I have been suffering with "brain fog", or at least that's what I've come to believe it is. I have Hepatis C and I do not know how long I've had it. I had a liver biopsy in 2001 and was told I had stage 2 liver disease. My liver enzymes are always slightly elevated and I have occasion pain and vomitting. My ammonia level is normal. Could Hep C really be the cause of this "Brain Fog" and if so, what can I do to improve my mind? I am an ICU nurse and I try not to self diagnose. My doctors are not Hepatitis specialists, and my GI doc admits to knowing little about Hep C. My PCP is very wet behind the ears and has not even heard of the term brain fog. I am in the Kaiser system so my hands are somewhat tied. I have been doing alot to self educating to get proper care. Thanks for you help.
Louise RN, BSN
I would vedry strongly suggest you see a hepatologist as sson as possible. They are the most trained in HCV. I am quite surprised your docs did not refer you to one after you dx.
The brain fog most of us experience is from the meds we take for HCV or additionally from loss of thyroid some of us experience due to the meds we take for HCV.
I hope you see someone very experienced very soon. LL
I noticed some memory problems before I did the tx for hcv, but chucked it to aging, of course I had them worse on tx, I am nowwondering if my immune system attacking the virus played some part in the memory problem. There is another member here that is with Kayser and treating her infection. Getting rid of hcv, if that is the cause, would be the remedy for the fog. Your body is going to continue on its state of "alertness" as long as the invader is within.
If you are in the Portland/Vancouver area you won't be able to get a good Hepatologist through Kaiser, as they do not have one. The GI's are not that up to date on HCV. I would suggest you try going to a Hepatologist in the area.
I was diagnosed in 1989 and have had an increase in brain fog and and a loss of cognitive thought process over the years from the HCV virus.
I, too, have brain fog -- and it's not related to treatment (since I've never been on tx). My short-term memory is horrible. I have to write everything down, or else it's lost forever. I also find that I'm less interested in pleasure reading -- it's not a pleasure anymore due to my memory and concentration problems. Even TV viewing or going to the movies isn't great because it's hard for me to follow the plots unless I really force myself to concentrate. I also find that my mind is often void of any particular thoughts (no blonde jokes, please). Just a blank -- which is very unusual for me.
I'm with Kaiser San Jose and both my gastro and hepa are fine docs, along with being well versed on HCV. Since transplant is out of their league, Kaiser has a sister program with UCSF and UCLA, in California, where I can meet w/their docs and discuss liver issues along w/HCV programs. Kaiser is their patient and I'm Kaiser's, so they bill Kaiser and then Kaiser bills me, if at all. My labs are done at Kaiser and then forwarded to UCSF for review at no charge. Kaiser has sister programs established in all of their coverage areas and you, as a Kaiser nurse, have inside access to them too. I'm not hootin for Kaiser just laying down the facts after seeing countless other docs. Also, you did not mention whether you have had a recent CT Scan, liver biopsy or labs. Please go get tested. You won't know what's going with your health/body until you do. I wish you the best.
I would agree that hcv pre-tx can cause "brain fog" and affect thought processes. I'm stage 3/4 (biopsy 4 yrs ago) have not yet started treatment. I was a computer programer/analyst (pretty good one) but was laid off a year ago. They were cutting 300 jobs but I really knew it was because of my job performance. I can no longer do what I loved to do. To me it wasn't a job but I had fun doing it. I can't go through all the flow diagrams in my mind like I use to. My concentration for any length of time sucks and I have to write things down to remember them. My body has that feeling when your coming down with something, that heavy weak feeling. This did not occurr overnight but over the last five years it has progressed to the point I'm not sure if I can work. Find a good hcv doctor because if you don't it will lead to much frustration and confusion that will add to "brain fog". I hope the very best to you and your endeavors!
I mentally have been going through much same sort of thought process as you have describe. I have lost many interests over the last 7-9 years and just never made a total connection to Hep-C. It is some comfort to know that there are others that have this problem and relate it to this D*M virus.
I have found that spell check is one of my best friends, and I should get some stock in post-it-notes.
May I ask, what type entertaining do you enjoy now?
I did a Google search on Acetyl-L-Carnitine and was delighted to discover that there is a clinical study sponsored by the National Institute of Allergy and Infectious Diseases and the Neurologic AIDS Research Consortium (NARC) "to determine if acetyl-L-carnitine (ALC) reduces pain, numbness, and tingling in the feet and legs of patients with nucleoside reverse transcriptase inhibitor (NRTI)-associated peripheral neuropathy."
Since since I have both brain fog and peripheral neuropathy, acetyl-L-Carnitine might be worth adding to my arsenal.
How quickly can I expect the fog to clear when I start taking this? Is there any reason why I can't take it daily? (It sounded like you only take it on occassion).
GARDENING!! It's really a mindless hobby that brings me a lot of satisfaction. I spent a hour this morning before work doing some pruning and loved it. But I really miss the enjoyment I used to get from reading. I do a lot of reading for my job and it's such a chore now. No pleasure at all.
Wow, what a compelling testimonial. It's too bad that your mother was reluctant to continue taking it. But I can understand her point of view. Before being dx with HCV, I was extremely skeptical about "alternative" medicine. Now I've turned 180 degrees in the other direction because the results are truly impressive.
(Disclaimer to all newbies: HCV cannot be eradicated with vitamins and herbal supplements. Interferon and ribaviron offer the only possiblity for a cure).
<a href=http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11826420&dopt=Abstract><b>Hepatitis C and cognitive impairment in a cohort of patients with mild liver disease</b></a>
Forton DM, Thomas HC, Murphy CA, Allsop JM, Foster GR, Main J, Wesnes KA, Taylor-Robinson SD.
Hepatology Section, Division of Medicine A, Faculty of Medicine, Imperial College, St Mary's Hospital, London, UK. d.***@****
Patients with chronic hepatitis C virus (HCV) infection frequently report fatigue, lassitude, depression, and a perceived inability to function effectively. Several studies have shown that patients exhibit low quality-of-life scores that are independent of disease severity. We therefore considered whether HCV infection has a direct effect on the central nervous system, resulting in cognitive and cerebral metabolite abnormalities. Twenty-seven viremic patients with biopsy-proven mild hepatitis due to HCV and 16 patients with cleared HCV were tested with a computer-based cognitive assessment battery and also completed depression, fatigue, and quality-of-life questionnaires. The HCV-infected patients were impaired on more cognitive tasks than the HCV-cleared group (mean [SD]: HCV-infected, 2.15 [1.56]; HCV-cleared, 1.06 [1.24]; P =.02). A factor analysis showed impairments in power of concentration and speed of working memory, independent of a history of intravenous drug usage (IVDU), depression, fatigue, or symptom severity. A subgroup of 17 HCV-infected patients also underwent cerebral proton magnetic resonance spectroscopy (1H MRS). The choline/creatine ratio was elevated in the basal ganglia and white matter in this group. Patients who were impaired on 2 or more tasks in the battery had a higher mean choline/creatine ratio compared with the unimpaired patients. In conclusion, these preliminary results demonstrate cognitive impairment that is unaccounted for by depression, fatigue, or a history of IVDU in patients with histologically mild HCV infection. The findings on MRS suggest that a biological cause underlies this abnormality.
PMID: 11826420 [PubMed - indexed for MEDLINE]
PUBLIC DOMAIN MATERIAL
Hello there! There is a lot of similar documentation of cognitive impairment caused by Hep C, and yours is a complaint I've personally heard from a number of people who do heady or high-stress jobs. I'm so sorry to hear that this disease is starting to make its presence known in your life. I've taken Acetyl L-Carnitine (500 mg bid) when I need absolute mental clarity and find that it helps a lot. Its price, however, is a tad disagreeable. As for Kaiser, it does seem to be a matter of finding the right regional center and personnel to work with. (Good info, BZZRACER.) What part of the country are you in?
Yes, we are all losing our minds AND we have a solid alibi. :) Reassuring, isn't it?
As for the Acetyl-L Carnitine, there's lots of additional documentation on the lef.org site. (Speaking of brain frogs, Tony, I just typed "sight." Aargh!) I first discovered it when my mother suffered an incapacitating stroke and was struggling to overcome cognitive impairment. She did so much better when she took it (3 gms daily), but frugality and skepticism about supplements took over and the rapid advances she made just disappeared when she stopped it. The difference in mental function was stunning.
Susan, it can definitely be taken daily and I had intended to while taking combo treatment, but I'm just surrendering completely to the fog right now. Acetyl-L Carnitine definitely promotes mental focus and clarity without a "speedy" effect. Still, I wouldn't take the second dose past the late afternoon.
See, I sound high functioning, right? But that took WAY too much effort to produce. Wheel me away, boys....
I'm not being impudent, but will you tell us what your post means since we have brain fog and our cognitive skills are diminished?
Actually, thanks for your post.
This is for everyone and for what it's worth:
I am by no means an authority on HCV. I have had it over 30 years, dx 11/04 and started tx last week. I am 1b, vl 2.5mil and bx grade 2 stage 1 with mild fibrosis. I felt my cognitive skills have been suspect (lacking) for a long time. I was some what relieved when I was dx. I knew there was a specific medical reason for my perceived brain fog and the occasional all over malaise feeling. I can only begin to explain the sx's concerning tx. Over the last few days, at certain intervals of the day, the brain fog lifted. My cognitive ability was so acute I read everything I could get my hands on. However, being acute, it was short lived. I now go in and out of brain fog. When I am in bf I have no interest in reading at any length of time, but I am hoping tx will change that.
That med report is a little scarey. It effects our nervous system? I really feel invaded now.
I find the pre-tx 'brain fog' and encepalopathy is now a great blessing in disguise post- tx and currently 3yrs SVR.
Any unpleasantness in the 35yrs I was infected is now just wiped out and I don't have to remember it @ all. B/I have no problem reconstructing pleasant memories. And I just blame it all on the hep c! ditto w/past emotional outbursts and forgotten promises.
i do have to watch my diet now like a hawk b/c I really don't want any ammonia build-ups and 'foggy days' now. I have yrs of reading to catch up on.
Wicked! And no, no subtitles for you....until I start speaking in tongues, of course. With seven more shots anything is possible.
You know, you just perfectly described my own mental abilities on tx: short bursts of profficiency and then profound brain fatigue, inability to concentrate or read long enough to cover real ground. You'd laugh if I told you about the kind of work I thought I was getting done this year--so to protect the innocent and even the not-so-innocent, I won't. Too darn humiliating. But even so, this pegylated interferon is infinitely kinder to the mind than the earlier stuff. As I remember, producing anything beyond a simple sentence was exhausting, conversations were very hard to follow, and for all this the success rate for monotherapy was only around 10%. Talk about adding insult to injury! You got to be dumb, mute, _and_ a treatment failure.
Nervous sytem involvement? Well, yes, but there are always counter-measures. Just wait til DoubleDose returns as this is his particular research specialty, and a grim one at that. All I can suggest is that you try not to stress overmuch about our multi-talented little bug. You're being proactive by trying to eradicate it and that's all you can humanly do. Just concentrate on getting through this treatment with as much self-love as possible. And take pride in the fact that you're doing the right thing, because doing that is never easy.
Hello califia - thanks for the great info, as always - and I hope you are sailing through the last weeks of tx... or paddling with both paddles, anyway.....
I am 16 weeks in, and have been fighting the brain fog bigtime... but alas, I think it is now winning... I am still working, but don't know for how much longer - I feel like maybe one of these days my brain will just freeze up or I will make a huge mistake, and I will just go home and play with my cats for a few months... It's funny, this fog has all kinds of presentations and variances, today it was just so bizarre - I felt really detached from the world... my best times are between 1 and 4 p.m. mornings are blurry, nights are blurry. I also experiance kind of an almost surreal presence at times, and it can be kind of trippy - so this stuff definately plays with your mind..... but it's encouraging to know it will go away after treatment, and it does come in handy as a 'truth serum' (yes, Califia!) to sort out one relationships in work and like.. mixed blessings, no doubt...
peace and blessings to all
Nothing like a good scientific study--or a little touch of scandal--to wake us all up, wot? Carolhab, and family members one and all, you hang in there. It's wonderful and strange to feel such chemical detachment from one's immediate surroundings and yet also such a sense of sheltering reality and intimacy with so many invisible friends. The Church of Interferon lives.
Brian fog shmog, you are one of the brightest women i've ever had contact with, phooey!!! Sometimes if we don't come up to our own high standards for ourselves we can exaggerate the importance of some percieved impairment. Bush should have the brain fog you have, he'd do better... Anyway, you'll get back your high standards when youre through with tx anyway... lil big mouth.
Thank you for all the helpful information. I don't work for Kaiser but I do have them as my insurance. This may change as I may be changing jobs. It seems like everytime I attempt to address my Hepatitis, something else distracts me and I put it off. I know, I can hear all of you from here. For example, I am having foot surgery in April and will be convalecsing for three weeks... Those of you who are familiar with Rosanne Rosanna Danna's grandmother, "It's always something." I have a very poor short term memory but my long term memory is totally intact. LOL!!!!! I'll be 50 on Saturday, maybe that's part of it too. God bless all.
I too, am on Kaiser and have found my care/tx to be very good. Upon being dx, my internal dr ordered all the labs that my gasto would need prior to my first appt. w/him. From the bx to tx, the nurses, docs, pharmasist, all have been great. My only complaint is that my dr says there is no need for a 12 wk PCR and I am now at the half way point (12/24)
He told me this week, that I can call today to get my ALT and that should show if I am responding. I questioned the PCR and he said "We don't do it yet". I wondered if it was a Kaiser response not his personally.
I am just so ever grateful to be on tx, and that my co-pay for the meds totals 20.00 a month! For me, that is key to being able to do tx. So I will wait for the 24 wk, Liver Function Test.
Brain fog, had it all my life, (they say I have had HepC for over 25 years, I am 43 years old) I do have my moments of clairity and look out cus I turn into a Tazmanian Devil getting things done. Then it is back to being close to lathargic!!!
Brain fog was an issue for me while on tx but like Rev, I feel much sharper now I'm off, but still a way to go. The thing is this though, all of my friends from those in their 30s to those in their 60s all report the same type of brain fog; losing track mid sentence, short term memory loss, etc.
Don't you think our lifestyles have a lot to do with increased brain fog; just too much on our minds?
I'm wondering if I am just not as concerend about times and dates as I used to be which is why I need to write most things down otherwise it's gone? Or, my brain fog is worse than I think it is?
Things that make you go: "Hmmn!"
You wrote: "Sometimes if we don't come up to our own high standards for ourselves we can exaggerate the importance of some percieved impairment. "
Uh, thank you for your post, I guess. Nothing like starting the day in a state of embarrassment. Btw, what it feels like on treatment--catchy little pop tune, isn't it?--is unimaginable when you haven't experienced it. 'Nuff said.
Hey, just wrote that when i was real punchy, you know, my own version of brain fog. From now on i'm going to try to have someone gauge my punchiness other than myself when i'm up that late. What I hate about the written word in communicating is you can't put in a wink wink. Or perhaps you can, but I don't like those little smiley faces, but that's just me.
I just meant that on your worst days you're better off mentally then most people. Like, you're real smart! It's a good thing! But I do know people who are on tx that are really frustrated that they don't come up to their own high standards, which is understandable. I go up and down, maybe most people do, feels like failing faculties or moments of clarity.
As you're new to this list, you may not realize yet that none of us are in the regular habit of getting real personal. That's not what this is about. There are tons of smart people on this board. We are here to share our hepatitis knowledge, both theoretical and anecdotal, and to exchange information about what our various hepatologists are doing and thinking across the country....a kind of information that can't be found in medical journals. Primarily we are here to support each other through interferon treatment. As a patient I do not appreciate being told--by anyone--that I'm not experiencing what I'm experiencing. It feels like invalidation, which I do not come to a support board to experience, especially a board that has come to feel like a second home.
Last night I picked up my copy of The Bourne Legacy and had to go back 10 pages from my bookmark before I could remember who/what/where/when. I was so mad at myself. Sometimes I can laugh, sometimes not.
Great thread. I hope I can remember that I read it tonight when I pick up my book again.
I recenty bought Bourne Legacy too but haven't started it. Am ready Patterson's 2nd Chance. I haven't been too foggy today. I am awfully tired but can't unwind. I worked today. I work in an ICU in a long term acute care facility. Mostly ventilated pt.s but I am getting too old and tired for the physical aspect of the job. I applied for a job as a hospice nurse and was offered a job after two interviews and a ride-a-long. But they want to talk to my current boss before finalizing things. I hope he gives me a good word because I need to change my line of work. It will be less hours shorter days about the same pay with better benefits.
I'm thinking about having another biopsy this year sometime. My last one was in 2001. I was stage 2 grade 2 then. Any thoughts? Is it too soon?
God bless all,
OH by the WAY!!! Today April 2nd is my........
I am going to ride my Harley with some of my girlfriends and go to lunch. Then Hubby has something planned. woo hoo!
Have a great day all!! God bless.
Ahhhhh...The fog. It would seem that I am the only one, (and those close to me), who know just how fogged I am. Yeeeees...the fine art of walking through life as though everything is wonderful. I am truly NOT the same person I was before tx. Even my doc has admitted that! I have trying to figure out who this new guy is so I can proceed with life. I tend to gravitate toward the other person way and just get lost in the shuffle like a kid in the grocery store. Rather than freak out (like I did at first), I have chosen to embrace the new guy and I rather like him. Of course he cant do much physically or mentally and he seems to need lots of rest but people like to sit and chat with this person. He is really not that bad!! The other guy was always trying to be the boss and have things done his way(which of course was the right way), but the new guy has no choice, he is at the mercy of many so worry does no good. He is powerless over people, places, and things. He now swims(or floats) WITH the current. Life seems much easier and simple when you wait for the sun to come up instead of pushing it to meet your schedule. God does not need my help but I sure need His! I prayed to be taken many nights on this tx but was not. My journey is ever changing. each day is both different and never what I plan or expect. What now? I dont know. I will try not be upset about it. That way I may enjoy some of it. To me.. the fog is like a subculture...only those who are there, understand it and when I meet someone who is also there...we have fun!! Tlak to post chemo people. You will be amazed at the commonality of feelings and issues. Lets trudge the road of happy destiny!! Can you tell its Sunday and my first cup o joe!!
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