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Avatar universal

Hello and welcome other posts

I just wanted to say hello to everyone. I never find time to get online these days. It was so good to see Genedog, scruffy, DD, TNHep, and others I haven't seen around lately. So glad you are all still coming by. Congrats to those who have learned of SVR and non-detectable status, best of luck to those starting out. (My stats 45 yo F, Geno 1b, starting vl 650,000, week 29 of 48 and feeling quite well, undetectable week 24.) Please use this space for questions.
Lauren
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Avatar universal
I read what you sent me and at the bottom its says estrogen can casuse a low count, well im on prempro which is a hormone suppliment for women going throu menopause.
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Avatar universal
All ny scans (CT and ultrasound ) were perfectly normal. I did have some lower platelets (still in range) and no other cirrhosis symptoms but lots of HCV sx.

I saw the lil pain from the dang liver biopsy is well worth the info it provides. I am a stage 4 grade 3 had it for 16 years, am female and am 33.

Just think, without this, I would've treated only 24 weeks instead of the recommended 48 with cirrhosis. I, nor my doc, really had no clue to the damage that was hiding inside my liver flambe!

Please, everybody, reconsider that biopsy! Don't be scared of a bit of your time being uncomfortable compared to the time you'll have to wish you did it!

Sincerely,
Dana
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Avatar universal
Did you ever try it with honey? That would cut the taste. I think blackstrap molassas (I know I spelled that wrong at 7 AM)
is also used by some. I used to hate it. I also never drank much water, I was always a soda person. The other day when I was getting breakfast, I forgot to put it in the water, took a sip, and I was like "Ugh, there's something missing" LOL.
Or, maybe I was braced for the vinegar.
Another suggestion would be to dilute it in more water. My wife takes a 32 oz. cup of ice water to work with her, so it is much more dilluted. On the other hand, our massage therapist was drinking it straight at first. Now there's an ugh.
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Avatar universal
hi worry mom,
here is a quick read on the test explaining that it could be caused by a few things...it means albumin/globulin ratio. i've never had this ratio done that i know of but, i have had my albumin checked.

i do know that one of the things that can make the albumin low is cirhosis. but there are a couple other things too...i'm not sure your's is that low though...take a look at this thread below.

my albumin was in a low range once and the dr told me it could be caused by a few things and not eating right is one of them...mine was either caused by my liver, which is borderline cirhosis or the sun burn i got on vacation...dr leaned toward the sunburn... but i've never known for sure. my albumin has been on the low side of normal for months now. if your albumin is low, one of the things your dr may do is have you lower your salt intake...a low albumin from cirhosis can cause edema or asceties.

i would talk to the dr before worring too much...have you had a biopsy? if so what is the stage/grade of your liver?  this would tell you alot too as to whether or not to be concerned...the most important thing to find out is the status of your liver.

i pray you are okay,

sandi

http://www.labtestsonline.org/understanding/analytes/tp/test.html

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86075 tn?1238115091
you know, I've had this Bragg's Apple Cider Vinegar forever and it's one thing I cannot stand. But I do hear so many people say it's great for them, so once again, I'll pinch my nostrils and drink that stuff down if it kills me, ha ha!, you've inspired me! what's a little irky burpy among friends???
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Avatar universal
Hi Susan-
I don't know what accounts for my feeling so well, but I have few to no sx. I have lost quite a bit of hair, find my mouth and eyes are sometimes dry and irritated but I have virtually NO fatigue, nausea, etc... I am working FT with a 4 yo daughter and just moved 5 weeks ago. I have as much energy as before tx --though strenuous work gets me out of breath quickly. I had no sx before tx and only found out through the Red Cross after donating blood. I cannot explain it, but I am so very grateful for it.

NYHep,
I am so glad to hear that you are doing better this time around and glad you are happy w/ the doc. Please keep us posted as to the progress. Do you know when the first PCR is going to be?

Snook,
You are so right. People are totally ignorant to this illness and it floors me that there is so little being done to educate the public. Thanks for asking about me.
Lauren
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Avatar universal

Hi veg, so glad to see you back... I feel pretty good, go for my EGD and CT scan in the morning then maybe next week i get to start jabbing and popping (oh yeah baby). Im type 1, stage 4/4 and grade 3/4. SOOOO im not one of the lucky ones that can wait for better tx. in the near future. Hope your doing well.

Take care and keep your dippy way....John
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Avatar universal
http://www.usnews.com/usnews/health/briefs/infectiousdiseases/hb041021b.htm

A brief article on those who clear on their own.
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Avatar universal
please let me know how it goes, okay!  I'll be thinking bout you, you'll beat this thing...

You're in good company here with Goof, Jim, Coug and a few others to guide you and give you a helping hand when needed while you're in tx...

*dipster*
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Avatar universal

I thought what i said was that you sounded pro tx. So i would assume anyone pro tx. wouldn't want to wait... My mistake i quess, anyway you take care and be well.

                        John
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Avatar universal
Hi there, how you doing?

Thanks for that link...It basically talks about the 20% that spontaneously clear the virus...I would love to see a study done on people that have had it for years and don't have significant liver damage, such as myself...I hear from the medical gurus that some people have a "dormant" virus and those are the ones that can co exist with the virus, not so sure about that one, maybe I will be in that category...Hey, may as well shoot for the moon, eh!  LOL

Again, thanks...Most of your posts are geared towards the tx options and new trials, it was nice to see that, appreciate it...

*dip*
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Avatar universal
You wrote: "So i would assume anyone pro tx. wouldn't want to wait..."


Ahhh, if only it were that simple!  

I'm pro-capital punishment, too, but that doesn't mean I want to jump into an electric chair (Disclaimer: I'm not equating tx with jumping into an electric chair) LOL!

Bottom line....it's not about being "pro" or "anti" treatment.  I'm neither of those.  It's about making the best choice for my particular circumstances and encouraging others with this disease to do the same.

Susan

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Avatar universal
I almost put little dipper up there....first I thought dip, then dipper, then astronomically.....didn't want you to take it the wrong way LOL (since we are into nicknames here)

I am fine thanks for asking, hope you are well. I have wondered about the issue of coexistence, etc. Even though I have had no biopsy, ultrasounds and my numbers didn't raise any red flags. As you have probably read in some of my prior posts, I have read that viruses do tend towards co-existence over time, as they need us to live for themselves to survive. I also never smoked, never did drugs, and was never a big drinker. I went entire years without even having a beer, even before I found out.

I always attributed my young age of infection to being helpful to my cause. I have read some things on that, and I was infected via blood transfusion at age 16. I don't think I ever had elevated enzymes until 2 years ago (have had it for 21 years). I too, would like to see that type of study, and also more on age of infection. I think if I look enough, I will find them, and if I do, I will post links.

How long have you had it, and what was your age of infection? (I promise, if you tell me you got it at age 15, and have had it for 20 years, I will still consider you 21 years old).
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Avatar universal
We have similar lifestyles and histories....

I found out in May of this year I have this...It was discovered during a routine blood panel, slightly elevated enzymes lead them to a antibodies test, to a PCR and genotype..

I am 54 yo Female, geno 1A, stage 1 grade 1 with low VL...

I am about 95% sure that I got it from a blood transfusion when I was 17 years old in Massachusetts...I have never been a IVDU, no tattoos, no piercings, only other way would be through dental cleanings or a surgery back in 1991...

I was blown away when I heard I have this, as I am sure you were too...I did extensive research into today's combo's and do not want to go the conventional tx route...My major concern is will I have time to wait for the new drugs to come here in Canada...I may be a stage 1 today, but will I be tomorrow?  I don't think anyone knows...But I am hoping all this effort I am putting into herbs and vitamins and diet and exercise will work...

Why haven't you got a biopsy?

*dipster*
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Avatar universal

First, let me thank you for all the great info you provide here.

Second, Since veggie is a female i doubt she minds if you call her "the little dipper"

Third, i think its safe to call jim, "little jim" since a recent post by him stated something about a previous gf and 1 to 1 and a half inches.

Keep up the good work.... John
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Avatar universal
Thank you both.
My doc is not a big fan of a biopsy unless it is needed. I posted somewhere else (I have no idea where as I have been all over the place today) that he uses ALT/AST ratios and platelets as being important indicators, etc. He is also in contact with researchers and also has correspondence with Dr. Schiff. My last set of ultrasounds of liver, pancreas, and spleen were unremarkable. He also palpates to check for swelling, hardening, and whatever.
I really don't want one, and it seems that biopsies are being recommended less around here. He has treated many in his office, but those either on a transplant list or with tougher cases, he refers out. When I last saw him, he successfully treated 2 nurses (not employees) who were geno 1 with 18 months of treatment. He actually told me PI's would be the way of the future before they ever got into the clinic (a few years ago).
I hold him in high regard, and he does respond to my emails.

I guess, prior tests didn't indicate a need for something more invasive at that time.
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Avatar universal
John..LMAO!!!  You're cute!  Little Dipper and Little Jim..hehehe, not so sure Jim is laughing though...*smile*

CTON:  Yeah, I had a hard time convincing my doc to order a bx too because of all my tests showing no significant damage, I just wanted it as reassurance...I am the orignal worry wart and needed the comfort of the known...It showed I have mild fatty liver too, which threw me for a loop, but I am trying to loose the xtra few pounds in hopes that will take care of that nonsense...

I emailed Vertex last week and haven't heard anyhing back yet. I was asking about trials and when they will open up the list for the next phase of 950...I don't imagine they will do trials here in Canada though...

*lil dippa*
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Avatar universal
I think if I wanted a biopsy, he would have no problem in granting it.

I don't think any trials are planned in Canada, and the phase 2 trial starting next month is small, and I think the clinics already know. My experience with them, has been that they maintain a separation with the trial facilities, and they always refer me to www.clinicaltrials.gov.
Hopefully they will respond to you soon, but I made a comment to someone I email that I had a feeling they might be hard to get a hold of around this time because of the conference, and the web calls. I left a message for my contact, but I think he will have a lot of catch up when he gets back in. I'll bet he doesn't call me back this week.
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Avatar universal
Oh that's right, forgot about the conference...They have a lot to catch on I am sure...

I soooooo hope the PI's will be my answer to SVR...Those scientists have a lot of people at the edge of their seat these days, let's pray all that schooling and research pays off!!!!  LOL

*dip*
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99052 tn?1270983520
Hey good to see another online person here that is doing well on TX I am on week 42 and feel pretty fine as long as I don't lay on the couch in front of the tv when I do I feel sickish . I do much better staying busy.My last shot is my wife's birthday New Years Eve.
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Avatar universal
Hi there..greetings from spain
Is reasssuring to hear that there's people on the same situation I am. Wait/see status. My 3 docs didn't think I needed a biopsy and my stats were ok but the ALT on 80 (The PCR showed geno 1a, 2b and 5 million VL)a bummer :-(. I had a FIBROSCAN and I was F0/F1 on metavir scale. So no biopsy yet but told not too worry too much and comeback in a year with new blood tests and an ultrasound... So my question is..How can I have so little liver damage if I have 2 genos and a pretty high VL? How can I be calm while I wait? Don't drink & don't smoke but I kinda of ate all kinds of things(junk food, parma ham, sausages, cheeses and chickpeas)Typical spanish foods..But I'm slowly going vegetarian :-)

Vegas: Plz recommend a good diet for a carnivorous that wants to go veg slowly ;-)

saludos
the diver
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Avatar universal
glad to hear you are doing so well..you're over half-way thru!!! i've done 8 weeks of reduced doses, and this week, start on full dose and the beginning of my 24 weeks. love this doc!!!
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Avatar universal
Hey Sno,

Keep reminding me about the stay busy thing, and the mountain climbing etc.  I forced myself to do a two mile hike in the woods today.  Broke me out of a four day slump.  I
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99052 tn?1270983520
Yes I have been blessed on being able to stay busy to combat the symptoms.Before I started TX I had read about taking it easy the day after the shot,It usually dosen't work that way for me Im on call 24 hrs a day 7 days a week and some of my hardest days have been the day after shot night, a little tylenol and good to go.Now my wife could only work 2 or 3 days a week and she is a working maniac,when she was not at work she would be outside draging herself thru the garden weeding.It was much rougher on her and the last 10 weeks were muder.She made it and her 6 month test was clear.She feels great and running like the champ she is. Good luck on finding your path.jeff
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