HELP Recently diagnosed...high viral count

[eyehavegr8life]

3 weeks ago I had some blood work done and found out I am positive with Hep C.  I just got the results today on my viral load and its 2,250,000 (copies?) I understand this is high. I'm also Genotype 1 (no a or b?)and already on medication for depression.  My Dr feels I wouldn't respond to treatment well, being Genotype 1. I've decided I will have a biopsy done to see what kind of damage might be going on in the liver.  
My question is:  I need hope and something I can be doing to help myself. I'm at the point of trying Homiopathic (spelling?)products.  I've been reading as much as I can about Hep C and I'm having the hardest time understanding what all the numbers mean! I hope my insurance has a good liver specialist. If anyone can try to help me understand the meaning of the numbers and what I want to be looking for in them, I'd appreciate it.  Also, my local health food store owner suggested these products to help the Liver. Has anyone used these or heard about them? Milk Thistle, Articoke capsules, Lysine 1000mg 3x a day, Grapefruit Seed Extract 6 drops in 8oz water 3x a day, vitamin c 1000mg 3x a day and MSM 2000mg 2x a day. Thank You, Please respond

[jonihs]

FIND A NEW DOCTOR. WELL OVER 1/2 OF THE PEOPLE ON THIS FORUM ARE GENOTYPE 1. GET A BIOPSY TO SEE HOW MUCH DAMAGE HAS BEEN DOINE, THEN MAKE YOUR OWN DECISION. THE SVR RATE FOR 1'S IS OVER 50%.
GOOD LUCK      JONI

[eyehavegr8life]

Thanks for responding to my question.  I agree, when my Family Dr. said that to me, (I wouldn't respond to tx) it didn't feel right! He's known me all my life and I'm 52.  I hope the liver specialist he sends me to has a lot more to offer that NO HOPE! By the way, do you know anything about the alternative medications I mentioned? Thanks again

[DonL]

I agree with joni. Prior to starting Pegasus/Ribovarin, I tried some voodoo with placental calf pancreas extracts and other nasty stuff. My practitioner was convinced he was curing the C. I totally felt like it was bs and my biopsies (1989 and 2003)confirmed my opinion. Second one showed some progression and scarring, enough to warrant dealing with the disease. Plus, the success rate had gone from 20% to 50% so it seemed worth the shot.

I assume that the herbal stuff can help your body, but I do not believe it will kill viruses. Each to his own, of course, but I would find a second medical opinion. I am 1a, in week 11/48, initial vl 141,000 (low, I admit) and holding up reasonably well, all things considered.

Good luck. There are a number of people on this board with geno 1 who started off higher than 2.25 mil vl and are SVR so take heart.

[MichaelT]

The goal of treatment is to put the brakes on the disease before it progresses to cirrhosis and if a person has cirrhosis to keep the original equipment, so to speak.

Ideally, treatment will eliminate the virus. Second best outcome is a person is a biological responder - your liver gets to normalize and start repairing damage despite not eliminating the virus.

Your doctor is being pessimistic. Hopefully your specialist is more upbeat.

Don't consume alcohol, smoke, or do cocaine. Homeopathic treatments suck in folks everyday - all I can say is do your research and don't put anything in your body that can hurt your liver.

Some docs believe that having depression or other mental disease is bad news going into treatment. This position has really been refuted.

God bless.  -Michael

[Ambush]

Sorry to hear of your diagnosis.  Have you seen a specialist yet?  A regular GP doesn't have the specialized knowledge you need right now.  If it was a GI who discouraged you, try another one (preferrably one with alot of HCV experience).  I'm a 1A on week 31 of 48 and so far, so good.  I agree - get the biopsy so you know where you stand and then find a liver disease specialist who can tell you what your options are.
Here is a site to help explain the bloodwork and test results:

http://www.janis7hepc.com/labs.htm

Good Luck ~ there is alot of good information in the past posts here, so read up and ask questions.
ambush :)

[eyehavegr8life]

Thank You, I'm feeling like there is HOPE, and I am a firm believer in being your own advocate...no one else can do it for you! This news of my Hep C was scary enough and then to hear the viral load numbers of 2 million plus was kinda overwhelming, not to speak of my own Dr. pretty much telling me there wasn't anything I could do about it....SUCKED!! If anyone could school me on what the numbers mean and what I wanna look for I'd appreciate it alot! I'm gonna get the lab results too, I see this can be valuable info.  Thanks again, the new and improved Genotype 1 with a goal...To live and endure!

[eyehavegr8life]

Once again, thank you for your info and insight. I will wait to see the Liver Specialist and feel him/her out. I will have the biopsy for sure...I need to know, so I can take the right steps to being here for my planned out LONG LIFE!  :0)
Thanks for your SUPPORT

[cindee]

Well, I can't believe a dr. that has known you all your life (or any dr.) would tell someone they don't think treatment would help. My viral load was wayyyyyyyyyyyy up there!!! I did riba/pegasys for 48 wks. Finished on Nov 6th. I was geno type 1a the hardest to treat. I was SVR thru out treatment. As for the herbs and alternative meds. I agree they don't kill the virus. This is a tough disease we are all fighting. Go ahead and start drinking lots of water and get on treatment ASAP!!! the sooner you do, the faster you can kill the nasty ole' DRAGON. BTW stay away from alcohol COMPLETELY!!!!!!!!! And stay w/ this forum...this Hep C family is the greatest. We will celebrate w/ you and we will cry w/ you. Prayers to you and all, Cindee

[eyehavegr8life]

This is a site I really needed. It's got all the explanations I will probably need to know! I really appreciate this!  I'm a control freak, well not really but, I do like to know whats going on when it pertains to my life ya know? And I was feeling pretty out of control with my own life not understanding what numbers and tests mean. Thanks again, Annette

[eyehavegr8life]

Thanks for your support and info.  I will definately stay in touch on this board.  You guys are the "Greatest". I'm going to bed now, gotta get up for work real early.  
See ya real soon. Annette

[Sioux]

Im a 1a v/l pre treatment was 10million..... I was not detectable at 12 weeks........ I am now on week 39 of 48. If you have any questions please ask.

[oldhippiechick67]

welcome to our happy lil forum.  I dont believe in the holistic herbal approach either. There is no proven case that herbs can irradicate the virus...maybe lowered it some but never cured.
Also some herbs can be toxic to the liver.  the janis7hepc.com site is a goodie for all kindsa info and so is this one:

http://www.geocities.com/1leighann/index.html

and I have one about the folks here and how they are doing on tx (treatment)  its:

www.geocities.com/auggieaz/index.html

Also you can go to the  Pegasys.com  website it is a drug that is commonly used and has some basic info there.

Good luck and hang in there, your ol family doctor probably isnt up on the success rates, and treatment can cause depression or make an existing condition worse, that's maybe part of why he didnt think you would do well, but a positive attitude is REAL helpful with success as you probly already know!
OHC

[jonihs]

When you get your lab results, post your ALT, AST,VL,stage and grade of your liver, and everyone will explain what they mean. Also when you get your reports each time, post them. We can let you know your progreess etc. Also, it was postedbefore, go to Janis7hepatitisc.com with your labs, that will help alot.    Good Luck all.    Joni

P.S. Others might tell you other labs that I missed, later.

[new-sojourn]

Many herbs and supplements are helpful in acheiving and maintaining liver health.  the ones you mentioned are often used, dosage amongst users varies widely.

B/only an anti-viral regime seems to offer the most hope.  The stonger the immune system, the better able the body is able to fight the infection w/the addition of anti-virals.  Everything has its place in supporting a successful cure.

The hep c virus can cause depression b/c your body is in a constantly stressed state.  My depression of years stading is just gone. I read that any one in therapy for 6+yrs should be checked for hep c.  I was in 7+yrs.  Go figure.  It wasn't my mind, it was my blood.

The wisest course is to cut out all harmful habits-alcohol and cocaine are like jet fuel to the virus.  Eat as healthly as possible, increase fluids, watch otc's and any Rx's that many be liver unfriendly.  And get enough rest.

Then get a good doc.  If I hadn't found one who would treat me, I would be dead.  I went into liver failure before I was dx!  I was transfused 24yrs ago, b/cl'ed and now SVR 15mos.

I had to travel from one side of my state to the other, over a mt pass, to a big city to find life saving treatment.  Good luck

[Indiana]

Sorry you have found us this way but under the circumstances it's gonna be a good thing for you and all of us. We all bring something to the table when we get up to speed and talk about this stuff. You'll like it here.
I WAS a type 1b. I cleared after 50 weeks of Peg/Intron. I did my tx shortly after the Peg was first approved. It was REALLY scarey cuz few knew what to expect or what to do about it. Realistically your odds of clearing are 40-50%. That depends on a LOT of things. Even so that is better than the 10% odds I was faced with early on. This science is improving rapidly.
Learning about this is really key to getting through this with your sanity intact. Here are some sites to get you started....

Get the basics on the FAQ's of these general HCV sites:
http://www.liverfoundation.org/ (American Liver Foundation)
http://www.natap.org
http://www.hepnet.com/hepc.html
http://www.cdc.gov/ncidod/diseases/hepatitis/c/fact.htm
http://www.carbonbased.com/cbcblood.htm
http://www.niddk.nih.gov/health/digest/pubs/chrnhepc/chrnhepc.htm
http://www.battlinghepc.com./
http://www.hepcassoc.org/links.html (many links)

http://www.themedicineprogram.com/info.html (helps pay for meds if you can’t; may be restricted to USA)
http://www.hepatitismag.com (bimonthly magazine)
http://WWW.clinicaltrials.gov (about ongoing clinical trials/US)
http://janis7hepc.com/index.htm (a wonderful memorial to a woman who lost the fight; great general and specific information)
http://hepatitis-central.com/hcv/labs/toc.html (explains labs)
http://www.hepatitis-central.com/hcv/liver/scoring.html
(Liver Damage grading chart)
http://hepatitis-c.de/viraload.htm (Viral load info)
http://www.jacksonwalter.com/hcv/comboguide.htm (The Combo Survival Guide from A-Z. Very funny and informative, written by 3 women who did the pre-Peg therapy. Re: side effects)

This should keep you busy and give you a good start. We are always here to answer questions.
And keep a sharp eye out for BADGERS! Those danged critters are everywhere!

[new-sojourn]

I just want to make it clear that I meant herbs, etc HELP b/ DO NOT CURE hep c.  Herbal treatments and natural supplements can help greatly w/sx's during tx, pre and post.

Most of us are nutritonally deficant due to the hep c and its sx's before we start tx, so any nutritonal shortfalls you can repair while eliminating harmful toxins will be helpful and benefical right off the bat.

I read some of the posts here about people whoes livers are failing and are not treating, often b/c some doc thought they were too unstable or too liver damaged and my heart breaks.

I was depressed, 54, un-insured, broke,in icu 6 days for liver failure and coma.  Given 1st hrs, then days, then weeks, then months to live.  Now, 2+yrs later, disease free, I don't listen to 'them' anymore.

That's like 6 stikes against me, b/I cobbled together a treatment plan and managed to cl and acheive SVR-CURE-28mo after dx.  And I'm still here, against all odds.

[Galen]

Call me a stickler, but having an undetectable viral load at 12 weeks into to or at any time durin tx.  I think we are doing new folks a disservice by using that term so loosely.  SVR is supposed to refer to an undetectable viral load 6 months post tx.  
From http://www.hcvadvocate.org/news/reports/AASLD_2003-3.html

"Sustained virological response (SVR) was defined as HCV RNA negativity by PCR (<50 IU/mL COBAS AMPLICOR® HCV Test v. 2.0) at the end of 24 weeks of untreated follow-up."

[hph5477]

I'm 46, female, type 1B, VL 596,000; wk 10/48.  I decided to do tx because I felt I had nothing to lose and everything to gain.  There is usually a PCR test at 12 wks to see if the meds are working properly to irradicate the virus.  If so, you continue for another 12 wks, test again, and continue for another 24 wks if undetectable at that time.  If the meds are not working at 12 wks, you'll probably stop tx.  But there will be newer tx's out in another few years we can try if that's the case.   Type 1's start with a 50% chance of clearing the virus; at 12 wks, that goes to 60% and then 70% at 24 wks if meds are working according to plan.  Test again 6 mo post tx....if still undetectable, you've more or less irradicated the dragon.  I believe there may be a 3% chance or relapse in the next 5 yrs (or something like that).
Find a good GI or Hepatologist that specializes in Hep C; get informed and then make your decision if you want to tx right now or wait.
Good luck with your decision.

[layla]

Sorry to meet you this way but welcome to this forum. I may be off base here but by reading your initial post I think maybe your doc is basing non treatment on your history of depression.  In cases of severe depression I don't believe tx is recommended because the drugs themselves can cause very sever depression for some. You may want to ask him if this is the reason. Just by reading  your post my guess is that's his reason, of coarse there may be many other reasons he knows we don't. I would ask him for more details on this reasoning. LL

[eyehavegr8life]

WOW...How cool was this to wake up, come to this site, and see all the posts from caring people.  I'm so grateful to have you ALL! I will be going to the Dr office today after work to get "MY" results and look at the numbers! I will be able to understand them now using the sites you all gave me! This is a blessing for sure. As I mentioned in the other posts, I felt like I had NO HOPE, now I see I do! I turned my life around about 13 years ago. I do the best I can to take care of myself now. I don't drink,(never did that) but did alot of other things. I've limited myself to One cup of coffee in the a.m. and the only thing that I take is my prescription depression medication, as directed! Once in a while, some asprins, but not often! I am however seriously thinking about using MILK THISTLE to do some repair work on the liver, or whatever it's supposed to help with?
Any suggestion on this?
You all have a great day...see ya later, Annette

[eyehavegr8life]

When I get to the point of taking (getting)the tx to kill the little bugs, will I be able to work?  I see some of the side effects can be a bit harsh! Any answers for me?  Annette

[slarso]

Well as you can see you have found a great place, no..the best place. Plenty of excellent info and I can't add to it except that I also agree, the homppathic stuff us great for the little stuff, Hep C is the major league, hardball, big time. You need the big guns to get it. The world medical organizations have spent millions of $$$ and some big brains and the biggest gun right now is peg interfurion and ribavarin. Go to the pro's on this one and welcome to the family

[GI.PA]

I have no data that herbals help, period.  Milk thisle is currently being studied in trials but I have no data to help you make the decision.  Vitamin E may have some protection against fibrosis.

The best thing you can do instead of wasting money on unproven therapies is to:
1.  Avoid alcohol completely
2.  Avoid iron supplementation
3.  Avoid uncooked seafood (a wierd virus that attacks the liver can be in this)
4.  Get Hep A and B vaccines
5.  Eat a well-balanced diet, 30 minutes of exercise most days.

GI.PA

[Revenire]

I worked pretty much straight through 50 weeks of peginterferon and 1000mg of ribavarin. I missed maybe 12 full days and some odd hours here and there, and had them covered by FMLA. It wasn't easy dragging myself to work but it felt good doing it. Some days just accomplishing getting to work made me feel better and I was able to carry on.

Like many have said: Get a different doctor/see a specialist. I am a 1a and I cleared the virus before week 12. My family doctor, who doesn't treat many HCV patients, suggested I could re-biopsy in a year and see if the damage was worse. I didn't think waiting was a good idea -- the virus isn't waiting. No one can tell you how fast the virus will move either. A biopsy is a must -- that will tell you where you stand.

[layla]

I have worked full time and I am on week 43 of tx. My job is often physical and I travel often. Some days are rough but it's been ok. Personally it would be much worse for me to sit around on tx. It keeps my mind off it when I am busy and don't have time to think about all this. It's very different for everyone. If you read some recent back post you'll find more info on this with post from people who did and who didn't work and their experiences. Reading the back post can be very informative. LL

[eyehavegr8life]

I picked up my lab work today after work. In comparing my info to the janis...site, I think I'm in OK shape?
Here's the numbers>ast 22, alt 29,
I have a few things that are in the high range they are> alkaline phosphatase 132, bun/creatinine ratio 36,
urea nitrogen (bun) 29
In the urinalysis culture> protien had trace and granular cast is 0-1 listed in the high range. I also DON'T have any readings leading towards cancer or tumors Yippe for this! Any insight to these numbers would be great!  Happy Holidays to you, Annette

[jonihs]

I jus want to add (it's been said before), starting today, Drink,drink drink all the water, gatoade or other power drinks you can stand, the drink more!     Joni

[eyehavegr8life]

I also have a question about my Genotype now. It says Genotype 1 no a or b after it. However, in a paragraph below this it says>
INNO-LIPA (TM) cannot discriminate between subtype 2a and 2c or between 4c and 4d. Does this mean I could be 2's and 4s' along with the Genotype 1?  Any help appreciated.

[Revenire]

Your LFT numbers are GREAT.

[Dougie C]

I am male early 50s  geno1 since 1980 blood transfusion.  Years ago I cleared the virus on two seperate trys of 1yr Intron Riba (pre peg days) I was totally immersed in list group support and to make a long story short it consumed my life and kept me down.  Nowadays I am DOWN even without living and breathing HCV group speak.  My health has dwindled to pathetic.  I can not do this anymore.  I was so sure I couldnt ever bear to go on intron/riba again knowing that I was very likely to relapse but now I am so sick I am thinking it couldnt be much worse if any.  I just can't keep working ...I can't!  I need so desperately to be allowed OUT of it!  I have some kind of nueopathy thing i both feet/lower legs.  My feet are numbish and painfull like needles and knives.  I feel like **** more often than not and my brain is mush.  I survive on pain meds and have for years.  To function I take provigil every day.  My doc has me trying cymbalta (sp?) for it's potential in treating the nueropathy pain  and then to avoid so many ibprofen she has me also trying mobic.  She says my viral count is in the millions and she asks me every visit to please see a hepatologist.  She will put me out of work tomorrow but I have exhausted all sick time and vacation.  So I need to find a new hepatologist since the one I had years ago between my **** health insurance and his **** billing department I failed to ever pay off and so I doubt I am welcome there anymore.  So my next step probably is going to be A. find a good hepatoligist in Orange County California, B. get an updated biopsy and aprasial of my liver health  C. get started on this new and so much more wonderful (is it really?) Peg/riba and D. GET OUT ON DISABILITY  E. find a new support group and settle in for the ride.  All comments welcome.

[Jakied]

Don't waste your time or money on herbal medicine.  They will probably do more harm than good.

[tobywankenobi]

Let me first say I too am sorry that you have found you have HCV, it is a shock to the system! Like others have said already watch you bloodwork because you will find that these are your markers as to the damage that is being done, the most important is you albumin and billirubin. These are your markers for cirrohsis!! I am about to start tx, although I have geno 2!!! I am not having a biopsy or Ct scan because the benifits outway the sideeffects and if I dont achieve a SVR then my doctor says we will keep trying. My last viral load count was 8,500,000Un/ml and my ALT was 113 and AST was 46!!!! However my albumin was 4.0 and my billirubin levels were 0.9 total and 0.1 direct.... I guess what I am trying to say is that unless you are 90years old I would seriously consider treatment and find a doctor who agrees....... although the liver is an excellent healer of itsself you should persue ,by whatever means necessary, a way to fight this virus because it can become a monster. I wish you the best, and my thoughts are with you!! YOU are the master of your own destiny, good luck and may the dragon within you sleep!!

[jabjab]

Hi, I have Hep C genotype 1 non responder to interferon stage 4 cirrohsis.
Life is not over, depression is just a state of mind and it really isn't going to help you at all,
You need to look deep within yourself and gather your strength and learn
Go on the internet and just start reading educating yourself if the key because you are your own best advocate. You and only you know just how you feel. I have been living with this for quite a long time now. When I first found out I did not have health insurance. I have always worked in the medical fied and am a single mother of 5 children and at he time I found out I just bought my first home and had moved my mother who had end stage alzheimers in with me becuase it was to dangerous for her to be alone. I always worked as a per diem employee in the medical field becuase you made alot more money. So I worked two per diem jobs. I did pay out of pocked when diagnosed for a liver biopsy. My neice is a physician assistant in a gastroenterologist office so she did my biopsy only 1 slice just to check for damge in 2000. They only found minimal fibrosis, so they thought, so I didn't have any other test run and decided not to treat under advice of physician who said treatment would make me sicker that I felt. So I went on. In 2002 she moved to Texas and I changed Drs.  My New dr. recomended treatment got a company to supply me witrh alpha interferon 1a and ribavirin. Well six months treatment failed,. Now i was still working and still paying out of pocket. So they Pegylated interferon came out and he suggested i try that so I did well I started having all this crazy things happening to me can't sleep, don't eat,. sweating, tremors, palpatations, til one day I had what they called a thyroid storm the interferon destroyed my thyroid and I developed a goiter on my thyroid gland, whithin 1 year I was disabled. Here the first biopsy did not show the true deterioration of my live I already hade cirrohnis . They took a very superficial slice on first biopsy. I then had another biopsy and I am in ESLD. But I still am here. Still doing things. Sure life is not easy but nobody said it would be. Educating yourself is your best defense mounting a good offense is always the best defense. Ask your Dr. to send you off to get score on the meld score which is the list for transplant. I was scored at a 6 in 2003 very low, but I'm there they have seen my face I did all tahe premliminary testing . So when the time comes a little less stress due to planning.  Never give up hope you can live a long life. you can live 20 years after being diagnosed. B ut get all your test and do not skimp on any test it is important to know. Amonia levels, alfafetaprotein, liver funcution, kikdney function, clotting factor times. lGood luck and keep your head high,