took Riba advice, now VL has dropped .5 mil in one week

[merryBe]

I was just about to throw in the towel when you guys brought up the Lindahl study, and shortly therafter I read in here that simethicone and fiber both interfere with riba absorption.

After only one week on an altered Riba meal based on this, my VL has moved down from 555,000 to
55,000 .

Meaning I may be  once again absorbing and ergo responding to the drug.
Anyway it's worth a try. I could still go UND by 20 wks at this rate, or next week!!... and treat for 72 wks to be careful

what do you think??
mary

[jmjm530]

Yes, fiber supplements and antacids can interfere with riba absorption. Space at least 2-3 hours apart.

So, that's real encouraging a one-log drop in how many days since your prev (555,000) test?

The studies suggest that if you don't EVR (two log drop by week 12) that extending to 72 weeks won't help. However, not sure that takes into consideration someone who has been underdosing riba plus we're all different at the end of the day.

So, if you become UND by week 24, you could extend to 72 weeks although you will be in unchartered waters given you were not EVR. Did you up the riba or just stop the fiber supplements? Ideally, if you wan to be agressive, you would do both and add Procrit (epo) to the mix to tolerate higher riba levels.

Good luck with your plan, and basically -- assuming your UND by week 24 -- the decision will be is it worth continuing on to 72 weeks given the amount of liver damage you have, considering you did not EVR. A little birdie tells me that you think it is, so all the best luck:)

-- Jim

[merryBe]

that's going to be my push AGAIN next monday, for a slight dose increase, although, they have been hugely stuck in the mud on this.

the 555,000 was 2 weeks ago, the 55,000 about 9 days later....but it was those 8 or 9 days when I chucked my fiber rich breakfasts and dinners, and instead ate cherrios with olive oil (instead of oatmeal for breakfast)....with the the riba, and with a sugarless Nestles's crunch ice cream bar (or half a bar). It has the fat, dairy, little fiber....so I have that before dinner by an hour at least.

and this lowered my fiber to 3 grams per riba dose instead of 10-25 as before.

maybe if I get on my knees and beg I can get to 1400 riba...who knows...it would be loverly.

sure we are all different!!  I think it was when tou all made note of Lindahl.... mentioned serum levels that I thought, could this be what is stalling me out.....well........of course the verdict will be if I continue to decline, but that's certainly an exciting enough change to make me think I could be onto something.

the odd thing is my eyes seem to be a good gauge of how well I'm absorbing the stuff...the dryer they are, the more I'm getting....and for the last week they've been as dry as they were the first month, when I was dropping virus. So I think the absorption has gone up based on body feedback.

Lord it's a shame no one is monitoring this in the medical community.  In my case, the blood/platelet drops haven't been severe so they are no "indicator" as usual.
This could be because I am on HGH for pituitary dsyfunction, which stimulated blood marrow without all the procrit draw backs, or it could be no drops because my absorption has been low, but in any case, I think Riba serum levels and tailored treatment should be the new horizon we all push our docs towards.

thanks for the good wishes....pray my little birdies can chirp their best come monday!
MaryB

[sfwandwow]

Iam 25,000 at week 16 and they are going to 24 and they said i would mor elikely to clear or be cleared after they get blood work back..i havent heard..

[merryBe]

WOW is right, glad to hear somebody else is getting to break protocol. It's a relief when any of us get treated as a possible healer, not a statistic of doom!!!
Even if a stat says 95% won't go on to clear, the question remains, well, that means the 5 people out of a hundred will. So that's 5 lives that can be salvaged that are being written of by SOC protocols.

Instead of looking at the virus as 10 percent still there, oh dear... why not look at it as 90% gone, and consider this may lead to a successful result albeit more slowly. Amen?

[merryBe]

the liver damage being what it is...see part of the issue has been I've been saying for 2 years my gall/bilary system is awry....

finally got Benner to agree, all my pain is not liver related..

so tomorrow I'm getting a hidascan to see how much is duct blockage vs. liver nodule/cysts of fibrosis.....can't believe the stump speech I've had to give since June to now get my GP finally to do this test, but it will give all a better pic of what's going on.

also, it will help to ascertain how much time I really have to wait around/retreat vs. to press in now.
although the liver clinic said to me damage tends to be across the whole organ, I've read a lot that doesn't agree with that, so it will be interesting to see if the inflammation is due to bile flow or a "bad spot" of nodules.
When in my 20's I blew glass for extra income... and got exposed to radioactive cadmium...which you can inhale/get in your mouth while blowing...( blue glass was my fav.) which makes me wonder if there might be some spots of heavy metal damage.

anyway, have you any knowledge of the hida scan as a tool...it seems to reveal more liver info than the fibroscans from some things I've read.
MaryB

[merryBe]

cobalt..that should have been...sheesh brain fog at 900 pm////

[jmjm530]

Really don't know much about Hida scan as tool for assessing how much time you have to wait around. I believe it's a gall bladder scan, while Fibroscan is for the liver. So if you want to know how much damage your liver has, I assume you would need either a biopsy or Fibroscan.

[GoofyDad]

As long as I'm catching you here - - missed you in another long-gone thread - - I wanted to send you the best Holiday Wishes and here's to all you (and Jenna) are hoping for from 2008.

[buck60]

how do you handle  letting your employer, and friends know that u have hep-c?

[jmjm530]

Best Holiday and New Year wishes to you as well. Jenna was speechless when I gave her your regards.

Buck, You might want to open a new thread on this and I'm sure you will get lots of opinions. Not everyone lets everyone know, and with me it was on what I considered a need-to-know basis which was only a few friends and family members. And not all of them reacted in a way I would have expected. Once you divulge, the toothpase is out of the tube, so think carefully.

-- Jim

[nygirl7]

you know merry my doc was really adament about no antacids or fiber on treatment - riba absorption is so crucial...it just might work in your favor and disregard the odds because all along you were getting the wrong chance at the level (did that make sense)?

Meaning since you were sort of being "ripped off" on the absorption, maybe it sort of doesn't count.

If you do drop the rest of the way by 24 I'd go for the 72 and assume that your body could have gotten the two log IF you weren't taking things that prevented it from happening.  Man that would be so awesome!

[jmjm530]

Back to the fiber and antacid thing -- you really got to read labels, esp if you're into "health foods". I believe it was on the box of "Uncle Sam's" cereal where it warned about med interaction because of the added Flax. Poor Uncle Sam hit the garbage pail after I read that one :)

As to antacids -- unless you want to space them 3 hours away from the riba -- best to ask your doc for an H-2 Pump like Pepcid AC or a PPI like Nexium. They're generally better for heartburn anyway, and can be taken along with the riba. To avoid, however, would be Pepsid Complete which combines an antacid with an H-2 pump. Also, I believe Gaviscon and other similar meds have ingredients that can impair riba absorption.

-- Jim