Jim

[Myown]

Hi Jim,

I was looking over my labs from when I had gone to the Rheumy. I was wondering if you know anything about these tests. I always wondered why we didn't have tests to show where we are as far as T cells and all of that being most of the doctors feel relapse might be due to our own immune system, but anyhow I did have some tests and maybe you know something about them. When I said to my doc, if its my immune system that stinks, what will make this tx any different than the last. He said the tx will straighten out my immune system...

But anyhow if you don't know anything about these tests, that's okay, I just figured I'd ask incase you do know about these things.. I mean, I know the T cells are important and all of that, but its the  IG G (H) and
IG A - 63 (L) - I don't understand what that's all about....

But anyhow here are the scores...

Abs Total T cells      605 (L)           750-2500
%T Helper                  46 (L)            35-65
ABS T  Helper          414(L)              480-1700

"CD4/T cell Helper subset is low"

"small amount of IG G Kappa Monoclonal Protein seen
representing approx 12% of the total IG G plolclonal IG G
is not diminished. low IG and A and normal IG M."

IG G Quant                1750(H)               768-1728
IG  A Quant                    63(L)                 99-396
IG  M Quant                    47                     38-266

Thanks for any insight you might have,
MO

[Myown]

Hi Rick,
I miss you too! I have to touch base soon. Rick, with HIV, I know they look into all that, but they don't do it for some reason if the person is only infected with HCV and to me its crazy that they don't.

Glad to hear that you are thinking about predosing. My VL is climbing by the minute it seems so Pre dose is something that I think I need.

How long will your tx be? I have to do 48 plus taper.
MO

[CIRQDUSOLIEL]

I do know that they ( Dr's ) that I go too look at the importance of making sure that a person's T-Cell count is at least ABOVE the 400 range before they will even suggest treatment.  Of course, we know that not only do and will the T-Cells drop during tx as well as Abs Nue.  That's about the only info that I know of concerning Tx and CD4 counts.  I am thinking along the same lines that you are when it comes to predosing riba.  Although I will be using infergen.  Hope that you're well.....miss you!

In Him,
R

[Myown]

Thanks Elaine!

I just left you a 2 notes too. The thank you note and a hug too.

I think MH should give us some "Riba Rage" notes too. It would be so much easier to just click on something like " shut up, am I talking to you?"  or "don't come in my threads anymore jerk."  

I am only kidding of course, but actually it isn't a bad idea cause some of the topics do get a little heated and it would be so much easier to just click on something - rather than to type it out. Just kidding - I think?:)

How is your son doing?
Hugs to you too,
MO

[Myown]

I am pre-dosing with riba 4 weeks. Glad to hear that you think its a good idea. I will be dd for a couple of weeks - not the 3 months. Taper at end of tx.



MO

[Myown]

"I doubt if you will get very much useful information from these tests in terms of predicting why or why you didn't SVR last time and/or being suggestive of a re-treatment strategy. If you did, I would imagine that these tests would be incorporated more pre-treatment and we'd hear a lot more about them in terms of pre-tx indicatiors, etc "

-------------------------------------------------------------------------------------------------------
Thanks for your response Jim. The way I feel about this (the above) is that it IS very important to know the counts of T cells etc PRIOR to tx so that maybe there would be a way to help get the immune system in balance a bit more before going on SOC. The more I thought about this, it made me want to check some things out and thats when I came across this "Dr. Paul Cheney." He mentions some things that are very interesting about balancing the Th1/TH2 and how some people are 'stuck' in a TH2 mode - people that have had or have Chronic Fatigue Immune Dysfunction etc. He does not appear to be some off the wall guy and he does recommend certain "drugs" that will get you immune system in balance. He also mentions some natural stuff too. I did, years ago have Chronic Fatigue real bad, though the doc didn't really know for sure what was wrong with me, maybe it was acute hepc - who knows, but bounced back and was fine after that. A holistic internist had taken some tests one time and she said "wow, you had CF really bad." I should have asked which test result was indicative of that, but I guess I could find out.

But anyhow you might want to read some things that this doc Cheney has to say. I'll post a site, but there's quite a few sites if you google his name- you can find his teachings. Remember I said maybe the parasites caused my relapse?,,, well some things that he says confirms my feelings about what I think about all that - only thing is that I just guess and don't know enough to be able to put it all together, but when I mention things just from my own discernment, I expect my doctors to at least be able to put it together, but I find that doesn't always happen... i know the immune system is very complex and so much they don't know yet, but when I see "Immunologists" studying this more - not just the ones doing for research,, but I do believe we need more types of doctors as 'part of our medical team' when txing this disease and Immunologists - I just don't understand why they are not a BIG part of our treatment - makes no sense. I often wonder about the folks who have txed time and time again - has any doc took the time or even thought to give them a NK test, T cell etc? At the end of tx if there are Occult virons floating around, common sense would say that a person whose counts are low or someone who is stuck in the TH2 mode or someone that has Epstein Barr - their body wouldn't be able to suppress the few virons that ar left behind and they would slowly replicate, which did seem to happen in my case - it didn't come back with a vengence, was 8 million baseline and when I relapsed at 8 weeks post was only 87,000. That to me sounds like it was gone, but a few and because the NK and all of that is low, my immune system couldn't fight it off.


Thanks again Jim, always appreciate that you respond.
MO

http://www.dfwcfids.org/medical/cavalry.html

[FlGuy]

For my money, and the based on the advice I received, the trick seemed to be start out aggressively and get to undetected as quickly as possible.  Spacecoast, others and I took this approach in various ways.  For me, it was starting riba a week before first Peg and then doubling the Peg for the first four weeks.  A G3, I was und after 2 weeks.  However, the second tx was entirely different from the first (starting the riba early, more riba, all the Peg, extending usual duration, different Peg, early anemia stop gap, frequent early pcrs) that it's difficult to tell which, if not all, made the differnce.  I knew one thing, the second try had to be a whole lot different than the first go round.  To me, everything else was superfluous.

[jmjm530]

Should have said "by memory, FlGuy was UND by week 2..."

[jmjm530]

Sorry, don't have a clue :)

That said, I doubt if you will get very much useful information from these tests in terms of predicting why or why you didn't SVR last time and/or being suggestive of a re-treatment strategy. If you did, I would imagine that these tests would be incorporated more pre-treatment and we'd hear a lot more about them in terms of pre-tx indicatiors, etc

I sympathize with your struggle to make heads or tail of why you relapsed after being RVR, but my guess is what you're  probably finding out -- after conferring with some very top-level hepatologists -- is that they simply don't know the "why"s.

Hopefully, because you did respond so well the first time, re-treating longer will be the key.

Do you have a start date and a re-treatment strategy yet, i.e. drugs, doses, etc.? I'll put in my two cents for pre-dosing with riba at least a couple of weeks. No study data, but riba comes up again and again in terms of relapse, so conceptually, at least to me, it seems that getting your serum riba up to stuff coincidental with your first Peg shot makes sense. FlGuy was RVR using a similar strategy (he may have double-dosed as well) by week 1, and I believe he was geno 1, but not 100% sure.

All the best,

-- Jim