Hi All, I have heard people refer to the virus "hiding" in organs or tissue even when it is undetectable in the blood. Does anyone know anything about this? True or False? thanks. .Love. Karolyn

Howdy-
Karolyn has a great point, I too, would like the people that keep mentioning this fact to prove it also, as I have not seen anything that substanceuates that point, which latly has been brought up more than once, for the virus to survive out of the blood would mean it could survive on the ourtside our skin? ends of our hair,? thats would be about the only place that blood does not exist in the human body?.

Be Positive Be Well+


------------------
--Get Outdoors-Enjoy Life----Neil

Hi Karolyn,

It's not well put that the virus "hides" in various organs or tissues. Rather, it is that the virus has been found thriving healthily in the spleen, liver, brain and cns, and so on. It seems to live happily in many tissues, not just blood and liver.

As we know there have been, with all treatments used to date, many people who achieve a complete but temporary viral response (blood tests record virus as undetectable), but do not achieve SVR--SUSTAINED viral response. They test positive at end of tx or at 3 or 6 mo. follow up.

There is an additional, smaller group, that achieves undetectability for some time, maybe months after tx ends, but then relapse--virus is detected again.

In both of these cases, a logical theory is that the virus was still surviving somewhere in one or more of the organ/tissue reservoirs, even though too little is circulating in the blood to be detected. And when the interferon or the body's own defenses fade, it replicates again. This is not quite the same as the virus "hiding," but that phrase is used as a summary of what's going on.

Until the advent of PEG, this pattern was actually the majority pattern, the typical case. This may now be getting less true, with newer tx regimes.

It is not a question, then, of somehow "proving" this pattern, as if it were only suspected, or just hinted at. Rather,it is actually the most common pattern found over the years of hcv research. What we've all been so anxious to see is the proof of the contrary pattern--that the virus would go, and stay away, and for a large percentage or even most of us. The very recent treatments offer much more promise that we might be getting there.

Still, it is worth remembering that even with the newest, most effective PEGs, even if a majority of us might achieve long term undetectable status, there is still a large fraction, a considerable minority who will not. So the "hiding" metaphor will still describe what happens to some of us.


peace (please)


sean

Thanks, Sean. Karolyn

Sean-
Well said, BUT the fact still remains that blood is still cycled though those organs and body parts, spleen, liver, brain, etc, And other tissues as well, even our largest organ the skin, and including bone.

I may not be a scholar, but I know that blood and water are found though out our entire body system, when we are found undetected at twelve weeks, [in our blood, yes]
- you know that is what the remaining 36 weeks of treatment is for, to hunt out the remaining hiding Dragon butt bug Viruses and take them out.

Therefore, to say the virus can hide in organs etc, other than in just the blood is incorrect.

The virus may somehow attach it self to an organ tissue, deeply tucked away, but still has to be in contact with blood, therefore eventually the treatments in the blood will attempt to terminate the virus, but in some of us that time frame would be unrealistically too long to do so, for our health.

Some on the other hand, are fortunate enough for the treatments to be successful in the safe time frame, should treatments made to last longer? be stronger?, mixed with Zadaxin?, of course if we knew that we would be all cured-
BUT that is one of the reasons why others and myself are taking these treatments, to perfect these treatments for future generations; someone has to be pioneers in any perfection of any treatments.

This Pegasys treatment, I believe is my shot at "Curing myself", I do not want to hear anymore Bulls**t about me happily living with HCV, and dying of something else, because the Quality of MY life, was crap, even if this treatment does not work 100%, I know its on the right track, because even as harse as treatment can get, I feel better now, than I have in years.

I agree that both sides of the track concerning treatment is healthy and warranted,
but the energy and resources, that is put into this controversial issue should be put into the SUPPORT of all of us here with HCV, regardless of our decisions,

Be POSITIVE, Be Well+


------------------
--Get Outdoors-Enjoy Life----Neil

Studies have been done that demonstrated that liver tissue can be positive for virus even though the virus was "undetectable" in the sera.

I know only of my own involvement with a study looking at brain tissue. The results of that study are scheduled to be published in a peer reviewed journal this year or early next.

The bloodstream does supply tissues and organs with nutrients, but it does not "wash" all parts of the body. The vascular system is made up of arteries, veins, capillaries. Not everything that is deposited by the bloodstream is washed away by it. Deposited virus can, and does, attach to cells and tissue and remain there. We are only beginning to learn what implications this has for the disease process.

It may explain why symptoms (or extra-hepatic manifestations) can appear in those with a low or undetectable viral load, while those with a high viral load can be symptom free. It might also explain why treatment does not always resolve these problems in those who have an SVR. This research is on-going.

I am fairly sure I have an article or abstract on this on the website. If not, it should not be hard to find on a multitude of MEDICAL sites.

I have no plans to change the information offered or to tailor it to anyone's preferences. It is what it is.

The more we know the better we will be able to help people and find the cure we are looking for, or at least a less toxic treatment.


best thoughts,

thanbey
www.hcop.org (http://www.hcop.org)

------------------
www.hcop.org (http://www.hcop.org)
preapproved by moderator1




[This message has been edited by thanbey (edited 04-03-2003).]

T-
And once again, we are just saying the same thing, yes, say a virus isattached to an organ or tissue and even yes it may not be "washed out" by the bloodstream, but my point was that sooner or later the treatment that is in the blood stream will eventualy contact that hidden virus.
-
Neil

Neil,

We do not know that, and can't assume it from the data we currently do have.

Again, if you find the HCV virus by PCR (in tissue) AFTER treatment in a patient who is undetectable by PCR in sera.......

The virus is incredibly small (less than 50 microns, I believe) while the Pegasys molecule is 40 kd, much larger.

This means the virus can go where the interferon may not be able to.

thanbey

------------------
www.hcop.org (http://www.hcop.org)
preapproved by moderator1



[This message has been edited by thanbey (edited 04-07-2003).]

T-
Ok - Say we can not assume that, But according to Roche, if treatment satuates the effective pecentage of the blood system, and eventually is absorbed into the complete body system, then a hidden Virus would, at some time, HAVE to have contact with fresh treatment satuated blood therefore........and so on.

------------------
--Get Outdoors-Enjoy Life----Neil

Hey Neil,

Yes, that's the ideal. But if it really worked that way every time, Pegasys woould be 100 percent effective, which it ain't.

NObody is saying you are wrong for choosing interferon tx, NOR is anyone saying you should not expect to conquer the virus. You have very good chances. And we're also learning that there are likely health benefits for the liver (the system as a whole?) from ifn treatment, even aside from viral conquest, so that's a plus, too. We did not have reliable reports of this before this past year. All to the good.

With hep c, however, there is simply no certainty--not yet, not with the science we have so far. So, we hope for the best while preparing for the possibility (i said possiblity) that things don't go perfectly well.

I applaud your courage in going forward, but you don't have to argue with folks trying to keep the public up-to-date on the pluses and minuses of current medical practice with hep c. These factual reports are not an attack on your decision, nor your chances.

Peace! for goodness sake.


sean

in my limited understanding of viremia, they are not much more than a chemical molecule, that under the right circunstance has the ability encounter conditions that allow it to reproduce itself. if the conditions are right, no matter where the virus is, it will remain intact until a chemical reaction occurs that will either alter its (chemical) structure in a way that it either mutates into another strain or or can no longer function.

in short, according to all the instruction i have recieved on the topic, a chemical reaction must occur that will alter the virus in a way that will render it to a form that will either allow it to replicate or simply be filtered out by our wonderful bodies.

if the virus simply sits there unaltered, it will remain a danger of being introduced into a condition from which it may begin to replicate itself.

It's getting late and i have a HAPPY HAPPY weekend planned with my daughter beginning after school lets out tomorrow.

My best wishes to you all, and i can't think of words to express my gratitude for all your concern and devotion to helping people concerning this matter!

The people here have been a Godsend for me during my treatment. You have made the road more smooth and my outlook more positive!

God bless you all!

Wes

Sean Buddy-

I agree peace is needed in these times, like your self, I know of others that have family in the big desert, and we all pray that this will be over quickly and everyone’s loved ones will come home safely.

- umm Its just when people state a message like this-

QUOTE:
"Only 7% of the global world of patients actually treat and see a result. We already know that treatments are inadequate, so continuing to hunt with that dog doesn't look so promising at this point. It is tough, expensive and doesn't work at all for African Americans. 500 millions people worldweide are infected and interferon is not going to be a solution but for the selected white, middle class who have good insurance. That's the reality, Neil."
UNQUOTE

This coming from an intelligent influential person, whom has had several persons close, fail on these treatments, you have to agree that this and other statements of this sort is very one sided,

These type of statements, although PART of the truth, do nothing, but bring those of us that have made that decision to treat, very much down, it fails to state that the 7% mentioned is changing quite rapidly since the introduction of the improved treatments and treatment additions, in fact that number has risen quite substantially.

It does not mention that these present treatments are helping and yes CURING all types of different condition caused or related by HCV. And they HAVE improved many peoples life’s also, CHEMO for cancer is off the scale harsh for a treatment, it does not work for everyone, and is not for everyone, but if YOU get cancer, would you not want to attempt to rid yourself of that disease with that treatment, or you going to wait until the “CURE” for cancer?

I have witnessed these very same one sided tactics, push others off this board in the past, that were on a treatment, what gets me was these people were here for support and friend ship, this will NOT happen to me, so Yes, I will get defensive.

People use this board for their own hidden agenda’s even if they will never admit it, if you look in the guidelines this board is for support, friendship, and experience’s, and yes info we all need and appreciate, but the depressing one sided crap from individuals should change, and would go a lot further with a little support, and kindness and maybe trying to make someone’s day, instead of ruining their week.

Peace, positively and prosperity -



------------------
--Get Outdoors-Enjoy Life----Neil

What?

It appears to me that this is the type of debates we need.That is what this board is about. We need to see both sides of the issues to make our own choices, so that dog needs to hunt. I have been MIA from the board for some reason, but was able to start posting again. I was reading some other boards and it appears, that the old Peg-Intron method may be leaving the system open between treatments. I noticed that people on this method are over dosing themselves at the start in an attempt prevent this. I am sure this is not something that gets reported or approved. The new Pegasys program is said to be, "one size fits all". This may eliminate the problem of leaving the system un-treated for periods of time. Lost 1, I am glad to see you sticking to your guns, as I am Thanbey. You are lucky in the fact that you dont' have to pay for your treatment of Pegasys, but we all dont' have that luck. From what I have read, these treatment costs have greatly increased to 3 times as much as before. There are questions of the virus mutating, if the treatment does not work. Long-term side effects even if treatment works. Well a person who has under gone treatment, be able to use new treatments, if the current ones dont' work. I know it is said that you can quit the Pegasys, if it does not work in 12 weeks, but does that also leave these questions open? So lets continue to see both sides of the issues, with all its variables of age, order or younger, ethnicity, other health issues, genotypes and current status of liver condition. The only constant being ourselves and the choices we make with the information this board provides. Lost 1, continue on with your fight of the virus with Pegasys and providing new info. Thanbey, thanks for your continue effort to up-date this board, so we can make informed decisions.

Touchee', Boonies.

What the folks who are already on treatment need to remember with regards to this board and the ongoing quest to review chemical treatment vs non-chemical treatment is the fact that making the decision to treat chemically is about one of the biggest decisions we have to make - if not THE biggest - as Hep C diagnosed. It is not an easy subject nor decision.

Those of us without symptoms or liver disease at this time don't have to rush into treatment. It is an option that is open and the pluses and minuses must be explored and fully understood. Look at the trauma Is This Real has been under in trying to make the decision to treat or not to treat. ITR represents all of us in our thought processes and agonies that we go through when we are not sick. This is our reality!

If we were sick or with liver damage, the choice would much more readily point to chemical treatments. But we aren't. Thus, the pluses and minuses and stats have to be examined almost under a microscope. Because we aren't sick. Therefore the benefit of improved quality of life does not exist for us. In fact, quite the opposite will more likely occur. Surely you can understant that, Neil.

If I were sick and made the decision to chemically treat, I probably would skip over these topics. The problem about talking about this issue is we know we are hitting areas that may not be suitable for someone who is already on treatments. I am very sorry about that.

But then I am fully aware of being in the agonizing decision process. What Is This Real has been through has left a mark on me. I understand the plight. And he is not alone.

The fact is that you, Neil, need to focus on the pluses and how well you are doing and feeling on treatments. ALL of us love reading that stuff because not only are we happy for you, personally, but for those who are scheduled to go on treatments it is very encouraging ... and will help further improvements of stats and meds in the future .... for which the entire world can be happy. Make no mistake, none of this is about you or your choice, to the negative. On the contrar - we are grateful.

There are alot of us out here ... and I bet there are probably more folks out here like me, Is This Real, Kackles, Boonies than you might realize. Folks who just got diagnosed and are skimming the info, reading boards like these. Even DirtDiva has stated previously that it took her husband a long time to make up his mind whether to treat.

The board is for us all. I love what you have to contribute, Neil. I wish you wouldn't feel defensive. You have nothing to defend .... nor do we. We are in this together and each of us have our own story, own problems, own stats, and own opinions, and own decisions. We should be able to tolerate AND support each other. This is not a simple disease with a simple answer.

Thank you for all you - everybody!

Diane

Amen, Diane!

I have found extremists on both sides of the coin. And I mean EXTREMISTS! There are those on the pro-treatment "side" who bash all alternative methods and vice versa. It gets scary for me, too, when pro-treatment people use scare tactics.

It is absolutely necessary for both sides of the coin to be discussed without anyone getting defensive (or offensive). Especially for those newly diagnosed who have limited knowledge. I feel very fortunate to have no manifestation of the virus and have relatively minimal damage. These facts made my decision not to treat easy; and I would have not felt so comfortable with my decision had I not been exposed to pro and con of both "sides" without prejudice.

Love & Blessings, Karolyn