Advice on current condition

[DSG]

I'm a 58 year young male.Outside of being diagnosed with HCV 5 years ago I'm in excellent shape.I'm 5"10 190lbs with a 34' waist.I go to the gym 4 days a week and bench press close to 300lbs.While my endurance is not what it was that could very well be due to age.

Anyway,I'm a geno1 and had my first bio 5 years ago and it came back 0.I had my last Bio last week and I'm waiting for results.I eat very healthy,no alchohol,don't smoke,and little red meat.

Having said all this positive stuff my Viral load has gone from 1 million to 33 million in the past 18 months.My doc says there is not necesarily a relationship between my VL and degree of inflamation of the liver,hence my Bio last week.

Like most,I do not want to start meds at least until the results and side effects have improved alot.My doc says if the results of the bio are less than 2 then he would not recommend meds given my physical condition.

My alt and ast are slightly raised.

So,in advance of my results I'm hoping to get some thoughts as to what the board thinks I should do given the info I have provided and under various results from the Bio.

Thanks in advance..Dave

[DSG]

Thanks very much....a wonderful Xmas present.

[DSG]

Xmas comes early for me!!!!!!!I just got my Liver Bio tests back and I ecstatic...I was stage 1 five years ago and I'm still Stage 1 now...so,it seems the virus has not progressed in 5 years despite a VL of 33 million and higher than normal enzyme counts.

The doc called and said i didn't have to worry about going on the meds anytime soon..such a relief.I guess there really isn't a string relationship between VL and degree of liver inflamation.

I would be so appreciative of any comments...this seems very good news to me but would appreciate any candid comments or remarks....now,I will celebrate with a big bottle of Green Tea!!!

[DSG]

I think you must consider a couple things regarding the mosquito question...First,the mosquito would have to initially bite an individual who was carrying the desease and second infect another person within the mosquito's lifespan...which is not long.

Second,we all know there are alot more individuals who have the desease that are not aware of carrying it thean those who have the HCV and are aware of it.

Theoretically,it just seems to me that if the mosquito sucks the blood of an HCV person and bites another person that it could infect the bitten person.....I'm no doctor,but in theory it seems possible.Also, given the fact that there are so many HCV infected people who have no idea how they were infected.

[vegas777]

you are truley an inspiration to me...I too have decided not to treat with current drugs available...Best wishes to you!

Beth

[DSG]

Thanks Sheila for your caring words..Dave

[sheann]

I am an almost 70 year old woman, I have worked out for 25 years now, and will not do tx.  I told my story in the thread regarding whether to treat or not.  For me it is NOT.  That being said, if my bx was a 2 or higher, I would probably at least try.  At the Stage 0, Grade 1 I am at, I think I will outlive the disease naturally.  I am still hoping for a less damaging cure though and will try not to give up on that before my time is up.  I continue to at least walk most days of the week and do weights 2-3 times a week, I eat right, not a pound overweight either.  I hope your bx turns out good and will allow you to wait until kinder drugs come to market.  I have been in several trials and will continue to offer myself up to science once they get past the efficacy and safety stage.  Are you near a major university hospital?  If so, check out the trials there, you just might find a way to go and one of these days, one of them is going to work and all these forums will just fade into the sunset.  

Love,
Sheila

[NYgirl]

Dave

There are a bunch of people in here who don't know exactly where they got the disease.  When I was dx'd I went CRAZY trying to figure out where I got it until I realized it didn't really matter the only important thing was I found out I did.  How lucky is that, I mean I never had any symptoms or anything!

I used to drink quite a good share (mine and yours both in fact haha).  The thing that sticks in my mind now was seeing a picture that had the differences in Stages/Grades of liver inflammation/fibrosis.  Yuck. I was astounded!

I think you are VERY smart for realizing that right now your energies are best concerned for killing off this disease and fighting it every way you can.  

Lots of us in here have a LOT of physical things that have nothing to do with the disease (I broke my back in a car wreck in '93 when I was rearended while at a stop light for example).

Lots of people with different ailments and pains and tx doesn't make it any better for sure.

but I intend like you - to fight this fight with my whole being.  Maybe it's because I am a crazy New Yorker but...I am so pissed that it's inside me that I want it OUT and intend to kill as many of these suckers off that I can!  They have no right being inside any of us!

Death to the suckers!!!!!!!!!!   :)

Debby

[couldn't think of a nickname]

Yeah, then they ask the person who just turned 105 what their secret is, and they say they smoked cigars every day, and had a glass of brandy with their bacon and egg breakfast.

[DSG]

Me too..I have used it for years and will continue.....Is there anthing in the world that someone cannot find fault with???The older I get the more I realize this.

[couldn't think of a nickname]

My wife uses soy milk in her protein shakes every day, but she ordered this book on health and food, and it was very critical of soy in general. First, it says that Asians eat the right kind of soy, which explains their better health. Dr. Mercola says it is high in "antinutrients", and inhibits good digestion. He also says it contains hemaglutinin which can help blood cells agregate, goitrogens, which can affect thyroid, and phytates which prevent the proper absorption of magnesium, calcium, iron, and zinc. Some are acid washed in aluminum tanks, which can lead to metal toxicity.

The name of the book is "Total Health", and we were quite surprised to see that.

[GoofyDad]

Interesting discussion on the muscle atrophy. I'm on week 14/24 - and I used to swim 3-4 times a week before starting treatment. I've only lost about 3 lbs overall in 3 mos - but it's amazing how quickly my arms, chest and thighs got skinny. I guess it's all collecting around the waistline :(

So many people comment on my weightloss, but I guess it's just muscle shifting out of the visible areas.

Thanks fo the tip on prunes, Dave. I just had 3 bags for breakfast, and I'll do a few more for lunch and dinner. Hopefully that's going to make a big splash!

[cuteus]

NO, there has never been a reported case of hcv transmitted by mosquitoes. They are still trying to prove it with HIV. You can get it from dental tools and colonoscopies and just about any medical tool that is reused after "sterelization".

When I was treating and cleared, I was doing the Summer run series in the State park, I went to join the runners at the start line and went through the bushes as a shortcut. I got scraped by a branch and it cut through the skin causing some bleeding, many folks had already walked through the exact same spot and many more did after me. There are hundreds of people at these runs, who is to say it can't be transmitted by that pesky branch?  You just never truly know.

[iceboy]

Welcome to the forum DSG

is there any one knowledgeable on the moscito issue. They are not supposed to be able to infect HIV. I have never understood this. I mean theoreticly, they spit in salvia so the blood wont clock, and suck the blood, so isn

[beamishboy]

i'm w/ nygirl--i want the virus GONE..........regarding muscle loss:i am losing muscle tone pretty fast! but i am really lazy on trx & that's most certainly the main culprit..Bench pressing 300 lbs now???!!!!!--Just eat yur spinach & blow that vrus outa yur pipe-heh,heh,heh
  i yam what i yam-------,good luck

[NYgirl]

Viral load is not necessarily an indicator of what shape your liver is in.  I started with only a 500,000 vl but I was stage2/grade2.  I am glad you had a biopsy because there really is no other way I could have made my own decision.

If your liver is not very damaged you probably can decide to put of tx for a while.  I decided to treat and have never ever regretted the decision. I want this out of my body in a big way!

But if I had been a 0 it would have totally had a bearing on my decision.

Let us know what results you get.  The guys here are great for asking questions I wouldn't have made it without them. It's saved my life in so many ways.

[DSG]

No..the loss of muscle is a small issue and concern relative to eradicating the virus...I just was not aware that Interferon was so harmful to the muscles.

[couldn't think of a nickname]

The reason why I am not expecting it, is that this initial p2 trial is only 12 people, 28 days, and after 28 they will be rolling over to SOC. Therefore, I think it will be a better indicator of undetectability than SVR. Since there would be a 3 month follow up for SVR in p2, the minimum amount of time assuming a 1 month trial is 4 months. So, JMHO, that it would be pushing it. I think the other trials might be better for that. I would have to recheck it too, I could be wrong. I guess mentally I wasn't looking for SVR data that soon in 2006, but if they had it, I would of course, welcome it.

[jmjm530]

Don't want to come up "short" again LOL debating with the expert, but I was pretty sure Vertex's last web cast talked about preliminary SVR data in the second quarter of 06. I'll try and find it later or maybe you have it at hand.

-- Jim

[jmjm530]

I hope I'm not scaring you off of treatment on the muscle thing alone. If you have to treat, losing some muscle temporarily is a small price to pay. But given your stats, I'm sure you could still kick sand in the face of most not on treatment. LOL.

But, yes, there are sacrifices we all make when we decide to treat. Spend some time here (don't forget to check our archives) and on other other boards like "Janis and Friends" or "Hepatitis Neighborhood" reading as many posts as you have the time. It will help give you an idea of what people go through on treatment.

-- Jim

[couldn't think of a nickname]

I just wanted to point out, there will not be SVR data then, I don't believe. The trials for SVR data haven't started yet, so it might not be until the end of the year.

[DSG]

Wow,,thats a huge weight loss...how much of that was due to loss of appetite and calories...I figured I might at least be able to throw down some protein shakes for the nutrition but then,I might not be able to keep it down.

Do you try to workout or were you just to weak and ill??

Exercise has got me through alot of hard times in the past and hopefully I would be able to workout at least at some level.

From what I understand the effects of the meds tend to vary alot from individual to individual.My doc said that given my existing physical condition the effects on me might not be as bad as others.

At any event,I'm hoping the bio results allow me to buy more time..I'll know very soon..thanks.

[jmjm530]

I started treatment at 176 pounds and was down to 150 pounds three months into treatment. Most of the loss was muscle. My doctor says this is very common with men. No one can accurately predict when the newer drugs like Vertex will be out but I've spoken to some doctors involved with the trials and they're talking 3-5 years at most should the drugs prove themselves. That said, trials for first-time treaters are starting right now so that's always another possiblity.

-- Jim

[jmjm530]

I'd just add that whatever your biopsy result -- unless you're a stage 4 -- you might want to wait until the second quarter of 2006 before making a final treatment decision. By that time, hopefully there will be some preliminary data on a new trial drug called Vertex that will help clarify whether or not it keeps the virus down once treatment is over. What they should have by then is wha'ts called SVR (sustained viral response) data.

-- Jim

[DSG]

Thanks for your comments..I did not realize interferon had such an adverse effect on muscle tissue...being that I have been an athlete and bodybuilder since I was 15 it would be especially difficult to see my strength and muscle tone decrease almost week by week....at any event,I'm hoping next week will bring me good news as far as my bio and I can hold off meds til much better meds are approved...Dave