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

[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

[NYgirl]

LOL NO you are CERTAINLY no Popeye!  :)

However you do look to be in phenomenal shape that is not debatable.  I have to figure that it will help you big time with the disease somehow.

Have you always been such a health nut?  I have always been thin and worked out but sadly ever since I last saw my twenties (a few years ago - (what a liar I am) I've not taken the time to take care of myself as I should.

One good thing about this disease is that I have found out again that this is the ONLY body I've got and taking care of it is REALLY the utmost priority.

It's nice to mee you Dave - there are so many fabulously caring people in here in the same boat it's mind blowing. And so lovely NOT to be alone on Hepper Island any longer!

Debby

[DSG]

Thanks Debbie for the kind remarks.I was your typical 90lb weakling up until I was 15,a few years ago...see,I can lie too LOL.I started lifting weights and have never stopped.I'm paying the price today of lifting very heavy weights as I have advanced arthritis in my right shoulder and very limited range of motion.Just putting on a belt can be a struggle.I also have a large bone spur which feels like a dageer in my tendon when I move it the wrong way,I had arthoscopic surgery 5 years ago to remove the scar tissue and the bony cyst.I went through 6 months of rehab which helped but now the cyst is back bigger than ever.I can't throw a ball overhand and can't lifts weights over my head..so,my exercises are confined to bench presses,curls,dips etc and of course all the ab and leg work i care to do.

One day i will have shoulder surgery but thats a long rehab and my energies right now are on the Hep C..if I get a good bio report I may consider the long and laborious shoulder surgery.

I have eaten very healthy most of my life...I had 1 bad fault and I was a heavy social drinker...that stopped immediatelly when I learned I had hepC...I used to have an occasional beer or glass of wine but when my VL went to 33 million I totally stopped.

I have no idea how I got the Hep..no transfusions,no tattos,no drugs etc..someone told me it could have been from a mosquito bite..we have lots of those in South florida in the summer time and they have always seemed to like me alot...never heard of that as a possibility but I suppose if a mosquito bit an infected person and then bit me it would be possible..Anyone ever hear of contracting the Hep c through a mosquito bite?

Nice meeting you too Debbie.

[DSG]

Best to you debby...nice to meet you..talk later,Dave

[jmjm530]

I agree with your doctor.

Just make sure if you decide not to treat to stay with what appears to be a very healthy lifestyle and be followed by your doctor on a regular basis. You might also want to take a yearly Fibrosure test and yearly Fibroscans when they become readily available in this country which hopefully will be in a year or so. As your doctor may have told you, better treatments are hopefully on the horizon. BTW using my treatment experience as a guide, you'd be lucky to bench 100 lbs by week 24 of treatment. Interferon loves muscle tissue alsmost as much as the Hep C Virus. LOL.

-- Jim

[cuteus]

Hi DSG, welcome.
given your age, and the fact that you are in fairly good health, chances are that your liver will not deteriorate rapidly. Of course, there are people that no matter what they do, be it good or bad habits, the body will not follow the average statistics. Some with bad habits will still be well, and some with good habits will progress to severe damage, I think genetics is the foundation for the response, and maybe the quasispecies of your particular strain. If you are not at stage 2 or above, new drugs might be available in 5-7 yrs according to some hepatologists, but no one knows if the side effects will be better  than present meds.
If you choose to wait, watch out for other HCV related conditions, since this virus is a blood disease, not just liver.  To learn what other conditions to monitor, do a web search of extrahepatic manifestations, if you have not done so already.

good luck on the results

[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

[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

[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

[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.

[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.

[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

[DSG]

Yikes...didn't mean to post my entire gallery LOL...just under dave...photography is my passion,my obsession...it gives me so much peace and satisfaction.

[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.

[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.

[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.

[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

[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