post tx interferon induce chronic fatigue & valycovoir

[wings]

Henry

You are so right in an individuals illness and how it affects all of us differently.  Yes we are on the same page.  I was tested for CMV and I believe it was negative.  The Epstein Bar and HHV 6 came back high and active.  I had my daugther tested then, and then it became puzzling, she test much higher than I did.  The question then was why do I feel like I cant get off the couch.  If this was the culprit not the hep C or the interferon tx than why cant I do a day worth of work.  Doctor just stated they really couldnt say, it is a theory.  It is something, at this point and got a doc to at least attempt some sort of treatment.

So I have been on the tx of valcyte since Oct 08 and it recommends six months only since it hard on the liver.  I felt it has helped but then I just had a four day on the couch and I am on the upswing again.  I look for getting through a day and not do too much to keep the stamina level up there.  I do feel the brain fog continues, sometimes really bad, so I am cautious about what I say and write.  I dont understand why the body can no longer kick in after all this time.  The valcyte helped with the fatigue and the migranes but it also in conjunction with not doing what I would normally try to do. 

I am waiting now to get appointment with univ of penn to see if they can help.  I am looking for a difinitive answer as to did the interferon cause the activation of these other virus or is it my liver with minimal damage due to hep C and then HOW DO WE treat to get on the road to being normal again.  I am not sure I will ever see normal again.  So I have not accepted the total illness yet, even though I am SVR at least as of today.  At least sharing gives back so much and at least gives me and others a direction to find a quality of life that we once knew.

Also we did find I was lacking vitamin D for the first time since tx so I got my answer as to the sun.  I have been out in the sun to get that under control.  We did have a month of rain and clouds along with obivouly not a good diet or lack of.

sheila

[wings]

Cheryl

I worked on treatment from home for two years with the greatest difficulty.  I would nod off at the computer.  After I realized I would work and then crash and get up do it all over again day after day and not getting any better.  I finally went out on disability early retirement, thinking I would return eventually, it has been 3 years and still searching.  I am finding some people do get back and can hold a job.  Even with my A personality I could not and had to come to grip with that.  So it has been just trying to find away to get back to me.  The process has been very slow and totally contridicted the doctors statement that I would be fine after one year.  You have the RA going on with it so I am sure that impacts your healing.  I would definitly get tested for the various CFS virus that a CFS specialist would run as Henry had stated.  There is about six virus test that they run to see if that is contributing factor and then valcyte and gama tx is one that they might try.  Ampligen is one tx but still not approved and right now my doc is not hearing good results with that. 

sheila

[pete c]

  HI Wings

    Just got done reading your post and man God love you   hang in there sunshine  I,am sure some thing will come along that will help.
   I know when i first thought about doing TX that was one of my bigest concern what are the lasting side affects, And not to be rude but i,am greatful that so far so good.  I do know how the cf feels  that the way i was during TX   yet on the days i felt good it was all out on the run  then flat on my back for awhile.  You hang in there sunshine cause i know in my heart that it,s going to work out for you.                                                                             pete

[wings]

Thanks Pete

I am on the gamastan (a serum to boost IGM immune system) and valcyte to keep the so called baby virus from reactivating.  To me its a long shot that doesnt seem to be putting me over the top. 

My husband is seeing the bigest difference.  I went to sitting on the couch (I can bath dress sometimes clean a little) from the past (before tx) to decided to redecorate and would rip out walls, I was very good with a hammer and the flat bar.  My favorite tools.  I dont do anything with him anymore.  Once and a while we would go on the boat and fish or I would grab my fishing pole and go by myself.  I live close to the beach and love surf fishing.  I also hunted.  He lost his sport buddy and I cant do a dam thing about.  I am trying but I am disgusted at this point.

I am looking into natural brain food (vitamins)  even though I am not that hopefull but that is ONE THING I CANT DO IS GIVE UP.  But it has been three years.

I am here and cleared and I am existing but that is about it.  So if I sound so cloomy.  But I see I am the 25% that end up like this, I refuse to give up.  But IT SUCKS.  I am so happy when I hear someone made it through and comes back to normal status, hey we all cant have everything I guess.

sheila/wings

[wings]

Hey all

Anyone that still might be facing the fatigue:  Stopped the gammastan injections due to not doing anything anymore except causing much pain in the legs.  Looked like the blood cloting factor was going up (too much) with the gammastan.  The valcyte I have been taking every other day.  Not sure if that is doing anything.  The chronic fatigue spec wants to try something else but have not been able to get to the city to see her.

Some hope is I found a endochronoligist (sp?) have appointment and he deals with chronic fatigue no matter what was the source of it, so we shall see

wings/sheila

[willy]

Sheila, I hope that you can get to the root of this and find a solution.  There is a large number with post tx sides.  I wonder if it is a result of something unique to HCV TX or whether it is also common with cancer treatment?  I think that the opinions end up being split;

Many doctors simply suggest that the post TX sides are the result of having had HCV for years

Many people feel that it is the direct result of IFN and/or RBV

Some people feel that it is the result of continued possible auto-immune issues.  This could either be the result of over-amping on IFN, a possibility that when the immune system is revved up and can't find HCV it looks for something else, or the result of continued occult infection- there continues to be HCV RNA, but at sub detectable quantities, but enough to irritate the immune system; perhaps analogous to shingles.

(edit) PS..... fibro is also a possible DX.  There is only one drugs approved but it could help.  Acupuncture helps some people.

I hope that an endo can help, but one with chemotherapy sides might be useful.  In the absence of a good DX and RX from a doctor I'd start poking around other boards such as fibro, cancer, chronic fatigue and start looking for alternative therapies or supplements.

I wish that I had a better answer.

best,
Willy

[wings]

Willy

Can I take you with me, you explain it so well.  Yep I do think the Tx and immune system is the culprit so then the million dollar question is What is the antidote?  This Endo dealt with other people with fatigue due to chemo and people that have fatigue due to undiagnosed.  All the people that have gone, had their hormones tested and was able to treat.  My problem is the test so far are turning up nothing.  So we will see if he comes up with something.

University of Penn does have a study on interferon and fatigue and I have been waiting for appointment, which they open a file and supposed to call but havnt.  So that doesnt make me feel real good about that.

I recently seen something on possible virus that attacts people that have a comprised immune system causing the mystery chronic fatigue.  It is called XMRV virus but hasnt been really proven and no fix.  Just another ah ha moment.

sheila

[wings]

Just posting an update after the visit with Univ of Penn.  Now I feel like I am totally nuts maybe it should just be called interferon breakdown.  The doc there does not have an answer as to why someone would still be plague with fatigue aches crushing headaches blah blah blah.  She wasnt aware of a study going on for post interferon fatigue.  Come to find out there is, but it was across the street,,,,, they sent me to a Gastro that only deals with during tx not after.  IT WAS THE WRONG DEPT,  So there goes a 4 month wait.  I have not got a chance to call that dept since I feel like I am chasing my tail.grrrrrrrr

Doc I see out of NYC still giving me the gamastan shots with valcyte which helps but I feel like my body is a zombie but a SVR zombie
There is a new discovery out there from the whittmore/peterson institute on XRMV virus that they believe is causing the CFS which they believe is a virus brought on by another like HEP C or any other virus.  One of the key links is being tested for epstein bar and HHV6 (which we all have the antibodies) if the viral load gets elevated (mine did)

All this means is there might be another treatment but it is another antiviral, same as the HIV drug, which I would prefer interferon myself since, for the most part, even with the side effects at least I would get a normal few days instead of none.

Life is different as it once was, cant say for the better, but thank-you Lord I am still here