Interesting Article: Its not the liver disease causing the HCV symptoms!!!

[DoubleDose]

Here is an article posted recently on the HIV and Hepatitis website regarding those with HCV and no liver dysfunction compared to HCV negative controls, and HCV positive individuals with elevated LFT's.  Interesting to note that the people with HCV and no liver damage, and normal LFT's scored just about the same in QOL as those with HCV and obvious liver dysfunction and LFT elevations.  This goes exactly in line with my belief that HCV is really a systemic disease, affecting the brain, CNS, and other organs directly, rather than just a liver disease.  Many doctors think our symptoms are due to ongoing liver damage, and correlate to degree of liver dysfunction.  This article directly contradicts this belief, and shows NO correlation of sx to liver problems or damage.  In otherwords this virus does a lot more than infect the blood and liver.  I think many of us already knew this instinctively.  Here is the article.  Comments welcomed.

http://www.hivandhepatitis.com/hep_c/news/2007/011907_a.html

The question then leads to the issue of:  What happens to the HCV that might be in our brain, spinal column, joints, skin, bones, etc. after SVR???  Do we REALLY have any idea at all??
We do know that the liver and blood will test 'undetectable' after SVR....but that is about the extent of it.  Why all the post tx symptoms for many of us???  And what about those who spontaneously cleared the HCV after the acute infection......why is it that they show impaired QOL almost universally, many years after their 'clearing' the virus???  Lots of unanswered questions!

DoubleDos

[chcnme]

OK here goes.  You've pissed me off.  It's statements like the ones you have just made that make wonder what the hell kind of person you are.  I take great offense at your remarks about this **** about "most people with Hep C being former drugs users" (well no sh** sherlock)  and that this fact is somehow supposed to account for symptoms that suddenly took our asses down, or that we ex dope heads are at greater risk of some kind of freakin a** weird malady 30 some years later from a life of long ago - like our 15, 16, 17 yr old short-lived dope shooting days are sitting inside our brains just waiting to pop out when we're 40 and have the world by the balls.   Right?  I was a dope shooting booze guzzling street urchin young teenager who got herself clean decades ago, buddy, and I never returned to those days, either.  I went on to climb the career ladder, was a great nurse, a great mother, had a great son, and had no symptoms of nothing until 25 years of Hep C and the symptoms that go with it began showing.  

Oh just let me shut up before I say too much to you.

[chcnme]

Anyone up for Toronto?

http://www.clinicaltrials.gov/ct/gui/show/NCT00188201

[cuteus]

it seems that knowing you are infected makes no difference in the manifestation of symptoms.  It is not the knowledge of dx that causes them, but it was their existance that led to the dx.  It looks like that statement applies to most that posted here, including me.  
I have been stating over and over that hep c is not a liver disorder, but a blood disorder, based on the many studies showing HCV influence on the many organs.  An article like this, is saying nothing new to me.  HCV is systemic because our reaction to the invasion involves a system response, and the subsequent secretions into the blood, affects your whole body.

How many here are getting ultrasounds post tx?  how many have shown granulomas in the liver?  just curious.

[Cindy10]

I agree as well, we are not all former IV drug users or alcoholics. Not sure why people think that. Dont take offense though. I think it is because it is listed as a major risk factor and thats why the assumption.

[DoubleDose]

I agree totally with your comments.  I think the virus is the cause of all the problems, not the person.  Maybe there are some unstable, and depressed 'addict personalities' who have HCV, but there are many many more who do not share that profile at all!

[MissMiss]

I don't think I am the only one that will take some offense at your comments.  For me, all I did was put faith in a doctor to do his best to perform a surgery at the young age of 13.   I kept saying I didn't feel well afterwards and that it felt like scissors were left inside me.  More than ten years later I finally, on my own, elected to have "adhesions" taken out and they found pieces of steel in my gut.  They even asked me, while my belly was cut open, if I had ever been near a granade that went off!  

There are many who have absolutely no risk factors (your insinuation we all were iv users) that have no idea how we got this ****.  Some of us got it at birth and some from dentists and some from blood transfusions trying to save out lives and some just don't know how they got it.  So, please don't assume we are all behaving inappropriately.  I was cheated at a young age and many others have similiar stories to tell.  We're not making this up.  

The depression most of us have felt is as real as anyone elses.  

****, now I'm just blabbing on.  I hope someone else sees this thread since it is so far down and can chastise your comments a little better.

miss

[HepCBoy]

I really don't think this is anything new, study after study shows little or no association between liver damage and QOL except at the extremes.

I think its a very difficult area to make judgments about. It always seems to raise a few hackles but the facts of the matter are that the majority, if not almost all, hep c sufferers are former drug abusers. I think if they are comparing QOL scores they need to compare with a control group of a similar demographic and not the population at large.

Or to look at it another way, people with hep c suffer from depression more than the general population, that may not mean that hep c causes depression but instead could be that people  who get depressed are more likely to engage in behavior that leads them to contract hep c. The conclusion could be that getting rid of the hep c may not transform your life .

[Cela]

It still amazes me how I was told my symptoms were everthing from depression, stress, possible CFS, and the worst one was a doctor told me I was just looking for attention.  I have felt bad for years, and went through many doctors and not one figured it out.  In fact it wasn't until we wanted to move overseas that I was even tested for HCV.  I have joint pain, and some believe it is the stickiness of the red blood cells which also promotes replication.

[DoubleDose]

I think the traditional thinking regarding HCV in the medical community was that it was a blood borne virus that attacked the liver.  They felt that the liver was the only organ that the virus really infected, other than being in the blood.  Today, many medical experts describe the HCV virus as Arthrotropic, Sialotropic, Lymphotropic, AND Hepatrophic...in otherwords, it infects the connective tissue, the salivary system, the lymphatic system, AND the liver.  These are the most recent places that HCV is described as infecting...I just think that the other specialty areas have not yet nailed down the potential for the virus infecting those areas as well.  Potentially I believe it possibly infects the kidneys, heart, brain, skin, bones and CNS, etc.  No one has ever truly ruled these locations out!  Most general doctors just ASSUME that it is only a Liver virus, that travels to the liver through the blood. Hence if your LFT's are normal....NOT TO WORRY! Quite simplistic!  I wish it were the case.

DoubleDose

[DoubleDose]

My history was very similar.  Started feeling fatigued in my late teens, and developed arthritic symptoms...lots of neck, back, and TMJ problems, along with anxiety, vertigo relating to heights (which I never had before), and also a variety of gastro issues which also had never been any sort of problem.  I spent years getting different diagnoses from different doctors, and never discovered I had the virus until the late i990's.  I always knew something was wrong, and I feared Lupus, HIV, CFS, and a host of other things.  I used to love the reply that it was all probably psychosomatic!!!  Doctors often don't know how much they don't know!

This virus certainly is very capable of causing a wide range of extra-hepatic symptoms with or without a person's knowledge of the virus.  Studies looking back at patient histories have demonstrated that.  The final question is:  Is all of this due only to the overall cellular immune response of the body to the virus in the blood and liver???  OR, does the virus also inhabit other tissues, cells, and organs causing periodic, and chronic flareups in those areas???  I believe it is the latter.  The chief reason they focus on the liver is that the virus REALLY likes that organ, and develops a very high viral load there, and it also causes the fibrosis that eventually destroys the organ, and leads to death.  If HCV in the brain or gastro system, or joints also caused a progression to death in those organs, we would be calling it a multi-organ virus, or a systemic virus.  Since it only causes SOME havoc in those organs, much of this goes ignored.

DoubleDose

[MissMiss]

I'm with Susan, in that I knew something was amiss for so long it isn't funny.  I was 13 at contraction and my whole life began to change.  I know, life changes as you hit the teens but this change was beyond that.  How can a young spry girl go from riding horses, bikes, A student, etc. to lethargy, sick feeling, arthritis type pains all over, C student, no zest, etc almost overnight?  Well, within about a year or two.  

I was always looking for the reason why and always tested normal for things like mono, epstein barr, etc.  

Thanks DD for the link.

miss

[stangshelly]

thanks for the link. Interesting look on hcv and the possibility of progression on other systems. I have had multiple problems for years so it would not be suprising to link it to hcv which I have had for 20 years or so. Still need more studies to be done. thanks again dd..:)shelly

[Forseegood]

Doubledose, thanks so much for this article, it's a validation for some of us...it really adds a lot of insult to injury that some docs, scratch that, many docs, believe that you shouldn't be manifesting symptoms unless youre pretty bad off in liver damage from HCV, stands to reason that having chronic inflammation and a virus in your system can have it's own drawbacks in your quality of life...thanks so much...

[timedog]

Have to admit my complete ignorance here in regards to Hep C and where it lives in your body. I was under the impression that it was a blood borne diseases that travels through your system, not that it sets up camp, so to speak, in your liver or any other particular place. Is this wrong?

[MissMiss]

All this talk has made me remember in my mid-20's when CFS was just beginning to be recognized.  There was an article in the paper about a fella who called everything a Zerox, hand me the zerox, Are we having zerox for dinner, etc.  At the time I was deep into a fatigue, lathargy period that I couldn't shake.  I couldn't remember a thing and my children got such a kick out of it.  I, too, had a name for everything, can't remember what it was but it was just one word.  Doctors had absolutely no answers except the old stand by that it was in my head and I was lazy.  I'll never forget how humiliated and alienated I felt.  The desperate feeling of being so alone and scared and even wanting to end it all!  And the pain from head to toe that was unrelenting.

I'm sorry to vent like this but it just hit me hard how hard this is on us and how alone most of us were for so very long.  I guess I gotta get a grip again.  Thanks for listening.

miss

[chcnme]

I had symptoms for years prior to diagnosis  (fatigue, insomnia, weakness, numbness in my feet, my arms, cognitive changes, night sweats, nightmares, night terrors, I began noticing an unbalanced gait at times, vertigo at times, and I also began to fear heights, horrible depression, crying spells for no reason.  I kept telling the docs something was wrong with me.  They all knew I had had Hep NonA NonB in 1974, but in 1996 (when I began having strange symptoms and going to the docs) I guess everyone thought if the liver enzymes were OK, then whatever was going on it wasn't the liver.  I was told I was depressed (I had absolutely nothing to be depressed about, though.) I had a real hard time accepting that diagnosis, but I did, and I tried to treat it.  I bet they tried me on 5 or 6 AntiD's over a three year period and kept telling me that one of them would eventually work.  None of them eventually worked.  They all made me feel worse, (I think)  and in retrospect I think they may have even contributed to some of the liver damage they found on  biopsy when I was finally diagnosis in 2003 after getting SSDI in 2002 after filing in 1999 for DUH.  From 1997 to 2002, all my labs were within normal limits every single time (at least twice yearly labs), including LFTs.  They were finding nothing wrong with me except "in your head."  After about 3 years of this I was finally convinced I was "just nuts" or that depression could be so awful that it WAS disabling.  Almost one year to the date after getting my SSDI based on chronic depression (and still feeling like sh** and having given up hope of ever feeling better) I broke out in a strange rash on my chest and cheeks and was convinced I knew what my problem was - Lupus.  I didn't have Lupus, but my doc told me my LFT's were up, my platelets, wbcs, and rbcs were down, and ... I was then diagnosed Hep C.

Yeah, I believe the virus resides in the brain and that it's definitely "in my head" doing something.  What?  I don't know.  And who knows where else it resides chipping away at QOL.  I felt better for about a year after I was diagnosed with Hep C (I guess I was high on not feeling "just nuts" - told everyone "I've been diagnosed Hep C!"  as if it was some huge improvement over being nuts).  But the reality of Hep C then crept in. Dealing with the reality of Hep C and treatment can also affect the psych.  

But anyhow...whoever posted that article, thanks. I've read it before, and each time I read it I have mixed feelings (anger about late diagnosis and relief that I wasn't "just nuts" after all :)

[Imagine]

There have been many studies showing a link of hcv to the cns. The affect of which still seems a little unclear but I sure have my own conclusions.

[susan400]

I had felt bad, run down, no energy, for years before being diagnosed.  I had tested positive w/high titers for Epstein-Barr Virus and CMV(Cytomegalovitus) and I had shingles at age 28.  I was tested for HIV numerous times over a 10 year period and it was always negative for HIV.  Finally, after years of no energy and a non-diagnosis of Hep C, I started getting right upper quadrant pain.  At that time, all the tests for gallbladder were ran, those all came back negative.  Finally, my doctor decided to do a hepatitis panel on me and I was diagnosed.  I'd had a doctor tell me way back in 1985 at one of those walk-in clinics that my blood work looked like "I'd had some sort of hepatitis in the past, but that it was non-A/non-B and that I should not even consider it an issue".  Since, my risky factor lifestyle was primarily in 1983, I am almost certain that this was when I got the HepC.  But, did not get an actual diagnosis until 1994 and didn't start treating it until 1997.  My point is, I felt like **** for years before ever knowing about the Hep C.

Susan

[NYgirl]

PS Like most I have significant liver damage but had NO Idea I had the disease. Had I known would I have just attributed everything to it? Probably. I'm tired from my HCV......I have a headache from my HCV.....

But never knowing - I always was fine.

[NYgirl]

DD I totally agree with your line of thinking.  But since (for example) pain is registered in the receptors of the brain...and not really in the leg or arm you cut - if you think of it that way then why wouldn't the HepC be affecting the rest of us as well

Gosh I don't think that made sense - I hope you know what I am trying to say.

so many people think when you cut your finger that your FINGER hurts but in effect it is your brain telling your finger it hurts.  does that make more sense?

Since that much is true - you can compare the symptoms and pains and triggers of HCV in the same way. It's not just a liver disease but also a neurological, psychological etc. disease as well.

[jmjm530]

Thanks for posting the study, however your conclusion that this points to a systemic problem is only one possible conclusion. Just as plausible is that HCV related symptons -- I'll use fatigue as an example -- are caused by the overworked immune system constantly trying to keep the virus at bay, regardless of the amount of liver damage. Following either logic, this could either be a reason to treat or a reason not to treat. To treat because even those with normal LFTs can have symptons and not to treat because these extrahepatitic symptons apparently will not get worse as liver damage increases.

Also of interest what the study said in regard to QOL of HCV positives versus HCV negatives.

"There were significant differences for depression and anger scores on the POMS scale, as well as for items related to body, relationship to partner, self-confidence, and zest of life on the EDLQ."

I wonder if the differences would be signifcant -- if any -- had the HCV infected individuals not known they had HCV? Sounds like the study conclusion above would be a reasonable psychological reaction to being told you had a chronic illness, albeit one associated with a social stigma. Which then calls to question the whole issue of how prevelant extrahepatic symptons really are.

-- Jim