Newly diagnosed, taking naturopathic/homeopathic treatment ???

[kstar]

Since July I have been exploring all options.  Here is what I know about my diagnoses...My liver enzymes are AST 75/Alt 76, genotype I, HCV RNA of 2.3 million and one small liver cyst w/no splenomegaly.  After researching the side affects and the response rate of peg interferon and ribavirin I decided to try other options.  Since taking supplements and homeopathic meds my viral load has dropped from 2 million to 5 hundred thousand.  MY QUESTION, IS IT NORMAL TO SEE VIRAL LOADS DROP WITHOUT ANY TREATMENT AT ALL.  My doc told me not to get to excited that I still have a treatable virus.  SECOND QUESTION, WHAT SHOULD I EXPECT MY DOC TO BE DOING?  ANY SUGGESTIONS FOR THE BEST HOSPITALS, DOCTORS IN THE STATES...PREFERABLY IN THE MICHIGAN AREA.  My first visit was at U of M Ann Arbor which will continue seeing me if I opt for treatment.  Thanks for any/all help or suggestions.

[doglover28]

Hi,
I haven't started treatment due to the fear of the side effects.  I go in to a panic just thinking about them. My doc also told me that they don't know the long term effects of treatment either.  It could bring on some other terrible illness for all I know.  That just sets the panic mode off more. I am being treated at Duke University.  Since I've put treatment on hold, my doc wants to see me every six months.  He is going to do another biopsy in a couple of years.  Did you get vaccines for Hep A and B?  I did.  
Good luck.  If you can recommend any books on naturopathic/homeopathic treatment I would appreciate it.
Thanks,
Pam

[FlGuy]

There are no docs here.  Mostly folks with hcv in various stages of treatment (tx) or not.  Viral loads can bounce around before tx, it's not unusual at all - probably normal.  In addition, the test that counts the number of them can also vary.  Since your body's immune system did not eliminate the virus (15% do) you have chronic hcv. Although it's very good to be healty, eat well, and take appropriate supplements those things will not eliminate the virus.  The only current cure is interferons and ribavirin.  There are other meds in development - but not ready for prime time yet.  If you decide to wait, your doc should keep an eye on your liver with CT's and/or Ultrasounds for gross assessment.  The condition of your liver, for fibrosis and cirrhosis,  is best revealed by a biopsy - which is not as bad as it sounds.  You should do liver-friendly things which includes not drinking.

[Lady E]

I was on the fence for treatment 2 years ago so decided to get rebiopsied in 06 to see if it had progressesd. This 2 years gave me ALOT of time to do research of tx, and read all that I could about combination tx. When my 2nd bx came back & revealed I now needed the tx, I had SO much fear & anxiety about it I about drove myself crazy.
Once I started tx in 7/06, I found that the fear & anxiety about it was actually worse than the tx itself. (for me anyways)I'm glad I am on it now, and with each wkly shot, I consider myself 1 week closer to killing "The Beast"
Good luck in the decision that you make.
E

[doglover28]

Thank you.  When did you get your first biopsy? Was it two years ago?  How much had it progressed?  I honestly do want to rid myself of this virus.  I just need the courage.   Thanks for sharing

[FlGuy]

You mentioned Duke.  When I went to see the liverhead at the U of Miami we talked about a lot of stuff, including leading hep docs.  He mentioned one at Duke, John McCutcheon (spelling might be off) - you probably know the name.  When they have drug trials there is a grand poobah running the show.  This big mucketty-muck calls the shots for all the other locations that are also doing the same drug trials. For all the VX-950 trails Dr. McCutcheon is the crowned prince.  If you are shakey around peg/riba, it may be a good idea to cozy up to him and his staff.

[doglover28]

Hi,

He is my doctor..Dr. McCutcheon.  He did my biopsy. He's a nice guy.  They asked me to do a clinical trial for VX950, but I didn't qualify because my enzymes weren't elevated twice in a six month period.  I'm sure they will have other trials that will come up.

How are you?

[NYgirl]

The only cure is interferon and ribavirin treatment.  

Viral loads go up and down and up and down and don't really mean very much at all.  The biopsy will tell you where you stand on liver damage - but the only way to kill the virus IS to do the treatment.

All the homeopathic remedies in the WORLD won't cure it = or we would all be doing that instead.

Sorry.

[doglover28]

I did spell it wrong. It's McHutchison.    I am also working with Dr. Patel who is with his group.  McHutchison runs the show for the group.  Great man

[FlGuy]

I'm doing well.  I re-start tx in a few weeks.  The doc suggested that I treat sooner than the vx stuff I might be eligible for in a few months.  The next phase of trials for vx will start in the the next few months - around Jan, and some of the criteria may change since it will be with a bigger population. So you may qualify if the criteria changes.  Stay close to those guys, it could be your ticket out.

[FlGuy]

Yup, that's the name.  All I had to do was put on my glasses so I could read my notes. The guy's a keeper.

[worrywartwife]

My husband was VERY nevous about the side effects of riba/peg-intron treatment. He is now 5 weeks into treatment, and his side effects are minimal-a little tired, a little emotional. I think many, many people have mild side effects, and so do not post here, as they don't feel such a need for support.The unlucky with severe sides post here in greater numbers, as they need more support, and so it begins to seem EVERYONE has a bad,bad time, which is not accurate. My husband read so many scary postings, he almost chickened out of treatment, but then decided to give it a try. We are both very glad he did. Best Wishes, JoAnn

[Mister beagle bailey]

Any idea if the trials (VX 950) is for geno 2's also?

Beagle

[FlGuy]

From what they said at UM, VX for geno 1 relapsers will start around early 2007.  For other geno relapsers a little later but still in the first quarter of 07.  Since they did not have their full instructions for the next phase yet, that was a guess but they've been around the block with many trials so they are educated guesses.  So, your Feb appt with Schiff could be very good timing.  That's why you should check in with Amy every couple of months.  And, as the other folks who are in current vx trials have indicated, the first several weeks of vx trials require attendance at the trial site for meds, testing and evaluation.  So, the sooner you can move farther south the easier it would be for you.  Assuming, of course, that your condition and specifics make you eligible.

[Mister beagle bailey]

Thanks, I have my house on the market now and hoping it sells soon.  As you know, this is not a good market to be selling.  I plan to call Amy again today.  I don't care if I have to live at UM for a month as long as they take me.  LOL  How are you doing?

Beagle

[Mister beagle bailey]

Well, I just got off the phone with Amy and she still has my name on the list for up coming trials.  However, she said there are no trials down the pike for 2's and 3's any where in the country as of yet. Because they say 2 and 3 are easy to treat, sure right. It seem's to be a losing battle, maybe I should go to Europe for their trials as 2's and3's are common there.  LOL

She also said that they may not take me because of my thalassemia' can you believe this, I'm screwed either way.

Any ideas???????

Beagle

[doglover_forgot password]

Hi Liv,

Nice to meet you.  Dr. McHutchinson is great! He has the best bedside manner of any Doc that I've been  to. I couldn't believe how young he looks. He has no problem with me taking SAMe and the other one that I take is Milk Thistle. Maybe they aren't cures, but they do help the liver. He has the best bedside manner of any Doc that I've been  to.
I worked in Pharmaceutical Development, and scientist would synthesis herbs to make medicine.  
How long have you been going to Duke?
Pam

Beagle,
I'm not sure about the studys there on 2s since I am a 1.

[doglover_forgot password]

Thanks for sharing that with me.  That's probably my problem. Reading all the horror stories about the treatment.  I am going to watch the video tonight about treatment.

[GrandmaA]

You cannot take homeopathic remedies because they contain alcohol. ANY amount of alcohol further damages our livers. This is what Dr. Zhang says on the subject and he's an expert in livers and herbs.

I lowered my viral load a great deal with colloidal silver in 6 months, but I got stiff fingers. It's just getting better now after two years. BE CAREFUL.

My doctor said the only permanent damage from the side effects will be to the thyroid.

[NYgirl]

Side effects to the thyroid are NOT necessarily permanent. They can regenerate when you go off treatment.  I don't think mine will personally cause it's really dead from the IFN but - not everyone has to stay on the Synthroid for the rest of their lives and I am seriously hoping to get off it after treatment.

So that's some good news :)

[NYgirl]

"I lowered my viral load a great deal with colloidal silver in 6 months, but I got stiff fingers. It's just getting better now after two years. BE CAREFUL."

Viral loads go up and down and up and down and up and down and aren't that important at all.

Please don't spend time worrying about lowering your viral load and taking things that cause you pain or injury or whatever - the whole myth that viral load is that big a deal is just that.

[FlGuy]

Well, at least you know what long distance tx is like.  Try calling that Dr. Nelson in Gainesville, he did viradimine trials - maybe he's got an idea.  And, there's always Doc J. Although, I'd wait out Schiff and enjoy no tx for a while.  Are you stage 1 or 2 - I forgot.

[Mister beagle bailey]

Thanks, will try to call Nelson.  I'm a stage 0.

Beagle

[Liv]

Hi:

I also see Dr. McHutchinson at Duke every 6 mos.  He's a very respected and well known researcher in this field.  I was also eliminated from the current 950 trials based on a very occasional heart arrythmia.  I've been on herbs for 4 yrs. and he has no problem with that fact whatsoever.  I personally know of a doc in Texas who believes certain herbs definitely have certain benefits such as reducing liver inflammation and he's written articles on such.  He even suggests particular herbs for patients not ready, able or willing to tx. with the current meds.  We all know they're not a cure and don't take them with that expectation, however many diseases and conditions have been helped with herbs and many cultures have been treating with herbs for thousands of years and I believe that the Western medical community is starting to open their thinking to this fact.

[NYgirl]

Wow I didn't remember that you were a zero.  What FANTASTIC news.  Absolutely WONDERFUL!  I know you want to get rid of this disease BAD but...wow.....I just felt such RELIEF I can't tell you.

Thank GOD you are only a ZERO!

A zero! Wowowowow.  If all I get out of this tx is back down to a 2 I'd be happy LOL.

You just made my DAY.

It doesn't take away from the fact how much you want to get rid of HCV but..I FEEL BETTER!  ;0