Stamina (lack thereof) with Hep

[susan400]

I was just wondering from those of you out there that have been off of treatment for a long time, who did not clear, how your stamina is doing.  I don't know if I'm wording this question right, brain fog? I don't know..  Anyway, I've been off treatment for 3 months and exercising daily for the past 6 weeks and I haven't really seen any real improvement in my stamina.  I don't ever stay off of treatment long enough to find out so, I thought I'd ask some of you other non-responders out there that have been treatment free for awhile.  I guess I'm expecting too much.  Anyhow, let me know.

Susan

[Califia]

Blueness--where would great music be without it?   Just proves you have a sensitive soul, my friend.  Have a restful weekend!

[scruffy]

You've reminded me of a couple of sides I had forgotten about during tx.They seemed minor although a bit scary. The headache in the morning very likely was dehydration during sleep.(as you say)The scary thing was a bit of numbness in the lower extremities and wondering if it would worsen. It did'nt worsen and it's completely gone now.I hope the same will be true of you and your neuropathy. I feel very good though occasional fatigue and the odd depression out of the blue(blueness?).
It certainly looks as though Paul Stamets is THE mushroom man judging by a quick Google. I will investigate. Thanks for the info and continue to enjoy the garden and the summer. Life is sweet sometimes. frank

[Califia]

Go figure!  Things are not too shabby this 51st week and I'm just cruising along, which is why you haven't heard me squawking too much.   (Well, that and my amazonian tendencies.)    I slipped into anemia about three weeks ago, which is always unpleasant, but weekly Procrit has me feeling almost like a normal person.   Am spending very little time on the computer and a whole lot of time in the garden.  Definitely have some neuropathy going on in the lower extremities--feets don't fail me now--and wake up with the usual nasty headache that probably could be avoided with a little IV hydration through the night, but all in all I've really got nothing to complain about.   Of course, as a txing friend always reminds me, our expectations are not exactly high right now.    But no matter,  I'm pretty satisfied with how things are going.

Btw, Jay Emmons (fellow hepper, good guy) runs a non-profit supplement business at liverfriend.com.  Excellent quality, wholesale prices.   He's also losing his shirt doing it, but that's another story.  His mushroom powders are definitely A+.   Also, you might want to check out the Paul Stamets site.  Are you feeling okay these days?  

[Micro2]

copied from earlier post

  
micro2
05/30/2005
C1  . I did not clear the virus and had tx for 18 months. I currently deal with depression, mental fog, chronic fatigue, memory problems, and numbness and tingling. Other than fatigue, I had none of these issues prior to tx. I have been off tx for 1 year now. I am currentl in the process of being physically and mentally checked out for why I am this way. So far, I have been labeled with chronic fatigue syndrome, secondary fibromyalgia, depression, and a herniated L4 disc. I am in physical therapy, mental therapy, under a psych's care, and awaiting blood results from a rheumatologist. I forgot to mention the many joint and body aches. My docs will not let me go back to work yet, and there is no job to go back to anyway. It has been said that I will never be able to do the high stress work that I used to do. I have been on private disability since 9 weeks after tx began. I have been denied SSDI 2 times and will be going before the SS judge for a 3rd try soon. (this is required by the private disabilty ins co.)It has also been strongly suggested that I have post traumatic stress disorder from tx. After studying this, I am inclined to agree. I AM improving SOME, but its extremely slooooow! This is definitely not everyones experience,but there are truly others like us. As far as HepC goes...we are awaiting new meds...I can no longer tolerate ribavirin. This may sound devastating but I am much better off than lots of people in this world and I am learning to make the best of my life and deal with it!! God Bless. Michael

[Moeymitt]

My Doc ordered that test for me and the results came back the same as yours, I took it to another GI and he said not to pay attention to that test, go by liver bx. I am waiting the bill......

[scruffy]

Steve, good of you to post that info-could be very important to some. Good health to you.

Califia, maybe I'll give the cordyceps(sp? CRS)a try myself. Thanks for the info. Be strong but lean on us too. frank

[ellissg]

Can't have a biopsy...............Coumadin.......high risk of bleeding. There was no way to gauge my fibrosis prior to treatment.....VL 5,000,000, cleared at 12 weeks, but VL 120,000 at 24 weeks. Geno type 2.

[Califia]

You know, sometime's denial is a fine and good thing.   Maybe it's just time for a long sabbatical from interferon and hepatitis worries.   I lived with minor bridging fibrosis for fifteen years, that was my starting diagnosis in '90, and yes, I had to work overtime to keep my beleaguered immunity up and my stamina strong, but I did not end up cirrhotic.   It DID take me a couple years to fully recover from Intron-A, so I think I know what you're feeling like.  Your frustration with lack of progress is certainly understandable.   (My first round of interferon did nothing to improve my fibrosis, either.  Aaargh.)    But....you have a life to live, in spite of this hitchhiking virus.  One precious, finite, and wholly unique life.  Maybe you and the virus can declare a truce for a while.  In the meantime, there are safe, natural substances that contribute to building stamina.   Check out CORDYCEPS mushrooms,  which are frequently recommended for people dealing with the fatigue from liver disease.  Cordyceps powder, at the amount of a gram a day, absolutely helps with energy and oxygen uptake.   I've taken it regularly myself in the past, and to good effect.    Anyway, just a serving suggestion.   I am wishing you the best, kiddo....onward and upward!

[susan400]

Same here, LuLu.   I've tried them all, too.  I would like to, just once, have a lab result come back and say, undetected.  Even if it didn't stay that way, it would be nice to at least here it once!  As far as I know, I haven't reached cirrhosis yet.  My last biopsy showed beginning bridging.  Frustrates the living daylights out of me since I've heard it said that treatment slows progression, reverses fibrosis, etc.  That has not been the case in my saga.  But, I'll not give up trying.  I'm just too stubborn I guess!  Well, thanks for writing.

Susan

[Lulu2005]

Susan, I have been off treatment for 18 months and honestly I feel no better. But I have cirrhosis so am pretty sure that is why I feel so punky. I also never clear no matter how much or how many interferons I try.

[snook_man]

What level of fobrosis did you have before treatment? I thought I remembered you have significant damage?

[ellissg]

The forum isn't accepting new subjects, I'll post this here.

Be very careful if you use Fibrosure as a test to determine Liver Fibrosis Stage. Lab Corp uses six markers, the main one is Haptoglobin. Since mine was very low, they diagnosed me as being "F4-Cirrhosis". They did not know that I have a Mechanical Heart Valve, Aortic, which causes this exact test result, a slight case of Hemolytic Anemia. No questionaire was required before my blood was drawn. My Doctor didn't order this test. I did it on my own, and he is the one who explained wah the false result was shown.

After a Sonogram, CAT Scan, and MRI, it has been determined that there is virtually no scarring of my Liver whatsoever.

Also, this test isn't FDA approved, so I had to pay the entire cost.

Steve

[ral]

I have been off tx also for about 1 yr and feel very strong. Sometimes I get down but as life moves on we go thru problems and as you know that could bring us down anyway so I don't blame everything on HCV

Take Care

Bob L

[scruffy]

I've been off treatment for just past a year and have returned to pre treatment occasional fatigue but otherwise pretty good. Must admit also occasional depression but don't know if that's a treatment leftover or hcv. Excercising though and generally feeling  pretty strong and healthy. Life ain't for the faint of heart is it?
to your health, frank