil viral can wait for treatment as long as your under 2 mil viral but I wouldnt wait more than 5 years can still get abdominal damage just from the hep being active for length of time.
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Avatar universal
shana-- maybe Snook will come by - he also is 29 and treated and cured.  He did have significant liver damage tho.  Sounds like having children will be one of the major deciding factors for you.

So to do the math --- lets say you decide to treat now - that is 1 year on treatment and 6 months post that you CANNOT (absolutely) conceive - the meds are dangerous to the fetus.  So that puts you at 31 before you conceive, still young. Now let's say you decide to wait for better treatments to come along. That is fine if you plan to have your children right now (and there is minimal risk, maybe 3%, that the virus will be transferred to the baby).  However, what if you are not quite ready to have children now.  In that case you are facing the problem down the way.  Maybe the kinder treatments will not materialize down the way and then you may wish you had treated now.  There is no magic answer.  It takes lots of research and soul searching.  Should you decide not to treat now, a biopsy every 3 years is advisable.

Jennifer--- You sound like me - found out I had hep C in 1993 and decided to do something about it this year (at age 57).  I also am Geno 1a, I had a beginning vl of 1.52 million IU and was at 40 IU at week 12. Since you are going into this determined to treat, there is a pretty good chance the GI will not want to biopsy.  Please insist on one as it may make a difference later in determining course of action.  Since the interferon can make your white blood count go way down and the Ribavirin can do the same with the red blood counts it is very important to know how the doctor will deal with this.  If he will not prescribe the blood growth meds to help, find another doc.  Please  

We were all very scared at diagnosis and before treatment.  Please understand that the anxiety disappears after treatment begins.  Altho everyone does not clear, I must say that the results posted on this forum are promising. I track all of those who started in June and July when I did and I think about 80% were clear at 12 weeks.  And another thing, interferon is the only cure.  Herbs may help, but only interferon, at the present time, cures

friole
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Avatar universal
the people that are telling you that got "cured" with herbs can not be telling you the complete truth. Getting your liver panel down to the normal range is not indicative of a cure. These people have to show hcv infection by PCR test and HCV clearance by the same test. if they do not have that information, they are trying to sell you something.  Some people clear the virus on their own (20 to 30%, depending which article you read), but it is usually in the acute stage of the infection(in the early stages). Most people do not know they carry the hcv virus in order to treat early, which also brings a high rate of cure from the infection. Nothing besides your immune system and the present therapy can kill hcv. Many folks here have done herbs to feel better or to reduce the inflammation and high levels of the liver panel, none of them got a cure. SOme of them are now on treatment(tx). If all you are reading is testimonials claiming a cure, you are wasting your time. IF you find actual studies by reputable researchers that can claim the same. Post us the link.
good luck
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85135 tn?1227289772
He, he. I developed a rash on my arms about 3 weeks into tx. OH NO, I've got Riba Rash. I put on all kinds of creams and lotions to no avail. I then remembered I was clearing some woods behind my house that had poison Ivy. That's right. I had a case of Poison Ivy. A week on Calamine lotion and I was fine.
Good point you brought up about, is it a sx or something unrelated. Thanks.


Dana
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Avatar universal
Sorry Deb personally I don't know of any other real "cure" except the Riba/Interferon combos.  I do think that the herbs can be helpful but I have not heard of it being a "cure".

You told Friole what your PCR is....viral load numbers.

If you decide to treat using standard meds like most of us are...make sure you watch the anemia and hemoglobin numbers. I have become CRAZED about this after suffering through it.

Do as much reading and studying and asking that you can.  Everything you learn gives you a better sense of power over this stupid disease!

Debby
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Avatar universal
I'm not sure what PCR's are Friole.  When i was diagnosed they told me I was a Geno type 1. My viral load was 2,137. It jumps all over the place  65,000 to 10,000.  I think it was doing this because of my back surgery and having to be on pain pills.  I will have to ask the doctor the other questions.  Lackalustre, how long did you try the herbs?  Now i'm nervous.  I have talked with many people that have been cured with holistic meds.  I was just wondering what the long term effects are on doing the interfern/rab?  This stuff is real bad for the body ( a form of chemo )  Chemo destroys all your organs in some way.  

I would appreciate anyone reading this that has some experience with holistic medicine to write me.  Thanks to all

Deb
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Avatar universal
And remember...I found recently I was blaming EVERYTHING on my disease...even thing that had NOTHING TO DO WITH IT I was like oh no another sx!

I got these bumps in the front of my tongue and it was so RAW I was like oh no this stupid disease~I hate it!  I better call my doctor! What will he say?!!!!!!

Then I remembered I have a CAVITY and I've been running my tongue along that stupid annoying jagged hole constantly........voila......it's not the HCV but the dumb cavity annoying me!

Now...if I'd come on here before I thought of that screaming oh no new side effect!!! You might have read it and thought wow that side effect is bizarre!  And meantime......it was just a regular old every day problem!

;)
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Avatar universal
and...when you do read the comments in the message boards you visit, please keep in mind that those having the hardest time and need support more often will frequent the boards, those with easier sides do not feel the need. So you might not get a balanced picture on the boards, best to ask your GI practice, if it is a big one. Mine told me that they have pts who experienced nothing.  As for permanent effects, the jury has been out for a while and it still is. Many hep c related conditions go unnoticed and surface while on tx, maybe to remain for good. So what you read in the inserts even, could be the  result of that event and not really the meds. Of course some side effects have been documented in the regular lab rats and the human ones, but bear in mind that all meds and even herbs can cause unforeseen adverse events. Gee, food too! We have had members who came back yrs later to post their SVR status who had tons of sides and no remaining ones and you get the ones that do. Yes, a **** shoot. It is a choice of which path is the less scary to you and the one who will give you the most benefit in the long run.
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Avatar universal
You have such a soft way about posting...whenever I read something you've written it still helps ME.

I was determined to treat as well (better to try and rid myself NOW before anymore damage is done I thought!).  Please listen to what Friole has said - biopsy is crucial and knowing if your doc will prescribe Procrit or Epogen for anemia...is just to ME something that has saved my ability to remain on tx.

Without it I am not sure that I could have as I kept fainting and falling down and could barely stand let alone work or drive etc.......It was SO painful too I was shocked~!

The things that people are adament about in here - that you see everyone saying over and over are important...treat them as if they are saving your life because in fact they ARE.

These guys are the BEST and they have so much knowledge to share they REALLY are the one's I owe any success I have in tx to...not my doctor at all.

Debby

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Avatar universal
hi, shannon.  i am hoping snook does come on so you can talk to him.  i wish you could do treatment now while you are young & then forget about it and have kids.  i am on #8/48 and doing fine now but when i was 35 i didn't know i had hepc and i had my last baby.  that baby is almost 17 now & was born with hepc.  even though they said his chances were less than 2% that he would have it.  it would be so nice if it was out of your body before a baby goes in your body!  my opinion only.  good luck & just hope no one else has to find out their child has it, also.
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Avatar universal
Please post your PCR's
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105924 tn?1217607949
Oh my.... you people here are so amazing, i did not expect such a response in a day.  Thank you truly from my heary for the overwhelming acceptance and welcome :) Snook huh, i just like the name already, i would love to get in touch with someone closer to my age that has been through this. Honestly, having babies is really my biggest concern. I keep reading all this literature about how much your immune system is affected with TX and how you should not be around those that are sick or have infections.... don't children live with infections, dirt and bacteria HA HA. I just feel that at this point in my life, i would be more suitable for tx, then if i waited.

I am def going to go to some of the sources a few have mentioned and i really am not worried to much about the side effects, i am a strong woman and i can take it. I do yoga twice a week, budokon twice a week, i don't eat red meat, I try to eat as much organic, whole foods as i can afford LOL, I haven't drank alcohol in about 10 years, and I wake up every morning with a strong will to live and to make everyday happy and count as if it were my last. I have tons of support and like i said i live a life of pure happiness and little stress. I am a firm believer that your attitude and outlook on things have a huge effect on how your body reacts to certain situations. In my mind, if i beleive that the treatment is going to suck and be the worst thing in my life, then it will be; BUT if i hold my head up, stay strong and positive, use my support systems, keep up on my physical activities and just tell myself i will beat this thing, i believe that the side effects will be minor and the least of my worries.
The only side effect that makes me nervous is the depression, since i am such a positive, happy person, i don't even know what it would feel like to hate the world, or not want to get out of bed. Honestly, i really couldn't ever see myself being depressed, i truely don't believe that my soul is capable of feeling such a way, i don't feel it is supposed to be a part of the path my soul takes. Sorry to get all spiritual, i just have a deep, strong faith in knowing my life has a purpose and i hold so much compassion for people in general, that I know i will beat this and live a long fulfilled life. So enough of that.....

Any ways, thanks again for all the support and advice.
My current plan is to go ahead with treatment after i am done with some grad classes in March 2006. So i have a few months to reassure myself of my decision. I feel that what do i have to lose, if it works YEAPI, if it doesn't then i just keep living my life the way i am. It seems to be working pretty good, considering i have had HepC for 12 years now, and feel better than ever :)with no liver damage and a very low vl of @ 52,000. Actually my doctor was astounded when she got my biopsy results, she could not believe that after 12 years of having hep C i had NO liver damage at all and that my vl was as low as it is. I have gotten opinions from two other heptologist who both say that it is my decision to start tx, thought they both thought i would probably me really accepting of the meds, considering the other factors i have on my side (ie, female, under 35, low viral load)and looking at all my test results.

Well enough chit chat for now, will check out the recommended articles and other sites, anyone finds snook, send that boy my way LOL

Shannon
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Avatar universal
When I thought the curve's life was throwing at me were just too overwhelming, a very wise friend pointed out that the biggest curve wasn't my situation but rather my my reaction to it. Before I made the decision to treat my hep c, I got help treating my reaction to it. Both of you are doing just that by coming to this board and voicing your concerns and fears. Research, therapy, and support groups gave me the confidence to make decisions and focus on what I could do TODAY to accept and have a positive influence on my journey. In the beginning I used small daily goals-Get just one question answered. Make an appt for blood work. Buy more bananas. Offer one new piece of knowledge about tx or the disease to my family so they would be prepared for what might be in store.(What a breath of fresh air when I finally faced my fear and told my 13 year old that I had hep c, I would be going on tx, and might get emotional mood swings. He looked at me and laughed and said "You mean you'll be more like me Dad? No problem.")I can't believe I'm on week 9 of tx. I still use the small daily goals and can't believe all the things that no longer appear on the lists.
There are so many variables, this disease is so irrational. Some people who lived a more liver friendly life style then I did have not been as fortunate  with the degree of liver damage. Some people respond to treatment-others don't. Some people have no window of time to decide or prepare. Which or if you get side effects is a cr** shoot and I'm thankful I have the experience and advice of people who've been through this one or that one to listen to. Like  everything in my life I kept waiting for the stars and moons to line up before deciding about tx. Somebody suggested that whether or not the stars and moon were lined up might depend on where I was looking at them from.
The decision when or whether to treat is yours. The decision to do what you can to prepare mentally and emotionally is also yours. One day I just felt I was ready. It wasn't that I was actually ready for treatment. It was that I was ready to handle the decision and the journey and to make the best use of the help that is available.
Blessings on YOUR journey,
Don
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Avatar universal
Everything Jim said is true .. the more you LEARN the more you DO empower yourself and the less FEAR is there in time.

Save ALL of your paperwork so when you understand more...you can look at your numbers for yourself and see what's what.

Remember nobody cares more about your liver than YOU :)

Debby
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Avatar universal
Don't feel BAD about having a geno 1 - it's the MOST COMMON of them all and a LOT of people with 1 are beating it VERY successfully!   I am a Geno 1a & 1b and fighting this thing to the end!  I won't give up till these cooties are GONE for GOOD!  :)



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Avatar universal
"Scared", "Depressed", "Worried".  You sound like all of us facing this nasty disease. But as many here have said, the more you learn, the more you empower yourself, the less scary things become.

As a genotype 1, if you haven't had one already, you should ask your doctor about a liver biopsy, even if you plan to treat regardless of the result. A liver biopsy will give you imporant infomation about the condition of your liver which can be very helpful making treatment decisions. Not as accurate, but better than nothing would be blood a test called "Fibrosure" from LabCorp.

You've come to a great place for knowledge and opinions but none of us here are doctors and all carry our own opinions/biases often based on our own treatment experiences. So check other sites as well like Janis and Hepatitis Neighborhood. If you like research articles go to the Proects and Knowledge web site, and if money/insurance permits try and get the opinions of at least two hepatologists (liver experts) regarding treatment options.

Many of us, including myself, started treatment with less knowledge than we would have liked. If there's one thing I think we all agree on, is to take your time and get up to speeed as much as possible on Hepatitis C BEFORE you start to treat.

All the best and welcome,

-- Jim
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Avatar universal
I guess you're discovering that there are different opinions here on whether or not genotype 1's with little or no liver damage should treat. I still think one the most rounded discussion in print is the above link from Medscape I posted earlier in the thread. It may require registration (free) but well worth it.

To balance out the thoughts above regarding "it's not just a liver disease" and "extra hepatatic stuff" -- you should take some time here and on other discussion groups to read about some of the side effects people experience on treatment from the treatment drugs and how some of these side effects may remain after treatment. I think over at the Hepatitis Neighborhood site they recently had a thread about those who think they have experienced permanment side effects from treating.  

It has also been speculated that it's anemia that causes most of these side and that anemia can easily be prevented by a drug called Procrit. I haven't seen any scientific basis to this, but let's assume it's true to some degree. I've been taking Procrit for the past 36-weeks on treatment and I still have anemia. This is not uncommon. Procrit helps reduce anemia but it does not eliminate it in many cases. So that means less blood to the organs ,including the brain, for the duration of treatment.

Bottom line is the more you learn, research and study, the clearer the answers will be. None of us here are doctors so what we present here are out opinions/biases often somewhat based on our own treatment experiences. In my case, I've had the roughtest 36-weeks of my life on treatment-- but since I was told I had significant liver damage, my options were very limited.

Go to other web sites like Janis and Hepatitis Neighborhood and ask the same questions. Go to Projects in Knowledge web site and do some research. Speak not just one doctor but two or three hepatologists if your budget/insurance allows. Above all, don't let yourself be rushed into a decision, one way or another.

All the best.

-- Jim
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Avatar universal
I guess you can use the list of things to ask or do before tx, that I just posted, from some of the members who have treated.

Shannon; it seems as if you have a real thought out statement for getting rid of HCV now rather than later. I guess you must have also read this article:  
http://www.prnewswire.co.uk/cgi/news/release?id=143867.  
To both:
If you have good insurance now is also a big plus.  Both of you have to remember that chronic hep c(CHC) is not just a liver ailment. You will hear things like "it is a slow moving disease", yes, in most folks and in the liver, you don't know what else it is affecting besides the liver. there is a recent article on hep c in the brain and its effect in neurocognitive function. Here is another reading on extra hepatic stuff http://janis7hepc.com/Related%20Conditions.htm
in fact, if you have not done so, janis7hepc.com is a good place to visit for hep c information. also projectsinknowledge.com and the  hcvadvocate site.  
Jennifer: I am so glad you saw that add, it did for you what it was intended for, make you think about your hep c as if you were staring in the face. I hope it did the same for many others.
Read the articles mention above and at those sites, to empower yourselves with knowledge.  
good luck
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Avatar universal
Thanks so much....my apppointment with my doctor who I saw a little over a year ago is on Friday.  Knowing I have all of you to help me through this seems to take away some of the fear I am feeling.  Knowing I have support here is a wonderful feeling.  Thank you.  And Mike thanks for the questions to ask the doctor.  I had no idea what to ask.  Everyone enjoy your day and I hope everyone is feeling well.  

Jenn
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Avatar universal
Mike thanks for the information.  I read your post on genotype and 1 being hard to treat.  What does the letter mean like 1a or 1b?
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Avatar universal
Thank you both for all the information.  I do have lots of questions for my doc this afternoon.  I am looking for more information on having both A&C.  I have not found a lot yet.  My next step is to get the liver biopsy.  I have been sitting on this for sometime and other doctors Primary Care Physicians have never referred me to a liver specialist until now.  Insurance and health care is not worth a hill of beans anymore.  My first time knowing that I had HCV was in 1991.  In 2003 my current physician referred me to see a liver specialist who said my VL was too low for treatment. (not sure what it was then)   I wish I had known then what I know now about HCV.  Thanks for everything.

LvdByGOD I read some of your previous statements and I am also over weight and know that is going to be a factor in my treatment.  I have been going to the doctors more often because of felling very fatigue and tired all the time.  I can barley make it through a days work.  I have always been active and now I can barley go home and take a nap. I recently had a sleep apnea test which I go for the 2nd part next week.  I just can not imagine being more tired that I am now. What can I do to get some of my energy level back before I go on any treatments?  Thank you so much for your prayers and encouragement.
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Avatar universal
Vega777,  Yes I do have both Hepatitis A and C.
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Avatar universal
The following link presents the pro's and con's of treating versus not. See articles 2 and 3. You may have to register for Mescape but well worth it. Also keep in mind this was written a couple of years ago. Since then, as Mike suggests, newer drugs in trial have been generating a lot of excitement.

http://www.medscape.com/viewprogram/2053
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Avatar universal
Hang in there Jennifer. Do not allow yourself to fall apart. A lot of people here can help you through this thing so relax a little. We've been where you are and a whole bunch of us have gotten to the other side of this hep c thing. When you get ready to find a doctor ask here what you should make sure about before treating with the doc. Things like making sure you can get Procrit if your hemoglobin drops below 10 and neupogen if your white blood cells get too low or neutrophils get low. Some docs will supplement and some will reduce doses. Most of us here believe strongly in supplementing and not reducing doses and most of the literature would back us up on that issue. So get informed and stay strong and you'll be okay. Stay here and don't be afraid to ask about anything you're not sure of. Good luck. Mike
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