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?
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,
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.
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:>)
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....
Here is more information on this topic, it is not new information, there are other studies to prove it.
yes I have had biopsy a couple years (score 1 or 2)
yes did tx several times.
I have heard of lactulose. I am aware of what it does and the side effects (diahrea). I have tried it. It did not help my condition though you might say I became overly regular.
Naltrexone is often used for opiod detox, I can not see how I would benefit from this.
Yes treatment is like getting kicked in the head several times by a gang all wearing heavy work boots.
Still, I have been on treatment and off and I will say that the mental effects of treatment wear off. The memory/concentration issues I have have been building over a decade and are different from those brought on by treatment. Essentially I have become slow and dull witted. Math was my strong point in school, I had been given a simple test by a doctor, I failed miserably (in my book anyway). I feel the disease is making me "stupid" although the intelligence is still there, the curiosity, the desire to learn new things.... the brain can't focus enough to do so. Thinking and following a line of thought is slow and difficult.
Treatment tends to hype me up, so my mind is energetically jumping all over the place, kinda like the exact opposite of slow and dull although the same effect is inability to focus the feeling is different.
I told my employer that I was having trouble and I was refered to the employee assistance program, who could only really help me if I had a substance abuse problem, they could not recommend any plan for my failing mental capacity. Of course, telling this sort of thing to your employer WILL get you laid off. I got the boot in 2005 and have been unable to work in my career since.
I now live with stickies, and writing notes on the back of my hand. I have to write down anything I need to know or remember and take it with me. I also have to use a computer program for appointments and things to do.
Thanks for the links.
Sure I have read this sort of thing a few years ago.
Most doctors who treat HepC are completely unaware of this sort of issue.
What is being done to identify HCV related mental issues that are not due to Hepatic Encephalopaty caused by cirhosis?
For those who's livers are FAR from cirhotic but who are complaining that they find it increasingly difficult to read a book, watch a movie, plan a schedule, drive a car, normal every day things....
Those who have years to go before serious liver damage but who are showing mental decline right now and that will negatively affect their lives for years before their livers start to give out?
What options are there for these people?
Is there a medicine that will slow or stop whatever HCV is doing to the brain for those who do not respond to current SOC?????
Also please note the additional thread," HCV can infect, damage brain tissues".....
This thread also addresses the issue of HCV Brain Infection...and there are a good number of responses regarding this issue. Now that science is beginning to clarify some of the reasons for our cognitive and behavioral problems, maybe we will see a more multi-functional approach to the infection. ie: This virus is not just a "liver" virus, but it is a virus that directly infects, and probably directly impacts multiple organs and systems in humans. We now have proof that the brain is actually infected in many people, and I will guess that sometime soon they will also demonstrate the virus acting on connective tissues (joint problems), salivary tissues and glands (all the eye and dental issues, as well as SS complaints), skin, lungs, kidneys...etc. How about the cardio-vascular system...do we know yet why a much higher percentage of HCV+ individuals seem to suffer stroke and cerebral hemmorhage?....You have to also wonder if the virus, which runs rampant in the blood stream as we know so well, also damages the walls of the arteries and veins, or even heart tissues....and so on and so on....
I have always rankled at the term "a liver virus" when doctors refer to HCV. I have ALWAYS believed that the virus is a total system virus, that just happens to have a slightly larger propensity for the liver than maybe some other organs....maybe.
Many people with active HCV, and minimal liver damage have suffered from a wide range of "extra-hepatic" effects...usually with little explanation from the medical community as to "why". Now maybe we are finding that the "why" consists of HCV directly infecting and damaging various other organs and cells in the body. I have ALWAYS believed this, it only makes sense, especially if you have actually experienced these "extra-hepatic" symptoms over many years.....
Let's also hope that our SVR status also includes a termination of infection in all these other cells and organs as well....not just in the bloodstream! My biggest concern is how to insure that the brain infection is cleared on SVR, and maybe this is where brain scans and other lab testing will help us understand the long term outcome better as relates to our brains. There is still tons to be sorted out by researchers regarding just what is going on after SVR....which after-effects are due to all the interferon, which are from residual effects or changes from having had the virus for so many years, and finally which after-effects are possibly dure to still active HCV infection in isolated organs (the brain, lymph nodes, connective tissue, etc.). Possibly some forms of the infection, in certain cells, might not be capable of re-triggering the 'visible' HCV serum infection that we all originally treat. Could there be 'residual' HCV infection that continues on, in isolation, causing symptoms, and damage??? Only time, and good research, will tell.
Best wishes to all.
I think you have given the Hepatitis C version of Catch-22 which goes something like this:
You can't be declining in mental capacity if you realize that you are.
And everyone else who commented....I have had hep c for over 5 years now and have been suffering alot of memory loss. Ihave a college degree and have trouble spelling, thinkingn of the word, however easy I want to use. Some people have refererred to this as a side effect of anxiety. But ii've been on the anxious side all of my life. Unless I'm beginning very early Alzheimer's I don't believe there's anythingn wrong w/my mind except that the mental confusion that chronic hep c can cause. It only started noticeably about a year ago and litterally scares the heck out of me. Hoping after tmt it goes away ???
Maybe you're just fortunate in that the meds didn't affect you in that way. Count your blessings. However, that doesn't mean that everybody is as fortunate in that way. As you know, the meds don't affect us all in the same way. Some of us get very anemic, very quickly, and some of us don't. Some of us SVR and some of us don't. Just like I almost died when I was 15 from Penicillin, anaphyllactic shock, stopped breathing, passed out, needed oxygen, ambulance, ER, the whole 9 yards. Does Penicillin do this to everybody? Nope. Just because you did 72 wks of TX and didn't have brain problems, doesn't mean that on your next TX that you wouldn't end up with some brain problems. My parents are 76 yrs old and are 'aging' and have absolutely no 'brain problems'. But, other 76 yrs old people do have them. All of us are different. You are blessed. You have a good brain. :) I'm truly happy for you. Susan400
What were we talking about?
What is interesting to me is that Joe's brain trouble started before he was ever treated or knew he had HCV and cirrhosis. He would have had it for all those years but nothing really manifested until he was cirrhotic. He was just as bad after the first and 2nd failed TX but then came HR's supplements and now, years, and another very long failed TX later, he is way better than he was 6- 7 years ago when this mess all started. Unless failed TX had a really good effect on Joe ( the first 2 sure didn't) the only thing that could account for the improved condition is HR's supplements. Even more in there favor is the fact that his very noticeable improvements, mentally and physically, started after 6 months on HR's supplement list. It would be hard to convince me that they aren't the reason why because I saw it with my own eyes.
Another article on the same subject:
Hepatitis C damages brain cells
October 20, 2010 - 11:57pm
Catherine Scott, News Staff
University of Alberta virologists have recently confirmed that the hepatitis C virus (HCV), commonly known as a disease that affects the liver, also adversely affects certain cells in the brain.
Working with a team of virologists, Dr. Christopher Power and Dr. Pornpun Vivithanaporn exposed an hepatitis C protein to glial cells, the structural cells of the brain, and discovered that it is possible to infect them. The infected cells also release toxic factors that can potentially damage neurons.
The findings are important because of the number of HIV patients that contract hepatitis C as well. Because HIV is known to cause neurological damage, the U of A study considered both of the infections in order to determine that hepatitis C can cause neurological complications on its own.
Once a glial cell is infected with an hepatitis C protein, it becomes inflamed and releases viral proteins, which interrupts autophagy — or the "self-eating" mechanism — which is the process in healthy neurons that devours unwanted proteins. From this, neurons accumulate undesirable proteins, stop working properly, and could die. Power noted that the results of this study could educate people on an infection whose effects they do not fully grasp.
"This raises awareness of the adverse impact of hepatitis C on the brain because people really don't have an appreciation of that," he said.
Power added that, as a neurologist, many of his hepatitis C patients complain of memory and concentration impairment. However, until now, the virus' presence in the brains of infected patients had not been confirmed.
"We were the first people to show that, in fact, you can infect brain cells. That in itself, is a technical advance," he said.
Power explained that these findings may provide greater insight in developing and improving adequate treatment options for hepatitis C.
"Treatment is limited to a combination of a drug called interferon-alpha and another drug called ribavirin. Interferon has really nasty side effects. It makes people confused and depressed, and it only works in a subset of patients, depending on the type of virus you have. So any new treatments would be beneficial to hepatitis C," Power said.
Vivithanaporn echoed this statement, noting that the strain of hepatitis C found in North America is a particularly stubborn one. He also stressed the importance of this technical advance, which is but one step toward further discoveries about hepatitis C's impact on the brain.
"It's kind of exciting to us because most people perceive this virus as the one that injures the liver, but this is the first time we've shown that it actually can infect glial cells [in the brain] too. We found that maybe it is part of the link to the neurological complications. That's what is exciting about that."
have you had them check your ammonia level? What was the level.
have you read the threads in here dealing with that and other dietary things?
We had some great discussions, I got mine down to 1/4 of what it was...
You'll feel better if you make the effort, and it's a healthier way to eat besides all that.
If your ammonia is fine, then have you been screened for the dreaded brain plaques or had an Elisa done? There are several newer screens for alzheimers worth considering, especially since there is much more that can be done preventatively if your test indicate a problem, and the sooner you begin those changes, the longer you can postpone dementia.
Low doses of naltrexone (LDN) over the long term is cited by studies to boost immune functions and has benefited many with autoimmune diseases. I believe it works by allowing the body's naturally produce opioids to circulate freely in the blood for a few hours at night. They found these opioids are essential to the immune system. My doctor prescribed LDN and I'll give a progress report in a few months.
Concerning the HCV induced brain cell damage, this might explain why HCV causes depression besides the fact that it's depressing to feel like cocca all the time.
Cheese - I read your original post with interest. "Did none of their patients voice their concerns on memory loss and difficulty reading, thinking, concentrating???
I know I have. " ... so have I - many times. Many times it felt like it was on deaf ears, now I can see they didn't have the information they have today.
Last week I was hospitalized because my ability to make decisions, think clearly or relate with language was SEVERELY impaired. It felt like my mind just shut down. It had been going on for months/years and it just got out of hand. I have decompensated cirrhosis from Hep C - had a varisceal bleed a few years ago, been on tx 4 times. But my ammonia was normal when they admitted me and afterwards, too. Plus I was cognizant, however impaired, of what was going on. Not what they would usually consider encephalopathy. They thought maybe I'd had a stroke, but that test came back negative.
They are treating me with lactulose and my mind has cleared considerably. I will see my specialist this week - we will discuss further treatment. I thought it was too soon to be on lactulose as I did not have encephalopathy. Initial discussions with his office ...they've told me to stay on it.
Although I'm still a little shaky on the communications end, I am able to make decisions and exercise some critical judgement again. Thank goodness.
Sounds like the doc wants to talk about bowel movements and I'm told I must be vigilant about it all - oh joy!! Lactulose doesn't give me diarrhea (not so far, anyway).
I sincerely hope your doctors listen to you and help you find relief. At present I'm just happy to be a little more clearheaded than I was, but I sure hear where you're at!!! Wish I had more to offer!
Merrybe: I should have an ammonia test just to see what it comes up with. However I am told I am far from cirhosis which is generally accepted to be the main cause of high ammonia levels in those with HCV. Would it be strange to have a 40-50 year old develop plaques/alzhiemer's? Would you think it more likely a 40-50 year old person with HCV and problems with memory be more likely to be suffering from plaques/alziehmer's or that the virus is causing the problem. There are those who would automatically assume drugs or alcohol (stigma).
Thanks for the thought. I am sure my doctors wil tell me my ammonia levels are fine, but I might just ask for a test anyway.
If ammonia levels are checked in the usual hepatitis monitoring based blood tests then my levels are fine. I'll ask my gp.
Naltrexone has a long list of things it is being tried for off label.
Naltrexone is an opioid antagonist. it will interfere with the bodies natural opioids as well. From wiki "Mechanism of action may be antagonism to endogenous opiates such as tetrahydropapaveroline"
It lists several other clinical conditions and diseases that naltrexone is being tried off-label. I have little faith in this sort of thing. I don't want to take away anyone's hope but I have seen this sort of off-label thing many times in the past. It will take years to prove or disprove all the claims. Show me a few completed phase III studies with statistically relevant results.
And as far as HCV CAUSING depression... I think that is a grey area. Depression is may be described as a state where the patient does not want to do anything.
Well that is not me. I WANT to do things, it is just that my body/mind is in such a state that doing these things may be difficult, uncomfortable, tiring, painful or dangerous. I would not call that depression but the thought that I cannot do what I really want to might be called depressing....
Sounds like you had what I have but times 100. I was on Lactulose for a short time, it did not help, I wish it did.
Again, it would be interesting to have my ammonia level results.
Yet another example of why I doubt very many people read this board before posting.
Oh yeah, I haven't experienced any cognitive or memory issues I attribute to HCV and/or treatment.
I can still read and retain.
Thank goodness for Sticky Notes!!!
I've come back from the gi and they're keeping me on lactulose. HOWEVER from everything I've read and my own experience with trouble with linear or cognitive thinking, (this all started with tx and never got better even 5 years after completing my last tx) ... I'm also going to try increasing supplements (C,B's, E, etc.) There is some interesting information at http://livingwithliverdisease.spruz.com/ under "my bible".
Just an aside .... one of the HCV tx's I was on early in the game was "interleukin" (not interferon) ... which they later found actually CAUSES Lou Gerig's disease ... I was still signing release forms two years after they abruptly stopped treatment! That's always a question in my mind (what little of it is left!)
On the lighter side, one of the lawyers I worked with years ago functioned just fine after experiencing permanent although mild brain damage from a car accident. It was noticeable in his speech and ability to retain information sometimes ... but he was determined and he overcame most of it.
If you want an interesting book to read about retraining the brain, try "Stroke of Insight" about a major stroke a neurological scientist experiences ... and lives to write about it, then goes on to train medical professionals on how to treat stroke victims. AMAZING. I found it extremely helpful for my own situation and it gave me HOPE. Sometimes that it is in short supply in our situation.
That book sounds very interesting . I really like that word H-O-P-E ! It sounds like you have been through plenty.