Two years off treatment and still suffering!

[Frank J. Perrotta]

My therapist suggested I start looking for answers on the internet again...

I have been cured and off all meds for two years but still suffering and do not know where to turn.

I have been diagnosed with Chronic Fatigue, Systemic Yeast Infection, crazy weight gain (50 lbs), gurd, muscle weakness and the list goes on and on!

At my last liver docs appt they "apologized for destroying my life" and said that maybe I would recover in 6 or 7 years. They gave no suggestions for a speedier recovery saying my system was in chaos. This was at the University of Pittsburgh, UPMC.

Cleveland Clinic is somewhat nearby but whenever I tell my story no one seems to believe me or have any answers. It gets more exhausting and depressing with any new visit.

I am sorry to leave out details but there are just sooo many blood-tests that are a bit off I would not know where to start. If I can add any to this please ask.

frank

At my SSI re-hearing the work expert concluded that there were NO jobs for me due to medical poisoning and the need to sleep every 4 or 5 hours.

[MiserableMS]

Have you tried the drug Nuvigil ? I take it and a B 12 shot every other week. Nuvigil every morning it seemed to help me some but I can relate to the post tx symptoms especially the headaches I just know my boss is going to fire me any day now. I took the treatment had a low viral count around 12k and geno type 2 I took it for 2 months and thought I was gonna die. The doctors were pissed because they wanted me to take it for 6 months. This was dec 2010 and jan 2011 they said I was throwing away a chance to be cured of the virus by stopping so soon. Well 9 months later I m still feeling like crap and thinking maybe I should go back through it again. This time I changed to a doctor closer to me at  university in Jackson ms. I go over talk with her and we do the test it comes back a couple weeks later nothing. No viral loads I we run it again and then again in 6 months same thing. But my thyroid is still screwed up and the headaches are  constant. So I can't imagine taking the treatment any longer than I did. I think it would have killed me. But you can't get one doctor to say anything bad about the drug. The fatigue when I can make it to work I collapse when I get home and the weekends are spent  in bed resting. This drug didn't save my life it stole my life.

[greyeyes259]

I myself have had the treatment over 3 years ago now.  I ended up with fibromyalgia, my illeostomy developed problems.  I've heard from others who when were on treatment developed gambling problems.  The list goes on.  It's tough when people think it's all in your head.  There is no magic cure like everyone thinks.  It's going to take a long time for all of us to feel somewhat better.  And you really are never cured 100% of the Hep C your viral load is just not detected in the blood.  Once liver damage occurs it takes a long time for it to reverse if it ever does.  Once it's done it's done.  Keep going and do what's right for you and beleive what your feeling is real.

[charm27]

this post is from a year ago. many of them have been since yesterday????

[Lady Lauri]

I did not get thru all of this, will later, have to run, big day ahead :)

I am very sorry to all suffering post tx. I did 24 weeks, a mth. off and no better yet, but sure I'll get there.  Point is...even 'only' 24 weeks and my body is playing hell to recover. All of you that do the longer tx's go thru a lot more 'damage' (of course) and especially those over and over. I have seen, in reading here, that all too often we end tx and they are done with us! "your done, have a nice life' and than people have to go to their GP's to get help, them not knowing a thing about tx or the drugs, and it's very difficult. Than for those with no insurance, what do they do? My sis in chemo for cancer was told at Shands that they are starting a program with Dr.'s to treat any chemo patients as their issues/problems are different than a 'normal' patient, etc. I think that's long over due and a great thing! Other than continuing with your liver specialist, GI, any post txers have that problem. How can you ever really determine what was caused by these drugs, isn't and so on. It's just a huge puzzle and you suffering need answers!
   Sorry your all suffering still. DD and Frank....really hope you find answers, solutions, get better. It has to be incredibly frustrating for you. Before I was finally, properly dx'd with the Hep C, going to Dr. after Dr. being told "your depressed, your fine, maybe this or that" KNOWING something was just wrong, drove me nuts! To finally get an answer was, while crushing, such a relief! I hope you get answers, healing somehow.

LL

[fretboard]

I'm really sorry to hear that you are going through so many problems after sucessfully beating down the dragon.  I'm sure someone has mentioned this already but alot of your issues are similar to fibromyalgia.  Hell, there's over 100 posts here and I can't read every single one.  I too have suffered from gerd, it's ugly but it's certainly managable.  Also you said you gained 50 pounds, well are you a larger man than you were before you started treatment?  It must be terrible to be in a position where you can't figure out what is going on or what is going wrong.  You also mentioned your therapist, I've had one of those more than once.  If nothing can be found physically then it could be something else.  If something is bothering you mentally it could manifest itself physically and if something is bothering you physically it could manifest itself mentally.  Keep this in mind if you haven't already, without knowing your full story I mean your full medical and mental history it's very difficult to help you and I'm sure you figured that out by the many responses you've received.  Oh there I go again, it's very possible that you shared a full mental and medical breakdown on one of your responses, my bad.  Well I hope you find out how to help yourself, or how you need to be treated medically.  
God Bless  

[Frank J. Perrotta]

Hi merryBe,

To be honest I cant recall about the estrogen mentioned above = crazy brain fog makes it lucky if I remember why I stood up...

Anyways, my estrogen is slightly elevated. Estrogen, Total (Serum) = H136 with Range: 130 OR Less.

I am NOT on any estrogen therapy but there has been talk of that???

They just ran a million tests but I cant tell you if the specific ones you mentioned were done most recently. The nurse called and said most the tests came back negative but my iron is a little LOW (I dont have the number) and that I probably need iron shots.

What is making me really crazy is the weight gain. Even during treatment I was extremely active and ate well but gained weight. The nurse finally put to rest that NOT everyone loses weight on TX. She said gain vs. lose is about 50/50. My gynocomastia is out of control too. I am currently on about 1200 cal and either maintain 230lbs or gain a pound or two / month. Really crazy stuff!

I will ask about the tests you mentioned Thursday.

thanks for the caring post,
frank