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Author: Subject: Hepatitis C

Ultimate Peach





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  posted on 8/29/2002 at 10:44 PM
This is a place to hopefully get info and links to medical sites and articles on Hepatitis C. I am writing this on 7/17/03, editing my original post. I would note that my Hep C understanding and knowledge increases every time I read something. So keep that in mind as you read older posts, I'm learning as I go. Go to established medical web sites for info. Talk to your doctor for medical advice.

Me, I gave blood after 9/11 and they didn’t want it. What? And for the first few months I was misinformed and ignorant about what that meant. I actually thought I had it, was a carrier, but it was in remission or not active….. that was easy to deal with. It has unfolded, biopsy (liver not too bad yet) and now a year of Interferon treatment. That can be a tough ride, or just mildly really bad, from what I hear. But I want at least y’all to know the Readers Digest on Hep C. It is estimated 4-5 million Americans have it. If you don’t, you know someone. It is blood transmission. Not sex, not food. There are a couple people on here I know of, but I suspect many more. They couldn’t test for it until 1990 or so. So anyone with a blood transfusion prior may have it. The entire blood supply was contaminated and nobody knew.

Tattoos done with bad hygiene could do it, medical practices prior to “blood awareness” could be to blame. In my case, being 18 and playing with heroin probably did it. Haven’t done that since 1975. Dental work years ago pre the hygene used now, anything with blood risk. Shared coke straws, nail clippers, razors, shared toothbrushes all are potentials.

Hep C can take years to surface. I have been “burned out” feeling progressively for 3 years now. Thought it was mental burnout, but no mindset I tried could take it away. That is the first real problem, fatigue. A bit of mental clarity loss, and the next thing is getting a bit depressed as a result of being sick and tired of being tired. Other than that, functional. But the Hep is working and multiplying in your liver. It is a liver disease. That is what “Hep” means, inflammation, I believe, of the liver. It starts scarring, and causing fibrosis. The cirrhosis is if it continues past that. Not all do. Viral intensity is a factor. The confusing thing to me was all the Heps. None are related. The all are called hep because they affect the liver. I think it is 5% of Hep C people have liver failure. You can live with a pretty trashed liver before that point. Not well, but live. FYI, the Interferon in my Genotype 1 is a 50% success rate. up to 70% in other genotypes. So many have to live with it.

If anyone has personal questions, just e-mail. Thanks, I hope if nothing else you know a tiny bit about Hep C now. Peace to every one of you, you’re a great bunch, as Gregg says.


[Edited on 7/18/2003 by bird72]

 

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  posted on 8/30/2002 at 10:57 AM
Thanks for the informative post.
I'm sure it will clear up some misinformation for people who know of friends or relatives who have been diagnosed with it. You're right, unfortunately there is a stigma surrounding Hep C. Through people like yourself, sharing your experience and knowledge, people won't feel like they have to be embarrassed anymore.

I hope you do well with your upcoming treatment.

 

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  posted on 8/30/2002 at 11:32 AM

I dated a lady years ago who now suffers from Hepatitis C. She has had treatment for a few years now.....like you said...she has good and bad days. She was able to move from Georgia to a beautiful place out west where she says it's much less hectic to "get around. I still stay in touch with her...she's always describing these places that I wish I could visit....

If you would like to maybe share e-mails with her (and i'm sure she would be glad too.) I can get you in touch with her soon.She's a good hearted person to talk too.

So PM me with your e-mail addy if you like...

Good wishes for you...and let us know how your doing

Kenny

 

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  posted on 8/31/2002 at 12:20 AM
The Newsweek article is a great "Readers Digest" overview of the disease. If you have it or want to know about it, do a net search. There is a ton of stuff on the web. There are some fringe sites (alternative cures) and there are support groups. Some of those are scary because they can attract the ones who aren't going smoothly with treatment. I just left the www.philzone.com site. They have an INCREDIBLE Hep C discussion forum. It is just wonderful. I find with these, again, read with a grain of salt. Anyone can post anything and there is fringe and outright bum info mixed in with the good stuff. The medical, hospital, and those sites are very good for straight info. The drug company sites are well, not from a neutral view, although they are full of good info also.

Be your own Mentor. Guide your own path. Hep C only was identified 12 years ago. The long history studies aren't done yet.

 

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  posted on 8/31/2002 at 07:25 AM
Wishing only the best for you & yours. Many thanks for your valuable story.Peace
 
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  posted on 8/31/2002 at 08:30 AM
I had a dream last night that I was in the hospital and the doc told me I needed to get a liver transplant. I assume it was brought about by your post. I'm going to start taking better care of myself. Life is too precious to waste a single day sick or hung over.

Best of luck to you Bird.

 

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  posted on 9/3/2002 at 04:00 AM
I have spent a bit of time at the Philzone Hep C discussion Forum. It is a great resourse for a few reasons. It is populated with real people with somewhat similar tastes, so you are on an easily relatable point of reference. It is a pretty fair size base of people posting. There are people on the verge of starting, waiting on meds. There are people who have finished treatment. Some are waiting for 6 months so they can get an opinion on success. Some are apparently (I hear relapse more than I feel good hearing), apparently cured (yippeee), and there are the sad bunch who endured hell and it didn't work. There are even people who are going through round two. The thing is if one is at the cirrohsis stage... then treatment, even if not a cure, keeps the disease at bay for a year (or 6 months) and allows a period of actual liver healing, instead of continuing damage... so in bad cases, treatment is good from that point of view also. The one recurring thing mentioned from people who have done Interferon, is the depression that goes with it... Oh Boy! It seems anti-depressants and also sleep aids are common. Insomnia is also a side-effect. That goes great with fatigue, hehe.

Just a report.... If you need great personal info, Philzone. Again, not a medical site, just great in conjunction with the dry info.[Edited on 9/3/2002 by bird72]

 

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  posted on 9/3/2002 at 11:45 AM
Bird it took a lot to do what you have in this forum.Maybe you will help some body.
 
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  posted on 9/3/2002 at 10:56 PM
Thanks Tony. You know I am here for you and Cheryl always. There is so much to learn regarding this virus and the doctors have less information than the people who are going through the treatment. Seems you get much better information from the people going through treatment than any doctor is willing to give ya. Tony, we will keep in touch. Best wishes and lots of love always, Jody

 

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  posted on 9/10/2002 at 10:48 AM
Thanks Jody!

I just want to stress the philzone.com Hep C discussion forum. There are a lot of people on this road. It is such a great comfort to talk to like souls. It is sad and uplifting. Relapse stories (more than I want to hear) and also success stories. And lots of tips and info.

One point for anyone starting treatment.... prepare mind and body, and take care of important business that may be relavant in the 12 months of treatment, you may not feel up to dealing with it then. Gain 10 or 20 pounds prior. You will lose it I hear.

BE INFORMED. I have learned as much or more from research as from my doctors. It also enabled me to understand and have good discussions with doctors, as I knew what they were refering to.

Peace to all, this site is great and all of you are too. It is my comfort and escape to read. I just have no positive input in other areas, as I must stay focused. Nothing personal to anyone. Thanks!

I'll be back with a vengance, cured or not.

 

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  posted on 9/13/2002 at 09:34 AM
To anyone fighting a disease or disability or handicap............

Read todays news on Christopher Reeves. It is astounding and unprecedented. It should give hope to everyone fighting anything physical. God bless him, his personal research and experimentation will change how they approach spinal injuries maybe forever. YEAH!!!!!!!!!!!!!!

Afetr reading bad news all the time, this was a blessed Friday morn read.

Also, a very simple Hep fact, that may enlighten.... blood is the pathway, but the
virus replicates in the liver. If you want an astounding story, on the philzone.com site (hep c forum) there is a post with an interview with David Crosby. I had a stereotype impression of him that was wrong. He was clean and sober for 9 years when his liver failed. It is an eye opening story, the far extreme of the road this can be. But a success story aso, like Phil. Both of them were dying and got a new lease on life.
Peace to all.[Edited on 9/13/2002 by bird72]

 

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  posted on 9/13/2002 at 12:16 PM
Bird,
Always glad to see you posting.
Hope you're feeling great.
Your presence in the GuestBooks has been missed so it's great to see you!!
PeachNutt

 

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  posted on 9/16/2002 at 08:22 PM
I've made it a goal to look into what is a Hep friendly diet. Your liver is the filter for your body. Everything you put into you goes through the liver, so if you have Hep, it would be wise to be kind to it and not tax it more than it is. I'll hopefully put up some links to medical info. But it makes sense to go as natural and healthy as possible as. For the fatigue alone, high protien is a good idea. And give up regular crap food. Vitamins, aminos, fruits, veggies... easy on sugar...

It is important if you think there is a chance you have Hep, to find out. You can make smart choices then, if you are maybe making some bad ones now. Like drinking alcohol. That is the single worst idea with Hep. It will surely lead to later bad problems, and high risk of liver failure and or cancer. Also drugs... no known real THC issues, but ANYTHING else is taxing a tired liver.

I can't say enough how many people have this and don't know. Atribute their feelings to some kind of life "burn-out", but it is something else. A nurse with Be In Charge, a wonderful voluntary program that goes along with treartment, gave me insight, She said that after 911, the drug backlog went up to 6 months, because soo many people (like me) found out after giving blood to help. FYI, the backlog is alegedly to be over by end of this month, I am still waiting, should be any day.

Back to Be In Charge, it is an 800 service where you have a nurse to talk to, and these are specialized in the field and are aces. My nurse at my GI's office says she calss them for info, because they are aces. You can call and they will help with anything treatment or Hep related.

Again, if you got a transfusion prior to 1988, or used IV drugs, or got a tattoo or anything risky, get tested. 3 to 5 million Americans have this, more than AIDS. A lot of them don't know .

If anyone wonders why I'm posting HERE.. well, rock and roll musicians and lovers might (do I believe) have a higher rate of being infected than the average population. There's a whole bunch of us that played around in the 70's.[Edited on 9/17/2002 by bird72]

 

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  posted on 9/17/2002 at 06:08 PM
Reply to Bird, I don't want to scare the hell out of you, but you need to know this can create serious health issues. Go to webmd and also do searches on yahoo and learn all you can.. Hepatitis C can seroconvert (turn into) into HIV (the virus which causes AIDS). I do know someone who has it, she is healthy except for Lyme Disease flare ups now and then, but you must take care of youself. She got it from unprotected sex with an i.v drug user. She knew he had used drugs in the past, but he was done with that when she met him and he was even married when she had a tryst with him. I told her I didn't like him, but no one ever takes your advice before something happens. His wife even worked at a club we used to go to, and when she heard rumors and innuendo, she told his wife I'm not having an affair with your husband, I'm a lesbian, I have Gina; and then she asked me to go along with the lie. I told her I would not go an tell his wife it was untrue, but I was really mad that 1) she would lie and do that behind my back, 2) expect me to go along with it after she already went and lied, and had not even asked me to be part of her plot. I know, I oughta write a book.

 

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  posted on 9/17/2002 at 07:13 PM
I do know that a large percentage (would have to look it up) of AIDS patients and HIV infected also have Hep C. The opposite is not true. The thing is, there are NO long-term studies existing. they couldn't test until 1988 for it. It was being passed in the blood supply prior! Back to no long term studies, that is why I post about this. That and there are undoubtably quite a few people reading who have it, knowing it or not. It IS very serious. "Managing It", IMO, is except for some rare cases, means keeping the viral level at as slow a rate of replicating as possible. There still will be scarring, then fibrosis in the liver. So, managing in my interpretation is a misnomer in a sense. I am doing this to encourage everyone who has it to become their own mentor. there is a lot of info out there, and it is a shadowy subject with a large spectrum of potentials, including higher risk of liver cancer. The least one can do is live right to play the odds. Preferably get treatment. It may not work, but try, maybe more than once. Sticking your head in the sand and drinking, for example, is like saying you want to die young. I had such a simplistic view of this disease, but I was wrong... it is not manageable in the sense I thought.... read, read, read, is all I can say.

 

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  posted on 9/17/2002 at 07:20 PM
How serious? It is on the Social Security list of disabilities. It qualified me for a year of using short term benefits (as needed, thru my work plan). That is a whole nuther subject. You wil have to navigate the personal benefits and insurance minefields, to determine what you will need, and what you have to get thru a year of treatment, and maybe beyond implications. Read your plan, get counsel (atty). Know what you have and don't. At $1500 or more a month for meds, know up front what you have! It is hard to think business in the midst of health issues, but you MUST![Edited on 9/18/2002 by bird72]

 

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  posted on 9/19/2002 at 07:49 PM
I have just started looking at a pretty informative book I picked up. "Hepatitis and Liver Disease". Melissa Palmer MD. Found it at Waldenbooks. The biggest array of information you have, the better. This looks to be a good one.

A simple idea. Do good, and get a Hepatitis test for free. Give blood. You will get a letter if there are problems. No letter, looks good, although you should not trust USPS and preferrably get a clinic or doc test, ultimately. But it is better than feeling weird about asking for one from your doc, and never getting one as a result of that. Give blood, it's cool regardless.

Fact: one out of every 100 people is estimated to presently have Hep C (look around at an ABB show and think about that). 20% of these will advance to cirrhosis of the liver. 25% of these will have liver failure.

Information is a weapon of good.
Peace[Edited on 9/20/2002 by bird72]

 

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  posted on 9/21/2002 at 10:15 AM
A lot of people walk around with undiagnosed medical problems. When 9/11 happened there were lines of people with 7 hr waits to donate blood, and many of them found out that they had hepatitis or HIV or other problems. Even having a serious disease is not a death sentence. I personally know a physician who has lived with AIDS for many years. He not only saved his own life, but he brought screening and anonymous treatment to many others where he worked. Anyone who is afraid to go to get tested can go to any big drug store such as a CVS or a Duane Reade and get a home test kit called HOME ACCESS ($40) they have it in the pharmacy no prescription required, you do a little stick send the sample to a lab. You get an 800 phone number and a sample id #, you give them the number and you get your result. Nobody will ask you who you are. If you get a positive result, follow that up at another anonymous screening facility. Most county health clinics will do that. I don't know of home Hepatitis testing kits, but people need to start taking their health seriously.

 

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  posted on 9/21/2002 at 10:18 AM
I also want to ad that people should look into nutritionally optimizing their health. Don't just do searches under hepatitis, search for liver disease. I know milk thistle (an herb) is good for detoxifying the liver, and grapes are also good.

 

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  posted on 9/21/2002 at 12:30 PM
Very good points Gina. I am trying the milk thistle and dandelion, but it is like I think of information, the more multi-faceted and amount you have the better, granted it means trying to sort it all out. I feel diet, vitamins, minerals, as much exercize as one can muster if ill, stress management, maybe meditation and yoga, and of course the traditional medicine is the most proven and number one, but it is is all the aspects of mind body and every edge you can give any of them. I went in a health store and there is snake oil too, so buyer beware, but there is good stuff.

Also, talked to Peg-Interferon nurse rep yesterday and the waiting list will be over by end of the month, they did crank up production. As Gina said, 911 had a dramatic impact on health discoveries. I am still waiting, but she said check my mailbox every day now. The pharmacies can get it in in a couple days once you bring in your number. Talk to pharmacist, let them know you will regularly buy there, they don't stock the $$$ stuff normally, but will keep it coming if you advise.

Haven't been posting elsewhere here, but reading the new great ABB reviews is awesome........ have a great weekend kids.[Edited on 9/21/2002 by bird72]

 

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  posted on 9/22/2002 at 11:27 AM
If you have Hep C, get a vaccine for Hep A. Hep A and C togethor is beyond bad news. Very high odds of major problems. (Hep A, and B, most people fight off on their own, only a lucky few do so with Hep C).

BTW, no C vaccine.

Have a great Sunday.

 

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  posted on 9/22/2002 at 09:48 PM
Thought I'd throw out an offer. That Newsweek article really is a great Readers Digest primer on the virus. I would be glad to zerox and mail. I suppose I could scan and e-mail but I'm lazy. Just let me know. I'll get it off to you.

 

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  posted on 9/24/2002 at 06:14 PM
You oughta start reading the medical journals which can fill you in to new research. You can get to some of them thru the yahoo sites, or you can do it thru the ama (american medical association website). Also there are regional National Library of Medicines that will do Medline searches for you (for about $50) you can get info on all new treatments, research being done, you just have to be specific in your request, and request the abstracts. You should also ask for international research as in some areas they are way ahead of us. I remember a friend who had really bad psoriasis that left lesions all over his body, at that time the US offered bull **** cremes that didn't work, when the lesions started advancing up his legs, he cried and asked me to help him. We found that Scandanavian researchers were able to achieve 90% remission using phototherapy and combination drugs not yet widely used in the US. I sent him to his Dr. at Sloan Kettering with a wad of articles and a written tongue lashing and he got the help he needed. Sometimes you have to kick their ass to save your own.

 

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  posted on 9/29/2002 at 11:45 AM
Here is an EXCELLENT site, in laymans terms, and covers all the pertinent facts without too much detail. A must read. 8000 to 10000 deaths a year in USA alone, and it is a growing number. This is why you should read this, it may touch your world just by pure math, relative, friend, co-worker, doesn't hurt to know the game rules.

http://www.niddk.nih.gov/health/digest/pubs/chrnhepc/chrnhepc.htm

have a great Sunday..

 

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  posted on 10/3/2002 at 11:53 PM
Just keeping this alive, might help someone.Peace
 
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