It's Back and other posts

Well my dear friends I hate to inform you but my Doc just called and told me he had a reading of 30 on a test going down to 10. I am not to down, I fought my best fight, full tx 18 months so I know I did my best and that is all we can do. There have been many SVR's here so the data and hope is good for us.

My doc wants me to go on maitenance and then just stay and check my liver. I will probably go this route for now. He wants me to start in about 3-4 wks and I am ok with that as I had 3-4 liver disease and it was closer to 4.

Scott looks like we will be doing this together and I have read that a few other people are headed this way.

There is hope so don't give up people.


GOD BLESS

Bob L

[Bob L]

Thank you very much chev. The biopsy was done before tx.

Thanks for your concern. We will get thru it somehow and I am not taking it to hard I knew my odds going in so I knew it could go either way..

GOD BLESS

B.L.

[TnHepGuy_]

Bob:

I'm so very sorry to hear that you haven't been able to stomp this monster completely flat yet. It sounds like you have a good doctor, though - where he will be staying on top of your situation. And making maintenance a priority gives you hope of continuing histological benefit.

You have a wonderful fighting, hopeful and helpful personality. With God's help to sustain you - you will continue down that path of hope.


May God's blessings and mercy be upon you and your family.


TnHepGuy

[cuteus]

oh rats!!
what wk was this PCR? you finished shortly afer me, I believe?

I wish you a big damage reversal on maintenance, almost as if no virus was ever there.
the best to you.

I know you, dollface and someone else were doing extended tx and were done around the same time as I was.  
have all in this group checked back in with results? I am not as good as chevy with details.

[annainitaly]

bob I am   > so sorry <  to hear about this. one more battle in store for you guys, we would have rather done without this bad surprise. at least, you will have some excellent fighters for your company, and this will be of great help. we are all at your side, bob.

anna

[Tallblonde]

Awwwww, Bob.  I'm so terribly sorry.  I hate reading news like yours.  It's just so unfair to fight so hard and then get the news that the dragon is still holding on.  And on top of it, you sound like you're trying to cheer the rest of us up!  You're quite a guy and you definitely deserve so much better than this.

I honestly do believe, with all my heart, that better treatment options will be available for all of us in the not-too-distant future.  We're all going to lick this thing eventually.  You included.  In the meantime, good buddy, drink your Rooibos tea and take good care of yourself.

You'll be in my prayers tonight.  Sending you a ((((BIG HUG)))).

Susan

[couchpotato]

I am really very sorry for your bad news. You have a great attitude, don't loose it.

Mattie

[rearfang]

I am new here and facing all kinds of unknowns. Your spirit and attitude help me to see that even if things don't go as we'd like them to, we can be gracious and courageous.
Lauren

[honey1616]

I'm sorry! One good thing is,,,,,I'm sure you did some reversal so tx never goes wasted.  My dr told me at one time,,,it always helps and may not bring us the exact result we want,,,SVR but good comes of it.  Okkkkk,,,,We are back to rooting now for you, Rev, and DonL,,,,I have noticed that people that are repeating are clearing and I'm wondering if its,,,,2nd round,,,,Your liver is in better shape,,,,

[BarnGoddess]

I also have heard the "it's back". hated it. I remind myself to  think that I gave it my best.
new doc, waiting, monitoring
still a 1a

[DonL]

I, too, am looking at a second round. I relapsed at the 3 month PCR. Still don't know which option to try. Have a dr's appt in two weeks and want a biopsy before I make a decision.

Don't gasp, Tallblonde, but I am planning to do your natural supplements while I am deciding. Don't think they'll kill the virus, but look like they'll help liver health. Do you take B with SAM e like some sites recommend?

Anyway Bob, I am sorry to hear about your relapse, and BarnGoddess, too. Never give up, hope or fighting.

[snook_man]

Here is a good link to check out during that waiting period.. Lots of good info.

http://www.hepcchallenge.org/choices/supplements.htm

[Tony-z]

Bob

I no your disappointment but more important is I so sorry that you did not obtain the SVR status. I will pray that the next round is easy and the desired effect are acolished....

         If I don;t obtain SVR status this time I to will most
likely go on maintenance tx. Has your Dr told you what maintains will involve? Dosage, Peg-Intron or Pegasys.

            My prayers are with you,


                     TonyZ

[Tallblonde]

GASP!!!  GASP!!!    GASP!!!

I take three capsules of NSI Healthy Liver Version 2 each day from Vitacost and it contains lots of B-vitamins and Milk Thistle.  You can find a detailed list of its ingredients on the Vitacost website.  They also have a decent price on the SAM-e.  I take 400 mg. every morning before breakfast (it must be taken at least 30 minutes before eating).

I know I must sound like a complete nutcase, but my gut instinct tells me that its the white tea that's doing something to my viral load (DISCLAIMER:  I am not a doctor.  This is only a gut feeling coming from a layperson, so take it for what it's worth).  

Nevertheless, please read the studies done on white tea by Pace University researcher Milton Schiffenbauer.  He's been studying tea for years and has found that white tea has anti-viral properties that even kill the herpes virus in vitro.  Case Western Reserve University has found similiar results. All I can tell you is that my viral load began nose-diving after I started drinking 3-4 cups of white tea a day (SEE ABOVE DISCLAIMER AGAIN).  The Rooibos tea doesn't have any anti-viral properties, but one study found that it protected rats from cirrhosis.  Good enough for me. I drink at least two cups a day.

Beyond that, I just take a multi-vitimin (Centrum Silver) and some extra Vitamin C (1000 mg) and Vitamin E (800 IU).  I'm not one of these folks who's into a lot of exotic Chinese and Japanese herbs  (way too complicated for me -- I'm pretty much a simpleton). Nor am I one to severely restrict my diet by eating only organic and macrobiotic foods (whatever the heck that is!). I simply eat wisely (most of the time) and make sure I eat yogurt, oat bran, and fresh fruit/veggies daily.

I would love to have someone else on this board start charting their VL and LFT's 3-6 months after doing this same regimen.  I'm not saying it's going to cure me or anyone else, but I do know that my numbers are amazingly better as a result. I'd love to see the same thing happen to everyone here.  Truly.

Best wishes to you Don.

Susan

[Tallblonde]

I meant to say 6 capsules daily, not 3.

[cao]

I'm so sorry.  I know it must be so frustrating to think that the stupid virus is hanging around at such ridiculously low levels.  I think your positive attitude is a wonderful thing!

[new-sojourn]

I take 800-1200mg of both milk thistle and SAMe.  I also go by Dr Andrew Weil's recommendtions for other supplaments.

I also take a costco 'vitamin sullement' packets.  Has all the goodies in one easy affordable bundle.  90 days for $20.

As to diet:  Badly damaged livers do best on a low salt, low protein diet.  Since dairy converts immedately to ammonia, dairy should be used sparingly.  Juicing and steaming are the best ways to prepare veggies.

As to teas, I do a mornig black, green during the day and a roobis-red tea after 6pm.  i prefer Numi to Celestial Seasonings for my black and red teas since they aren't all gucked up w/sweet stuff or spices.

The purer your food the less work your liver has to do.  Avoiding insult to injury.  It ain't rocket science, just good ol' common sence.

[Petey7]

Always sorry to hear that news. I am in almost exact same spot as you but I only did 48 weeks. I started maintainance last week. Hang tough and stay the course.

[hepcgetlost]

I'm just checking back in to this board after staying away for the past few months and was so sorry to hear your news. Your attitude is so inspiring. The reason I've been away is that I haven't wanted to inflict my sadness and rage on everyone and simply couldn't muster up the energy or inclination to reach out to all the wonderful supportive people I have met here in the past year. I'm also on extended tx...currently week 56 of 72. I join everyone else who has posted before me to wish you nothing but the best and I agree that your liver will love you for going on maintenance and that at some point, the virus will have to retreat. Because of your gracious and positive attitude, I believe you will be successful in fighting and ultimately beating the evil dragon.

Just want everyone to know that I think of so many of you so often, and am wishing good health for all. The last few months have been very tough emotionally, so it's been hard to read about or talk about HCV.I'll end here because if I keep going, I'll probably start whining, and I don't want to hog this thread with my issues. From Judi

[desert woman]

I'm sorry to hear it's back.  But as someone else mentioned, the treatment you have undergone so far has done some good.  From all I've read, there are advances being made in treatment for hepC, and hopefully some day it will be a thing of the past.

[fsplink]

I hate hearing the bad news. But, I honestly believe all of you that are being put on  maintenance meds will one day have a new drug that will just knock that old dragon in the dirt! I mean he can't keep hanging on forever! Just think of it as getting and keeping your liver healthy till that miracle drug gets on the market.
Will be thinking about you and hoping for the best!

[cuteus]

judi:
I can only imagine some of what you are going through. you got some stuff that I did not, and for longer. I don't know what it feels like. Nobody but you knows. I dol know that after wk 48 it seems like an impossible task to reach the end, if you think in terms of the full amount of time. So, count from day to day or you will be more overwhelmed. We gave it a good fight at 72 wks of mostly full doses. I know the old tx involved more than two years in some cases. I tip my hat to those that had to endure that tx.  I should email you more often...I am a terrible procrastinator...why can't we be blessed with telekenesis?  I am always thinking of you...be well


On vitamin B; I used to take the b complex-50 from Puritan's Pride for many yrs, until I was dx with hep c and read warnings on Niacin.  I did not want to chance any damage.
Does anyone know any complex without it, or any info as to whether we should really panic about Niacin?
I know that in whole grain foods it is present in much lesser amounts than in the supplements and that acidophillus and lactobacilli in our intestines will supply us with a share of these vits, so shouldn't we rely on these to avoid any potential damage by the pill?

[njrsl]

BobL man Im sorry. Mine did the same it is back. They biopsyd me and It sitll looks good just little damage so will wait for now


tall blond {and oehters} coming to this pace a month ago or maybe more people making fun of nad didn

[mikesimon]

I'm so sorry to hear of your relapse. Good luck with the maintenance and your liver histology. You've got a great attitude and that will see you through this tough time. Mike

[Tallblonde]

I am definitely NOT the leader here.  It's important for those of us who are not treating to try to empathize with those who are.  Many of them aren't as fortunate as us to have little or no liver damage.  For them, treatment isn't a choice.  They have to treat now or face potentially life-threatening damage.  

It is inaccurate to suggest that I have have somehow found the "true" way.  I have simply chosen a path that seems reasonable for my specific circumstances.  On the other hand, if my liver was significantly damaged, I'd be jumping on-board the treatment wagon without hesistation.  

We need to be very carful not to suggest that those who are treating are somehow misguided and wasting their time, and those who aren't treating are somehow more "enlightened."  The way I look at it, it's a bit of a crapshoot either way and we could possibly be the ones regretting our choice at some point down the road.  We're all fighting a formidable enemy and it's wise not to think we've somehow outsmarted him.  

Take care,
Susan

[carolhab]

Okay - my 2 cents (or less) on tx.... I have had Hep C probably for 20+ years (baby boomer) , officially diagnosed 7 years ago with a wait and see diagnosis, type 1A, mild fibrosis, slow progression.  I went to Misha Cohen (Acupuncture) for 2 years, and she was fantastic, I felt much better, but I got laid off and lost my health insurance.. so couldn't continue... has anyone tried to buy health insurance with Hep C? well, need I say more about that!!...
So, with very mild symptoms (mostly fatigue), but always concerned, a trial study came up I was eligible for... after much much angst and waffling back and forth, I decided to jump in..  I guess all I am saying is that there are so many factors in each our lives, that doing or not this is an extremely personal decision, so many factors come into play. Doing or not tx, I think, are equally exquisitely delicate respected decisions...
I admire all of you on tx, AND those who aren't..  If it wasn't for this trial, I couldn't be getting tx..  
sammy

[njrsl]

chevygall1955,
girl you one of those chicks walking up wtih soft words and smile and a poor dude don

[ificu1st]

It is so reassuring to read all the postings on this website.  I can't believe I didn't find it sooner.  Although I have a supportive family I feel like I am going through this alone.  Your stories all hit home.  I am going to start retreatment soon with the consensus interferon.  I am nervous and anxious as hell.  After the initial treatment my viral load was <650 and I guess I just assumed I was out of the woods.  I felt great and went back to work after spending a year in bed and 2 years out of work.  Also started back to school full time.  Now my labs are back to where they were before treatment and I feel my life falling apart again.  
;My viral load is >700,000 but my alt and ast or normal.  they were both in the 400's.  I know I will make it through this round no matter what now that I found this website to vent on, and alot of new friends.  I am not one to sit on the pity pot for too long so I know I will find the desire and the strength to slay this dragon.  I like adventure but this is one I could have skipped.  
Thanks to everyone for their postings, it is really helping some of us who have been feeling so alone.
My name is TY

[cuteus]

this is the best forum I have found. As anything in life it has its ups and downs, but it is an easy site to navigate and the support received is worth weathering the "downs" that inevitably come at times.  Hang in there, with the help of all here that are willing to share, you will be ok.
Are you a G1? how long did you treat? This illness and treatement is such a puzzle sometimes. what did your biopsy(bx) show? what are the meds you originally tried...these are all things that might assist those considering tx and those going through it.
Please share as much as you can, and welcome.

[Tallblonde]

As the leader of this board, I want to welcome you.  Ha-ha...just kidding...I'm not the leader (Scott is).  But seriously, welcome to our neck of the woods.  I'm sorry we're meeting under these particular circumstances.  There are many people here facing the same challenge who can offer you valuable information, insight and support as you begin re-treating.  

Best wishes to you!
Susan

[scruffy]

Just keep pluggin Bob and we'll keep pluggin with you.Blessings.

Tallblonde/ with friends like us...Ha Ha Ha-you're ok lady.

Njrsl/ as regards mschevrolet, she's being gentle with you-duck and cover. Her advice is sound(usually-grin).

Revenire/ Lead me PLEASE!!! I'm most definitely lost.

Anyone/I've honestly learned from every person I've encountered here.It's amazing the support you get from such a diverse group of somewhat crazy-sweet people-Oh ****-feel like crying AGAIN! AHEM,as I was saying-I like you people a lot.
so there.
And I am a tough guy. Frank

[scruffy]

You know you can come here and inflict pain and rage-I did and they forgave me-This is really your second home and we all share your pain even though we can't take it from you.It's a long road but your journey will end in a beautiful place I have no doubt.Come here whenever you can.Just seeing familiar names means a lot. Frank

[raheem]

Bob L sorry about your relapse.  Like you said, you did the tx (actually more than the regular tx time frame) and that's all you could have done at that point.  Keep abreast of new tx options and stay healthy.
Scott, I've only been lurking a little bit since I finished tx back in March of 2004, did I miss some news that you have relaped also?

[honey1616]

Frank,,,This is a very diversified board huh? LOL  You are right though,,,,Some awesome people that are always ready to help!

Judi,,,You need to come here when you are having rough times,,,It helps so much to talk to others going through same or has been there!  I hope you get to feeling better soon!!  You are a tough lady to go through all the weeks you have..

TY,,,Sorry,,you didn't get the virus the first round! Glad you found medhelp as this will help you on 2nd round with everyone going through same fears,,etc.  Welcome aboard!

[cc2]

Chevy - you posted that there are new studies and something about the 6 month check.  Is this not reliable anymone?  I thought this was the most important test and then the year check.
Thanks

[Tony-z]

Chev,

Very well put. Like you I am waiting for that 6 months test. I am still treating my liver as if it was still full of Hep-C....I think many of the life style chages I have made are permanet now....


honey15637

What is the date that we are going to meet and fill each other in......?
I think thats a great Idea.

hepcgetlost.

<B>Welcome BACK........................</B>


                       God Bless

                               TonyZ

[honey1616]

Yep,,,,a crapshoot it is,,,either way.  You just try to make the best decision for your own health and then jump in and give it your best.  It will be very interesting for us all to still report in a few years,,,,where we are at in our lives,,,,health wise...

[honey1616]

LOL Well,,,if we ever get to the point that we leave the board,,,,I would think a check in of about 2 to 3 years would be great to see how all is doing.  Hope you are feeling better and better each day!

[doll face]

Bob, I am so sorry to hear about your tests results. How far post tx where these tests done.

Cuteus and others- I just got back from doing my 2 month PCR. The reason we moved it to 2 months instead of 3 is because last time I had relapsed so soon after finishing and because it is driving me nuts not knowing.

I had very minimal damage to my liver and am curious as to what everyone who has relapsed will be doing next. What type of maintance has your doctors suggested?

[Califia]

FYI:  Doc Misha Cohen's community clinic on Valencia St. (Quan Yin) provides services on a sliding scale and turns no one away for lack of funds.   It primarily serves the HIV, HCV and CFIDS communities.

[ral]

I did my titer 4 wks post tx. I am going to talk to Dr Cecil I still feel I need to fight this thing and have a whole lot of fight in me. I don't know whether my family does though, it has been tough on them but it will be tougher if I don't beat it.

GOD BLESS

Bob L

[BarnGoddess]

I have liver panel done every 6 months and will have biopsy in 2006.
I see my GI and my Internal Medicine doc's every 6 months.
Unless I start showing obvious signs of something funky going on  the plan is to monitor and wait.
I had very minimal inflamation (inflammation), no fibrosis or cirrosis (cirrhosis) reported with the biopsy I had in Dec of 2002.

[raheem]

Gee, so sorry about your relapse.  I would have thought your extended tx of 72 weeks or 80 weeks (it was off the charts) would kill anything in your system.  Actually, I was getting concerned that you would be damaging some healthy parts of your anatomy.  Well if anyone can do the maintenence program, my money is on you.  You seemed to have almost developed a "sweet tooth" for your interferon!  I really hope you can realize benefits from some type of tx.  You already invested a lot of time and energy into getting better.  You deserve a good result. Take care.

[cc2]

Thanks for the post.
I understand what you mean - when awaiting my first year check I was nervous, to say the least.  There is always that small percent that do not stay clear from 6 mo to year.  I am now over 2 years clear and I do not believe it will come back and I will not check again until the 5th year.  I do have a glass of wine or a beer now and then, but I know the damage done to my liver from my bx and I will always keep that in my mind to watch what I do.
More and more doctors are using the cure word, though, especially after the year.
I pray that your test comes back neg. and it will, (and all waiting for their six or year test)and for all the could not clear my prayers are for a break through on this crappy monster.