post tx interferon induce chronic fatigue & valycovoir

[wings]

Susie

Yes to the doc knowing everything.  I found a new MD about 3 years ago, that sums up other folks she has trying to clean up from the tx.  Of course as she said the discovery of the disease in the med field is new to them and they dont have an answer.  She gets frustrated two.  If I can prove the study to her and she can find backup data she will give me the go ahead.  She agrees with the nattosyn.   All they can do for me is try something new and wait to see if it works.  Sort of like the guinea pig without going overboard.  I recently asked the doc for this new drug for post tx fatigue called ampligen, but the doc is holding back since she is not hearing good things about the sides.

I have tried everything within the boundries of post tx fatigue.  It is now collectively listening to people on the board and comparing.  What I am seeing and hearing from honest doc (the ones that tx'd me swear they never seen fatigue linger I should back to work)  My shrink sees different as it is not depression but he said it did mess with my congnitive thinking.  We worked together for four years prior so I have that covered.

I appears that some of clear and are great and I really have seen few like that.  I seem to be in the pool of people that didnt clear and have the same symptoms and that is what is frustrating but I am moving towards acceptance.  There is alot of us the have the symptoms and then have to deal with a bad liver.  My liver is good according to the blood work.  So it is less to worry about it is just moving towards day to day living. 

I am gratful for all opion and thoughts thanks
sheila

[negative1]

  My shrink sees different as it is not depression but he said it did mess with my congnitive thinking.  We worked together for four years prior so I have that covered.

The only thing that got me through the end of tx and post tx was my shrink. I was very fortunate in the fact that hae had treated many that were post hep c tx.
He told me that it was the interferon that affects the frontal lobe and messes with the neuro transmitters in the brain....IE. the chemicals that your brain produces....

My cognitive thinking was as yours is, but..there is hope Shiela.....I am now 4 years post and the last year has really been an improvement in my mental state and my ability tothink things out without all the confusion.

Being involved in this board and others since tx, I have noticed that women are effected differently than men with the sides. Men just don't seem to get the bone pain, headaches, fatigue as sides like women do. Just an observation.

Hnag in there.....it is really a tough thing to deal with but I do believe that the is light at the end on the tunnel. I nevr thought I would be saying this as I had almost lost hope of getting somehting clos to a full recovery from tx.

all my best
Earl

[willy]

Earl, always interesting to read your posts.  I always seem to learn something

I think I may be able to agree on the assessment about men and women's post TX sides.  I don't know if it's scientific..... since it's really about what we end up reading about what others report.  I mean.... what if men report differently than women? (even if it were the same)

One the other hand.....I often hear that men have a lower threshold for pain and are bigger complainers (and whiners too)..... and so the difference may be even greater than your assessment.   

I am also encouraged to hear that you are feeling better.  When one reads about damage it's easy to assume that it could be very long term.  (not to diminish 4 years....)

I also think that it's great that you were able to connect and be helped with post TX mental sides (Psyd's?) with an excellent shrink exprienced in that area.  Major score and a useful tool for many people who fight post tx mental issues like depression, isolating, possibly even chronic fatigue.  I just saw an article last week which claimed that fibro wasn't "real".  Oh boy.......

Best,
Willy

[Pancho and Lefty]

Hi Posters,

I think I see the post virus syndrome (self named) in myself. My take on it is that my system fought with either a latent or active virus for just over 40 years (from age 19 to 60). That activity caused some very long term metabolic changes. I see my fatigue/depression/just plain feeling funky as a direct result of there no longer having the invader to constantly ward off. Some major internal adjustments are going on now.

I see a hypo-metabolism. . . things have slowed drastically since the virus is gone. I don't interpret that as being in a depressed state, necessarily, but losing strength and stamina can bring about a 'disappointment' that could be construed as depression. It sure as hell is a reduced energy level.

The single productive approach I've found is to 'rage against the dying of the light,' that is to be physical whether my muscles react or not. The result is that fitness is returning. . .. ever so slowly.

I made some baseline test rides (mountain bike) on the local terrain just after being diagnosed last fall. I could maintain longer and felt stronger on the exact terrain WITH THE VIRUS than I can right now. . . 24 weeks post tx and 44 wks post RVR.

I don't have the money or the belief in medicine to pursue the disparity on a molecular level. I can say the only thing that has helped me regain strength is to keep exercising.

IMO, the perceived post difficulties vary according to: what level of fitness did I have pre-tx??? What could I do physically or mentally then that is difficult post virus?

I also agree with gender differences as far as ability to tolerate tx. . . particular sides experienced. . . and perhaps post SVR. Anyone here can get a basic idea by reading the post of various txers. I would really love it if more people would check in after the virus is gone. That is the single area that gets almost no attention.

The experience of having hep C is not over when the virus is destroyed. There are a lot of pieces to pick up afterward.

I'm working on acceptance and determination, along with a healthy optimism.

best wishes to everyone,

Max

[wings]

Hey All

Optimistic is a definite.  Its does get hard but there is always another stone to turn over. 

Once I came off tx I continued work and just ploughed through chores in spite of crashing for days.  I figured it would go away, like when you go through surgery, 2 months later your back to normal.  With tx they said everyday for everyday of tx and some might take longer.  Well that came and gone, so I figured I was doing too much and that is where to problem comes in.  I could take a shower and eat and be on the couch for weeks, then maybe go shopping for 8 hrs (not too many days like that) and be on the couch.  There was no definite level too much too little who knows

I find it hard to explain to anyone that has not been on tx.  We all have the fatigue, cognitive, joint pain in common (among other things) but these seem the ones that stay with most of us that been through tx and then there is ones that did not do the tx and still have the symptoms.  I have question myself as to is it really gone.  Then I make myself totally crazy.

Someone said to me it was like being on one side of the sidewalk and everyone is walking on the other side.

Earl I think it is hope hearing you feel sort of close to normal after four years.  I know probably most people dont post once they are feeling 100%, I am very gratefull to you and others that keep up with the boards. 

The good thing is I have good insurance that allows me to seek and will share but there is very limited docs and research that have any answers. 

sheila

[pete c]

   HI Shelia

    Can,t speak to much on the post stuff, I just can offer you my prayers and support my friend.

        So far during TX  I only get sides and the last about 2 weeks some times ,Yet have been Very graetful for this.

          Hey you hang in there  ,just keep in mind your on the right side of the street.


                                                                 Pete

[Kira]

I'd keep having some hope that things will improve, Shiela.

I'm about a year and a half out from tx, and I think I get slightly better each month. I've been diiagnosed with fibromyalgia, and it is far worse when it's cold outside (Northern California cold, not really cold even!).  But there are days, and even weeks, where I actually feel NORMAL!!  So I continue to have hope that it can all go away, and we can heal back to where we were before the virus.

Some of us having been living with the virus through most of our lives, and so even before, normal meant our bodies were fighting it off all the time.

Exercise has been proven to actually grow new neural connections in the brain, so it's not only good for the body, but can help us with some of the nasty left-over brain issues, which I can attest to!

So keep on moving, and think good thoughts, and I hope you feel better soon,
Cris

[wings]

Hi

Just found this in my email from Hep C and mitrocrondia    http://www.hepatitis-central.com/mt/archives/2009/01/hepatitis_c_fat.html  after reading this article maybe I should rethink the valcyte.  Geez!  It does state some from having the hep C so long and or toxicity of the drugs to combat the hep c, it does go into detail.

Kira the exercise I no longer do.  They said I was blowing out any energy that I built up.  I have to do really small like up and down my stairs cant walk the block yet(if my arteries dont harden first) If you are doing anytype of exercise you are doing fantastic.  That is great

sheila(wings)

[Jazzdenova]

My wife was labeled CFS for years until they did a CAT scan and finally discovered the Multiple Sclerosis(sp).

[wings]

Hi

I went and had the MRI which was clear.  I didnt have where they draw the fluid out of the spine area to check for MS.  Did you wife have the spots on brain?  Is she on the interferon for the tx of MS.  Believe me that was one of the first things I went after.  Only a month ago I ask for the interferon again and since they believe that is what brought it on they dont want to chance it.  Myself I would like to since I cant get any worse.  Quality of life is not there.

After reading the article from Hep C central (link listed below)  it is the riba they believe besides the hep C that effects the energy level.  If that is the case, the mitochrondria needs to rebuild and there is no test for that except if you start to get better.

Thanks for that info because each one of us have go through the numerous test to find the source.  People just dont become fatigue for no reason, as some lazy doctors like to say "oh it is in your head" translation for I have no glue because I am too lazy to look further.

sheila

[Jazzdenova]

Yes, she had spots on brain and spine, yes, they drew fluid out of the spine. She is taking Avonex which is a once a week shot. They had her on Ritalin for a bit, that seemed to relieve some fatigue but then she'd stay up too late... house was spotless though.... trouble was she wanted me to keep up with her... I help out but I am not going OCD on it after a 9 hour day at work...

[wings]

Just droping a note of status from post tx fatigue.  I have been doing the gammagloublin shots since Nov and the valcyte.  I notice not as many migranes.  I still get them but I will go about four days before an attack.  This was down from daily attacks

I am also taking supplements, one with hespirdan and NT.  Doc said it was fine.  My blood looks great and my eating is good. No pain in the joints.

Engergy level is a tiny bit better no brain power

sheila/aka wings

[wings]

I think the valycovoir (valtrex) is working in some way.  It has been six months since I have been on it.  This is been with the in conjuntion with the gamaglobulin shots every two weeks.  The gama shots appear not as profitable to the drug company so I am in a situation that the manufacture is no longer producing it.  Very strange!  The last month I was able to get on a plan with my husband and go to Puerto Rico and then 3 weeks later go to Dominican Republic.  I was very alive and no drain of energy.  I have to believethe valycovoir did help because a year ago I would not even been able to pack let alone get on a plan due to exhaustion.

There was no humidity and constant 80 degrees in the sun.  Off course it was no stress.  On both trips, I was able to remain a constant energy level, what I call no drain of energy.  No sooner I got back home and hit the cold there was a drain.

So I would have to say there was a improvement in the energy level.  I plan to take a trip to Florida and stay with some friends to see if this is something that might bring back the quality of life I like to get back to.

wings/sheila

[Lightkeeper3]

Hey ya'll,

This is an interesting read since I have been almost without energy since tx. I was blaming it on my diabetes which was brought on by 42 weeks of peg/riba. Also, I don't seem to think straight anymore. I used to be Ms. Organization and never forgot ANYTHING. I lose things all the time, forget the simplest things and am bone tired and sleeping most of my life away. I'm on short-term leave from my job AGAIN for about the 4th times is two years. Of couse, I've had RA for the last 15 years but still before tx, I had loads of energy! I'm going to have to check out this chronic fatigue because it sounds just like me. I just have not been the same since tx. Thanks for the insight.

Stay Strong,
Cheryl

[hanklive39]

Hi wings!

Your symptoms sound more, and more like CMV - CytoMeglaVirus... The symptoms you describe are very much like the symptoms I had when the virus activated after being transplanted back in 1997.

Very often, CMV is misdiagnosed as CFS or Epstein Barr virus because the symptoms are very similar...
There is a blood test for this also nowadays which eliminates alot of guesswork but if the test isn't ordered, then the seeds for a misdiagnosis grow exponentially.

I'm not a doctor, or a nurse like Robin who also had a liver transplant, and participates in this forum although I have not seen her post in here lately but, I do have some experience with chronic fatigue from a variety of sources...

I have also been on tx more times than I can remember, and I remember there was a time when I was also SVR for almost 4 years after going back on tx, and post transplant which means also that my immune system is suppressed on purpose in order to trick the very same immune system from attacking the transplanted liver which also creates the same environment whereby the conditions are ripe for activating what would in most relatively healthy folks be a dormant virus or two, or more such as: CMV, HPV, Epstein-Barr, and some other strains which are usually dormant because of a healthy, strong immune system...

When the immune system is intentionally weakened such as when taking Interferon, or immuno-supressant drugs like cyclosporine, or tacrolimus (prograf), these usually dormant virii in some cases suddenly activate, or wake up from their sleep. If the Valtrex is staring to work, then it's aiding your own immune system in fighting the viral strain that is more than likely the source of your feeling ill.

I'm glad to read that you're feeling better!!! However, do not let anyone who has not relapsed, or experienced what you have try to convince you that all of this may be coming form your state of depression... In other words, just because it didn't happen to them, or they are of a different gender so they react different IMHO, is just plain ignorance - even if it isn't intentional.

My situation is not a common situation since my immune system must be suppressed in order to prevent my immune system from attacking my transplanted liver, and therefore rejecting it. This is also why I can only be given low doses of Interferon & Riba in order to make sure that my immune system is not weakened too much in order to avoid my not being able to function as well as I do currently... In other words, a balance had to be found, and it is different with every individual.

For the last fifteen years or more, I've been trying my best to inform myself, and others whatever I could find out about HCV, and liver diseases in general...
During that time I have been literally acting like a sponge to absorb as much as I could to better educate myself, and others regarding these diseases associated with the liver, and I have learned a bunch about how my immune system works, what one's blood is made up of, the virii that surround us, and sometimes are living within us in a dormant state yet, I'm still learning everyday!!! I also used to think that Fibro was a myth too until I was diagnosed with it as well as some other post transplant friends of mine.

That is why I try my best to keep an open mind when it comes to reading up on unusual individual circumstances relating to illnesses that people encounter by the virtue that diseases affect people differently, and complications are for real and not in one's imagination.

I came very close to dying when the CMV suddenly became active and yet, a close friend who also had a liver transplantaround the same time as mine due to similar circumstances has not experienced CMV even though he has the virus which is still dormant in his body - Thank God!!! That's why I know that each individual is affected differently from the next...

They may have the same disease, and with some - they may have licked it but, that doesn't mean that they'll all have the same results health wise afterwards!!!

Respectfully,
Henry