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Avatar universal

for susan

Susan, you mentinoed that you treated for about 7 times.

have you tried managing your infection with milk thistle or herbs or homeopathy? i know it can help for a lot of people.  

my dad is a homeopath and he believes in milk thistle as well as homeopathic medicines for the liver such as lycopodium, chelidonium, natrum sulfuricum, taraxacum, and of course carduus marianis which is latin for milk thistle.  homeopathy uses minerals as well as herbs and animal materials.

i'm trying them for a couple of months before i begin the regular treatment.
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Avatar universal
Yep, I've tried several natural methods.  The weird thing is that I seem to be more sensitive in reactions to the natural stuff than to the unnatural prescription drugs.  For example: I tried milk thistle on more than one occasion and it aggravates a mild asthma condition and allergies that I have.  On further investigation, I found out that this is a side effect of Milk Thistle and it said so on one of the bottles I picked up. Says, "if you have asthma or hay fever allergies, milk thistle may aggravate these conditions".  So, that was out.  I tried doing the herbal detox thing and ended up with major gastric problems, PAIN, so that was out, too.  Anything that I do that's going to make me feel so bad that I can't deal with it, will be out.  Especially when it's not doing anything to help me in my viral load or LFT's.  At least with the Interferon and Ribavirin, my viral load did get lower and my ALT dropped to normal range-even if it didn't improve my fibrosis any and even if I never cleared. Right now, I'm just doing nothing for it.  I know that may sound stupid, but I'm just tired of dealing with it all.  My viral load and LFT's have already started their climb back up and it's only been 6 weeks since stopping.  Typically, after every time I've stopped treatment they keep on climbing back up and never really level out on their own.  I don't really start noticing it a lot until they get up there. Except today, I'm feeling like ****, can hardly move.  Anyway, I know that there will be other days when I'm feeling more perky.  Yesterday, was a good day.  I guess I'm just taking one day at a time, the good days with the bad, like everybody does.  Take care.
Susan
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Avatar universal
Susan,

I am sorry to hear what you have been going through.  You've treated 7 times?  Have you been able to get on any of the trials for the VX950 ?  (I think that's what it's called). What stage and grade are you?

I just got back from the Doctor. I went to find out my biopsy results.  I'm a Stage 1, grade 1. That's not bad since I've had this for about 30 years.  I'm 42 now.   I think I have time to look for a new less stressful job before I begin to treat. My mental state right now from leaving my unhappy job is not good to have going in to treatment.
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Avatar universal
Hey that's pretty good news as far as news goes when you have this disease!

You totally have time to find a new job if you want to it seems!


As far as natural remedies and herbs - to the new people - we've had some people in here who were SURE they could be cured by homeopathic remedies.  It does not work and often times in fact their liver enzymes have gone through the roof.

The only real cure is the current treatment.  While there may be value to using herbs and stuff be CAREFUL and if you do it do it under a doctors care and have a lot of CBCs done.  Don't ever just decide to start taking cures on the internet that promise anything......................because you will really just be throwing away good money.
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Avatar universal
yea, the doc said I should have some time.  He told me to keep exercising like I have, eating right, and refraining from beer.  He felt I wasn't in the frame of mind to start now due to the anixety issues that I told you all about yesterday.  I feel a lot better.  The shaking has stopped.  There is a good chance that I can go back to the insurance company that I worked for prior to having my daughter.  It's part-time, too.  I go back to the doc in 6 months.
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Avatar universal
I am at a stage 3, Genotype 1A/1B.  I was infected sometime in 1983.  I didn't mean to be so negative above post, but I've just gotten my hopes up so many times with these treatments and gotten disappointed. So, now, I'm just trusting that God will heal me if that's in his plan for me.

Susan
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Avatar universal
Hi Susan,

You didn't sound negative by no means.  Bless your heart.  You've been through so much.  My doc today did tell me SAM-E is good to take.  I drink a lot of dandalion root tea which is supposed to be good. However, if milk thistle does bother you, you would probably need to be careful since it's an herb.

My 12 year old daughter had an awful reaction to we think bing cherries a couple of weeks ago.  Her lips swelled 10 times their normal size.  It was so scary. She was having an allergic reation to something.

my thoughts and prayers are with you.  You are a strong person to have gone through treatment so many times.  Actually you are amazing.  God bless you
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Avatar universal
I really do believe that in the next two to three years you will be able to get into a protocol for non-responders that will consist of a proven 'cocktail' of drugs...maybe with VX 950,( and the inf. riba combo), but MAYBE with additional helpers as well.  The statin drugs are being looked at as a better enhancer than ribavirin...and also additional immune system enhancers may be used as well.

I think that when you are able to use a proven 'targeted' drug (like VX 950) along with a potent coctail of traditional tx drugs and newer enhancers, you will finally see your viral load head straight down and stay there.

Do keep hopeful, because game-changing drugs are nearby, on the horizon, and you WILL be cured.  Look at how many who were told they could not achieve SVR five years ago, who have treated using newer tx approaches, and have finally won.  Yours is just a little bit tougher case, but you will soon find the key that unlocks the virus, and gets you over the hump to eradication.  

It is good to rely on God, and put yourself in the hands of a greater power, as they say, but I think it is equally important to remain hopeful, and to be intelligently active in your role addressing this problem medically, when the right treatment arises.  You will know when, because you will see trials with similar non-responders finally getting their SVR.  Then will be the time to jump in with both feet!  Now is the time to recuperate, continue life, get stronger, and watchfully wait for the 'sea change' in treatment to make its mark.

Again, I hope this happens in the next two to three years or so.
At least in serious phase three trials.

Good Luck and stay well.

DoubleDose
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86075 tn?1238115091
I don't react well to milk thistle either, but I take a variety of other supplements and a few herbs and they help my symptoms very much...(I'm not presently on treatment) and I never expected them to "cure" me...just help my symptoms, and they do that....I've also gone to many specialists about this, and done  a lot of studying...I wouldn't recommend this route to people who just want to talk to some healthy food store clerk...it takes some study, research, and talking to experts...of course, when I want to rid myself of this disease (hopefully) I will do conventional treatment...Susan, hope youre feeling better and better....

Oh, and a good diet is just as important if not more...
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Avatar universal
Hi,
I'm new to this forum. It looks like you have a lot of very nice and helpful people here and also a great deal of information.

Susan I'm so sorry to hear you had to go through tx 7 times.

I'm on Dr. Zhang's herbs for almost 3 years now. I'm doing very well on them (if you can control the inflammation you can keep the disease in check - from getting worse).

I'm 64 years old. I'm trying to get into Vertex clinical trial phase III. I'm almost too old for the trial.

I'm genotype 1a. Biopsy between stage 2 and 3. I had my gallbladder removed in 2005. I had large gall stones. I still work full time. When I'm ready to retire in 2 1/2 years maybe the VX 950 will be approved by FDA. I heard it's on the fast track.

Hang in there Susan, there are better medications coming before long.

We do our best and leave the results in the hands of God. They are not in our hands. God bless you, Susan.



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Avatar universal
In my opinion,  homopath can help some things but I am real sceptical of the herbs really eliminating or curing really bad things like cancer or HepC.  I have seen so many instances where people got their hopes up on false information or advertising and ended up with irreversable damage.   I do think that homopath medicine is a good thing if it is used to  help boost your bodys immune system but to really CURE something erious,  no.
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86075 tn?1238115091
totally agree Pdilly, hope youre feeling better...
Helpful - 0
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