Aa
Two years off treatment and still suffering!
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.
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.
I'm new-ish here and wasn't around at the time this thread ran back in August 2007, but read it this morning with great interest. I believe it's a subject that needs to be explored for both those that have completed tx and those anticipating it in the near future. I appreciated the personal documentation that members provided as they compared notes.
I found the replies sobering, to be sure, but not in the sense that it would terrify me from doing tx if needed. However, it did impress on me the need to explore all facets of tx, not only the sx.
I'm looking forward to your follow up posts and will be thinking of you on Thursday as you meet "The Guru". Hopefully you'll have a few more personal stories to add to your arsenal.
Best of luck and congratulations on getting your own place.
Pam
I found the replies sobering, to be sure, but not in the sense that it would terrify me from doing tx if needed. However, it did impress on me the need to explore all facets of tx, not only the sx.
I'm looking forward to your follow up posts and will be thinking of you on Thursday as you meet "The Guru". Hopefully you'll have a few more personal stories to add to your arsenal.
Best of luck and congratulations on getting your own place.
Pam
Sorry to bring back this old post but... Still suffering and I have two new docs. Yeah, another two new ones. I also apologize for not being on the forum for some time but feeling really sick for some time... I have been lurking though.
The local one, a Dr. Uberti, had Hep B and two liver transplants. His wife, a nurse, had Hep C and under the same treatment as me. She finished five years ago and is suffering many neurological problems.
The Uni Of Pittsburgh is a Dr. Rabinovitz. When I told Uberti that I was seeing Rabinovitz he was shocked that I could even get an appt with him. The guy is suppose to be the very best in our area. So, I met with his nurse last week. I went over my three pages of complaints and really shocked her.
She says that I am One In A Million to have suffered like I have. She says that she hasnt seen any other patient as sick as I am nearly three years after ending treatment. She tried to get me to see The Guru (her name for Rabinovitz) but he was lecturing.
They did do a long list of blood tests and most came back normal (as I expected). My iron is low but that is about it...
They are moving one patients appt so I can meet The Guru next week (this Thursday) and I want to bring a print out of some of the people who have commented in this post to show them that there is a large group out there suffering long term...
If anyone who has not posted their long term problems here (but maybe elsewhere in the forum) could you please add comments here so I can print them out and bring them with me to my next appt. If you have posted elsewhere maybe you can simply copy and paste your main complaint details.
I am excited to have a couple new eyes look over my case, but not much hope that they will be able to help much...
Very best news is that I will be getting my own little house very soon - maybe a move in this week. Have been very busy with that too and hope having my own place will help with my health also.
thanks all,
missed ya all,
take care,
frank
The local one, a Dr. Uberti, had Hep B and two liver transplants. His wife, a nurse, had Hep C and under the same treatment as me. She finished five years ago and is suffering many neurological problems.
The Uni Of Pittsburgh is a Dr. Rabinovitz. When I told Uberti that I was seeing Rabinovitz he was shocked that I could even get an appt with him. The guy is suppose to be the very best in our area. So, I met with his nurse last week. I went over my three pages of complaints and really shocked her.
She says that I am One In A Million to have suffered like I have. She says that she hasnt seen any other patient as sick as I am nearly three years after ending treatment. She tried to get me to see The Guru (her name for Rabinovitz) but he was lecturing.
They did do a long list of blood tests and most came back normal (as I expected). My iron is low but that is about it...
They are moving one patients appt so I can meet The Guru next week (this Thursday) and I want to bring a print out of some of the people who have commented in this post to show them that there is a large group out there suffering long term...
If anyone who has not posted their long term problems here (but maybe elsewhere in the forum) could you please add comments here so I can print them out and bring them with me to my next appt. If you have posted elsewhere maybe you can simply copy and paste your main complaint details.
I am excited to have a couple new eyes look over my case, but not much hope that they will be able to help much...
Very best news is that I will be getting my own little house very soon - maybe a move in this week. Have been very busy with that too and hope having my own place will help with my health also.
thanks all,
missed ya all,
take care,
frank
I started to have health complaints decades ago. I was diagnosed with HCV. That's when the doctors stopped looking for what was making my life difficult. The first time on interferon/riba I thought I was going to die for a few weeks/months. I held on until after treatment stopped but I never really recovered from that and it has been 10 years.
I went on treatment, several times since. Each time on treatment certain symptoms would diminish, others would flare up. But never as bad as the first time. I always complained of symptoms not generally accepted as HCV related, especially since my liver was in really good shape. I told doctors I suspected an intestinal infection. Fatigue, sweating, headaches, trouble sleeping even when exhausted, jittery "electric" feelings, trouble concentrating, difficulty reading, even difficulty watching a television show (couldn't follow the story). My ability to work went down hill. My hobbies slowly died. I got bounced between GP's and gastro docs for the last 10 years without an answer.
A new doc ordered tests 3 weeks ago. One of them tested stool for the prescence of something that indicated malabsorption in the intestine. I seem to have this compound present (either a sugar or triglycerides or something).
Could be due to bacterial overgrowth.
Can be caused by diverticula, blockage, slow passage of feces through the system, IMMUNE MODIFYING THERAPIES, celiac disease....
Kind of like I was trying to say for the last 6 years to deaf ears.
All those years. When I complained on treatment I was told tx side effects, hang in there.
When I complained off treatment I was ignored or bounced to the "other doctor".
Hang in there. Get some testing done. Keep a log of your symptoms. When do they happen, when do you feel better. If the doctors will not listen at least you can start to get a picture and do things that help you suffer less.
The sad thing is that some treatments can cause some normally harmless or slightly annoying problems to flare up. Sometimes treatment can cause immune disorders.
And sometimes the treatment has nothing to do with the problem.
It is hard to say.
What is important is that your doctors take you seriously, and test are done to try to see if there is a cause.
Good luck,
Cheese
I went on treatment, several times since. Each time on treatment certain symptoms would diminish, others would flare up. But never as bad as the first time. I always complained of symptoms not generally accepted as HCV related, especially since my liver was in really good shape. I told doctors I suspected an intestinal infection. Fatigue, sweating, headaches, trouble sleeping even when exhausted, jittery "electric" feelings, trouble concentrating, difficulty reading, even difficulty watching a television show (couldn't follow the story). My ability to work went down hill. My hobbies slowly died. I got bounced between GP's and gastro docs for the last 10 years without an answer.
A new doc ordered tests 3 weeks ago. One of them tested stool for the prescence of something that indicated malabsorption in the intestine. I seem to have this compound present (either a sugar or triglycerides or something).
Could be due to bacterial overgrowth.
Can be caused by diverticula, blockage, slow passage of feces through the system, IMMUNE MODIFYING THERAPIES, celiac disease....
Kind of like I was trying to say for the last 6 years to deaf ears.
All those years. When I complained on treatment I was told tx side effects, hang in there.
When I complained off treatment I was ignored or bounced to the "other doctor".
Hang in there. Get some testing done. Keep a log of your symptoms. When do they happen, when do you feel better. If the doctors will not listen at least you can start to get a picture and do things that help you suffer less.
The sad thing is that some treatments can cause some normally harmless or slightly annoying problems to flare up. Sometimes treatment can cause immune disorders.
And sometimes the treatment has nothing to do with the problem.
It is hard to say.
What is important is that your doctors take you seriously, and test are done to try to see if there is a cause.
Good luck,
Cheese
Frank:
It seems that this doc understands that the viral count is undetectable with current tests but of course it is still there.
--------------------------------
Either you are SVR (cured) with no virus count, i.e. UND, or you have a detectible virus count and have active HCV. It's imperative you find out which one you are. The easiest AND ONLY way is to have a viral load test, commonly called a PCR or TMA test. Please INSIST that your doctor gives you one to take the guesswork out of things.
Be well,
-- Jim
It seems that this doc understands that the viral count is undetectable with current tests but of course it is still there.
--------------------------------
Either you are SVR (cured) with no virus count, i.e. UND, or you have a detectible virus count and have active HCV. It's imperative you find out which one you are. The easiest AND ONLY way is to have a viral load test, commonly called a PCR or TMA test. Please INSIST that your doctor gives you one to take the guesswork out of things.
Be well,
-- Jim
DD, I am a bit confused as well. I was given the all "cured" or SVR which I guess one means to say my viral count was undetectable. I think that the latest count was a year ago. Maybe two???
It seems that this doc understands that the viral count is undetectable with current tests but of course it is still there. This is how it has been explained to me by everyone...
This doc believes that my liver is still suffering either from Hep C and / or treatment side effects.
Again, more tests are ordered...
frank
It seems that this doc understands that the viral count is undetectable with current tests but of course it is still there. This is how it has been explained to me by everyone...
This doc believes that my liver is still suffering either from Hep C and / or treatment side effects.
Again, more tests are ordered...
frank
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