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Avatar universal

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
Avatar universal
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>

Here are some articles on alternative therapy:

<a href="http://www.hcop.org/hcvinfo/category/index.cfm?categoryid=3">Alternative Treatments C</a>

These are by no means complete and if you find anything you think should be added, please send it along. This is definitely a work in progress.

<a href="http://www.hcop.org/hcvinfo/category/index.cfm?categoryid=37">thanbey</a>

Avatar universal
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!
Avatar universal
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!

Kim
Avatar universal
TOXICITY FROM VARIOUS ALTERNATIVE MEDS.


http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12950418&dopt=Abstract

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...
Avatar universal
Thank you.

I have added your article to the database.

thanbey
Avatar universal
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!!
Avatar universal
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.
Z.
Avatar universal
Even if one out of three patients will progress and  assuming the results the results are accurate and the researchers didn't miss anything (like smoking, for example) then the news is pretty good.

Two out of three patients with hepatitis C will NOT progress.

A 66% chance you will not progress is a good thing, and so is a 50% chance a genotype 1 will realize an SVR. It's a matter of perspective. Just my 2 cents........

I hope this helps.

thanbey
Avatar universal
Yes...the way you put that...That does sound so much better!
Avatar universal
Thank you one and all for your suggestions.  The past year I have been hiding under a rock and did not realize there was so much in the way of support just from comments of others.
Take good care.
Z.
Avatar universal
I HAVE A QUESTION ABOUT ONE OF YOUR ABOVE SITES ON ALTERNATIVE TREATMENT OPTIONS. IT WAS SAID ON YOUR SITE;

  "There is NO reliable and effective therapy for chronic hepatitis C since interferon and antivirals work NO MORE THAN 30% of the time"...

THIS IS SIMPLY NOT TRUE.

(see these 2 large studies)

... on full doses of meds svr is 44% for genotype 1's and 7o% for geno 2 and 3 which averages out to 53% for mixed groups. (study 4)  

(results were higher in study 5)...at 51% for gyno 1's and 76% for geno 2-3's.   and the odds really raise if you have evr by week 12. see pegasys information from thier company.  

look up under "complete product information" and look at studies 4 and 5.  

http://www.rocheusa.com/products/pegasys/pi.pdf http://www.rocheusa.com/products/pegasys/index.html

TIME TO LIST THE REPUTABLE SCIENTIFIC DATA TO BACK UP THIS STATEMENT. THIS SORT OF STUFF IS WHY PEOPLE ARE HAVEING A HARD TIME WITH YOUR POSTS AND WEB SITE.
Avatar universal
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.

best to you,

thanbey







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