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Avatar universal

HCV Brain Damage

I have been declining in mental capacity over the last 9 years. I have brought it up with my doctors but they all say it is not HCV related and I am no where near Cirrhotic Encephalopathy often related to HCV.

Now I read that researcher HAVE found that HCV can cause brain damage and maybe 13% of HCV patients suffer from this.

http://www.hivandhepatitis.com/hep_c/news/2010/1015_2010_a.html

OK I want to know a few things.  
First off,  most importantly, we need a treatment for this.
What sort of drugs can help with this problem?

Now that the "facts" are starting to come in,  how come doctors/researcher have not taken note of this before, or were they just assuming that decline in mental function is to be expected from a bunch of drug users and alcoholics. Or that it is all due to interferon and Ribavirin (as one of my doctors seemed to imply).
Did none of their patients voice their concerns on memory loss and difficulty reading, thinking, concentrating???
I know I have.

Second,  why do experts in hepatitis and HCV NOT know these things by now and why is HCV it still being described as mainly a "liver disease"?  Unless you are cirrhotic or have really high ALT/AST you are considered to be in pretty good shape.
The other manifestations of this illness should be addressed to increase a person's well being and productivity through this disease.  I know I would still be working if my mind was as sharp as it once was.

What drugs best treat this condition, how do we test for it, and how do we address all the other "vague symptoms" which are quite real and debilitating, that those with HCV complain about??  (Inflammation,  joint pain, sleep disorders, myalgias, ...)

Cheese



23 Responses
1225178 tn?1318984204
Ignorance is a MAJOR problem with doctors that treat HCV. I think a lot is because they were taught that it comes from IV drug use when they were in med school... and "those people" deserve what they get... I have actually heard that before.

As far as getting rid of the mental effects and all the others you list above, the only way is to do the treatment to kill the virus from your whole body. I've been on tx for 26 weeks now and my joint pains have gone away since I became UND. The brain issues from the meds are worse than the ones I was having before I started, but I do hope that when I'm done they'll all go away.

Have you ever had a biopsy to see how much damage your liver has? Have you ever done tx?

Diane
Avatar universal
Around 7 yrs ago, Joe received the news he had HCV and quickly had a biopsy which showed he had cirrhosis. The summer before he finally became so symptomatic, he had to go to the Dr., he was in charge of the summer baseball leagues for our town.  He 'd always been  go -getter, very energetic and on top of things but by that summer he couldn't remember anything.  His normal personality had always been congenial but now he was angry at everybody and everything.  He made multiple mistakes on baseball scheduling although I tried very hard to pick up the slack.  I had no idea what was wrong with him because he wouldn't talk about it and became angry if I got too persistent.  It was a horrible time and we even had a new baby which complicated the situation even more.  Once we got the diagnosis, I began my hunt to find answers and I kept bringing up at his Dr. appts. that he was having trouble remembering things and was making a lot of mistakes.  Joe found it humiliating and denied he was having trouble and the nurse practitioner just ignored me.  About 2 yrs into the process and 2 failed treatments  under our belt, I stopped being as passive and I told the NP I wanted Joe to have lactulose.  They only recognized full blown encephalopathy and said he didn't need it.  I told her that I live with him and he needs something!  She gave in and ordered the lactulose and it might have helped somewhat but around that time is when HR came around and when we started his supplement list, he improved dramatically over a 6 month period.  He still takes the lactulose also and HR thought lactulose was very good even if you don't have out and out encephalopathy.  He has been on the supplements for years now except for the 15 months he tried Alinia with SOC which failed again.  He went right back on the supplements afterwards and although he had been quite sick for many months, he bounced back quickly.  He also started taking Low Dose Naltrexone at that time which also may have contributed to his fast recovery.  The two former TX failures (before supplements) had only been 13 weeks a piece and it took him a good 6 months to feel human again after them. We aren't scientists but can certainly see the supplements have made a big difference.  Joe still gets fatigued but he can solve all kinds of complicated problems again and remembers things better than my non-hcv brain.
I know that there are people that don't like supplements even mentioned but I feel quite selfish never to try to help others the way we have been helped. I won't say anything about brands.  I am just pointing everyone back to HR's posts in the archives or Gauf's journal where he kept a pretty good record of HR's suggested list.
Hope this helps someone,
Ev
Avatar universal
Isn't it odd how HCV affects us all differently.  I have no brain problems from HCV.  No severe memory problems during treatment and no post treatment problems and I did 72 weeks of therapy.  The problems that I do have I attribute to the natural process of aging.  
Avatar universal
Some of the memory problems might be caused by a disruption in the biological clock/sleep patterns which I understand are somehow governed by the liver to some degree.  Back when things were really bad, Joe was sleeping more and more but never feeling rested in anyway. I know from babies that keep you up all night and night jobs, lack of restful sleep can make you get kind of weird and throw your memory off.
  I remember Joe would tell a story of something that happened in the past, and his facts would be way off.  He was so sensitive about me saying he wasn't remembering things correctly, I just started grinning and letting it go.  He doesn't seem to do that at all now.  It is very strange to have someone your close to start seeming like someone you hardly know.  He is back to his sweet self now and has to remind me of things!  I work the night shift:>)
1477908 tn?1349571310
I finished tx in May and I have to say that the cognitive issues that have cropped up are troubling. Right now, I'm still attributing them to being in the throes of detoxing yet and the stress that comes from waiting for PCR's. But there's this niggling bit that wonders if this is long term. And it concerns me greatly because it seems to be over and above the usual short term memory loss that comes with aging. My employer is kindly overlooking some of my errors at this point, but I do wonder what could happen if this keeps on for any length of time. For now, I try to keep focused on the important things and use ALOT of stickies for reminders. I'm trying to learn Italian and work on memorizing things more to see if that kicks things back into place. Time will tell....
Avatar universal
Here is more information on this topic, it is not new information, there are other studies to prove it.

http://www.google.com.au/#sclient=psy&hl=en&q=Poynard+Hepatitis+C+AND+the+brain&aq=f&aqi=&aql=&oq=&gs_rfai=&pbx=1&fp=efe0200ede427889
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