Hepatitis C: Ongoing information on my disease.

posted 2000-Apr-6
— updated 2006-Mar-30
— sub-pages updated 2006-Mar-30

In late 1993, while a sophomore at Duke University, I went to a blood drive to donate blood. I was at the end of having a cold at the time but I ignored that (and lied to the nurse asking if I was feeling fine) because I really liked giving blood.

A month or so later I received a letter from the Red Cross saying that my blood showed that I had Hepatitis C, and that I could no longer donate blood. I figured that my cold had messed up some test and, because I didn't know what Hepatitis was (and my brief net.research failed to turn up any bad effects of Hepatitis) I decided to ignore it.

Some months later I was at the doctor's office with my mother and in response to some question I mentioned the letter. Quite a lot of activity ensued, me thinking that my mother was over-reacting and at the same time realizing I probably shouldn't have ignored the letter. Blood tests were ordered and confirmed that I indeed was infected with the Hepatitis C virus.

We don't know how or when I contracted the disease, but our best guess is that it was from a series of blood transfusions I had as an infant in 1973 (long before they had a test for the virus). Having recently been convinced (more information in the background section) that I should attempt the treatment to eradicate the virus, this hepatitis site exists both to keep friends and family updated as I make journal entries, and as a resource for others infected by this virus. Please use the navigation links at left (or at the bottom of the page) to choose a section to visit.

If you have hepatitis and would like to send me email, please don't hesitate to contact me.

kim robinson
11:02AM ET
2001-Nov-17
Hi,
I'm doing peg-intron with ribivirin,I'm totally having some mood swings.Do you have any ideas that may help.If so please write me back.I hate this treatment.I have 4 and a half months left.My cpc levels are not good and my white blood count is really low.Needless to say,I have no energy.Please write back.Thanks,Kim
Gavin Kistner
12:17PM ET
2001-Nov-17
Hey, so with 4 and a half months down, does that mean you've done 7 and a half months, or are they now recommending 6 months total? If you're past the halfway point, does that mean that you've had a viral load test at 6 months and it was found to be working? Are congratulations in order on that front?

To answer your question, I personally had mood swings too. A lot of it was alternating waves of strong, purposeful optimism which would degenerate into frustration and depression about my current state. As I noted in Entry 13, I was taking St. John's Wort for a long while, not really certain if it was helping. And then I stopped taking it, and I realized how much it *was* helping. It kept me in a much better mood in general, without feeling drugged or anything. It simply helped me feel calm. (The only thing negative I've heard about taking it is that for women it can decrease the effectiveness of The Pill.)

One other thing I'd suggest, if you're not already, is to exercise to keep yourself feeling good. It's horrific (or at least was for me) to try and get up and move, let alone do some walk or exercise, but as much as I hated to admit it each time my fiancee tried to cajole me into taking even a short walk down the street, I did really feel much better after each one (no matter how I was feeling going into it). Of course, even armed with that knowledge during the treatment (as advised by others, and then experiencing it myself) I didn't exercise as much as I should have. The very tiredness and depression which the exercise helps fight kept convincing me that I wasn't up for doing it.

I'd love to give you some sage words of advice which make it all better, but (having been there, albeit only for 6 months) I know that it just sucks. I was fortunate enough to have my now-wife, then-fiancee to take care of me, a company that was very understanding (I was much harder on myself, feeling guilty about not working, than they were) and an income which allowed me the lattitude to do what I needed in order to feel as optimal as possible. The only thing I can really suggest for the long haul is to hang tough, and look forward to the future. In the long-term, having the disease kept at bay will be so nice, to not have it nagging you (or not as much). And for the short term, as I experienced when I stopped the treatment, you are in for an AMAZING time when the treatment ends. Life is going to be the most precious gift you can imagine. It's like suggesting "keep hitting yourself in the head with the baseball bat, because it will feel SOOOO good when you stop", but hey...since you've gotta hit yourself in the head anyway... :)

Best of luck to you!
Chris
08:22PM ET
2001-Nov-24
Gavin: I found your writings, of all the ones I have read up to this point, to be the ones I remembered most. They were so real, and took me through step by step. I am now on my 23d week of peg-intron with ribaviron. I have had a lot of other blows during this time--an impending divorce, for one--butI have kept going! Thanks for helping to inspire me!!
Anonymous
03:05PM ET
2002-Jan-12
I just had my 10th shot of peg-intron and, of course, am taking ribavirin. As an active mountain climber I am frustrated because I feel too winded to maintain my usual level of activity. I appreciate reminders on this web page to concentrate on the future and to exercise even when I don't feel like it. It's all true!

I have found that unless I drink MORE than 4 quarts of water a day, esp. the first couple days after my shot, I feel horrible.

I'm working just three days a week right now. The weather's not too good so I'm not missing being out too terribly much yet, but it's hard when my husband goes out with our friends and I can't go along. Most people don't know I have hep c and am under treatment; we just say I have a cold or something else to do.

Yep! Look to the future, and try to build upon something else while this lasts. I was beginning to feel sorry for myself. Ugh. Thanks for listening. p.s. Does anyone know if red counts ever go back UP during treatment?
ALLISON
09:14PM ET
2002-Jan-31
WELL...I JUST FOUND OUT THAT I HAVE HEP-C AND AM VERY SCARED.I AM VERY BUSY WORKING 60 HOURS A WEEK AS A MANAGER OF A CAR DEALERSHIP AND AM AFRAID THAT WHEN I BEGIN TREATMENT I WON'T BE ABLE TO WORK.SOMEONE PLEASE TELL ME THAT I'LL BE ABLE TO MAINTAIN MY LIFE, MY HUSBAND IS IN THE MILITARY AND IS GONE AND I HAVE TWO KIDS AND A LIFE TO LEAD..WAH WAH WAH.O.K. NOW THAT I GOT MY SOB STORY OUT OF THE WAY,I FELL MUCH BETTER.HAVE A GOOD WKEND TO ALL!
RAVENWOLF
01:48PM ET
2002-May-02
I'VE BEEN ON THE COMBO SINCE DEC OF 2OO1 AND IT IS HORRIBLE FOR ME AND FAMILY/ FRIENDS WHO ARE ALSO AFFECTED. IT IS SCARY TO KNOW THAT THESE DRUGS CAN DO SERIOUS PERMANENT DAMAGE EVEN THOUGH IMAY BE ONE OF THE FORTUNATE WHERE THE HCV BECOMES UN DETECTABLE BUT REMEMBER THE TEST IS NOT SENSITIVE ENOUGH. PRAYERS WERE ANSWERED WHEN A HEALER THAT WE'VE BEEN LOOKING FOR 2 YEARS CONTACTED US RECENTLY. NATIVE AMERICAN AS THIS IS PART OF MY HERITAGE AND WHERE I FEEL VERY CONNECTED. THERE IS NO GUARANTEE BUT I FEEL GOOD ABOUT THIS PERSON. NOT FAKE OR " SHAKE AND BAKE SHAMAN ". I FEEL BLESSED REGARDLESS OF THE OUTCOME BECAUSE OF WHAT I'M LEARNING AND BECOMING FROM THIS AND WHAT MORE WILL BE WHEN I GO TO GET DOCTORED - AND FROM THIS DISEASE THAT HAS LED ME TO AMUCH DEEPER PLACE AND POSITIVE CHANGES. I PRAY FOR YOU ALL AND FOR ALL. DISEASE IS DIS-EASE LOVE TO YOU. RAVENWOLF
Nancy G.
04:30PM ET
2002-May-19
I am a RN who has been positive with Hep C for 10 years with no problems. I have decided to try the Peg-Intron this summer. No one I work with or in my family knows of this. Is treatment ALL THAT AWFUL that I read about. Anyone on it PLEASE respond!!! Thanx!!
Nancy G.
04:30PM ET
2002-May-19
I am a RN who has been positive with Hep C for 10 years with no problems. I have decided to try the Peg-Intron this summer. No one I work with or in my family knows of this. Is treatment ALL THAT AWFUL that I read about. Anyone on it PLEASE respond!!! Thanx!!
Nancy G.
04:30PM ET
2002-May-19
I am a RN who has been positive with Hep C for 10 years with no problems. I have decided to try the Peg-Intron this summer. No one I work with or in my family knows of this. Is treatment ALL THAT AWFUL that I read about. Anyone on it PLEASE respond!!! Thanx!!
Lisa Thompson
11:45PM ET
2002-Jul-15
This is the most helpful "real experience" site I have come across. I would like advice. I have a friend doing peg-intron with rebetol. She's in her 4th month and is not doing well at all. Her side effects are getting worse rather than better. She has flu-like symptoms that escalate to burning pain in her joints, significant depression that hasn't let up, bronchitis that won't go away (she's been on antibiotics for 30 days), and she seems to be sleeping most of the time. Her blood count is very low and she's having it checked weekly. She's also borderline anemic now. Beyond taking iron, St. John's Wort, and multi-vitamins - does anyone have additional suggestions to get her through this? Before she started treatment, she had more energy than anyone else I knew and was very strong. Now she can't work (her job involved physical labor)and is only out of bed for an hour or two at a time. She doesn't have the internet, but I am hoping that someone out there can give her advice (I'll pass it on) for any herbal suppliments or recommended reading. Her doctor is monitoring and she has been informed that she may be pulled off treatment due to her blood count getting dangerously low and her borderline anemia.
Keri Taggart
02:35PM ET
2002-Jul-17
Please someone help, My boyfriend has just started his 6 month of the combo, his depression started about 2 months, now have gone into rages about once a week, he has destoyed his personal things etc. I know the man he was before this, he is on Celexa 40mg a day, but its not helping. He is considering getting off the combo. So far his blood test show that the Virus is not in his blood anymore (for now), but doesnt mean it will come back (this is what he told me when he went to the doctor) I adore him, and will continue to stand by him, but can someone please help with maybe a Rx he can take to stop the rages. He was an avid runner, about 10 miles a day, now cant hardly run one mile. Thanks so much.
Nora Emerson
02:18PM ET
2002-Aug-16
I am 50 years old and found out I had Hep C back in 1996. I tried the interferon treatment three times a week back then and did not respond plus had severe weight loss. I started back on this new 12 month treatment of peg-intron and ribavirin on July 26. Today is my fourth injection. I am definetely having side effects, the cough, fatigue, flu-like symtoms, loss of appetite, etc. I am determined to follow this through and hopefully be rid of this virus. Does it get better as time goes on? I can use all the encouragement and advice on how to deal with this depression.
VW
12:19AM ET
2003-Jul-14


I have a friend with Hepatitis C. I am a retired RN. I was searching on the Internet,
and found information on Colloidal Silver and Hep. C. I ordered the Robey Unit to
make Colloidal Silver. I gave the Colloidal Silver to my friend. Her first dose was
June of 2002. By September 2002 her blood tests came back Hepatitis C Non Detectable. We were so happy about this. Her doctor could hardly believe it, and
circled the "Non Detectable" in red...My friend still has the Hep. C. markers, but
now the virus is Non Detectable. You may want to put Colloidal Silver in your "finder" and read some of the testimonials regarding Hep. C. Click on this "link" and download the information about Colloidal Silver. I think you will be facinated. Testimonials from Robey--Internet
address: http://robeysilver.com/Testimonials.htm
Be sure and check with your own doctor before trying this,
just to be sure it is OK for you to try it.


Best Wishes,
Retired RN
Gavin Kistner
01:22PM ET
2003-Oct-31
I personally don't find the Colloidal Silver information convincing, considering some of the sites out there which are very much against it.

A different, somehwat promising-looking treatment is Zadaxin. I haven't tried it, nor do I endorse it, but I have spoken to someone who had amazing success with it, after failing to respond to Rebetron.
Andrew Mattock
06:40PM ET
2004-Feb-01
I came across this site a few minutes ago whilst looking at something totally unrelated and am both interested and troubled by the experiences of those with hep c. I was diagnosed as having been exposed to Hep C in 1997. There was talk of treatment with interferon and even liver transplantation. A subsequent liver biopsy (there was no sensitive test in 1997 - not in the UK anyway) indicated that I was totally clear of the virus because a percentage of individuals had this 'anti Hep C' response. My mild relief upon being told this was tempered last April (2003) when I was hospitalised for liver failure because, apparently, alcohol use had exacerbated liver damage caused by Hep C and resulted in cirrhosis. I've still had no feedback as to whether or not the virus has 'resurrected' itself but think this may well be so when reading some of the above experiences. I've never heard of some of the above referred to treatment, but if it can result in negative tests, without having eradicated the virus and when today's tests are so much more sensitive, then that puts me back to square one. The one positive thing I can add to other sufferers who're suffering side effects from treatment, is that if it prevents the usually inevitable progression to cirrhosis then it's preferable anyday. The symptomsI,ve just been reading are something I can relate to readily - and then some. If the treatment works, and it sounds like it does, then it's worth the 'hassle' if it preents what's waiting further down the line if you don't take the medicine. I don't have a choice - you do.
Ronald Schlamp
04:10PM ET
2004-Mar-14
I founf out I had hep c in 1996 and 2 years ago I was treated with Rebetron ( interferon/ribavirin ) unsuccessfully. I am over 50 and have genotype 1 so my chances are not the best for beating it, although I do not know my viral load. My doc didn't find it necessary to know that in order to treat me so he decided to save the medical some money. I think I will ask for this test though as I would like to know my chances of success at treatment. I have read that viral load is one of the factors that can determine resonse. I am trying that colloidal silver treatment while I wait to get onto the pegylated interferon/ribavirin or the maintenance dose of interferon, so I will let you know if it has any effect on my enzyme levels. I like to stay p[ositive until something is absolutely proven not to work for me. What have I got to lose?
Anonymous
04:34AM ET
2004-Jul-24
My father has hep c and i was wondering if anyone knows if it is safe for him to take st john wart for depression and mood swings he also suffers from altimers which i have heard also adds moodiness thanks jean
Gavin Kistner
01:37PM ET
2004-Jul-24
I'm not a doctor, but I asked my doctor explicitly about St. John's Wort and was told that it would be fine for me to take it if I felt it was a good idea.
Anonymous
03:55AM ET
2004-Sep-27
I have been on treatment for 13 weekes, and hate it. I have no energy and sleep all the time, and have all kinds of sideeffects. Now I am getting dizy, I almost hpe it does not work so I can stop it.
Andrew Mattock
04:12PM ET
2004-Oct-02
Regarding the use of St. John's Wort, it would seem that it should be used with caution as it has been implicated in various cases of liver damage -as to how statistically significant this is I don't know as I'm unaware of the ratio of users to those who've suffered liver damage.
I would like to see more input into this sight but am well aware of the apathy and lack of physical energy liver disease can cause.
Dawn
06:26PM ET
2004-Oct-19
Doctor wants me to do treatment. I have had HCV symptoms for 14 years and probably contracted Hep when I was 17 years old and doing iv drugs. I stopped drinking 18 years ago so my liver (and me) are in pretty good shape. I do have a lot of joint and muscular symptoms with my Hep C and feel 100 years old some days instead of 52. I am on permanent disability because of my Hep C and could remain on it as my husband works, but feel like I'm being held hostage by my illness! I have recently been told about a drug in phase III trials called Zadaxin that is heping people with genotype 1 clear at a 70% rate over the now aprox. 50%. This drug has been approved for use in Canada and Mexico and a other places. I'm not sure when the FDA will approve it for use here, but it sounds like it's really working well with no added side effects! Should I wait to be treated until this drug is approved? I have been told that some insurance companies won't treat you when you get "older". What is "older"? I would think we would have access to zadaxin in another two years or so, does anyone have any comment about me being treated now or not, or know about this new drug? Thanks, Dawn
Karyl
07:35PM ET
2004-Oct-20
My daughter received her viril load numbers today, 800,000. I am searching for ways to bring it down without the treatment usually undertaken. Has anyone had results from colloidal silver or Dr. Beck's Zapper? Thank you.
Karyl
07:37PM ET
2004-Oct-20
My daughter received her viral load numbers today, 800,000. I am searching for ways to bring it down without the treatment usually undertaken. Has anyone had results from colloidal silver or Dr. Beck's Zapper? Thank you.
Gail
09:55AM ET
2004-Oct-28
Last December my viral load came back at 3,740,000 I tried the colloidal silver and now in October 2004 my viral load is 8,0010,000 so for me that did not work. I still do NOT want to do the interferon as it CAUSES liver cirrhosis. I am on a regimen and have been since 1995 of milk thistle, dandelion, b vitamins, high doses of vitamin c, potassium. My liver enzymes come back normal however the Hep C has caused my thyroid to not function properly and I have rheumatoid arthritis. I still work over 9 hours a day as a mail carrier (that means a lot of walking) plus come home cook and clean and care for a 1 year old grandchild. Somedays I am more tired than usual. I am going to try cutting out meat, sugars, fried foods. I am going to add the Maitake and Shitake mushrooms to my herbals as well as the Raspberry flour and drink fresh carrot juice daily and will see as to whether this brings my viral count down.
Dave
11:01AM ET
2004-Dec-15
I was diagnosed with Hep C right after the WTC attack when I went to give blood for the survivor effort. In August of 2003 my viral load was 2,580,000. I started taking colloidal silver that I purchased online from Utopia Silver of Utopia Texas. I started taking this product in June or July of 2004, three teaspoons a day of 20 p/m of the advanced colloidal silver. I have been quite religous about taking it, and when I had my most recent viral load test on 11/16/04 my viral load was down to 910,000. Hey, that's almost a two thirds reduction. My doctor was so surprised that she said to keep it up and see what happens in June of 05 when I go back. I am not making a plug for Utopia but something has brought my viral load down and the Utopia Silver is the only action I have taken, as I refuse to take the Peg-Tnterferon treatment. It might be well worth looking into. Any and all questions are welcome. I will answer any and all as honestly as I can
Anonymous
01:06AM ET
2005-Feb-04
I had hcv diagnosed in 96. I am geno-type one with a high viral load. My biopsy showed my liver was at stage four, and I had been told by doctors that there was no point in my going through the treatments. I insisted and went through the treatments in 03 and have been viral load undetectable since the fifteenth week now 05 I can feel my energy levels returning and have been asymptomatic for the HCV since late 04. My liver is healing and I have even enjoyed a beer or three without abdominal pain. I'm not going to kid you the 48 week treatment was hell on earth for me. I had pain in my joints that even the oxycontin I took for my hema-arthrosis coulden't touch. The burning in my chest and face would get unbareable, but it was worth it to feel this helthy again. just keep that in mind when you feel like giving up on it. Also I learned through trial and error that some of the painfull burning in my chest, face, and joints were reactive to simple things such as the foods I ate. Half way through the treatments when the ribraviron started to reach its peak concentrations smoaking a cigarette would make me violently ill. Even the oxy would increase the burning in my chest. So keep in mind if you take something trying to find a quick fix for your symptoms. You may make them worse. Same with foods If you feel your symptoms are worse today than yesterday, they may be. I wish I could tell you of something that makes it all better but I can't. By the time I had finished the only things I could tolerate were milk and air. And I had to force myself to drink the milk. I'll do it again one day if I have to. Keep the faith, the lord heals those who heal themselves. doctors don't know everything don't let them stop you!
Catsgoing
07:53PM ET
2005-Feb-05
Hello, I surfed on to this site. I have had Hep C for almost 35 years. A stupid teen with my boyfriend I am sure you know the rest.
I have been on treatment 3 times and failed them all. 1994 1999 2003 It is tough. Now I am alone divorced after 29 years of marriage and live alone with my two dogs Venice, Florida. My liver is pretty sick now. My biggest problem has always been fatigue. I keep on doing but my blood work is showing I am stressing out my body. I am not ready to sit in an easy chair kniting. I love to hike travel kayak and do all this with my dogs. My stomach is growing and my body is the same I won't go to places that people know me they think I am pregnant. I Wish Ever Hepper The Best In What Ever Way You Want To Fight This Virus. I Also Believe In Doing Nothing. The Biggest Thing That Bothers Me Is Us With Hepatitis C Are To D---M QUIET WE NEED TO MAKE NOISE WEAR OUR COLORS THAT IS BROWN AND YELLOW RIBBIONS AND GET AWARENESS OUT THERE SO THE GOVERMENT WILL DO MORE FOR US! PEOPLE WITH HIV / AIDES HAVE MORE STIGMA THAN WE DO AND THEY GOT OUT THERE AND RAISED H--LL. PLEASE THE WALK ON WASHINGTON ISN'T ENOUGH EVERY STATE NEEDS TO RALLY EVERY CITY NEEDS TO HAVE POSTERS PRINTED WE ARE THE BABY BOOMERS OUR CHILDREN OUR THE NEXT GENERATION>>> I WANT TO SEE MY GRANDSON RUN TO BE PRESIDENT OF THE USA>>>>>>>> HELP ME HELP US......... Cathy Venice Florida Ccatsgoing@msn.com
Tom
05:44PM ET
2005-Feb-28
Just started treatment for the 3rd time and have taken 3 shots so far and have experienced many side effects. I am nauseated, tired all the time, dizzy and have headaches. I was wondering if anyone out there has had any sucess with weakness and nausea getting better with time.
Anonymous
11:08PM ET
2005-Jun-25
I just found out on Wdnesday that I have Hep C. I had a blood transfusion in Dec. 2004, and I think that's where it came from. I haven't been in any other situations to have contracted it. My appt with a specialist isn't for another month.....I'll go nuts in the meantime. I have so many questions- yet I don't know what they are!! I'm 31 with a husband and 5 children, I don't want to leave my babies early! I'm scared. No liver damage as of yet. What can I expect next? I haven't felt good since my hysterectomy in Dec., even had jaundice symptoms a week after getting the blood (yellow eyes and skin). Can I sue someone!?!?!?!?!?
Gloria
10:52PM ET
2005-Jul-09
I found out I have Hep C by chance. I watched Discovery Health and they recommended to have a blood test for hep c for tranfusers before 1986. I went to my GP, she assured me that based on my previous test in Jan, Feb and March and I should be fine, besides I looked good. To our horror I came back positive. I had my two daughters post blood transfusion, tested immediately, they were negative. Then I learned that my husband had 4 family members with Hep C. These people lived to use my things especially cuticile scissors. I have been on Ribavirin and Pegasus since September of 2004 and didi exoerience nausea, headaches and sleeping. After three months with a viral load of 88.300, 0 - 1% liver damage I am now virus free for the past 10 months and have only 2 months left on my treatment, thanks to our Lord Jesus Christ. I sleep almost all day, but count down has begun for me for no more treatment. THe injections are killing me. As for Null, sue, you could have contracted Hep C in the operation table, my own doctor told me this.
Cindy
09:48AM ET
2005-Jul-10
My husband was diagnosed with Hep C last Oct 2004 after we had been married for just 4 months. He started interferon and Ribaviron treatment in Dec, just finished last week with a zero viral load. The treatment was hell, and although my husband was given antidepressants, Zanaz for anxiety, and sleeping pills for insommnia it has been a very trying time for our marriage. My husband doesn't even admit to having a personality change-- anger, rages, mood swings, depression. We are at the point now of separating. I am very happy that the treatment worked for my husband but I wish we had arranged for some counseling or gone to a support group before starting treatment. Now I feel it is too late because my husband can't even see that he has a problem and he's determined to alienate evey person in his life who cares about him.
Lisa (wife of Phrogz)
11:45AM ET
2005-Jul-10
Null, I believe they started screening blood for HepC in 1992, which is why so many people have found out they have the virus. So, I think the likelyhood of you contracting it from a 2004 transfusion is slim. When I first tested for it, being the partner of someone who has it, the doctor threw out that the there is a higher percentage that I have it just being in the US population than getting it from my husband. Meaning--there are a bunch of ways you could have contracted it earlier. Don't go nuts yet. Phrogz has been able to lead a pretty normal life since diagnosis, and there has not been much damage to his liver. This varies from patient to patient, but please, it is not a death sentence. You just have to be vigilant and do your blood tests and biopsies to see how the virus is living in your body. You might need to do the treatment, which is a real pain, but just make sure you bug your doctor to be active in making the side effects less of a pain. We have not gotten rid of it yet, but have hope that there will be a better, more effective treatment for us all in the future. If you did indeed contract it recently, you might want to do the treatment soon. Not a doctor here, but the doctor did tell me to test yearly, because if I did contract it, the treatment might be more useful early on. Good luck and good health!
Lisa (wife of Phrogz)
12:03PM ET
2005-Jul-10
Cindy, it is difficult to be the partner of someone going through the treatment. It will certainly test your resolve. You have to be very sympathetic, but not let him overstep his bounds. It is easy for the person going through the treatment to be self-pitying (as anyone going through hard times can be). Your role as supporter is to allow for some pitying but keep your eye on what is good for you, him, and the relationship. A couple of lights at the end of the tunnel: 1) I was talking to a friend who has a husband with a different, though potentially fatal, illness the other day. We were commenting on how after going through such a thing, the rest of marriage seems pretty simple. We don't get really worked up about the small stuff. 2) We are now expecting our first child. People keep asking me if my husband understands my morning sickness and fatigue. Well, he has felt all of that first hand! The treatment prepared him to be the most empathetic husband. And he does what I did: the other day, when I was so exhausted, he made me take a walk for my own good--reminding me that I made him do some exercise during the treatment to lift his spirits and get him out of the house!
I guess what goes around comes around. Sounds like you need to both go to some counseling to sort things out. You want him to recognize that he was a jerk (yeah, my darling husband was as well at times). You also want to recognize that you are understandably bitter about the experience, and need to not hold it against him. The supporter in the relationship is the side that gets little sympathy during the treatment. Family members always inquire about the sickie and not about how you are holding the world together while they nap and wallow. There is guilt if you feel angry toward your partner because they *are* sick. However, I think you just have to let go and be able to forgive yourself and your partner--don't judge too harshly. When you go through hell, be happy that you got through it, and don't focus too much on what you saw when you were there.
Kaye
04:11AM ET
2005-Jul-11
Lisa, what you said, just inspired me, my bf is going to start his treatment tomorrow, and the fact is I love him, and i want to marry this man, and HVC SCARES THE HELL OUT OF ME! Hopefully he will respond, and hopefully I will be able to support him like you've supported your husband.
Teresa......
04:20PM ET
2005-Aug-11
I fimd the pain really hard to deal with
Crystal
07:07PM ET
2005-Aug-15
WELL MY STEPMOTHER HAS HCV AND WAS TAKING THE TREATMENT SHE IS DONE NOW AND IT IS UN-DETECTABLE BUT BELIEVE ME SHE HAD ALL THEY SYMPTOMS AND MOOD SWINGS LIKE CRAZY. SO IT MAY BE NORMAL. I AM NOT A DOCTOR SO I CAN'T TELL YOU IT IS BUT SHE HAD NO PROBLEMS AFTERWARDS. I AM DEALING WITH A PROBLEM IN MY HOUSEHOLD WHERE ON OF MY FAMILY- INLAW MAY HAVE THE VIRUS AND I MAY ALSO ALL I CAN SAY IS IF I DO I WILL DO EVERYTHING I AM SUPPOSED TO AND PRAY TO GOD IT DOES NOT GET WORSE. GOOD LUCK TO THE REST OF YOU I WISH YOU ALL THE VERY BEST IF YOU WOULD LIKE TO TALK ABOUT IT PLEASE E-MAIL ME I WOULD BE MORE THEN HAPPY TO TALK ABOUT IT. FOR SOME MORAL SUPPORT JUST E-MAIL ME kovu_dog@yahoo.com
DragonClone
01:37PM ET
2005-Aug-28
Please STOP SHOUTING and find the CAPS LOCK key. Or is this an effect of therapy? :)

I have had HepC for an estimated 30+ years and all that time I was drinking white rum at 80 proof! I began my first interferon shots in around 2000. The one year treatment worked, didn't bother me much. However, the disease came back during the next year. We then tried a second year of treatment with Rebetol but that was stopped after a few months since it wasn't working.

I am now on Pegasys + Rebetol + Mantadix and the side effects are worse, but the virus has been reduced to undetectable levels after about 6 months.

Depression, out of breath, horrible itching, sleep disorder and reduced libido are a few of the "perks". Funny, I didn't have most of these the last two times.

The worst thing I find (I'm nearing 60) is that every new symptom you wonder if it's a disease, a condition or an effect of these awful drugs.
Anon1947
01:42PM ET
2005-Aug-28
Cindy, Kaye

My doctor recently told my wife "Unfortunately, it's your disease too." She well knows i and has put up with all the trauma you mention plus her own wories.
Kyle
09:54PM ET
2005-Oct-10
Hey everyone, just writing I guess to maybe hear some feedback. The insomnia factor with interferon and ribivarin is killing me. I have tried many sleeping pills. Immovane, Resterol, Starnoc, anyone know of any other good medication used for helping people hith hep c sleeep?????
kps8888@hotmail.com
Onda
01:49PM ET
2005-Nov-12
Hello, I discovered that I have HCV when I done several tests for pregnancy, last year. It was a shock, and then I started to read and learn about this..I refuse to do Interferon, my liver markers are now normal, but my viral count is 800,000. I started to take colloidal silver, vit. e, some medicines from a russian doctor (made of insects extract-it seems that a lot of people are cured with these), some chinese and even indian herbs...I feel great, maybe a liitle tired (but I work a lot..)
I will let U know about my disease evolution.
I want a little advice from U? nOW I want to have a baby..is anybody who has one and it is everything ok? Write me, plz...I understood that it is a small percent - about 5% for transmitting the virus to the baby.
I'm waiting for your advices! thks, in advance!
Kristin
01:27AM ET
2005-Nov-18
Lisa, wife of Phrogz, Thank you so much for voicing your opinion. My husband was on treatment last year, responded great, then relapsed. He is now going to take part in a study and go back on treatment, only this time it will be oral dosage instead of injectibles. i have been so nervous for him to go back into this hell. I seem to remember so clearly the effects treatment had on our family. We lost him to depression and self absorbsion. I am so scared that the same will happen again. He is adamant that things will be different this time. he says he is going to excercise and eat well, I just needed to put things into perspective and you helped me to do that. I need to stop obsessing about us and start praying for him.
Lisa (the wife)
10:30AM ET
2005-Nov-18
Onda, do you have a GI specialist who can advise you on this? I have also read that the transmission rate from mother to fetus is low. The bigger thing that concerns me about pregnancy and HepC is that the current treatment itself can be damaging to the fetus, even if you have stopped treatment before the baby. When Phrogz was undergoing treatment, we had to double up our contraception protection because the drugs would have a bad effect (I am guessing a genetic effect) on the fetus. We were told to do this for 6 months after the treatment in case of residual effects. So, if you are thinking of conceiving after any treatment, please consult your doctor for the best timeline to start trying. I am now 8 months pregnant with a fine and healthy baby--though this is 3 years or so after my husbands treatment. Also, some of the herbs and medicines that you are taking in order to stabilize your HepC now might not be good for the development of the baby. You should give your drug list to both your GI and your OB/Gyn for some info. I don't mean to scare you--you should be able to have a fine and healthy baby. Just do your homework!
Lisa (the wife)
11:33AM ET
2005-Nov-18
Kristin, It is great that he is geared up for exercise and eating well. Your husband seems to have a positive attitude, which is so helpful! It is a good thing that you have both gone through this before and will know better what to expect. I think that keeping your eye on the ball about the positive outcome this treatment could have is very important. The depression and self-absorbsion go hand in hand. Don't be afraid to push your doctor for any medical ways of treating the symptoms of the treatment. We never tried anything like acupuncture or massage, but I think if/whenever we do this again, we might try that as well. Be strong! You got through it once already! Good luck to you and your family!
John
11:45AM ET
2005-Dec-03
I was diagnosed with hep c about 12 years now and had done nothing about it until a recent physical with blood work turned things around.The doctor had informed me that I only had about three years before liver transplant will be needed or death.They put me on pegasys and the sickness is hell,I take the shot interferon on a friday in my stomach and it leaves silver dollar size bruses on my stomach going back three weeks you can still see them and it bruises down to the muscle ,I have had the chills so severe that I couldnt move and my wife had to feed and hold a glass for me to drink I also take rebetal twice a day and my job is monday thru friday,NULL,mondays are a little rough but I make it thru it {Plumber by trade}as the week goes on you will feel better until the next injection on friday evening,NULL,I have level 3 and am taking .5 mg interferon,I have also found changing the injection sight from stomach to thigh has brought my reaction to the meds down alot so if you are taking it find a place to inject that that has the least amount of side affects,NULL,I have been on this for two months now and havent missed a day of work so those of you getting ready to start it schedule your injections on a day you have a couple of days to recoup from if at all possible,NULL,the milk thistle didnt work for me and I have an iron overload my liver wont release without a phlybotamy I have to give blood so my body can reproduce new cells and im going to telll you it makes me feel pretty good after having one,NULL,vitamin c and iron suppliments you will want to ask your doctor before taking ,NULL,they can do as much harm as good depending on your system and those who beat it and write you can have a few beers now!!!what are you thinking wasnt it enough pain to get rid of it????or dormant}Well I am still going thru the treatments and if any of you would like to e-mail me with any questions please feel free and god bless all of you. uawglv@cox.net
Kent
12:51AM ET
2005-Dec-08
I was diagnosed with hep c four years ago when I was 54 years old. The VA decided I must have been infected with it when I was in Vietnam as I made contact with other peoples blood. I had the three shot interferon weekly with ribavirin and it seemed to work. I had the shots for eleven months,but six months after I finished I had the hep c back again. I then tried the one shot weekly with ribavirin and that brought my viral load down to less than ten. Now six months after I finished that, my viral load is up to 300,000 again. This was the worst four years of my life, physically. I am divorced and live alone, so have had to pretty much do it all by myself. It has been eight months since I finished the second treatment and I am still sick most of the time. I think the effects of the interferon have left me, but I think the hep c is causing all the sickness now. The doctors tell me I shouldn't be feeling so bad but it sure doesn't seem to be getting any better. I don't know what to do next. The Dr. said my liver is still working, although I have grade 4 stage 3 cirrohsis. He told me to come back in a year and see if there is any more new treatment available and will have another liver biopsy at that time.It certainly has not been a fun ride, and I am hoping for a cure, but at this point I just take it day by day. If anyone would like to question me about any of my treatments, feel free to e-mail me at hkwakefd@utma.com
Andrew
10:41PM ET
2005-Dec-14
It's hard not to relate to the partners and sufferers of those with hep C, especially those who have sustained significant liver damage. Some aspects of observed symptoms will undoubtedly be through treatment being administered. Others will be as a direct result of inability of the liver to 'mop up' what amount to neuro toxins and diminishment of the liver's capacity to be the hub of the endocrine system and prevent it from administering a cocktail of chemicals as and when needed by the body every minute of the day. Many doctors neglect to point out the importance of nutrition, especially foods that have negative effects. A surfeit of animal proteins and iron are one of the biggest causes of neurological effects. Vegetable protein is supposedly better (I love meat but alas!). Fat soluble vitamins should be taken in moderation though water soluble vits - the B & C groups are generally OK. For those suffering the cramps, 15mg per day of Zinc Gluconate should take care of those. If you can get your GP/MD to prescribe Lactulose - to prevent reabsorption of of toxins from the gut - then all the better. Please do a little research and put forward your findings to your Doctor before making radical changes to your diet.
Missy
05:23PM ET
2005-Dec-21
Hi, my husband was diagnosed with HCV about a year and a half ago. We don't know exactly how long he has had it but the doctors say about 15 years. He is genotype 1a stage 3 fibrosis. The reason I'm posting this is becouse I have yet to hear a success story for some like him. I was wonder if any of you had? He starts treatments in Feb and I'm really scared. The doc says if it dosen't go away he will most likely develope cirosis within 7 years. We have a three yearold and a one-and-half yearold and I do not want to be a single mom. If someone knows of a circumstance where its worked please let me know so I can feel a little hopeful.
trisha
01:17AM ET
2006-Jan-02
I was told in 1975 I had hep non A non B other then fatigue and low grade fevers I have lived a full life till 1990 then this maylay set in so had a biopsy that came back positive for chronic active hep c. There are 5 out of 11 sibblings that have hep c and one sister who died in 1976,from liver cancer at 19, and this year I lost my dearest brother 53 of end of life liver failure, he was so edema he drownd.He had asked me to get a biopsy on my return home so I did now I wish I hadn't it came back Severe chronic active hep c with cirrhosis grade IV,stage 4,geno type one, my main ? is can I still do interferon ? my dr. refused to offer it in the last ten years of care and when I brought it up he said, no your not a good canidate as you get to sick, is it now too late ? He says it could kill me. maybe its so hard to take all this because my brother just died. It would be so helpful and not so lonly with this deases,as I live in a SMALL Montana town were hep c is the same as HIV so not many folks to talk to that know anything about it thank you. from scared old hipster
trisha
01:27AM ET
2006-Jan-02
I was told in 1975 I had hep non A non B other then fatigue and low grade fevers I have lived a full life till 1990 then this malay set in so had a biopsy that came back positive for chronic active hep c. There are 5 out of 11 sibblings that have hep c and one sister who died in 1976,from liver cancer at 19, and this year I lost my dearest brother 53 of end of life liver failure, he was so edema he drownd.He had asked me to get a biopsy on my return home so I did now I wish I hadn't it came back Severe chronic active hep c with cirrhosis grade IV,stage 4,geno type one, my main ? is, can I still do interferon ? my dr. refused to offer it in the last ten years of care and when I brought it up he said, no your not a good canidate as you get to sick, is it now too late ? He says it could kill me. maybe its so hard to take all this because my brother just died. It would be so helpful and not so lonly with this deases,as I live in a SMALL Montana town were hep c is the same as HIV so not many folks to talk to that know anything about it thank you. from scared ole hipster
Dianne
06:06PM ET
2006-Jan-29
hi, i came across this site quite by accident & I think that I can be of some help. I have cleared the virus (HEP C) for the past 67 years. I do a PCR once a year. So far each year it has come back negative..& of course I am grateful. I did the Interferon (alone) for 3 months & my viral load increased so my dr. stopped the interferon. A few months later Ribavirin was approved & I went back on interferon and Ribiveron. I stayed on it for 48 weeks & went through every side effect you can get. It was a horror. It worked for me so It was worth it. If I can help someone and/or answer questions please feel free to email me privately...
much good luck to all who suffer with this illness.
DIANNE
my email is disaacsd7@aol.com
Hussain
07:49PM ET
2006-Feb-06
Hello,
My husband has chronic hepatitis c, and completed an inteferon plus ribiveron treatment approximately 2.5 years ago. We have a nine-year-old daughter, and are now planning on having a second child. When we had our daughter, we were not aware that my husband had hep c. In fact, we still haven't been able to find out how he got it. Although we desperately want a second child, I am extremely worried about getting infected as well as passing on the virus to the baby. I spoke with my doctor who recommended the ICSI treatment (similar to the IVF treatment), which is basically available through Shady Grove Fertility Center; based on what the doctors have told us, this treatment will minimize my chances of getting infected. Although we are planning on going with the treatment, I'm a little hesitant since our insurance will only cover half of the expenses. Maybe I'm paranoid but after watching my husband go through the side affects of the medication, I just feel like I need to be extra cautious. I would appreciate any comments or suggestions. Thanks!
2 cents might be worth more...
06:39AM ET
2006-Feb-09
Has anyone of you tried reading P. Duesberg (Inventing The AIDS-Virus)? He is a quite famous virologist at Berkely University and there is a chapter in his book on Hepatitis C as well... Who profits from that "disease"... By the way. Kary Mullis (who invented the PCR) walks the same line as Peter.
I won't be back here, so read it or don't - let others decide for you.
2 cents might be worth more...
06:47AM ET
2006-Feb-09
I forgot to say. There is no such thing.
Lisa (wife of Phrogz)
12:14PM ET
2006-Mar-22
Hussain,
This might be a little late, but...
If it gives you any hope, we just had a baby. Neither me nor the baby have the virus. I get tested every 6 mo to a year to ensure that I do not have the virus, because according to my husband's former doctor, if I do get it, treatment might be more effective with the smaller initial level of the virus. Talk to your husband's gastroenterologist about it. I find that the specialists know more about this than your own general practitioner.
Good luck!
Lisa (wife of Phrogz)
12:18PM ET
2006-Mar-22
To the man I spoke to on the phone:
Please make sure that you talk to the gastroenterologist about your own circumstances.
Also, make sure that you get yourself tested regularly, like I do, to be able to begin treatment immeditately if necessary.
Good luck!
Bo
09:22AM ET
2006-Mar-30
Finished the 48 weeks of hell. Six months after the last day of treatment virus is back, though it was undetectable for the whole 48 weeks. It is really not fair. It gives you hope and takes it away. So it looks like it is easier to except it than kill it. So I have no choice. Will have to live with it.
bla
05:15AM ET
2012-Feb-26

Good luck to everyone on treatment. I’ve had hep c for about 12 years now. I found out straight away and got treatment immediately. I was on interferon and ribetron a(cant remember exactly what it was called) for over 1 year. I had barely any side effects. Id just get occasional headaches. At the same time I quit drinking alcohol completely and also started a raw food diet. I was about 20 at the time, so maybe being younger helped. Since then I’ve been to maybe 10 doctors over the years. So far I show only antibodies, but not active virus. From what I’ve heard, this means I cant infect anyone and also that I will not get sick. I hope this is the case. I feel relatively fine and have good energy and am generally really healthy and active. Occasionally I drink alcohol now, but not too often. I would definitely recommend treatment to anyone who has hep c, as it worked for me and I didnt have any problems with it. 5 pills a day and 3 shots a week for over a year…

Jenn
09:51PM ET
2012-Mar-03

I am about to start treatment for hepC and Im a nervous wreck. Dont know how I have gotten it, or how long ago. So now I have to have my children tested. I am praying that I will be one of the few with very little side effects beings I am a single parent. I would like to know will I be able to get up and get my kids ready for school and be able to drive them there? I hear some people take a leave from work, and now Im panicing just a little bit. Can anyone tell me the anwser??

yangyan
06:55AM ET
2012-May-06

Good luck.Are you fine?

Gavin Kistner
09:30AM ET
2012-May-06

@yangyan I’m still alive and using the same liver, thanks! Healthy living (not just no alcohol, but also good exercise) has slowed the progress.

yangyan
10:41AM ET
2012-May-06

@Gavin Kistner Must is alive and well, the world needs you, from China a confused little programmers greetings. D3 is very strong, I learn math is very poor, difficult to use it, and no matter how, I hope you will soon recover completely health (from Google translation service) Tell me the spider and flies have a few feet?

Ryan
11:10AM ET
2012-Jun-11

I’m currently take pegysus-interfeon(sp), ribaviron, and victrelis… I’m also a miserable mess… I used to be pretty well active and loved to go out with friends and enjoy my life.. since the start of the medication I got a leave from work due to the medication.. I dont pick up phone calls or reply text to my friends.. Its just not me and not what I’m about at all.. I have no energy what so ever and every time I do get off the couch or outta bed and do something I’m drained after a very short time.. I dont know if its just me or the medication making me think something else is wrong but it feels like i got tumors in my gut/live area and my heart and brain also feel odd at times.. I’m sure its just the medication putting that crap in my head so I’ll wait till im off it and see if that all clears up.. one of the worst side effects of this medication is hair loss… I got it bad… I mean hep c is basically a treatable cancer.. its a virus that spreads inside your body and interferon is used to treat cancer as well.. I luckily only had 6 months of this treatment and have 1 more month left to go… and everyday is a challenge just to get through but I dont wanna have to ever go through this again so I def. refuse to just stop taking this medication no matter how crappy it makes me feel.. WATER is the key to surviving this medication.. at the start I didnt drink water like I was supposed to nor have I really ever in my whole life.. but I kept getting 102 degree fevers and found out I was merely dehydrated each time.. now I pound water like I used to pound pints.. not really to much helpful info here but I have nobody to talk to because I havent really told anyone I have the virus.. just wanted to get this off my chest.. thanks

child born with tellow joundice
04:02AM ET
2013-Oct-28

I have learned that I have hep c but was born with a dormant cell. I also osteoarthritis and a rupture L-5 and had surgery to a piece remove out of the root nerve of my back I take colloidal silver daily for the past year and don’t have any symptoms but found reshi mushrooms on a Chinese site that kills the virus. I will let people know if it works. I hate to hear all the painful therapy all of you are going through. BLESSED BE

Patricia Olson
01:21AM ET
2014-Mar-16

My father had hepatitis from eating raw clams in 1960 and was hospitalized. I was 6, my brother was 5. My Mother, brother and I, as adults, have high and fatty liver levels. Could hepatitis have been transmitted to us with out our knowledge?

Mr Jeedson
01:43PM ET
2014-Dec-02

i will thank Mrs JEEDSON for letting the world knows the powerful man that help her from AIDS disease. This was what i have all my life been waiting for since i was infected by HIV last 6 months. I always spend money for drugs always but still yet my weight becomes poorer and my joint always getting painful and inching all day. But when i met this comment last 3 days, i quickly contacted Dr.KPELEDE the Traditional helper. He is from the western part of Africa, i didn’t spend much as i spent for drugs each day, and i for the fact truly reason this because my life was already as take by this disease called AIDS. Truly, when it was 9:00 clock on Monday this week he called me that his oracle urgently required some few life items to enable the disease wipe out successfully, then i was asked to send down 200 usd ($). Which i did. He truly bought the items and surprisingly, yesterday afternoon Dr.KPELEDE called me that my work has been finally done and it work out well. I was glad and he told me to rush down to my hospital for checkup. Which i really did, my brothers and sisters i went down crying because no one has ever done this to a person in life. Dr.KPELEDE truly healed me. I was crying it was a dream to my eyes when the doctor said to me that I am HIV NEGATIVE. I am now a free born in life, am now like other people who now think things like human. For these days and forever, i will accept Dr.KPELEDE as my father and my healer and helper. He is a great man. Thank you sir. I know i cant reward you. But my God in heaven can. Thank you sir once again.

Regards.

Email him now for your problem solve at:( kpeledesolutiontemple@gmail.com)or call +2347038111854

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