Concentration and memory

[dheana]

It is wellknown that the Hep C virus induces neurological problems. For those of you who cleared the virus and finished the tx, do you feel an improvement in your memory and concentration comparing with the situation before tx when the virus was active?
I ask that because I have a very demanding job in terms of concentration and memory.

[Tallblonde]

Thanks for asking this question.  I've only known for 7 weeks that I have HCV, but my memory and concerntration difficulties date back at least 6-7 years.  I'm 44 now, so that means I was starting to experience what I thought were "senior moments" when I was only 36!  Now, looking back, my instincts were right.  Something was definitely NOT RIGHT.

My job demands a lot of focus and concentration.  I especially find it difficult to LISTEN to people.  My mind immediately starts drifting away.  And even the stuff I'm able to catch is lost quickly if I don't write it down.  I'm a strategic planning consultant and a business journalist -- so listening is vital to my success.

I haven't started treatment yet, but I'm so afraid these issues will be exacerbated while I'm on the combo.  And, like dheana, I fear that I'll never regain the mental sharpness I've already seemed to have lost.

Susan

[terriri]

Hi deheana, I think everyone is different on this one. For me it’s all down to how rested I am. Today I’m very punchy in the head after running around all day. Very punchy after running around all day – did I already say that? Oh well, what was your question again?
Really though, I think most people greatly improve after TX & some don’t have any problems during. I will just continue to use my dizziness as a secret weapon during trivia party games where things I can’t ever remember learning come flooding back into my pea pickin brain just in time to make me a winner. It’s kind of fun to watch people siting there staring at me with their mouths wide open and shock & disbelief in their eyes.

[dheana]

Are you doing the treatment now? I mean do you have that "brain fog" during treatment or after or just before? I feel like I'm living in a different world. I'm now week 41 of treatment and this seems to be the major problem at this stage. I didn't notice any symptoms before I was diagnosed, I was just tired I think. Now I'm even more tired and wonder when this hell will end.

[Commdude]

Most definitely.   I did not know what was wrong with me before TX, and felt that either I was too tired from partying too much, but then again, I was just tooooo tired and unfocused towards the last three months before getting checked.   I have a job and responsibilities like anyone else, own the darned business and kind of have to have responsibilites...but something just didn't seem "right".  Thought it was due to drinking too much...but it was all in moderation...a few drinks after work with coworkers...the usual.... combined with occasional blow outs.  Didn't have alot of energy and "get-go", though for several months....which was uncharacteristic.   Decided then that it was time for a physical just for grins after 10 years without one.  Asked my doc to check  "Everything".  Then  I realized that I had "IT".

Went throught the Inteferon/Reba gauntlet, and after 4 months post TX, feel better than I have for several years.

Coinkidinky....perhaps, but I think not.  Quality of life is much better post Tx, and was definitely worth going through treatment, though I am undecided as to wether I'd do it again if not SVR.

[lackalustre]

glad to see you here.  i remember you were dealing with depression earlier.  hope thats much improved.
    my head 3 mon. post tx. seems to be a bit clearer now.  the brain fog really dismayed me.  getting adequate sleep definitely helps.  im a mess the next day otherwise.  of course the treatment caused major sleep problems.  so i still use some meds. what a balancing act we all perform!

[dheana]

Thank you for asking, I'm doing much better with the depression. It's amaizing what a good doctor can do. He took me off CELEXA and put me on Desipramine which seems to work quite well so far.
Until this point I couldn't think at other sides because the depression was so severe and overwhelming.
Today I was at work and noticed that although I'm not depressed I still can't understand what people are saying around me. But at least I don't cry anymore...
Just wondering if I will be able to work in this place after tx. People around me have noticed that I'm not 100% and they have enough patience until the end of treatment but after that I think I have to work, no reason for giving me easy jobs...
Hope you are OK.

[susan400]

I noticed, before I ever started treatment  that if I drank a 1/2 a glass of wine, that was all I could handle.  And I thought that was a little strange because in the past I had drank mixed drinks daily.  It was at that point that I gave up drinking.  This was about 7 years ago and my doctor at that time basically had told me that the treatment of the time (Interferon alone), was useless and to just ignore the HEP C until something better came along.  He didn't say alot about stopping drinking or anything but I pretty much had to.  In any case, yes, I've had brain fog off of treatment and on.  I haven't been able to work,but when I did try, (for one day), I couldn't retain any of the new info that they were teaching me.  Susan400

[Ampz]

Your description of your particular type of 'brain fog' is almost exactlty the same as mine... listening, especially in a group, is very difficult for me and this has been going on for nearly  10 years.
The odd part is I have a very low viral load, test positive for A, B, & C antibodies, and my biopsy shows minimal inflammation and no scarring, and I won't need treatment.
I'm am still fatigued and have the 'fog' though. I also have been treated for depression 3 times in the past 20 years. I weaned myself off Paxil just over a year ago... I feel ok as far as the depression goes.
I truly hope all goes well with your treatment, again , like you, I was diagnosed just 7 weeks ago. Good Luck.
Ampz

[Ampz]

Oops! See what I mean by 'fog'. I was confusing your time you've been diagnosed with tallblonde's.
Sorry all!
Ampz

[Tallblonde]

There seems to be several interesting parallels with our situations.  My listening problem is definitely hardest for me in group settings.  I began a master's program in journalism six years ago and couldn't seem to follow or understand the classroom discussions.  It was the weirdest thing!  I ended up with a 3.85 GPA for the program, but I can't remember a damn thing I learned!

I don't understand how I can have such prominent symptoms for years, and yet have such a low viral load and virtually no liver damage.  Can someone explain that to me?  In addition to my usual brain fog, my joints and muscles are particulary painful today. These symptoms have been going on for 6-7 years!

Ampz...what is your VL and genotype?  Did you have a biopsy?  What were the findings?  Are you just postponing treatment, or are you saying you don't need it ever?

Susan

[Tallblonde]

See what I mean....there's that brain fog again.  I asked if you had a biopsy yet, and now I see that you already said that you did.  My "listening" skills stink.

I'm still  interested in hearing about your VL, genotype and treatment decision, if you're willing to share.  Also, how old are you?

Susan

[lackalustre]

i understand tall blondes and dheanas concerns about ever regaining brainpower.   ive been a detail oriented person as well and the brain fog really gets to me bad.   of couse other things can play into the situation like hormones, menopause, etc...  when we get older.
     have had anxiety issues and only took low dose trazadone during tx.  tried all kinds of anti de     thru the years and couldnt handle them.  they all made me sick.    so i learned to wing it and just avoid some stresses , watch my diet, etc..
   thats one reason i put off tx. for so long.   still on low dose trazadone post tx. and i MADE it thru tx. with a lot of prayer.   now im off tx. and motivation to do things is harder, i think about things i want to do but doing them is another thing.  just do it and motivation follows is working some. just trying to stay positive.   prayers to all of you.

[terriri]

Hi deheana & Tallblonde, I am female, 43, & was 1a. I will be six months post TX at the end of November. Before my diagnosis I would tire very easy & had a hard time focusing & following through with certain things. Like commdude, there was about three months there that I knew something was wrong & finally went to the doctor. I had always been very active so it was strange to feel so lazy. During treatment I went through many different sides stages, bone pain, bad periods, ect. At the end my reds started dipping, but not dangerously so. As far as fogginess, I don’t know if it was because my body was just plain worn out from the drugs, the low-ish reds & dodgy platelets or the fact that I was fed up with the whole ordeal. But, I became a little foggier towards the end compared to off & on foggy head at the beginning. I think most people start feeling less brain disabled soon after treatments end. However, I have always been a bit strange & it has taken me a little longer. I did feel somewhat better right away post TX until the joint pain became worse. Around this time my reds, platelets & whites dipped a little more (but still not dangerously so). I had a horrible overworked RA doctor tell be I had all kinds of bone damage & loss, which turned out to be false. I have also been battling a stubborn ear infection & all the fun that goes along with it. Cannot remember ever reading about the blood of post TX persons getting worse after treatment (probably fog). But like I said I have always been a bit strange. Most likely your brain will get back to normal right away & unless you exercised throughout treatment it could take a little longer for the physical strength. Hang in there, you will be free & clear soon.Get plently of rest, it makes a big difference.
All my very best!

[dheana]

did you complete the treatment or just stopped?

[Ampz]

Susan,
Wow! Again, almost all you describe is exactly what's been going on with my brain for 10 years, maybe more. The forgetfullness too. I decided to change careers back in 1994. I received an Associates Degree in Electronics and wasn't sure how I got through it, I made the Honor Roll throughout the whole 2 years.
If I weren't dealing with, on a daily basis, many of the same topics I studied, then I know I wouldn't remember most of it.
I also have achy joints, one I know is arthritis, but the others just ache at times.
Very interesting parallels...
7 weeks ago I was told I had HepC. I was then sent to a specialist.
I had a biopsy 3 1/2 weeks ago along with blood tests for VL and Geno. My VL was 40 IU/mL, way too low for genotyping and my biopsy showed "normal architecture, mild portal inflammation and no necrosis.(I posted these results on this site on the 8th). The specialist told me to set up an appointment for one year from now to repeat the VL tests. He said I may be clearing the virus without treatment. So whether my VL increases or decreases a year from now will determine whether I will need treatment or not.
Thanks for the reply... maybe there is something behind all this.
Ampz

[Ampz]

See, I always forget something!
I'll be 52 on the 28th.
Ampz

[Tallblonde]

Thank you for sharing your story.  Wow, I thought my VL was low.  You sure topped me.  But this is what I still don't understand...how on earth can you have so many symptoms for so long and have such a low VL and no liver damage?  That's what I'm trying to figure out with my situation, too.  From what I've read here, some of these posters had little or no symptoms prior to being diagnosed and then found out that they had servere liver damage and VL's in the millions!  How can that be?

Can anyone offer an explantion?

Susan

P.S.  Ampz...do you also have trouble founding the plots/dialogues of movies or TV shows?  I drive my husband crazy because I'm constantly asking him:  Now who's that?  What just happened?  What does that mean?  It makes me feel like I have the attention span of a gnat.  

[new-sojourn]

I didn't have a clue until I went into complete liver failure.  And I had had both emergency and elective surgery in the '90's and everyone came up w/a diff explanations as to the terrible imbalance in my blood.

2 wks after I bled out, icu 1wk discharged, my doc decided to test for hep c.  I could have died from any one of those surgeries what w/my non-existant platlet problem, and no one would have known why.

So, if several different docs and hospitals couldn't spot it or test for it, what chance did I have?  All my medical records clearly stated that I had had 2 emergency c-sections in '79 and '85.  Those always involve blood products.

All my vauge symptoms were put down to age, the change, terrible marriage and worst divorce and on going litagation. Also, I was a women w/teenagers.  That accounted for weight gain, fatigue, depression, memory (sever, now I realize as it comes back).

Hope that sheds some light on why this is called the 'stelth disease.'

[Ampz]

That paradox is the oddest thing about this disease... some people have VL in the millions and have little or no symptoms, while you and I have relatively low VL and little liver damage and have felt all kinds of symptoms for many years.
I was dreading TX because I thought it might increase my symptoms tenfold or more. I couldn't deal with that very well.
So here is my uneducated, unjustified, unfounded theory; what if the symptoms are relative to the intensity of 'fight' our bodies are putting up against the virus, the intracellular war that is being waged in our blood and tissues?
What if the TX symptoms are not really side effects of the drugs, but effects of the battle? Think about it for awhile... does it make any sense to you?
My main mental complaints are listening to conversations and memory loss. Following plots doesn't bother me too much because in my job, I need to troubleshoot equipment, so I have to gather info and determine the cause of the problem. Maybe everyday usage of the 'paths' tends to exercise them and keep them sharp. I'm not certain.
Anyway, thanks for listening again!
Ampz

[Galen]

I don't know the answer to your question about having symptoms of hep with low viral load and no damage, but I can promise you that the tx sides are definitely medication related.  I am almost 7 weeks post-tx and the brain fog is gone.

[Tallblonde]

Hmmmmmmm....very interesting theory.  I'd love to hear Erin (GI.PA)'s opinion on that.  Or Mike Simon's or Willings.  It makes sense to me, but I have no medical or scientific background. Heck, I didn't even know what HCV was two months ago!

Susan

[Revenire]

I know what you mean about using the brain keeps it sharp. I troubleshoot communications equipment, large telecommunications switches - routers - networks - etc. and it can get a bit dicey these days but I've been able to keep up, somehow. These days (week 44) I'm all fogged out and pretty tired.

[simpleman]

I think most people want to blame everything on HepC or treatment(including me). IMHO I think they are not related. Could be you are getting older and your life is much more complicated so you just don't listen as well as you once did. Maybe you're preoccupied with having a baby. I think it is human nature to look for an "excuse". I do it too. If the problem is HepC then I don't have to admit the problem is probably me. I am certainly no expert and this is just my "guess".

[landfill]

My dr says that somebody with hepc replicates a trillion copies/day and each one lives about a half hour before the immune system gets rid of it.  So even though we can't eradicate ourselves there really is a battle going on.  I think the riba/inf tips the balance in our direction.  There are other viruses in us, too, like herpes.

HCV mostly inhabits liver cells.  Replication has been observed in blood cells called monocytes so maybe what we call VL is the monocyte infection and not hepatic load.  That would explain why liver damage isn't correlated with VL but not why the odds of riba/inf working are correlated with the blood load.

He says that viral infections in general are still poorly understood.

I'm waiting for my PCR results at 12 wks post-tx.  I was neg at 4 wks.  My dr answers (and archives) HCV questions at
http://hopkins-id.edu/index_ask.html
it's not a bad read for HCV info.

[Tallblonde]

Thanks for the interesting information.  Best wishes for your 12-week PCR.  I'll keep my fingers crossed for a good outcome.

Susan

[willing]

the 'foundation' of our understanding of levels of hcv replication is a mathematical model developed by Neumann and Perelson (<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9756471&dopt=Abstract">see</a>) in '98. Fitting that model to patient data yielded a number of predictions (~10^12 new virions/day with  a half-life of a few hours in blood as landfill points, but up to 70 days in infected cells; and a relatively constant VL). Though most of the model's predictions have been independently confirmed, it didn't explain the patient/patient variation in blood-measured VL. From other work we know that VL is not related to rate of progression of liver disease but is correlated with success of tx. The following recent <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12875965&dopt=Abstract">study</a>  sheds some light on this puzzle. Overall the picture looks something like:
- the virus reproduces stably in liver cells. While the production by an individual cell is fairly low (which helps the cell avoid destruction by the immune system) it is steady and the overall production is huge.
- the copying process is sloppy. Though the HCV genome is tiny (~9600) it makes about 1 error per new copy. This means that a lot of the virus cranked out is not competent to infect anything *but* also that the virus can quickly adapt to any change (bad news for biln).
- replication in an infected cell need not kill it. The buildup of scar tissue is not directly caused by the virus but by the ongoing (unsuccessful)immune response  in the liver. That's why your ALT/ASTs can be normal though your fibrosis is progressing.
- most of the free virus in the blood is killed off by the immune response. If you suppress the immune response (after transplant) VL goes up.

So it looks like the difference between those of us with high and low VL might come down to how succesful our immune response is at eliminating free HCV in blood serum. Leaving a lot of virus in the blood makes for a high VL, doesn't necessarily worsen the situation in our liver (fibrosis progression is independent of VL) , but does provide an opportunity  for the virus to infect other cell types, which may be why combo therapy is less likely to succeed for VL above 800,000 iu/ml. Presence of the virus in body fluids such as saliva and seme, as whoohoo keeps reminding us, is correlated with blood VL which is consistent with a more widespread infection. According to this view, non-liver complications of HCV should be *more* likely in those with high VL.

[willing]

I know Dr. Sulkowsky writes conference summaries for sites like NATAP. If you have a chance to ask his opinion about the extended-tx results presented at the last AASLd (basically <a href="http://www.abstractsonline.com/viewer/viewAbstract.asp?CKey={59C5D3F8-7761-41F4-8C09-0158C9152B37}&MKey={201E3AB1-B366-4CFC-879B-196DF41D3A21}&AKey={704CF973-D8A8-4909-A16B-9F7D9FB76BC7}&SKey={B95B7700-4CCE-45A4-8AB0-70F91E33D429}">Berg</a> vs <a href="http://www.abstractsonline.com/viewer/viewAbstract.asp?CKey={99753635-F7E5-49BB-BB9A-63350891B720}&MKey={201E3AB1-B366-4CFC-879B-196DF41D3A21}&AKey={704CF973-D8A8-4909-A16B-9F7D9FB76BC7}&SKey={B95B7700-4CCE-45A4-8AB0-70F91E33D429}">Teravic</a> vs. <a href="http://www.abstractsonline.com/viewer/viewAbstract.asp?CKey={6837D9F9-800E-4CA5-AD71-B6A8693DB0E6}&MKey={201E3AB1-B366-4CFC-879B-196DF41D3A21}&AKey={704CF973-D8A8-4909-A16B-9F7D9FB76BC7}&SKey={B95B7700-4CCE-45A4-8AB0-70F91E33D429}">Ditto</a>) it would be very interesting to hear them. Best luck on good results!

[soulangel71]

I have had hepC for 15 yrs - I am 32 now and have been experiencing this brain fog for years - I thought it was from past drug use - But I am 3 yrs clean and it is getting worse. I work in an environment where I need to be on the ball and be able to answer hundreds of questions a day - keep track of 20 projects at a time - and think on my feet. With this fog - some days I just cant. i find this is when I am not rested - and I find I am having to apologize to my boss on a daily basis --I feel stupid when someone comes to me with a problem and I have to get them to repeat themselves a few times before my brain kicks in and can formulate what they have said to me.

I never knew it could be from the HepC

I start Pegatron Therapy 48wks - after Christmas - Will this get worse during treatment and will it get better after treatment?