Thank You to chcnme

Chcnme ... thank you so much for your response to Colt regarding "to treat or not to treat".
I have copied and pasted here as I truly believe you are right.  

************************

"Please do yourself a HUGE favor now and get OFF the computer now and STOP reading about the benefits of treating when there is no damage to your liver after carrying this virus for decades and NO evidence to suggest that treating with no damage will benefit you, extend your life, improve your quality of life, or prevent some other horrible or deadly disease from coming along and biting you. STOP NOW reading about "extra manifestation" of Hep C. I completely understand that you need support and need feedback, but.... lemme tell you - do you want to wind up in the shrink's office having panic attacks because you are glued to a computer on account of your diagnosis of Hep C and you're reading what horrible things might happen to you and you're losing weight and shaking in your boots from...... worry? If you keep reading about what horrible things might happen to you, you will have a second doc you LOVE called your shrink!! GET OUTSIDE. GO!! Don't walk - RUN :):):) In a few decades, then sure - come on back and we'll tell you what horrible things MIGHT happen and why you might need to treat. But for now - you are very fortunate and don't need to treat. You need to forget you have Hep C and get back to living and tell your Hep C to take a hike and stop taking up good space in your head!!:) Have a good one. Your lucky thing!! I'm very happy for you"
*************************************************

I am newly diagnosed (Jan 07) and doing exactly this even though I have no idea what is going on with my liver.  I am wasting too much time obsessing with this and you are exactly right.  It's great to have support, but wearing myself out with it all.
Rose

[Proactive]

Kind of a yin and yang thing with a doc's and patient's decision to not tx.
How does social responsibilty play in the decision? Do we as hep c carriers have a responsibilty to treat and attempt to eradicate the virus, so as we don't pass it on to others? Granted we have to common sense precautions to protect others from infection via our blood, but is that enough. Do we have a social responsibility to attempt treatment...Food for Saterday thought and debate.....
You know I'm a pot stirrer (G)
Proactive

[Proactive]

"That is not fair of you to bring in social responsibility,(but then again you already knew this) " Life isn't fair,we make our decisions based on the facts and info we have,who we are, but that wasn't my question...Responsibilty to do what's best for oneself is not social responsibility, two different critters. Just thought it was an interesting subject, it did weigh in my decision to tx, the fear of infecting those around me.

[ladybug52]

Social responsibility = tx? Tx is not a social responsibilty. Responsibility means, don't share razors or toothbrushes. Inform your partner or anyone who has a need to know based on their association with you, like a dentist or  surgeon. Don't get tattoos. Forget about pedicures and manicures.
That's my concept of social responsibility. I think you're in the minority with your thinking. We treat to protect our livers, we take precautions to protect others.
Bug

[Proactive]

and I agree with you on all the precautions you mention, that is social responsibility. Is it enough, I don't know. I do know I was scared sh#tless that I might infect others..

[jmjm530]

I think those infected with HCV have enough problems without making ourselves lepers for no medical/scientific reason. "Bug" has it right above.  That doesn't mean the fear of transmission isn't a valid reason to treat for some indviduals, but for a doctor to tell a patient that they should be "socially responsible" and treat is medically irresponsible as I see it. I'd also like to "second" or "third", the sentiments expressed by "chcme" regarding the treatment decision. Well put!

-- Jim

[Kalio1]

I agree with some of what you say but to tell people to ignore "extra hepatic manifestations" is irrresponsible. These are PROVEN results of having this blood disease and should be taken into account if a person has decided not to treat their virus. You are in as much saying that none of the (often dramatic and life changing) extra hepatic manifestations are worth considering in the risk/ratio analysis of this disease and that is very bad advice.

If the person develops an extra hepatic illness, yet the illness hasn't caused their liver damage, what would you say then? How about those that develop ANY of the scientifically establised illnesses related to this disease? You are saying people should just ignore them??

I think that is monumentally bad advice, I hope no one ignores ANY of the REAL dangers of having Hep C just because they have no liver damage at this point.

[Willy50]

It just so happened that I read the original post right after I was looking at just how much time I spent on line during the day (.... and here I am again).  The words that Chcnme wrote might have just as been written to me.  I think that they are writing about simply finding some balance instead of losing our lives to obsession about being infected.

To be sure, it's important to educate ourselves about the disease, it's treatments, new treatments, tests, provide support for others, extrahepatic symptoms, modes of transmission, yadda yadda yadda but we should not let it consume our every waking minute or our lives; obsession is also a disease.  If we let our need to know about all aspects of HCV take our lives from us, we instead of being bed ridden, may end up chained to our  computers (those cruel dominatrixes ; )) instead.  For a person with no liver disease and no extra-hepatic symptoms many doctors would recommend the same; go outside!!!!

All cases are different.  In Colts case it may have been good advice indeed.  I don't think the post was a call to arms for all heppers to ignore their HCV.

I do agree that we need to be proactive about educating ourselves to minimize the chances of spreading the virus.  Since the chances of spreading it to loved ones is very slight even through sex (heterosexual sex seems to be 2% +/- 2% is what I tell people) the chances are SLIM especially when one is aware that one has HCV.  Most of us were unable to transmit the virus through living with spouses and children even before we knew we had HCV.  

Treating is not without it's dangers.  I don't want to get sidetracked with that argument but it is possible that in 2-3 years we may be able to treat in a shorter amount of time AND a higher cure rate.  Since the risk of transmission is negligible for most of us might we have a little leeway in being able wait to treat?  If it were really an issue don't you think the US government would be frantically trying to get the other 2-4 million of us diagnosed?  

I think it was a good post for Colts situation.  I'm sure that they also appreciate the viewpoints that run counter to it as well.  That's what these boards are for.....

Me?  I'm going outside.  : )

best,
Willy

[ladybug52]

Always the cheerful little voice of doom and gloom. So happy you are here to balance the equation between worry/relief. You have strong opinions that you like to force on others. Some people, like me, will never be swayed by your obsessive need to make others worry and second-guess their decisions. Do you have some medical degree I'm unaware of? I've tried to be nice & mature in my dealings with you, but you've broke the camel's back today. I'm taking back the coupon for the free car wash if I relapse, but since it will make you so happy, keep the free "I told you so-you should have listened to me" portion.

[jmjm530]

I agree with "Chcme's" advice to Colts. Chcme isn't saying that extrahepatitic symptons don't exist, just that they have been blown way out of proportion here in terms of the treat (or not) decision, especially in the case of someone like "Colts" who has minimal liver damage. Hopefully, I haven't mischarcterized Chcme's thoughts. Further, many of the extrahepatic symptons aren't necessarily resolved with treatment anyway. Two I can think of are fatigue and the metabolic syndrome. Both can be agravated by the treatment drugs themselves. And extrahepatitic symptons aside, what about the *treatment* symptons. For me, at least, A LOT worse than anything I experienced in close to 40 years living with the virus.

-- Jim

[ladybug52]

This is the real Ladybug not that other brat!
My first post to the forum was "Asymptomatic hep C" That's how I described myself in July of last year.
I had the virus over 30 years with minimal damage and NO symptoms. Tx by the 3 drs I consulted was optional. I chose to treat but it's all about personal decision and choice. My side effects from the meds were much worse than the normal life I had been living prior to tx, which included consumption of alcohol.
I've learned a lot here. I've made some changes in my life. I was very lucky and  I don't regret tx. I won't regret quitting either. just call me
No Regrets

[wyntre9]

Interesting and informative thread.

[orphanedhawk]

  This topic hit home for me. After I was diagnosed my husband was tested. He is positive but all his liver panels are within normal range and his ultrasound showed a normal liver. Some people's bodies can handle HCV without problems. Why go through the pain and potential problems of tx if your health isn't at risk??  
   Proactive: Yes there should be social responsibility FROM OUR GOVERNMENT.  There is something about the way this virus is treated that stinks.   Have you yet to hear the government or Vets admit to the spread of HCV amongst other things, from the shots given to Vietnam Vets? Young men were innoculated with an air blast, blood dripping down their arms as the next person was innoculated without cleaning in between. ( You can easily do a search for more info. if you like) Will our Iraqi vets be the next wave made sick by what they were told would protect them?
   Why are we always shown to be, junkies, prostitutes and, ex-cons??
  There is a lot to think about without us argueing amongst ourselves.

[Really Rose]

I meant to say that Chcnme not Colts brought my attention to the fact that I should get off the computer and obsessing about Hep C.
R

[Kit07]

Hi.  It is  foolish to disregard or downplay HCV  manifestations other than liver disease. They are not rare.  I believe they are underreported or misdiagnosed because HCV has fallen into the domain of internists and liver specialists.  Chronic viral activity is sytemic and can trigger autoimmune disease.  I say this because I have autoimmune thyroiditis and central nervous system abnormalities (T2 hyperintensities in brain MRI) that were discovered at the end of a year of treatment for HCV.  My neurologist believes they were caused by the virus, rather than the treatment (?).  My liver damage at the beginning of treatment was minimal, but I chose to treat anyway because I was having difficult neurological symptoms and I took the time to look into extrahepatic manifestations so I could argue for tx.

Below are two summaries from peer-reviewed medical journals.  www.pubmed.gov

Kit07

Extrahepatic manifestations of hepatitis C
Curr Gastroenterol Rep. 2006 Feb;8(1):53-9.

Given the high prevalence of chronic hepatitis C virus (HCV) infection, its clinical sequelae account for a significant proportion of patients presenting to gastroenterologists and hepatologists. Whereas the hepatic manifestations of hepatitis C are well described, including hepatitis, cirrhosis, and the development of hepatocellular carcinoma, the extrahepatic manifestations, though common, are less well appreciated. Although nonspecific, fatigue and arthralgias are very common in those with chronic hepatitis C. Extrahepatic syndromes have been reported in as much as 36% of HCV patients, but the exact prevalence is not known. Patients with these syndromes can be divided into those with a high degree of association and those with a more moderate or mild association with HCV. The most prevalent extrahepatic diseases with the highest degree of association with HCV are the essential mixed cryoglobulins with skin, neurologic, renal, and rheumatologic complications. Non-cryoglobulin diseases with a less definite relationship to HCV include systemic vasculitis, splenic lymphoma, porphyria cutanea tarda, and the sicca syndromes. This article highlights the pathophysiology and clinical manifestations of these disorders.

Hepatitis C virus-associated extrahepatic manifestations: a
Metab Brain Dis. 2004 Dec;19(3-4):357-81

The hepatitis C virus (HCV) infection is a worldwide disease that is characterized by a preferential chronic evolution with mild to severe liver disease, including cirrhosis and, in lesser proportion, hepatocarcinoma. Out of these complications, HCV is frequently reported to complicate extrahepatic manifestations. Among those associated to HCV infection with a high degree of certainty, mixed cryoglobulinemia and its complications (skin, neurological, renal, rheumatological involvement) are the most prevalent (50%) in HCV-infected patients. The other diseases include noncryoglobulinemic systemic vasculitis, splenic lymphoma with villous lymphocytes, fatigue, porphyria cutanea tarda, sicca syndrome, and autoantibodies production. The extrahepatic manifestations that share mild-degree certainty of association with HCV infection include B-cell non-Hodgkin lymphoma, autoimmune thrombocytopenia, pruritus, and type II diabetes mellitus. The other diseases such as autoimmune thyroiditis, lichen planus are more questionable for their eventual association with HCV and others (pulmonary fibrosis with or without polymyositis, progressive encephalomyelitis, Mooren's corneal ulcers, erythema nodosum, chronic polyradiculonevritis) are mostly case reports. Howerver, even in cases of tight association, the mechanisms through which HCV may promote or induce extrahepatic manifestations remain unclear and merit further investigations.

[orphanedhawk]

  Thanks for another view. I agree HCV is underreported. We are the virus of degenerates, remember, look at the advertising !  
   It is frustrating to find concrete answers involving HCV since people respond so differently to it. Therefore it is difficult to say what is the right course of action for any one indivisual. To treat or not to treat? How long? So many variables. Research is scattered and often funded by biased companies.
   I can't quote numbers but I do personally know people who would have gone to thier graves never knowing they had the disease and I have read statistics of such people. Sorry you weren't one of the uscathed.

[ladybug52]

I'm probably that no one in particular, and I appreciate your input. However, from what I've read, extra hepatic manifestations are not common. I know there are studies that lean both ways. Who knows? You have the data available, I have just general comments re: hep c that has no research to back it up.
I don't think Chcnme is saying disregard symptoms, and who with hep c would?
We're all scared, when I first found out I started thinking a bruise could be a manifestation, I worried about everything even though I was in good health.
I think the point is enjoy life and quit worrying at this point if you are asymptomatic with no liver damage.  Tx is an option later on down the road. Sorry if I'm misrepresenting Chcnme. I was much happier and relaxed before when I was asymptomatic. If I were sick I would have been checking out what waas wrong with my dr. Isn't that the normal course of all illness?
Thanks for the input.
bug

[chcnme]

Awww - thank you so much Rose and everyone else!  That was very kind of you all.  I have not been here SINCE I wrote that note  (not because I didn't want to come but because I've been too busy to be here.)

I don't have but a second here, and so since I think most people who come here regularly and have read my notes probably know where I'm coming from on Hep C, on "extrahepatic manifestations", on my own "manifestations", on treatment, on choices to treat, etc., and so -  without repeating why I think it's important to not let bad thoughts take up good space in our heads, I'm just going to move right along and get straight to Kalio's remarks about me.

Kalio, are you some kind of extrahepatic manifestation of hep C or some kind of extrahepatic manifestation of hep C treatment,  or just what seems to be your major problem regarding my note to Colts, anyhow?  I've been here at Medhelp for several months (and don't give much advice on treatment as it is), but when I do - you can rest assured it's the best advice I can give at that given moment, and you can also rest assured it's not advice from some dolt who just fell off the Hep C stupid wagon.  

I didn't tell "people" (or Colts, for that matter)  to "ignore" something.   If you don't know by now, then listen up, Kalio  (or go read my notes) and THEN formulate your insults to me accordingly, OK?   I have not been one to claim Hep C doesn't carry with it some risks of possibly other serious problems, nor have I been one to push the DO NOT TREAT agenda, nor have I been one to scare people regarding treatment.  So - in all fairness to me  (you can be fair, can't you?)  my response to Colts was NOT .... let's say .... exactly the BEST platform for you to come in and assert that I give people bad and irresponsible advice.   With Colts having no damage, you can give your holier than thou extrahepatic manifestations **** a BREAK on this one. The spirit of my note to colts was clear, and I think the spirit of my note to you is clear, too.

How was that for an "extrahepatic manifestation"?  

Anyhow... everyone have a wonderful weekend  (what's left)!   While I'm here, I saw  (above) a note from ChrisDDD about Dr. Cecil.   I only have few minutes right now and don't have time to go back and write to that particular note (and so I'll respond here, quickly).  Dr. Cecil is not my doctor,  but he has pointed me in good directions several times before in this past year and a half.  He has answered my questions I had about trials, rescue drugs, infection, etc., the significance of drug resistance, his opinion on Fibrosure testing, platelets, VX-950, trial designs, HCV796, etc.  I've heard very good things about him from some of his patients, as well.  

See you all later.  Thanks again. I think the world of you all.  We're just all doing the best we can, I guess!!  

[Really Rose]

I was just referring to the fact Colts brought to my attention that I have to get off the computer searching for everything and anything on Hep C and manifesting it into fear regarding my situation.  


When I know all the facts regarding my situation (after I have a biopsy done) I will have to make that decision then. Until then I can read to be become more informed about Hep C.  Learn some options from this web site and cut myself some slack.

Take Care All!
Rose

[ladybug52]

And it wasn't just young men with bloody arms from the air guns, I'm a vet too. Some of the stuff that happened while I was enlisted is incredible to me now but of course there's no record. I requested complete medical records but got only a portion of my records from Phoeniz Az. Really, I  know they are not complete, because my pregnacy, shot records, records of my hospitalization in MS are missing. Funny how I got inoculations, ran a fever and had high white blood count and was hospitalized for ten days w/o a single page of documentation. I'm hyperventilating just thinking of it.
Gonna get off here for awhile.
Hugs,
Bug

[Kalio1]

Your comment "always the cheerful voice of doom and gloom" was offensive and uncalled for. I have spent countless hours here being supportive and encouraging to others and I attempt to also share disease information as often as possible and share links to pertinent info that might help them.  This is a medical info support forum, that is what the intended purpose is for heavens sake. .It's ridiculous you call me negative on a DISEASE INFO support forum for sharing facts about this disease. Disease by it's very nature is "negative" They need the facts. Being aware of these issues are of major importance to people who have Hep C regardless of their liver damage level, particularly when they are deciding to treat or not.

I did not invent extra hepatic mainfestations,  the fact that many will develop leukemia, lymphoma, diabetes and a wide variety of other skin disorders, blood disorders and other organ involvement is well documented and can not be logically separated from the reality and risks of this disease. They should be talked about along with the ramifications of treatment, new patients should be told all about them so they can factor the risks into their decisions.
There seems to be this attitude amongst some  that if your liver hasn't sustained any damage you are AOK and that is not the case, being HCV positive dramatically increases your risk for other illnesses, liver damage or no.



You might want to check on the thread above where several people posted regarding their blood disorders/cancers caused by HCV.

[Kalio1]

Your comment "always the cheerful voice of doom and gloom" was offensive and uncalled for. I have spent countless hours here being supportive and encouraging to others and I attempt to also share disease information as often as possible and share links to pertinent info that might help them.  This is a medical info support forum, that is what the intended purpose is for heavens sake. .It's ridiculous you call me negative on a DISEASE INFO support forum for sharing facts about this disease. Disease by it's very nature is "negative" They need the facts. Being aware of these issues are of major importance to people who have Hep C regardless of their liver damage level, particularly when they are deciding to treat or not.

The fact that many will develop leukemia, lymphoma, diabetes and a wide variety of other disorders, blood and skin disorders and other organ involvement is well documented and can not be logically separated from the reality and risks of this disease. They should be talked about along with the ramifications of treatment, new patients should be told all about them so they can factor the risks into their decisions.
There seems to be this attitude amongst some  that if your liver hasn't sustained any damage you are AOK and that is not the case, being HCV positive dramatically increases your risk for other illnesses, liver damage or no.



You might want to check on the thread above where several people posted regarding their blood disorders/cancers caused by HCV.

[ladybug52]

Posting your answer twice didn't make any more of an impact than your orginal post to Chcnme. She never said ignore extra hepatic manifestations. IGNORE was your word Kalio. And cheerful is a flattering adjective: full of cheer; in good spirits: a cheerful person. I'm sorry if I offended you when I pulled my head out of the sand.
To quote Jim;
"Further, many of the extrahepatic symptons aren't necessarily resolved with treatment anyway."
To quote myself:
"I think the point is enjoy life and quit worrying at this point if you are asymptomatic with no liver damage. " (Keyword asymptomatic which means without symptoms-if you have symptoms of illness please, consult a dr)
I did consult the above post and noted the statements made:
1. "So after extensive (so she says) reasearch by the GI dr, they cannot find ANY case studies of someone in my shoes!! "
2. "I don't know how this may relate to what you are going thru but since I can't think of a single person here with anything similiar happening to them"
3. "i know how you feel in that no one else seems to have these things.. only 1 in 200,000 people for mine."
I'm sorry that you can't interpret what I mean. Hopefully this will help. We are like oil and water, let's just agree to disagree in our approach to "support" here.

[chcnme]

Rose, I'm sorry you had to be subjected to Kalio's **** on account of some note I wrote to Colts.  The point is (or was) - no one with Hep C needs to fixate and dwell on extrahepatic manifestations just like no one with any illness needs to fixate and dwell on what their last breath might feel like.

Thanks Ladybug :)

[Kit07]

Hi all.  Of course no one should fixate or dwell on their diseases.    But people who are well-informed are better able to speak with their physicians, articulate their symptoms, and get better care.  For folks who wish to educate themselves about the apparently  hot topic of nonhepatic hcv pathology,  here are two more links to a couple recent medical abstracts.   Technical, but readable.  The links I posted earlier were a couple years old.  

Information is good

Cheers
Kit07

P.S. Kalio I have only been lurking for a couple months,  but I appreciate your posts, especially the reminders about nutrition.  

Extrahepatic manifestations of chronic HCV infection.   2007 Mar;16
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17410291&query_hl=7&itool=pubmed_docsum

Symptomatic and Virological Response to Antiviral Therapy in Hepatitis C Associated with Extrahepatic Complications of. Cryoglobulimia   2007 Apr 6
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17415652&query_hl=7&itool=pubmed_docsum

[ladybug52]

Anytime sweetie!
Bug

[Kalio1]

Your clique is showing.

[chcnme]

Watch the whole thing, OK?  It's good. It really is.  

http://www.youtube.com/watch?v=Fj0DYOklU9E