Various questions and comments

[audreywald]

I have been following the "thanbey" debate with interest and (brain fog) induced confusion. Someone please tell me, is this a "patient to patient" forum or not? That is what it says at the top. Is this forum for pateints and families dealing with hep C? Just patients? Or anyone with an interest?

Other question? In general, do most of us on tx feel somewhat miserable most of the time? I am up to shot 10 tomorrow, and at best I feel only a little bad and at worst I feel miserable. Too many different sides to go into, but is that the general experience? I am a little worried because weird stuff is going on with my stomach almost all the time since I started tx, and sometimes I am in a fair amount of distress in this area.

I am also grumpy, irritable, sad and at times just pissed off. I KNOW this is the meds, because this is not how I usually am. Also I worry about hair loss much too much, and am now checking the sink every time I comb my hair which is less and less often.

So, in summary, I am not having fun, how about all of you?

[Revenire]

You da man!

Thanks again for ALL of your posts, stats, and support.

[GwithHepC]

Willing:

Thanks for the links. "Localization of hepatitis C virus in gastrointestinal mucosa: a possible reservoir for relapse" was particularly interesting.

G

[willing]

yup, I also find the tone of certainty in some of Dr. Dieterich's  replies as posted on this forum a little hard to swallow (though I supppose that's part of the job). For example, re the probability of late relapse, one doesn't have to look too hard to find evidence that's at odds with his 99.99 statement.I don't recal how many significant digits he cited, but see <a href="http://www.hivandhepatitis.com/2003icr/03_assld/docs/1109/110903_d.html">Veldt</a> or <a href="http://www.natap.org/2001/aasld2/day22.htm">McHutchison</a>.
Re the blood-brain  barrier issue, there seems to plenty of evidence that treatment with interferon or other cytokines is associated with psychiatric disturbances (eg <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12823087&dopt=Abstract">Kraus, et al</a>, <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12466036&dopt=Abstract">Wichers</a>  and <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Display&dopt=pubmed_pubmed&from_uid=11799348">related articles</a>) but whether cytokines are effective in eliminating HCV-infected CNS cells is less clear as best I can tell. It's worth keeping all this in perspective. Yes, HCV replication in the CNS has been recently documented (<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Display&dopt=pubmed_pubmed&from_uid=12424714">see</a>, particularly the Radlowski papers) but that's only one of several non-liver tissues in which inefficient HCV replication has been observed. All of these, including the liver itself, could be a potential "reservoir" for late relapse(<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12939605&dopt=Abstract">see</a>) - so why stress about the CNS?

[thanbey]

I look forward to Dr. Dietrick's reply.

thanbey

[GwithHepC]

Scott:

You are right; the references I cited are a bit old.  I do hope Dr. Dieterich answers our requests and provides some links to recent studies on this issue. Personally, I find Dr. Dieterich a bit too overly optimistic in all his replies - but he does have excellent credentials in hepatology.  I would really like to see some research on this before I make up my mind one way or the other.  

G

[Revenire]

Yes, he does give a "pep-talk" sort of answer at times. I know what you mean.

[Revenire]

Thanks for posting the studies.

#1 is from 1997 and all I could see in that was Dr. Dusheiko's:

"Interferon is not thought to readily cross the blood-brain barrier."

I believe the key words here are "is not thought" and this is seven years ago?

#2 is from 1996 ...

I am not trying to shoot you down here either or get in a slugfest. I just want the answer.

Dr. Dieterich made his statement in 2003 or 2004. The http://www.hivandhepatitis.com site is made up of doctors, multiple doctors ... various specialties, etc. It isn't a website of patients trying to find their way through a disease, like ours is.

And a BY THE WAY -- the doctors listed there are REAL doctors, unlike our Mother Teresa -- who has herself listed as a doctor on a website.

Anyone can read (and email) the staff, doctors, etc.

<a href="http://www.hivandhepatitis.com/doctor/topics/hcv1.html">The Doctor Is In</a>

[Revenire]

Thank you. I've done the same.

[Revenire]

You go to the doctor(s) and come back with some meaningful information.

Dieterich made a public statement that he stands by. His peers did not contradict him. Are you one his peers?

You were listed on a PUBLIC website as a DOCTOR but you're NOT. That is, while not criminal fraud, still fraudulent -- a lie. You never looked at the website your trumpeted here? Please spare me ... tx hasn't fogged my brain up to that level, mood rings or diamonds. And, please don't tell me they meant your "PHD" ...

You stated Dieterich was wrong. You also stated peginterferons didn't have antifibrotic effects, when they clearly do. I asked you about it then. It is still on the board. You didn't answer then and you haven't yet. You even went so far as to state that people's livers who attained a SVR worsened. You're not an authority on HCV.

Below were my oh-so-polite questions to you:

----------------------------------------

Thanks for posting the link to the study and your site.

While it is clear that people who achieve a SVR benefit the most from the antifibrotic effects of peginterferons don't a certain percentage of nonresponders also benefit?

It seems to me that the jury is still out on that question.

We won't know that until the HALT-C (studying Pegasys) and COPILOT (studying PEG-Intron) studies are completed, or later. These, to my knowlegde, are large studies -- both involving over 1000 patients.

"Both studies will attempt to determine whether long-term treatment with low-dose pegylated interferon can help delay the development of fibrosis and cirrhosis, slow the progression from compensated to decompensated cirrhosis, and reduce the chances of developing liver cancer (hepatocellular carcinoma)."

How long after completing treatment does it take for any benefit to show up in a biopsy? Two years? Five? One?

Best,

Scott

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You answered that yes, peginterferons DO act as antifibrotics but that when people stop taking them livers get worse -- to be fair you said "MAY" get worse. Included in your response was the standard PITCH for your charity. The line for $$$$ was tossed out among the SICK. Some bit. I didn't.

Then came this question -- which you still haven't responded to.

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You're saying that people who achieve a SVR only have a histological benefit if they remain on treatment? No, that simply isn't true.

I don't believe that enough studies have been done to give a final answer on peginterferons as antifibrotics. That is the reason for the HALT-C and COPILOT studies.

Sure, someone with mild damage has time to wait -- perhaps. That would depend on disease progression etc. and that's something that can't be 'predicted' in a linear matter. 'Usually' disease progression is slow but in some cases it isn't.

----------------------------------------

Yes, you answered what YOU wanted to, addressing nothing else. That I admit. You presented yourself as some sort of authority on HCV, when you're not. You acted as if you had some sort of say on whether people should treat or not.

I asked this:

----------------------------------------

Well, gee ...

You're saying that a patient's liver who is 'cured' (and let's define 'cure' to equal a sustained virologic response) becomes worse two years out? Or do you mean in non-responders? THAT I could see but in responders? I know of people that attain a SVR that go on to develop HCC ... yes, but how many? Not too many, more than likely. If the virus is not attacking the liver why would the fibrosis progress? Do we have some data showing that to be the case 2-4 years out? Dr. Hoofnagel says that this "may" happen? I am not clear on it.

----------------------------------------

You answered by defining what CURE means for me. LOL, cure? Gee, thank you.

You're really just full of something but what it is I really can't tell. Perhaps you have some sort of charity I can send my money too to keep you around to advise people here on how they should conduct their lives?

[GwithHepC]

I wrote Dr. Deiterich a few days ago and asked for clarification and for him to provide some references that prove Interferon does cross the blood-brain barrier; I will post his reply if he answers.  

Below are links to two articles regarding the blood-brain barrier issue that seem to refute Dr. Dieterich's statement.  This following article says "Interferon is not thought to readily cross the blood-brain barrier," and can be read <A href="http://www.hepnet.com/nih/dusheiko.html">here.</a> (Under the Neuropsychiatric Side Effects heading.) The second one states Interferon does "not cross blood-brain barrier," and can be read <A href="http://hepatitis-c.de/antivira.htm">here.</a> (Under the Pharmacokinetics subheading for Interferon.)

G

[thanbey]

As a point of clarification, I did not say Dr, Dietrick was wrong. You have said I said he is wrong. That is quite different.  

I am saying he is making a statement that is outside his own discipline and area of expertise. The neurovirologists who are studying this question (and I gave you names to look up more information if you wish to) have not definitively said that and are skeptical due to the size of the pegylated molecule (44 kd for Roche and 38Kd, I believe, for Schering Plough's product) and the nature of the blood brain barrier.

I am not inclined to argue. Our medical director (Aronow) is a first line neurovirology researcher at UCLA and the NIH. He tells me that the key may be to draw the virus out of the brain and into the cerebralspinal fluid where the pegylated molecule can go.

Research on this is very preliminary at this point. NO ONE can say with any certainty what the research will ultimately show. It is premature for Dr, Dietrick or anyone else to be making statements that indicate anything is known with certainty.

I urge you to write or speak with him yourself. I doubt very much that he would take offense, as you have, to what I have stated above.

I have compiled a few articles you may wish to read in order to start your research.

Accurate information is the goal. Perhaps you might come back to the board with what you find.

[honey1616]

Befudd....haha that is funny...No..for once I was being totally serious...Redbud!
Dave..I feel so bad for you as you seem to have some very rough times and then your postings are always so uplifting and helpful! I honestly don't know if I could go what you have been through and then always be so positive!
Dallas...You are NOT going anywhere!!!  We would miss you and I know you are somewhere in this big state of TX..hahahaha Might have to do a manhunt here!

[honey1616]

Great Idea and thinking about either redbud or yes I love Dogwoods also!

[Revenire]

I'm glad you're staying around too.

[cindee]

Can you please give me or direct me to info on tissue after tx. I went to ask jeeves, and by golly, there you were!!!! Thanks for being here for us. Your input means a lot to me! Love, Cindee

[Revenire]

Nope, Audrey it sure isn't too much to ask.

[CARUU]

You hang in there too!  Thanks, caruu

[Tallblonde]

Allow me to speak as someone who's not seeing the world through the brain fog of treatment:

I'm stunned by the gauntlet that some people have to pass through to be accepted here.  A foul-mouthed troublemaker like Ring-a-Ding passes muster, but Thanbey is attacked because of paranoid suspicisons of what her agenda MIGHT be. People have compared her to Hitler and Al Capone, for God's sake!

You know who looks bad in all of this?  Not Thanbey, that's for sure. Those of you who have attacked her look petty, paranoid, ungracious and mean-spirited.  Her website solicits funds -- SO WHAT!  We should be grateful that someone out there is trying to raise money to bring awareness and a cure to this damn disease.  

I've read every post she's added to this board over the past week and not one appears to me to be inappropriate.  In fact, she continues to be polite (I know, I know -- the hell with good manners) in spite of the appalling rudeness display by several of you.

In the six months since I was diagnosed and began visiting this board, I'm amazed at how many fights break out on this board over the dumbest things.  One poster called a newbie a "*****" on Christmas Day because she asked the same question too many times! If this is what being on treatment does to people, I think I'll put it off as long as I can.

So go ahead....attack Thanbey all you want.  By doing so, you say  volumes about YOUR character (or lack thereof) than you do about hers.

Susan
P.S.  Just for the record for you super-paranoid types...I don't know Thanbey.  Never met her, never saw her website, never contributed to her organization, nor has she paid me to say this.

[Revenire]

Re: Who looks bad? I would say that would depend on who does the looking.

I am not trying to stir the pot but go back and read the ORIGINAL exchanges with thanbey and see it was all very polite. She was asked some questions. That's certainly fair isn't it?

We were discussing antifibrotic effects of interferon and a statement Dr. Douglas Dieterich made. thanbey said Dieterich was wrong ... I asked for some proof he is wrong. She had none.

[jonihs]

I had those same symptoms from ascites building up in my abdomen when my liver was failing. Get a Dr. to do an ultrasound ASAP. This is only 1 of many things it could be, but I'd be worried.   Love, Joni

[audreywald]

I also have that kind of hernia. And a cyst on my one remaining ovary; discovered because of my trip to the ER with lower left side pain. I had a stomach scan and (shhh) could not get all the barium down. I KNOW I need these tests but I just don't want to do it yet. I am so sick of being sick. And a bit sick of docs, hospitals etc...

On a positive note, I spent the day with my new grandson yesterday. There is nothing like cuddling a baby to  remind me what I am fighting for and why. I have custody of my older grandson and plan on just enjoying and spoiling the new one. AND being around to see them both grow up!!

I became a grandma at 41, it is not too much to ask to see great grandchildren, is it?

[cuteus]

I can not encourage you too much on the colonoscopy, that prep was NASTY.  There was nothing left in my intestine or stomach, food undetected.  But really You should, you need to rule out intestinal disorders.  They did find a hiatus hernia in my case, not shown in upper GI series.  I heard the prep nowadays is not what I did 6 yrs ago.

Get the new referrals.  It will get better.

[cuteus]

I am glad you took a deep breath and sloowwwly released, and deciced to hang in there.

I am glad that Indy and vicky and others have the gift of words and keep our emotions balanced.  

I am glad that rev  and other knowledgable people keep our wisdom updated.

Audrey: that is the summary of the tx for a lot of us; not feeling like ****.
Is not necessarily that we feel good, but just not like ****.   Dark moods weeks (they pass), irritability and intolerance (they become manageable), anemia(treatable), hair loss(cut it, I was told).  On and On but you learn to live with it and manage.  I must say I do take Vicoprofen for that general malaise/achy feeling and  it helps to tolerate these meds.
I did have periods of intestinal incontinence and cramps, now I have tummy ache for a week (after shot 36). Sx are unpredectable as when they come and how severe, but don't chuck it all to the meds.  Do your research and mention ALL symptoms to your doc as you never know if it is the meds or some organ that has decided to act out on these meds.

[Revenire]

I think that's a great idea.