Should I treat?? Advice please

[miss moneypenny]

hello,

this is my first posting here + hope you don

[Forseegood]

This can be a little like theatre in that we all have our parts to play. I'm sure everyone believes that they are helping to explain the disease and treatment plans (from their own perspectives) and maybe we can just look at these boards as one way to put all our opinions in one cache so we can fine tune our own opinions and find out what the other guy is doing. Also, it's wonderful support.

In my view, this board is mostly pro conventional treatment, which is good, coventional treatment is the only therapy right now that can free us of the virus. There is so much to know about treatment and it's a really good place for info on that. Of course there are going to be some people who might fall into the "watchful waiting" category for a number of reasons that have already been explained. On this board there seems to me only a handful of people who are taking herbs and supplements who are in the "watchful waiting" category.

I wonder if many know there are other boards who mostly deal in exchanging info on herbs and supplementation to bolster the immune sytem in dealing with this disease? Where there are only a handful of us here, and our stories might even seem farfetched and beyond the pale compared to so many other personal experiences here, you go to those boards and you find many, many people with similar experiences to our own. And yes they are ancecdotal, there aren't a lot of studies on this subject, (though that's beginning to change) but when you have a good outcome with these regimens, you'd like to be able to be validated sometimes and exchange info about the regimens with other like minded people.

One thing you find with many of these people, they are talking about consistent number values in terms of the alts (indicating inflammation.) My numbers only spiked when I went off my regimen from the low 40's (a little elevated) to 78, got back on my regimen and they have consistenly stayed in the low 40's once more. This is over months and months. Along with my numbers going back to where they were, many of my symptoms were alleviated, as to where they were before I stopped taking the regimen. My lifestyle had remained the same throughout, I always had a good diet and exercised. Nothing else changed except the fact that I went off my regimen and that's when the spike occured. I am not the only person that this has happened to, there are hoards of us out there. And yes, there are many who have also lowered their viral loads as well, but that is more insubstantial, at least to me.

Put yourself in my shoes, if I know this to be true for myself, and for many others, what do you think I feel when I hear of a person who has been a 2 time relapser and is a grade 3 biopsy and has just been told to wait for the better treatments. They are saying they are feeling sicker and sicker. What would you do in my shoes? Would you not want to tell them of your positive experience? Forget the sustained lowering of the enzymes, how about possible symptom relief? That's enough to try them. Would you not suggest to them that they at least try these regimes under expert advice? Also, for the people with little or no liver damage who have been told to wait? They could possibly keep their enzymes low, there is that possiblity, until they decide to treat or get the new drugs.

Now for the people who have had bad expereinces with these regimens, I'd really like to know "how" they went about it. What did they take? What were the dosages? (Could be too small, could be too much for them.) Did they titer up? (Meaning you take a minuscule amount of the substance, then slowly take more and more, to check for allergic reactions?) I've talked to people who have had a not so good experience with chinese herbs, their alts actually went up over a sustained amount of time. Then they tell me, well that alternative stuff isn't for me. I ask them, well, did you maybe try just high oxidants and a single or double herb regimen, with perhaps a few vitamins? Naw, I don't want to take any of that stuff anymore. They now paint everything with the same brush. There is more than one way to go about this. It takes some study and trial and error.

But when you have a good result it's worth it. I'm sure you can see the frustration we feel when we are invalidated out of hand because it's "anecdotal." Usually by people who havent' gone about it the right way or who have not ever tried it! (Though there are some who seem not to benefit.) When we know that there are sick people out there who could be benefitting. It's very, very frustrating, though I can see where the naysayers are coming from, to a point. Like my friend, "the maverick" who took his alts from consistenly being in the 300's, for years, to now being in the mid-30's, for years, and he feels much better, he just doesn't care and continues to take his regimen. What does he care about what the naysayers think? Maybe that's just what I should do and not talk about it anymore to anyone, except on the boards I was talking about...it's just hard for me to do that. I do try to see both sides of this issue, but you can see how hard it would be for me.

[v eggie dip]

Hi Cin, hope you're having a wonderful day!  It's colder than a well diggers butt here today...

I saw a documentary on TV regarding the intelligence of felines...It said the average cat has a vocabulary of 15-25 words (of which some can be multiple word phrases, such as "who wants dinner"  lol)well, the Siamese breed has a vocabulary of 45 words!!! It's supposedly the smartest breed of felines...*smile* spoken like a proud mama  hehe...

Mr. Miyagi drinks out of the faucet too!  He waits about a minute or so before he drinks though, let's it get nice and cold...

If I can't see him around the house I will call "Yagi where are you", he does one of those loud Siamese cries and comes to me..Pretty smart eh!

He also likes to rat out on the other cat...lol  If she sits on my dining room table he comes to get me to tell me..lol..But he has one bad trait, he's a thief!!!  He takes "things" off my husband's desk and hides them...I found Bob's passport in a wicker basket in the laundry room..LOL  I tried to tell  him it is not appropriate to steal, after all he is a cop's cat!!!  LOL

*the dipperoo*

[Tallblonde]

Beth,

I don't take garlic (I can't stand bad breath).  I have recently started taking tumeric, though.  It's supposed to be very liver-friendly and has strong anti-inflammatory properties.

I've had no problems with the SAM-e.  It's been a godsend for my joint pain.  Only 400 mg. daily and...poof...no pain.  I haven't heard of breathing problems associated with it.

BTW, thanks for your support, Veggie.

Susan
______________________

Ivette,

You bet I still have my monkey-chasing stick!  You never know when it might come in handy!

Susan

[cuteus]

AH! the monkey anecdote! those were the days! you STILL got that stick? never mind...I see it.

[v eggie dip]

oops I meant to say Sam-E regarding the wheezing not milk thistle....

[v eggie dip]

did you ever experience shortness of breath or slight wheezing from milk thistle?  I am lately, and can't pinpoint it to anything, except maybe the milk thistle..Also, you mentioned garlic...I was taking garlic caps and a couple people on here said that the capsule form is not liver friendly, what do you take...

PS..Please don't stop telling your story of vitamins...I may or may not have to treat, and if I do or don't I still am a naturalist and need to hear your experiences on vitamins and supplements...Thanks Susan

Big smiles for the tall gal *s*

Beth

[Tallblonde]

Nah...you weren't that bad!  But I may have to get out my stick and chase this new monkey up a tree ;)

My next appointment for bloodwork is December 1.  I hope the results allow me to continue with many new ancedotes.

Hope you're still basking in the afterglow of your SVR news.  You earned it, my dear.

Susan

[Tallblonde]

You write:  "The only number that matters to me is Fibrosis level, and the half-stage difference Tallblonde mentions in my opion isn't clinically significant in terms of a blood marker test."

Hey Jimbo, I've got news for you...this board ain't just about what matters to YOU.

A few of us do care about enzyme numbers and viral loads. You may think you're the "resident expert" here on all things HCV, but it's pompous and condescending of you to incessantly imply that these newbies must be protected from "Tallblonde's anecdotes."

Take Ina's eariler advice and go to a movie or something (aka: get a life!).

Susan  

[cuteus]

somebody took my spot!! was I that bad? gave you that much grief? ;-] Probably, since I had been at it longer than jm.
I hope I got better, now  that I  moved on to someone else. (mischievious smile)
ALL:
We are all just sharing our own personal experiences with things and hopefully folks are savvy enough to note that this is all that is offered here, opinions and anecdotal experience, that none of us are experts no matter how smart we might sound.
Susan
when are you going for another PCR and blood work?

[Tallblonde]

Veggie,

The "Healthy Liver" supplement has the Milk Thistle, Alpha Lipoic Acid, Selenium, NAC, etc. in.  To me, it's a cost-effective way to get all these supplements.

I also forgot to mention that I take SAM-e daily.

___________

Jim,

As ususal, I'm not sure what to make of your comments.  We all know you're suspicious of herbs and supplements.  Well, my experience is vastly different from yours and I don't plan to stop telling my story to folks who are considering watchful waiting.  

Nothing I take is potentially harmful to me or to anyone else, so I don't think it's irresponsible of me to offer my perspective.  Do me a favor...please stop this "Point/Counterpoint" stuff with me.  I'm not interested in defending, justifying or explaining my position to you everytime I bring up the subject of alternative treatment approaches.  You do a disservice to newbies (who might actually learn something from my experience) when you subtly imply that I'm some sort of snake oil purveryor.  How insulting.

Susan

[v eggie dip]

thanks for asking :)

I'm as ready as ready can be...The Hospital where they are doing it is about 38 kilometers from my house, maybe half hour with traffic...I got the blood work done yesterday that Dougie Howser "said opps I forgot" so hopefully it will be available prior to the "harpooning"...

*the dipster, soon to be speared*

[FlGuy]

You ready for Monday?  Long trip to get the biopsy?

[v eggie dip]

Hi Susan, hope you're well...

Question;  you didn't mention taking milk thistle in your daily regimen, was that an oversite?

Just curious, your story is an inspiration to me and wanted make sure that I should be taking milk thistle...

Also, what genoptype are you?

Thanks Beth :)

[cougareyes]

Hey Cin don't we all talk to our animals like they're people.

Missmoneypenny you have been by far the most popular new post ever, you've gotten enough good advice to make you even more confused than you were before you got here. So I won't even add my 2 cents.  Good look on your decision

Food for thought: I was reading about maintenance tx, and seeing how the changing doses of interferon would alter the viral load. Patients that became undetectable, then when their dose was cut, the viral load came back.
Perhaps this plays a role in what we talking about earlier with relapse and hiding virus. Perhaps what has to happen after we are off tx is our own immune system must take over to keep the virus at bay. If that's the case then whatever we do to strenghten our immune systems would help.
By taking a supplement regimen that also targets the immune system can only help at keeping the virus at bay. And whatever we can do to relieve inflammation, probably the most important thing; will give our liver new life.     Peace

[jmjm530]

I respect Tallblonde's personal approach to "watchful waiting" and confess I have no knowledge of either of the herbal formulations she's taking. The vitamins and fish oil supplements seem fine.

As I've done before, I continue to question anecdotally stories like Tallblonde's, not to make it personal, or stir up any old controversies, but simply to further discussion and learning, especially to new members who haven't had the benefit of these discussions before.

First, I believe a healthy lifestyle is very important. and I'm just guessing (I'm sure I'll be corrected if wrong) that Tallblonde also eats well, exercises regularly, keeps close to an ideal weight, and probably doesn't smoke or drink very much. To me, this is the "first line" approach of watchful waiting. Get your lifestyle in order.

As far as herbs, it's an area I'm interested in, also an area I had a personal bad experience in, where my enzymes went so far the wrong way, it was almost an acute infection.

But back to Tallblonde's story which on face can seem very impressive. The only number that matters to me is Fibrosis level, and the half-stage difference Tallblonde mentions in my opion isn't  clinically significant in terms of a blood marker test.

I also have been able to alter my liver enzymes by diet alone. Whenever I went on a very low fat diet, my enzymes became normal. Whenever I went off the diet, they became elevated. I would like to believe that lower enzymes mean less fibrosis progession but there's just no evidence of that. What it does probably mean is that your liver isn't working as hard, which is good.

As far as viral counts are concerned, mine went from over 30 million to 16,000 during a two year period. I was taking no vitamins or supplements during that time. Then three months later, it jumped from 16,000 to 1.5 million.  This is the nature of the beast. Viral loads can fluctuate wildly. To suggest we can control our viral loads with herbs and/or vitamins needs more proof than an anecdotal story.

Hopefully, more funding will be made available to further study vitamins and especially herbal formulations. I certainly hope they will find something that offers a path to regress or even reverse fibrosis. But right now it's still premature to draw the conclusion that vitamins/supplements can slow or reverse liver damage. And for anyone who takes this approach, I strongly suggest "reality checks" in the form of a Fibrosure test every year and a biopsy every 3-5 years.

Taking vitamins/supplements/herbs is a personal decision with no "right" or "wrong" in my opinion. Just do your research, take account of anecdotally stories like Tallblonde's, but also keep in mind anecdotal stories are just that, and the main thing that matters is whether you liver is getting better or not which can only be determined by biopsy or tests like Fibrosure.

-- Jim

[Tallblonde]

If you decide to postpone treating, I suggest you begin a regimen of herbs, vitamins and supplements to protect your liver while you're waiting.  Many of us "watchful waiters" are doing this and most have had impressive results.  I was diagnosed two years ago and according to my latest Fibrosure test, there has been no progression of fibrosis.  In fact, I've gone from a Stage 1, to a Stage 0-1.  My liver enzymes are half of what they once were and and are almost within a normal range.  My viral load has gone from a high of 24,800 IU/mL to 714 IU/mL.

You should research everything before putting it into your body, but here are the primary things I take daily:

Centrum Silver Mult-Vitamin
Health Liver Version 2 (from Vitacost.com) 6 capsules
NuLiver (a proprietary Chinese herbal blend) 6 capsules
Vitamin C  -- 1000 mg.
Vitamin E -- 400 IU
Tumeric -- 900 mg.
Fish Oil - 3 capsules

I also drink a lot of white tea and Rooibos tea (both from Celestial Seasonings.  The latter has been found to prevent cirrhosis in rats.  Good enough for me!

Whatever you decide, good luck.  It'll take some time, but eventually you'll come to discover that this diagnosis isn't the end of the world and doesn't have to be the entire focus of your life.  Be grateful that you have little or no liver damage.  Many people aren't so lucky.

Susan

[cquest]

Isn't that funny that the cats come running when the phone rings! Animals are so smart, my one cat likes to drink from the bathroom faucet and I can't close the door if I'm in there, he will scratch it up so I have to say 'Are you coming?' before I go in there and he comess running from wherever he is...My husband is always saying I speak in sentences too long for the animals to understand but that scenario pretty much shut him up...I tell my puppy to 'finish eating' and point to the bowl and she does...or 'get in the house' and she does...plus if the other dog is outside and I have forgotten to let him in, Sonia will come to me and whine and start running towards the door like 'let him in! let him in!' My older dog used to rat on Pooh Bear (now deceased) when he would eat the cat food...Chaco would come in the living room and dance around and whine until I realized Pooh was eating the cat food again the weazel...I would have horses if I had the barn and cleared space, I have 3 acres but it's woods and rocks...anyway...gotta go to work!
Cin

[jmjm530]

Thanks.

[jmjm530]

Money said prev: "I was interested to read that type 1's with a low VL may be able to treat for 24 weeks - if clear 4 weeks into treatment"
---------------------

Yes, indeed, and you fall well below the threshold for low viral load. One strategy then might be to risk 4-weeks of treatment and run your PCR. If it comes out non-detectible, then treat for another twenty weeks and be done. If it comes out dectible, then quit to fight another day, keeping your losses small. In this scenario, I'd probably use whatever Pegalayted Inteferon the study was based on.

That said, 24 weeks can still be a very long time on these drugs, at least for many of us. Given your rural situation -- should you decide to treat -- you will really need to give a lot of thought to back up plans in case the treatment incapacitated you to the point of not being able to drive around the kids, etc. Many people work and live normal lives through treatment, and other are unable to work and have to significantly modify their lives while being treated.

Whatever you decide, take your time and once you decide, don't look back only forward. The right decision is the right decision for you.

-- Jim

[Forseegood]

Hi, this is only my two cents, you'll get quarters here! This is a big cr**p shoot either way for someone like you, with great reasons to treat and to "watchfully" wait. I do have symptoms (mixed with menopause) so that's why I'm on the fence,(I have stage 1 damage) but with someone like you with no symptoms and such great stats, your age, I'd wait.

One thing I hate to bring up - because so many people have treated, are treating or about to treat - they just don't know the full extent of the damage the actual "meds" can do, even if you do achieve SVR...over the long term. And we're talking about a 50% chance of clearance for a geno 1. These meds haven't been around that long. So the body manages to "right" itself after treatment...how long will that last? Especially for the geno 1s having to take them for a full year or longer? (It just stands to reason the longer you take them the more potential for bodily damage that "might" manifest later on, one would think.) Have the meds themselves caused damage that being an older age would manifest? Believe me, these are questions that many of us don't really address because what's the point if we have to take the drugs anyway, it's always best to be positive...I'm just not sure you have to.

It's also a question of windows of opportunity. If you were older now your window would be smaller, but you're relatively young. And of course the flip-side of that is that you have a greater chance of clearing the younger your immune system is. Add to that the question of these new less harsh drugs and when they are coming on the scene, they'll be available a lot sooner if you manage to get on a trial... So welcome to "The Great Dillema" we low to no damage people have to face.

In terms of low bx grades...a lot of this will depend on who you talk to as well. The people who are happy and cleared and have gone on with their lives as usual will tend to be much more protreatment... obviously. Whereas others who have been negatively affected by the drugs and haven't even cleared will tend to be a little less encouraging about them, after all, they could of waited.

Some of this will depend on yourself of course...are you the type who will be able to withstand the worrying that is inherent in the "watchful waiting" course? Can you be relatively "serene" about it all over the long term? Or would you feel much better about the decision of just going ahead and treating and getting it over with? How tolerant will you be of the discomfort that will "probably" come about in undergoing treatment? Let's be honest here, many people experience side effects, some pretty harsh, though there are some who report they were negligible and many say they were doable.

You can at least afford to ask yourself these questions beforehand, others who are at higher biopsy grades unfortunately don't have the luxury. As has been said, you will get a lot of support and experience here, good luck in whatever you decide. Just one woman's opinion.

[new-sojourn]

All I can add is:  you are in a good position to tx.  You don't know what kind of insurance you will have in the future or whethter you can get insurnace in the future w/the hep c.  You also will never know how much it effects you until are rid of the virus.

People who were infected @ birth and have never done drink/drugs are @ very advanced stages.  A friend who did not treat b/transplanted went from new perfect liver to a stage 3 in less than 10 mo.  Many women who have waited and watched found their damage went thru 2 or more grades/stages in a matter of yrs.

And anyone who is infected now and doesn't think the virus and its presenting symptoms and accompaning damage isn't impacting their general well being and overall mental, emotional and physical health is an idiot!

Beleive me, I too thought that I had no 'symptoms', and I was end stage.  B/being 3yrs svr, I can't believe the differece.  It seemed for a yr or so, all my old wounds-broken bones, etc-rehealed.  I actually became the person I always knew I was.  The emotional and mental benefits and stability and serenity almost out weigh the physical benefits.

Would you let your child live w/a progressive, fatal disease b/c curing it would not fit in w/your lifestyle-that's all that's holding you back-percieved changes in your current lifestyle.

And Teenagers are much harder than small ones.  And much less sympathetic than younger ones. So tx won't be any easier when you are really sick and the kids are older.

[jmjm530]

Forsee said prev: "These meds haven't been around that long. So the body manages to "right" itself after treatment...how long will that last? Especially for the geno 1s having to take them for a full year or longer?... Have the meds themselves caused damage...  Believe me, these are questions that many of us don't really address because what's the point if we have to take the drugs anyway..., it's always best to be positive...I'm just not sure you have to.
=======================================

Funny because I had this same discussion with myself this morning as I indulging in a little self-pity reflecting on what treatment has done to me this past six months. Being run over by a truck is a good analogy.:) But as stage 2-3 I'm at peace with my decision whatever happens. After a lot of thought and years of delay it seemed "time" to treat regardless of the risks. But frankly, I just can't see how all these drugs in my system cannot leave some sort of long-term scar. I truly hope I am 100% wrong.

MoneyPenney -- Forseegood says it very well. Take your time and get real comfortable with your decision because it does have ramifications either way.

-- Jim

[friole]

I will probably have my blood draw on the morning of the 7th - that will be exactly 12 wks peg & copeg.  The 4-week PCR took almost 2 weeks to get back (boo).  Hope I do as well as you.
Kathy

[Forseegood]

aaaah...don't know for sure but I think I just might of been called an idiot, ha ha! No worries. For every person who says they know someone who progressed rapidly in stages within a small amount of time, there is another person who knows many who are in their late 50s and 60's with low liver damage. I know I do. Some have treated and not responded, some never have treated. That's just the name of the game with this disease, it's a l l over the map. We have to rely on these small studies for statistics to get any grasp of consequences, trends, variables, etc.

Believe me, if I were assured of having even and 80% chance of clearing, I'd jump on it like a monkey. Otherwise, there are many, many factors to weigh, I believe I went into it "ad nauseum" in my last post. And being a woman, my odds are better at lasting this out till the better meds come along. There is also some evidence that being a stage 1 at my age of 52 might mean that my immune system is doing a good job of keeping the virus in tow. I also take darn good care of my immune system, and I have for a very long time. That's gotta count for something, considering the new studies about anti-oxidant use and the immune system, I'll post the URLs later, it was on the AP yesterday.

Unfortunately, there is also some evidence that a person having it at birth was, by virtue of that fact, born with an immune system that was somewhat compromised by the virus. That may or maynot have some impact on the long term outcome.

This is not to say that I am not treating, depends on a few things. But like I said, I'm older than the person in question and I do have a few symptoms. Ultimately we are all masters of our own ship. My heart goes out to all who suffer with this disease, let's hope that soon we have more options available to us all, and that we all hold together as a community to help one another, we're not getting a lot of help from the outside, maybe you've noticed. Peace and love to you all.