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Alternative Therapy

Hello.
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?
41 Responses
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Avatar universal
trying to find out if anyone has ever had sores in the mouth due to the Peg-interferon shots or is it the Riba that does it?

cottoncandy99
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Avatar universal
Just so you know, I receive no salary.

No one at HCOP is paid.

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:

Cleveland, OH
Hazard, KY
Los Angeles, CA
Bellingham, WA
Orlando, FL
New York City
Hilton Head, SC
Dallas, TX
Houston, TX
Wshington, DC
Baltimire, MD

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.

Best thoughts,

thanbey



Helpful - 0
Avatar universal
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

Misha Cohen

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.

I hope this helps,

thanbey
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Avatar universal
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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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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
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Avatar universal
First of all, my treatment is still an open book. I am on week 61 -- cleared early, remained clear.

Secondly, I don't know much of anything when it comes to hepatitis.

I am entitled to my opinion and my opinion of Teresa Hanbey is that she has some other agenda than "helping" us that are fighting this disease. Should I be sorry if that offends you?

As far as alternative methods: If you have something that works please share. I'd like something other than peginterferon and ribavarin because I don't like the sides.

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Avatar universal
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.

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Avatar universal
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.
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Avatar universal
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.

I wish you well and good health.

Totemman
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Avatar universal
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.
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Avatar universal
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.

I wish you the best.
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Avatar universal
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.

Susan
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Avatar universal
PERSPECTIVE

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..........

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Avatar universal
One more item: There are no alternative therapies to combination treatment that work. If there were we'd all be cured without the side effects of the medicine that is currently saving our lives.
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Avatar universal
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.



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Avatar universal
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
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Avatar universal
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
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Avatar universal
You are referring to an article and comments by researchers.

I did not write the article. Every article is cited so that you (or your doctor if you wish) can locate the entire article and read it.

I hope this helps,

thanbey
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Avatar universal
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.

thanbey



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Avatar universal
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.

Susan
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Avatar universal
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....
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Avatar universal
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.
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