Philzone.org Discussion Board: Archive 2004: Hep C Archive: Just diagnosed with Hep C

I am a 29 year old man who has never used needles and have been in a monogomous relationship for 4 years. However due to an accidentaly prescribed medicine overdose i had t o spend some time in a rehab center in humboldt county. After being there a week they transfered a heroin addict who was detoxing, bleeding, puking, and sh*ting all over himselff and on the communal toilet. I demanded that the people in charge move me and they refused. Now I have found out I have Accute Hep C and am abviously concerned; I have heard from doctors about milk thistle and other homeopathic solutions, or to use a year long treatment. Was wondering how many people have tried either of these methods and with what amount of success.
Please contact me i can be reached at aol im akabluto
icq 131352216
msn prop_215@hotmail.com
or please email me at grateful_jay@hotmail.com
Thanks!
also please check out www.stophippieprofiling.org
Thanks for your help!

BTW
i was suggested to begin taking milk thisle bliperum and schizandra
am wondering if this is the best way to get started or if western med is more successful
THANKS

Hey Now JF,
Welcome to our special corner of cyberspace. A sacred space many of us call "home". I think you'll soon see why. You'll find a whole bunch of wonderful pholks here with tons of knowledge, support and advice to see you through. I think most hep c related subjects have been thrown around here more times than I could ever count. Just brousing through the many threads and Archives years will attest to this...they hold a wealth of valuable information.
Personally speaking, I've not witnessed firsthand ONE person clearing this insidious disease using just herbal remedies nor homeopathic methods. However, I have heard of acute hepatitis c not progressing to chronic disease. Rare...but it does sometimes happen. Some pholks have all the luck.
Plenty of pholks here can attest to the triumphs of beating this disease using the interferon, interferon/ribavirin, or pegylated interferon/ribavirin treatments with or without the benefits of other supplements.
Whatever you choose...you'll be alwayswelcome here.

Oh,...and btw, hep c+ risk is'nt alone for iv drug use. Rarely is it passed through sexual contact. Plenty of other ways to get this disease without pointing to one thing alone. Shared toothbrushes, razors, coke straws, tattoos...anything with blood to blood contact.

The message from Phil Lesh that started all this here:

Update September 4th, 2001

Greetings from PhilLesh.net!

HEPATITIS C
SEARCHING FOR THE CURE!
A PERSONAL HISTORY

After the birth of my first son in 1986 I did the responsible thing and applied for life insurance. The results of my physical indicated that I had a little known liver disease called Hepatitis non A Non B, a viral disease. I had probably been infected in the mid-sixties, and years of hard drinking had aggravated the disease. I took my doctor's advice and gradually cut back on my drinking to the point where I quit completely in 1990.

By the time I was diagnosed with Hep C (when a test was developed in 1991), I was a happily married man, father to two beautiful, healthy sons, and ready to deal with my health. At that time there wasn't much information available, and few treatments with much promise, so I became a vegetarian, sought out alternative methods to strengthen my immune system and exercised daily. I was not in any rush to do a liver biopsy or chemotherapy, and was easily convinced that it was not necessary. I now feel very strongly that it was a mistake not to have seen a hepatologist as well.

As I now know, a liver biopsy is much more informative than blood tests (in fact, my blood tests improved weeks before my liver failed). A GI doctor or a hepatologist will also do regular tests for liver cancer. Hep C increases the risk factor for liver cancer, so it is very important to be screened for it on a regular basis; cancer is much more likely to be deadly when found late.

1995 was a very difficult year for me. Within weeks I lost Jerry and my father-in-law, who died after a brief battle with liver cancer caused from Hepatitis C. My family was racked with grief from these two huge losses. I also had the unpleasant task of dealing with the fact that there was not going to be any touring income to cover the unbelievably large overhead at Grateful Dead Productions. I believe that stress of those times lit the fuse of my hepatitis and allowed the virus to rage. I feel that my major decline started in 1995 and by 1998 I was in end-stage liver disease, and knew I'd have to have a transplant.

It was easy to be in denial about my health during those years; there was so much stress, and I was in my mid-fifties, so I blamed a lot of the symptoms on aging. I was thin and losing muscle but I was still very active. I know now that I had a small internal bleed on the road with The Other Ones, but at the time I thought it was caused by the awful tour food.

In early September 1998, one evening after dinner I suddenly felt horribly ill and then started vomiting copious amounts of blood. I lost a third of my blood that night, and for the next month had periodic internal bleeding and blood transfusions. This was the beginning of what we called crisis mode. Jill didn't leave my side for three months for fear I would hemorrhage; she slept on the floor next to me at the hospital because I was experiencing one crisis after another- she was told three different times that I very likely wouldn't make it through the night.

After a month of emergency room visits and weeks of hospital stays I had a shunt put in to help relieve the pressure on my liver. The shunt helped for awhile and I was able to gain a little weight back. However, within months it clogged up and I was back in a dangerous position. Meanwhile, we did a lot of research on liver transplant centers and decided to list with the Mayo Clinic in Jacksonville, FL. They had an incredible team of doctors that I connected with right away, a short list and a small nurturing hospital for recovery.

I prepared for my surgery with an excellent diet, short walks in the fresh air, meditation and guided imagery. My doctors encouraged me to choose music to play during the operation, and I also had the powerful love and healing energy and prayers of many caring people. I was watching dolphins play in the ocean when my doctor called and told me to come in. My surgery was about 3 1/2 hours and I did really well- I was out of the ICU within 6 hours and actually walking within 12 hours. I was out of the hospital in six days (on Christmas eve), although I had some rejection so I had to go daily for treatment.

Even with a new liver, I will always have Hepatitis C, and have seen it flare up twice since my transplant. The first time was because of the steroids they gave me for the rejection; it took months for the numbers to stabilize. The second time, after the fall 2000 tour, I came home with a sore throat that I couldn't shake, and after a few months we discovered that I had a fungal infection. I am more susceptible to fungus infections because my long-term anti-biotic and anti-rejection medication protocols suppress my immune system. Since it took so long to identify and treat the infection, my immune system was stressed to the point that the virus flared up. A recent liver biopsy showed, however, that now my liver is doing great and my numbers are all back to normal.

I have learned a lot about what I can do to take care of myself and to protect the gifts I have been given. I was blessed to have received the blood of many giving people, and the ultimate gift of a liver; this from a young man who had told his mother that he wanted to be an organ donor only a few months before he died in an accident.

I encourage you all to: Be tested for Hepatitis C.
If you test positive see a Hepatologist (liver specialist) or a Gastroenterologist.
Ask your doctor if you should be screened regularly for liver cancer.
If your doctor suggests a liver biopsy, do it (it doesn't hurt and it is very important).
DON'T DRINK ALCOHOL! (it's like pouring gasoline on a open fire)
Exercise and eat a healthy diet.
Control the stress in your life.
Keep your immune system strong.

I believe that it is very important to be informed. As in most things in life there isn't only one right path; you should learn as much as you can from doctors, books, people who have the disease, the Internet; but only you can choose the right path for you. Many people choose to be treated with interferon/ribivarin, other go the holistic path, others do both. Talk to your doctor about what is right for you.


We are opening up a discussion on Hepatitis C with the hope that the many people who have Hep C or love someone with Hep C can get support and strength from others. Please keep the discussion kind and respectful. Remember that this will not be a medical site but only a support group. Always check any tips with your doctor!! Many doctors are well informed about alternative treatments and will support a treatment that may help and warn you away from something that could do damage.

Hepatitis C is a lifelong challenge and your doctor should be someone you feel comfortable with and will really listen to your concerns.

Please help us support Hepatitis C research; if you can't make our benefit, you can still send a contribution to:

Unbroken Chain Foundation
Hepatitis C Research
PO Box 10188
San Rafael, CA 94912

Share your story. Support and be supported.
Click here to go to Hep C Discussion.

To make a long story; simple as possible....I was diagnosed in 1999 shortly before this Philzone forum was made possible for support.I did a whole bunch of web surfing looking for hep c knowledge prior to this. Sadly, I ended up more confused than educated on this disease. Other online hep c support groups provided no comfort nor answers. To be honest, I recieved no knowledge, support, nor advice from any of those groups. Most were to difficult to navigate for the electronically impaired retard I am. Either that or riddled or rife with disinformation. At that point in time still little was known about this disease nor treatments. Happily, we've come a long way since. We still have a long way to go. That's where you, all the other pholks here and I fit in. Strangers stopping strangers just to shake their hands.

Shorty before Sept. 2001 my wife and I had the pleasure of meeting Phil. A wonderful and warm meeting I will forever cherish. It was at this meeting we discussed hep c, liver disease, treatments and various other topics. Needless to say...I was scared shitless being recently diagnosed. It was at this meeting Phil reassured me that he was forming an online support and discussion forum just for pholkslike me and you and to keep my eyes out and ears tuned for it. On Sept. 21, 2001 my wife found this great site. The rest is history. A long history united with caring and wonderful pholks combating this insidious disease TOGETHER here. Pholks who don't BS a BSer or sugar coat their words. Pholks who don't shun anyone because of beliefs, gender, race, ethics, musical tastes, sexual preferences, nor if their feet stink or not. Unconditional love. That's the beauty of these threads and everyone here. Altough at most times I can act like the Philzone hep kat klass klown deep down I respectfully and gratefully rejoice daily that this opportunity has been extended to me. Bless this phine phamily.

I did find a HOME. A beautiful home indeed.

JF-
Welcome to Our Pfamily here at the Zone, there are
alot of Loving,caring people here, who will be here for you if you need us !!!
I was diagnosed with Hep-c in 1999, after 30 years
of what the Veterans Administration calls my use,
abuse and addiction to street drugs ! I was at first, very destroyed by the news of having Hep-C,
But my saving grace was this zone and all of the
Loving,caring Pfamily I have found since being here !!! Please don't ever give up hope, because
with each others loving care, and support we can
all fight and slay this Old Dragon, One Day At A
Time !!! I have used Milk Thisle,as well as other
herbs, but for me,who also suffers besides the Hep-C, I am a Manic Depressive with suicidal thought and tendencied/ Paranoid Schizohernia, and
I have found good old Medical Marijuana, a great
aid to help me through those hard times !!!
My 2001 blood tests showed that I had a Genotype of 2b, which I am still unsure if that is good or
bad, but my point is that we all can bet this Old
Dragon,by not giving up hope and by learning all
we can about this disease, find a good doctor who
you trust, and be willing to take the docs advice
on battling this disease !!! We are all here to
help you,support you, and give lovin' care !!!
I am here to help as others here have helped me so
very much !! My e-mail is burntbruce@hotmail.com
so if you need to talk,i am here for you !!
Take Care of yourself, and know i am here if you
ever need support,or just some lovin' care !

your Old Hippy/Deadhead Pfriend and
Pfamily,

Bruce "BurntBruce"

Love ya Bro..!!!

Bruce,
>My 2001 blood tests showed that I had a Genotype of 2b, which I am still unsure if that is good or
bad,<

Bad is you have this disease.
Good is that you have genotype 2b. You can look forward to 24 weeks of tx, not 48. SVR rates(sustained viral response) of almost 80% on these "new" pegylated/riba treatments.

Welcome JF, lots of good info to be found around here from these good pholks.

Sounds like you have a legal case. You might want to talk to a lawyer. Anyway stay calm. It's a very slow moving disease. Just follow along on the threads and read about treatment from people who experience it. Then of course find a good Liver specialiast and go over everything you read here with him/her. Your in this for the long haul, and anger or resentment won't get you anywhere

Good Morning JF-
You foud a good place to hang while learning about this virus. Lotsa good people with tons of information and first- hand experience.
Take it easy, there's a lot to learn, but you have time to decide the best course for you.
Not everybody starts Tx immediately, but good habits go a long way toward keeping the best health possible.
Pull up a chair- you are gonna find that many of us manage to live a pretty good life DURING Tx.
Come back often, and keep us informed.

Hello, JF, and welcome.

Let me say two things, first, don't panic. This dragon can and will be beat. Second, seven out of ten with the virus never require treatment. The determining factor is liver scarring, which you must have a biopsy to identify.

Find a good Gastroenterologist, and get his/her opinion. I don't know Cali all that well, but I bet one of us is from around there, and can give a recommendation.

Good luck,

Jim

Welcome JF....

You've fortunately found the right place to be, and since I for one don't believe in coincidences.....your here for a reason!! Glad to have you, although of course not happy as to why your here.

One thing you'll find amongst the pholks here...... nobody really gives a rat's ass how anyone got here, or for whatever reason they contacted the disease, ( except in your case you could have a possible lawsuit I suppose). Anyway....the main focus isn't on the past, but what we are all doing NOW, and where we are headed. That presumably is in getting better and ridding ourselves of this insidious disease.
As quite a few of my brothers have stated......the best thing you can do at this point, is to stay calm, stay as positive as possible....and educate yourself in everyway possible on this disease, the cures, and building yourself a plan of action which includes a good Dr. ( a specialist), a good support system ( family, friends, loved ones), and it would be a good idea to stay around these parts.....as this place has helped hundreds of us to cope through what can be a difficult part of your life ahead.

One thing is for sure though my friend; that is that you are not alone!! You can get through this, but how hard it is, and how well you do....is totally dependant upon you. Take courage and be strong.....and WELCOME again...

JF..your in the right place...Glad you found us...This, my friend is the home of the Dragonslayers Guild....the wyrms don't stand a chance...check out this thread ../2105/96016.html"../196630/131215.jpg" alt="dra">

I cant thank you all enough for all the positive feedback I've gotten You have all definately made me feel welcome to this community; the more knowledge the better and as you have all said; obviously especially since of the way i potentially got it I have been phreaking out but this seems like a great family and kind folks to be supportive.. Thankfully I have a girlfriend for 5 years and I would hate to give it to her but from what ive read here and on other sites it seems like the chances of that are pretty unlikely
I live up in Humboldt County California and would for sure look fwd to talking to some other folks from cali or otherwise; who knows maybe weve been hugging those speakers next to each other; I am glad to be here and super glad to have such kind phriends to be so supportive thats the best yet; I can definately understand the helplessness and depression that this brings on I only hope that I can accept it and move on; I will be finding out my genotype this week and would definately appreciate any feedback from you guys
Glad to have found a surragate home here and will be checking in often
hey now together we can survive! bless u all
Jason
www.stophippieprofiling.org

Hey JF...you found a great place...people at this site live in various parts of the country...and this little corner of the internet has brought both a likely..and unlikely group of pholks together in pursuit of a better understanding of this disease and to get first hand knowledge of what treatment is lile. For me, it's a place where your're likely to meet the most sincere and helpful people around...and sometimes goofier that shit....

Turns out..this is not just some anomynous internet chat group..though some pholks do lurk for a while..and don't post for a while..but...but that's ok too...no pressure...no worries...nobodies the keeper of the site..just the spirit of what the site is about and keeping it that way has been the greatest....lots of regulars...a few irregulars...but genuine in either case...

There are alot of ups and downs associated with the idea of having hepc to begin with...and the treatment ride if you choose to go that route...adn you'll hear some honest answers and opinions here without judgement whatsoever....

Hang in there...it's not a death sentence...treatment can be done and there alot of success stories here. There are also a few no so successful stories unfortunatly, but the spirit of living and killing the dragon lives on...ya gotta hope for the best.and keep a positive outlook....that's all you can do. ...just look forward to beating it or managing it. Like Martin said....I think we all went though that also...wondered how, when, where, etc..we got this..once you get over that stage..there's only one way to look......whether it be going the established treatment route or managing the disease otherwise..

All the best..

Tom

whoops..posted twice..can't figger out how to delete the second one....

Good evening Everyone, I thought I would see what
was going on in the zone this Morning !
JF, I hope that you are doing well, and that you
are finding what you need here!
I can't believe that since I had that ultrasound,
that things are going real well !! I am on top of
the world ever since then !!! I have been in a
real positive space, which for me is strange,but
it feels so good !!!
Just thought I would jump in here, and see how
everyone is doing !!!
I was thinking on starting a new thread this morning, but I'm in kinda of a brain fart , so I
will just sit back and wait for a place where I
can jump in and Rock the night !!

The Old Hippy/Deadhead is back !!

Bruce

Hey, JF,

...Thankfully I have a girlfriend for 5 years and I would hate to give it to her but from what ive read here and on other sites it seems like the chances of that are pretty unlikely...

A couple weeks ago I saw a doctor who is supposed to be the HCV specialist for the midwest. He has treated several thousand of us. He told me flat out that the virus cannot be spread through sex, period. So unless you two are into things that would bring your blood into contact with hers, keep on enjoying yourselves. If you go ahead and treat, that is the time to start being extra careful. Ribivarin concentrates in semen, and causes severe birth defects.

Hope this helps...

Jim

JF, this is truly the best place on the net. Lots of warm and caring folks here and lots of experience with treatments and dealing with the disease. Main thing for now is to stop worrying. haven't read all the comments here but I'm sure someone has mentioned the need to get a biopsy and see where you are as far as how much the disease has attacked your liver. I'm one of the not so successful stories so far, but I'm hanging in and am taking part in a drug study even as we speak. Welcome to our small and crazy band and as we used to say in the 12 step rooms, keep coming back.

JF I've been on treatment for 39 weeks Some were good some sucked. If you ever need to talk on the land line e-mail me and we can exchange numbers.That goes for all in philzone land.Peace

Yea Im thinking of moving to the bay area to see a doc i was recommended down there; been scowering the chronicle looking for work; I know this isn't the board for it but I have a lot of computer and customer service experience; also done tech support and managed a video store; now i do my own web design business; does anyone on the board know of any good lines on jobs down in the bay somewehere cuz i dont wanna move without something lined up;
thak you all for your support this is indeeed a phriendly kind place and im glad to have found it
Jason

Well folks i just got my genotype it was 3a my virul load is only 11,000 but I have no clue what significance this genotype ha
any information anyone has would be greatly appreciated
Jason

Jason,

That is REAL GOOD news... You have the Southeast aisian strain... my wife is 3a 150K.. that means 24 weeks tx instead of 48 and a bit better oods at beating this thing down. ....

go to some of the information websites for better info on what it all means.

http://www.hepcadvocacy.org/resources.html

http://www.pegasys.com/default.asp

Southeast Asian strain? Wonder what ever happened to her? Seriously, I miss many People.

Glad you are a 3 and low viral count! I am not sure what is what but the break down goes from the lowest number being harder for the Peg to beat
I am 1b so I am less hard to cure than a 1a The object is to beat the virus no matter what the geno or load is. I wish you all well.
My doctor has had success with 1a and 1b so my
job is to get thru treatment as best as I can
and not alone!

I did 48 and I can sure attest that 24 is much better. Although it worked it was a long hard road.

Jason.. check out this site for more info
http://www.hepcprimer.com/tests/geno-exp.html

Genotype patterns
It is believed that the hepatitis C virus has evolved over a period of several thousand years (see Ed 20, p7). This would explain the current general global patterns of genotypes and subtypes:


1a - mostly found in Nth & Sth America; also common in Australia
1b - mostly found in Europe and Asia.
2a - is the most common genotype 2 in Japan and China.
2b - is the most common genotype 2 in the US and Nthn Europe.
2c - the most common genotype 2 in Wstn and Sthn Europe.
3a - highly prevalent here in Australia (40% of cases) and Sth Asia.
4a - highly prevalent in Egypt
4c - highly prevalent in Central Africa
5a - highly prevalent only in Sth Africa
6a - restricted to Hong Kong, Macau and Vietnam
7a and 7b - common in Thailand
8a, 8b & 9a - prevalent in Vietnam
10a & 11a - found in Indonesia

It’s believed that of the estimated 160,000 Australians with HCV, approx. 35% have subtype ‘1a’, 15% have ‘1b’, 7% have ‘2’, 35% have ‘3’ (mostly being 3a). The remaining people would have other genotypes.

Genotype and treatment
Current scientific belief is that factors such as duration of a person’s HCV infection, their HCV viral load, age, grade of liver inflammation or stage of fibrosis may play an important role in determining response to interferon treatment. Recent studies have suggested that a person’s HCV subtype (or subtypes) may influence their possible response to interferon, or interferon-ribavirin combination treatment. World-wide trials are being conducted which will soon shed more light on this belief. We’ll publish any reports as they come to hand.

Info taken from Genotypes and Genetic Variation of Hepatitis C Virus by G. Maerterns & L. Stuyver, reviewed by Dr Greg Dore of the National Centre in HIV Epidemiology & Clinical Research.
From The Hep C Review; Ed 23, December 1998; Paul Harvey

thanks everyone for your insights; gotta do some research aboutr the treatment effectiveness of 3a
anyone live in bay area btw
Jason

Jason-
I live a coupla hours East of the Bay, at least for the short-term.
Feel free to e-mail me, or I'll shoot one to you later on today or this evening.
Walt

> gotta do some research about the treatment effectiveness of 3a <

If correct, I believe the success rate for SVR for geno 3a using the Pegasys/Copagus is 80%.....perhaps higher in your case. I believe your rates higher considering you are not chronic hep, but acute hepatitis.



3:45am in Humboldtskunkland...isn't it?
Good to see there are some other nightowls besides me this morning.

New Hempsha Nightowl

Good Morning David!
Welcome home...
Insomnia kicked in a little this morning.
Cool and clear, with lotsa stars.

GDmorning to you too, Walt!
Good to "catch" you around these parts.
A little insomnia here too.
Just past dawn, cold and blustry gray sky day.

Mornin all who are still up!
Dan, interesting post. I wonder how I got European/Asian variety (1b).
Dave, did you catch my post as to February?
5:20 AM here on left coast. Insomnia here too. gotta start gettin to bed earlier.
My favorite TV station these days is the blues music channel. I've always been into music, but it seams like lately I apreciate it more. Nuthin like the blues to chase away the deamon dragon. And no comercials. I've killed a lot of threads lately, see what happens here.
PEACE, Mark

>I wonder how I got European/Asian variety (1b)<

The prevalence of individual genotypes varies by geographic region, with genotype 1 showing a worldwide distribution. Other HCV isolates are region specific.

Somewhere I read(?)they think that HCV was widely spread during WWII field blood transfusions.

Mark,
Yes, did see. Somethang ain't right. Gimme a call.

I am there with you with 1b...I too wonder the hows. Armed Services are still large link to this disease. My uncle got it in earl 50's Navy...Barbershop. He was confined to Hospital in Rhode Island, almost died. But he lived and enjoyed his life until four years ago. They did not have this medicine and yet he beat it! So why didn't they just improve on the medicines of the 50's and 60's instead of the 35 page print out I have from Pegassys telling us to beware...
ah the government. Hepatitus is blood related but unclean conditions...Not sterlizing etc. I am so amazed that I got it since the last 4 years I have been with doctors, hospitals...Don't figure.

JF,
It was nice talking to you on tne messenger this
morning ! I hope that you are doing well and you
had a good night !!!
well bro , I am happy to see that you are getting
the info you need, and yes do some more research
for yourself and get a good handle on this before
the Old Dragon gets too strong !! I want to thank
you for getting on the my messenger, its nice to
be able to have he instant postings and reply
system instead of waiting for replies !! when we
get back on the messager, I will give you my phone
number so you can call !! take care and I hope we
can chat again !!!

your bro and the Old Hippy/Deadhead,

Bruce

Hang in there WElcome Rob