I am 51 years old and last year discovered I had Hep C, Genotype 1. After the biopsy, we found it was Phase 2. My doctor did put me on the suggested therapy however, I did not do well with it. My weight dropped from 116lb to 92lb. My hemoglobin dropped from 130 to 79. And finaly I lost a fair amount of hair on only one side of my head. This all took place in 7 weeks. I was taken off the therapy and now I am in limbo.
Is there anything I can do or try? It is very difficult to sit and do nothing - it is extremely depressing and I am having a hard time. I am single and when I go home from work, this disease and lack of trying to stop it, continually plagues me.
I saw my doctor last month and his advice was to try not think too much about it and he would see me next year.
I feel like I have no control and my own mind will do me in before the disease ever will.
What do I do?
Self care is very important for anyone with hepatitis C, whether on treatment or not. Improvements in biopsies have been found in those who have lived a pristine lifestyle and this has given hope to many who cannot, or choose not to, treat with interferon therapy. The picture is not doom and gloom by any means and there are options available in the realm of Traditional Chines Medicine as well (type "Misha Cohen" into your GOOGLE browser)
Here are some links to compiled abstracts that you may find interesting about lifestyle and choices:
<a href="http://www.hcop.org/hcvinfo/category/index.cfm?categoryid=5">Articles on Management of Hepatitis C</a>
You certaintly did have a rough go of it and I'm sorry to hear that. Your biopsy of a 2 sounds really good and by not drinking of course, maintaining a good lifestlye, plenty of rest and your dr sounds like he is on top of things by monitoring you yearly! As far as the mind, or needing that peace of mind...I think we all go through that daily with this disease as all of us want it out of our body, and mind! And honestly...I know you have heard so many times before,,,but with you being 52 and being aware of this...you will most likely die of old age first and wouldn't it be terrible to waste years and years of stress due to it. Also within next few years...who knows...there maybe something out there that you will be able to tolerate better. Hope this helps some!
Hi Ziggy, I know exactly how you feel. i treated in 2002 and then relapsed. I had some heart problems after tx and the docs didn't want me to treat. Told me to take a "vacation" from tx and Hep C for at least a year. Frankly, not my idea of a vacation. So it's a year later and I just started on what's known as maintenance tx. Pegasys without any Riba. It's designed to stop viral activity that's causing the damage. They will reduce the dose a little at a time but not to where the liver comes under fire. This is not supposed to be a cure, only a holding action. So far after 2 shots it's a great deal better than the full tx, about half the sides, aches and pains I had with the full monty. Something to consider. At least I feel like I'm doing something!
I wonder if you were on pegasys or pegintron or? pegasys is alot easier on people. the hair thing is not a big issue, as far as life or death is concerned. and couldn't your dr. give you some of the meds everyone here talks about to battle the blood problems with tx? perhaps medical appatite enhancers would work for you. the zanax increases my hunger and so do my sleeping pills. there is also medicle marrijuana that is suppose to do that too. i'm sure there are others that are safer as well....
well either way, be sure to stay on top of the progress of liver deteriorzation. get biopsies every couple years at least and do your blood checks for hepatic function 2 times a year if possible as well as cat scans,ulta sounds...
Thanks Thanbey for the link on the book and I ordered "the hepatitis C help book". Looks like it maybe a good one! For all of those who haven't ordered at Amazon..you can get their used books for a much cheaper price. I usually order mine there and maybe a page or 2 turned down but other then that..great condition.
TnHep...Yikkess...That article is scary! I really didn't realize that it progressed that much! Oh well...guess all we can do here is keep on track and pull out our swords, karate kicks, and any other source to beat this STUPID dragon!!
To LvdByGod; To answer your question I was on Pegintron. Actually the hair loss was not a problem so much as it just was a sympton that began very early on in treatment. One can become very creative with bandanas when using them as an accessory. I did remain very optimistic about that part of it.
Unfortunately with the appitite, taking anything would not really help as the sores in my mouth and throat became so cronic they abscessed so anything other then water, popsciles and jello was out of the question. It became impossible to speak let alone eat and ended in surgery.
I really do not mean to whine, but this is all so relatively new that I am not sure how I am suppose to handle all the emotions that I feel about it.
I am not willing to debate with you on every point. Surely we disagree on who is dug in on a position.
I don't see the point in personal attacks, so I am not going to go there with you.
How about we not address one another directly? That is the surest way to avoid confrontation that disrupts this board. No one should interpret my silence to your points as agreement with them and the reverse should likewise be true. Is there anyone left who doesn't know your opinions or your opinions about my opinions? Is there anyone who wants constant conflict here?
Since I am not leaving and neither are you (nor am I suggesting you should) this might provide a way to have peace without anyone feeling harassed.
The former debate got way off track when I quoted from the very article you, yourself, posted and it was taken as a statement coming from me. Even you didn't recognize it coming from the article you posted, or didn't say anything about it if you did.
Try to trust that people are smart and able to handle information, ask questions, check resources and work with their own physicans. I do.
I'm confused here which isn't unusual lol You say that 33% do progress over 30 month period. Which means to me....one third progress and two thirds...dont. And there again that would be the one in 3 that do progress right?
I also recommend Misha's book (The Hep C Help Book.) I am in San Francisco and have an appointment with her next week. A friend who has hep c saw Misha on a monthly or weekly basis and she swears by her. Misha co-wrote the book with Robert Gish who is a well-known liver specialist here in the Bay Area.
Side effects and wellness are different for everyone and the diagnosis of hep c is definitely not a death sentence. Eat well, forget the alcohol and fried foods and laugh a lot.
Best of luck to you and hang in there.
Man O Man.....I can sure sympathize with your feelings. To know that you have this and just sit back and hope for the best is NOT something I could ever do.
It's too late now to go back and re-hash the whys and wherefores of why you had to stop your tx. You must now look forward. It's important to be doing SOMETHING if for no other reason than to save your sanity.
Milk Thistle has been shown to be helpful for some folks but usually only for a few years. As the body gets used to it the benefits do seem to wear off a bit. Antioxidents such as Viyamins E & C and stuff like Gree Tea can be helpful. Think "healthy" now. Eat good healthy foods. NO alcohol. Watch the OTC meds and ANY other meds that any docs might want you to take.
Here is a good article I found awhile back about Nutrition and HCV. I found it informative......
My only other comment concerns the "herbal" stuff you may run accross in some places that are "supposed" to be good for the liver. Many of these things not only do not work, with HCV they can really cause you harm. Unless you are POSITIVE of what you are considering using then steer clear of them.
Best of luck to you as you fight The Dragon in the way you think is best. I hope this info is of some help.
Whatever you do........KEEP MOVING FORWARD!!!!!!!!
i am so sorry to hear about your mouth sores and surgery for them. i don't know what you could do if you couldn't live with that for 48 weeks. all i can say is that pegasys is suppose to have less sides then the stuff you were on.
perhaps someday you could try pegasys and see if the same happens. if not that would be great. i just hate to see you put yourself in a catagory of untreatable. the good news is there will be future meds with less side effects.
I pray for you,that new meds will come out soon. and one will work for you. i also pray that your liver will not progress to a bad point and you will live to a ripe old age....
I don't want to add fuel to the fire, by any means, but I really think you should give thanbey a break. I realize you disagree with her point of view, but she's been very cordial and polite in expressing herself. On the other hand, your disdain for her is coming through loud and clear. I don't see any point in this conflict between you and her. She's not looking for a fight. Are you? I hope not, because you've never struck me as the contentious sort.
I am with you 100%. I am not sure what you are attributing to me because I was commenting on an article put up by someone else. I was not making any claims of my own. Let me know if I was not clear about something and I will try to do better.
The difference between marketing and science can be very hard to decipher even for doctors.
Thanks for your insights on this board. I appreciate where you are coming from, on both counts.
It's good for you that your treatment was a success but try being a little humble and maybe lose the aggrogant know it all tone about what works and what doesn't. Some of us out here are trying to fight this disease with alternative methods because that's all we have - TX didn't work for us. Some of us have to settle for just trying to feel a bit better day to day and not getting cured. You have absolutely no idea whether alternative treatments can deal with some symptoms until you've tried a whole bunch of them. And even if you had and they didn't work for you, who are you to say they won't work for someone else? This isn't the first time I've found your posts to be arrogant. Who the hell made you the big expert on hepatitis? ( and please don't cite all those articles you've read; The same ones everyone who can surf the web has also read.) I wonder if you'd be such a big mouthed know it all if you had failed TX.
I really want to thank all of you that support all of us on tx. I truly appreciate every word of support and every atricle and link supplied. I find you all incredible for continuing to send great info daily over and over for oldies and newbies. I've always found this to be a pro tx site which has provided me with info and comfort since my first day here. There are many day I have come here just to seek the positive part of all this you provide here. Thanks to each of you and thanks for hanging in there when anti tx or negative things crop up. When that happens I sometimes get discourage and think of not returning but then you are there cheering me on again. I for one truly appreciate this and want you all to know it. LL
I don't know if you have any symptoms of the disease but if so, there are some alternative treatments that can help in relieving them. If you live near a big city or hipster community, try to seek out an acupuncturist. It's not so much the accupuncture but the Chineese herbs that help alleviate some symptoms like fagigue or headaches which are my main complaints.
Whatever you do, don't give up. Yea, clearing the virus using conventional means would have been best but for me and you and millions like us, we've got to fight a guerrilla (spelling?) against this virus and just try to hold it to a draw while waiting for something better to come along. Best of luck to you. Travis
I, for one, don't care how polite or impolite someone is here. If they are stating things as a matter of fact they should be prepared to back up with they say with FACTS. This is an open forum. Hitler may have been a very polite man but he murdered millions of people. Table manners don't equate with virtue or lack of.
As numerous others have pointed out -- Teresa Hanbey -- has an anti-tx bias. Several people here seem to know her from other sites. I don't have time or care to research her but I suspect all is not as it seems with her cordial posts. If I am wrong I apologize and I certainly don't want to cause any discord on this site.
Your post has convinced me that I don't want to be part of this bunch. I happen to value good manners and I think you and others here have treated this woman horribly. She, on the other hand, has taken the high road every time she's been attacked. So what if she has an anti-treatment bias (which I'm not convinced she does, by the way). Are you telling me that there's no room on this board for people like her? How insulting to compare her in any way to Hitler. Shame on you.
Good luck to all of you. But I rather hang out somewhere else.
Yeah, everybody has the right to have an opinion BUT a lot of us don't know anything about HCV, are in a sorry state due to tx or the disease and are vulnerable to predators. Sometimes we get a person that drifts through here that has another agenda than offering helpful, kind advice ... maybe they are selling herbs, books, or the miracle cure to HCV. I don't know.
I have been watching all these posts tp Thanby with some interest. She does NOT have to agree with all of us here. Her opinion is valid as it is "only" an opinion.
I have a story to tell..........
When Ralph first noticed that his penis was growing larger and staying erect longer, he was delighted, as was his wife. But after several weeks his penis had grown to nearly twenty inches. Ralph became quite concerned. He was having problems dressing and even walking. So he and his wife went to see a prominent urologist. After an initial examination, the Doctor explained to the couple that, though rare, Ralph's condition could be fixed through corrective surgery. How long will Ralph be on crutches?" the wife asked anxiously. "Crutches? Why would he need crutches?" responded the surprised doctor. Well, said the wife coldly, "you ARE gonna lengthen his legs, aren't you"????
So you see...as in the case of Ralphs wife.....It's all a matter of perspective....How we look at things.
It's OKAY for differing opinions to be posted. If we have another opinion then state your case.....don't attack the individual who you don't agree with. Your disagreement should be with the subject, not the messenger. Everyone has a right to their own "Opinions".....even if they may be wrong....in YOUR opinion.
Chevy and I will be dancin over in the corner while you all fight it out then........she's got the right "perspective" goin on..........
All I asked for were some facts ... she can have any opinion she wants, obviously. She made some off the wall assertions and when asked to back them up with some fact she provided nothing. You act as if someone says please and thank you that is the "high road" -- it isn't.
I, and others, have treated her horribly? No. She almost got one person here to stop treatment. That is treating someone horribly.
Whether you like it or not the current treatment is all we have and it does work doesn't it? PLENTY of people here have been cured.
I've been around a few of these HCV message boards and seen a few scam artists come around selling snake oil. I smell something like that here and it isn't coming from any part of me.
If all else fails or first of all try acupuncture the herbs are natural with no side effects.
Read the book Healing Hepatitis C with Modern Chinese Medicine
By Qingcai Zang, MD
Or look up Dr. Ren in New York City
I have treated my Hep C for many months and feal better than I have felt in years. These herbs help your body deal with the virus naturaly.
Hey Guys...I'm sorry but I just don't see it. I don't see any hidden agenda that thanbey has other then offering knowledge on hepatitis. I have been to her site several times and post there and there is alot of people that are on tx and I always hear encouragement but she also lets you know there is alternative methods and that we can live a long time with this if we adjust our lifestyle. Which I wholeheartly believe that because honestly tx is not going to work for all of us. There is some it makes too sick and then others unfortunately relapse. We have so many people here that are waiting for something new or just NOT wanting to do tx for their own reasoning which is fine. I like the idea of having ALL IDEAS thrown out there so I always have a plan in the making if plan A does not work. I just see for every posting she makes..It seems to be jumped on. Its almost like she is having to defend every single word that she posts.
Were you on the latest tx.? (boy I'm almost 4 months post and I still have awful brain fog...had to try to spell latest 3 X !!) Whew! Anyway Have you thought about a second opinon? Just a thought. Many prayers, Cindee
I'm ESLD b/cl'ed@18dys. fin 24wks Oct '02. What would be a good herbal diuretic? Also a good ammonia-binder to keep the encephalitis at bey? I just noticed that the herbal hormonal support I was taking had black cohash (as do the others I ck'ed today), is there a good non-toxic hormonal support? I don't do Rx's, not even during tx for sx's--the only Rx I've taken in yrs was tx for hep c(pegintron-riba), which was fitting since it was a blood transfusion (W med) that sickened me.
I LOVE TO READ GASTRO/HEPATOLOGIST'S STUDIES AND RESEARCH AND I LOVE TO HEAR ANYONES OPINIONS. MY PROBLEM IS PEOPLE WHO COME OFF AS PROFFESSIONAL AND FACTUAL BUT THEY ARN'T DR.S, AND THEY DON'T STATE THE SCIENTIFIC RESEARCH TO BACK UP THIER "STATEMENTS".
A PERFECT EXAMPLE IS THE ARTICLE THANBEY HAS ON HER SITE MISINFORMING THE PUBLIC (YES SHE IS RESPONSIBLE FOR WHAT INFO SHE ALLOWS ON HER SITE), THAT THE CHANCES FOR SVR FOR COMBO TX IS ACTUALLY SMALLER THAN MOST OF US HAVE READ SCIENTIFIC REASEARCH ON.
I WAS CONCERNED. I WANTED TO KNOW IF I HAD THE LATEST INFORMATION. SOMEONE WAS SAYING SOMETHING THAT I HAVE NEVER HEARD BEFORE. SO I LOOKED UP SOME SCIENTIFIC STUDIES THAT SAID THE ODDS WERE BETTER THAN THAT.
I AND OTHERS SHOULD HAVE THE RIGHT TO ASK WHERE THEY GOT THAT INFORMATION. THEY HAVE A RIGHT TO IGNOR MY REQUEST. BUT, AT LEAST THEN I KNOW WHAT KIND OF PERSON I AM DEALING WITH AND I CAN AJUST MY THINKING TO PERHAPS NOT BLINDLY BELIEVE THIS PERSON WHEN THEY POST.
I HAVE AN OPEN MIND TO A POINT, I AM NOT EASILY BAMBOOSELED. ALL I REQUIRE FOR MY OWN RESEARCH IS THAT IF SOMEONE IS NOT A DR. OR GASTRO WITH FORMAL SCHOOLING... IS THAT THEY BACK UP CONTRAVERCIAL IDEAS WITH ADEQUATE SCIENTIFIC DATA.
IF YOU NOTICE IN MY PROBLEM WITH THANBEY STATED ABOVE, SHE STILL HAS NOT POSTED HER SCIENTIFIC REASEARCH TO BACK UP HER WEB SITES STATEMENT THAT ONLY "33% OF PEOPLE AT MOST" TAKING TX WILL CLEAR THE VIRUS. MOST PEOPLE KNOW THAT IS INCORRECT. BUT SOME DO NOT. I WANT TO PROTECT THOSE PEOPLE.
INNOCENT NEW COMMERS WHO DON'T KNOW BOTH SIDES OF A DEBATE CAN NIEVELY BELIEVE THOSE STATEMENTS,CAN MAKE INNCORRECT DESCISIONS BASED ON MISINFORMATION. WHETHER TO GO OFF TX OR NOT TRY IT NEEDS TO BE BASED ON FACTS. IT IS A LIFE OR DEATH ISSUE.
ANYONE OF US THAT MAKES STATEMENTS THAT SOUND LIKE FACTS SHOULD BE READY TO BACK THEM UP IF ANYONE ASKS. NONE OF US ARE DR.S. SO IF SOMEONE IS "PUT OFF" BY US ASKING THEM PROVIDE THE ACTUAL PROOF OF WHAT THEY ARE SAYING IS SOMEONE TO BE CAREFUL OF AND RED FLAGS SHOULD GO OFF IN ALL OUR MINDS.
ALL I DID WAS ASK THANBEY TO PROVIDE SCIENTIFIC REASERCH TO BACK UP HER STATEMENTS. THIS SHOULD NOT BE SEEN AS A PERSONAL ATTACK BUT AS A SAFTEY PRECAUSION. HAD SHE POSTED IT I WOULD HAVE PUT MORE CREEDENCE IN HER SAYING IT. I AM WAITING FOR THE STUDY THAT SHOWS THAT ONLY 33% OF PEOPLE AT MOST WILL BE SVR. UNTIL THEN I WILL BE GUARDED ABOUT THAT CLAIM.
LET'S NOT BE A BUNCH OF "LEMMINGS"........
WE HAVE TO LOOK OUT FOR ONE ANOTHER. IF I HAVE SOMETHING TO POST THAT I AM SAYING IS A FACT. I TRY TO PROVIDE A LINK TO BACK THAT UP. IF I HEM HAW AROUND ABOUT IT THEN YOU SHOULD NOT BELIEVE ME UNTIL I DO.
P.S. A LINK THAT IS JUST SOMEONE ELSES OPIONION IS NOT SCIENTIFIC RESEARCH AND FACT EITHER.
We are organized under section 501(c)3 of the IRS tax code. That is the strictest section of the code and it governs all chriable organizations.
So, what have we done with the money? We have made education of hepatitis C available in these communites:
Los Angeles, CA
New York City
Hilton Head, SC
We brought the message to the American Public Health Association's Global Health Conference in 2000 for the first time and I have been nominated this year for the Public Policy Section as a Counsellor to the APHA.
We were invited to present to the NIH (National Institutes of Health) Consensus Management Conference on Hepatitis C in 2002. A video of our medical director's presentation is avaialbe on our site or on the NIH site.
I have advocated for Women's Health in HCV for a number of years, beginning with Schering Plough (who did not want to release the data) and made the FDA look at the question resulting in the information being on the label of the product for Pegasys. Women might think it is important to know that the disease and the treatments affect them differently. I am a spokesperson for the Society for Women's Health Research (I think the list is on their website)
If I continue to list all of the things we have done, I suspect I will be villified for that, too.
So, know this: this all began for me and my husband when we submitted his (successful)application for service connection to the VA in 1992 on the basis of hepatitis C (He was a navy corpsman who was sewing up the boys coming home from Viet Nam)My husband works with Veteran's on benefits issues and we both counsel on applications. For free.
I have lived through his treatment and we have survived this disease and care enough to share what we have learned, including the improvement (documented) in histology from lifestyle choices alone.
I am not Mother Teresa or Saint Teresa, I am simply one woman with a medical background and years of experience as a health educator, social worker and attender of countless CMES for specialists who tried to give the patient community a glimpse of what is going on in the world of HCV. I do not put myself in the category of expert, though there are doctors who love to embarass me at advisory boards by saying otherwise and who ask me to help them with difficult cases. I am a librarian more than anything. I find the information and share, it. I travel and speak extensively.
I have been listed in Who's Who in Healthcare and Medicine for several years now and even in the Millenium Edition that went into the White House Time Capsule for the Millenium. I thought it was cool that HCV was represented in the time capsule in some way.
So, believe whatever you want to. See the flying black helicopters if you wish. That is all up to you.
We do need money, just as any chairity does. You get tons of email and mail asking for your charity dollar for every kind of cause. We are simply another choice. We are accountable for what we do to the IRS and to the public. But, since the Hepatitis C Community is not known for supporting their own charities, many are now disappearing. Choose one ans support it. Remember, though, that a foundation is not a charity.
I am not responsible for the Senate Bill in Washington, but I support it. I have lobbied for it. We tried to get the Surgeon General's letter out, but it STILL hasn't gone out.
I don't think anyone convinced I am a scam is going to be convinced of anything. All I can do is attempt to follow my own moral compass and be the person my values say I should be. Judge me if you like, but do so after you have stepped out publicly and tried this on for size.
And, just so you know, I have no message board. I travel around from one to another at whim and as time permits. As a volunteer, I reserve the right to do that.
As to the Board of Directors and the Advisory Board, they have stuck with this a long time and they are all volunteers, too. They believed that the HCV community is important and have served without pay and travelled at their own expense. How often do you think a reknown researcher volunteers to be a medical director for free?
The mission statement of HCOP was crafted 12 years ago and we mean what it says. If we had wanted to, we would be much better off financially. We have been offered significant amounts of pharmaceutical money and have refused it. THAT would have biased our perceptions. The marketing machine fo the drug companies is incredibly strong and it has been woven into the fabric of every aspect of the medical community including science and clinical trials. While I haven't regretted the decison, we don't criticize the organizations that did take the money. They have had the benefits of more money, professional PR and other kinds of support and I think have done very well with it. We are still standing after 12 years. That says something, in my opinion.
My basic message is this: do your own research and go with your own value systems and what is right for you. Don't rely on me to do your research for you. I do what I can and the rest is up to you.
I am not the least bit qualified o answer you question.
There have been books on this by alternative medicine specialists.
A couple of authors I would recommend you look for are:
Dan Labriola, ND
Both of these authors have a special interest in Hepatitis C. Misha Cohen's specialty is Traditional Chinese Medine and Dr. Labriola's work has been in Oncology (Interferon was/is an oncology drug) and hepatitis.
Oh wow...we will all to be afraid to make a statement on anything anymore or share new articles that we have found for fear that we are going to have to weeks of research to back up something we ran across. There has been so many reports of something new coming up in next few years but if every person here that made that statement...I then jumped on it and wanted all the facts, and their back up on it...well you get the drift...it would run alot of people off. We are all here just going through this together and have this wonderful support system and yes...none of us are doctors...Just good compassionate people that care for one another. As far as thanbey being a dr...no she isn't. A professional...I would say that anyone that 15 plus years of studying and researching a disease would probably have one up on us that maybe have tops a year to 5 and in my case...4 months so I would feel ridiculous to say she is NOT a professional because WHO AM I?
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