HCV and the brain. Interesting article

[DoubleDose]

The link below presents a very interesting and thought provoking article regarding HCV and the brain.  It has possible ramifications on everything from HCV sx, like fatigue and depression (and various psychiatric disorders), to issues like the possibility of persistant infection after SVR.  Note the reference to the 'different' strains of virus found in the blood versus that found in the brain, spinal fluid, and lymphocytes.  

The article raises many questions that should be explored in the near future.  Here is the link:

http://www.hcvets.com/data/hcv_liver/brain_dysfunction.htm

Thoughts and comments welcomed.

DoubleDose

[jaroman]

Scarey stuff!
I really want to kill this bugger.

[NYgirl]

I get tingling digits so bad I could poke them with a needle and not feel them.  I had no idea this had anything to do with HCV and thought it was a pinched nerve in my neck.

I am going to go read that article now but had to say thanks for mentionning that...one little detail that you throw in is sometimes something someone is really thinking about.

Thanks for always the great exchange of knowledge.

D

[NYgirl]

OK I really don't like that "trojan horse" theory...which has always made SENSE to me but I didn't want to hear it.

I mean testing our blood to be undetectible is one thing but if it's replicating elsewhere or plopped itself in our brain or heart or something then it's just a matter of time until our blood could be reinfected.

As for the fatigue and other mental problems.......brain fog brain fog brain fog.  EXHAUSTION. I want to make the people that I work with read THAT.

But of course...am I really going to make them? OH hell no!

I will read the rest tonight I just printed it out it's very long.

[Magnum]

After my first shot on my first treatment, all my fingertips went numb for over an hour. It was a very weird and worrisome experience, but after that one time, it never happened again during my next three treatmenets...

Magnum

[FlGuy]

On which part of your body did you do that first one?  I realize that it was many shots and many years ago.  Did you hit a nerve, maybe?

[Magnum]

Same as almost all my shots, my stomach. Occasionally, after being puntured a lot, I switched to my calf.

Magnum

[dyce]

Thanks ,I'll read that article.I hav't been posting here long,so please fogive me for the poor typing skill.I'v noticed since contracting this virus periods of depression and bewildered feelings.Previously I never felt like this!I guess it is the price I'm going to have to pay.Perhaps after I tx it will pass.
Dyce

[cuteus]

I had read that article when it first came out, and I am still scratching my head on the different genotypes. Is it definete or are we waiting for the results to be duplicated by someone? It is scary stuff.  SO, DD do you think the persistent HCV theories might go as far as stating that it is not only compartmentalized but it is under the disguise of another geno? talk about farfetched theories, I like that one.
TY

[jmjm530]

I admit to being lazy and only skimming the article. However, from what I did read everything sounded highly speculative and keep in mind they appeared to be referring to populations co-infected with HIV. Where I come out is that the older we get the sicker and more symptons we tend to have. If many of the symptons we all talk about aren't caused by the hep c virus, they will certainly be caused by something else. No one gets out of this thing perfectly healthy :)
Good to see you popping in with your usual optimism. LOL.

-- Jim

[cquest]

I KNEW I wasn't supposed to be this tired! Or forgetful! I noticed they say the participants in the study did not have cirrhosis or severe liver damage, just this virus and yet, they experienced brain dysfunction...hmmmm...makes ya think...with what little brain matter I have left anyway...I guess it makes sense and explains why I can't remember things...for instance, I have to remember 'account numbers' say, for instance, there is an Excel spreadsheet, I see an acct # on the log, have to toggel back to the system and enter that #, I cannot for the life of me remember a 6 digit # in the milisecond it takes me to go from one screen to another! I have to write it down! Seriously! Somebody calls me, I see their # on caller ID, I go to dial the number, can't remember it, go back to the number, burn it in my brain, go back to dial, can't remember it...and so on and so on forever until I write the freakin' number down cursing the whole time...
Cin

[jmjm530]

Not being able to remember phone numbers starts at about age 40 in many of us. A good friend of mine has all the same complaints but he doesn't have hep c. Rather than extra meds, extra pens and pads of paper are in order. LOL. But seriously -- and I'm not saying there aren't exta-hepatitc ??? symptons, but a lot of the stuff I hear attributed to hep c is very common with the normal aging process. Being tired and fatigued I believe is the number one complaint in America.

-- Jim

[sailinlady]

I do that all the time, blame it on brain fog.  However, I believe the age thing comes in to play as well.  I have a lot of friends my age who are very healthy and have the same thing going on.  I will read the article tonight so I honestly don't have an opinion as of yet.

[sailinlady]

We must have the same brain fog!

[sindog]

I did read that learning a foreign language later in life improves memory. The intresting thing, it wasn't actually learning the language or the progress, it was simply the attempt. I had some more info, but I forgot. And I'm just to tired to remember.

[DoubleDose]

Chev:  Great to hear from you as well.  I hope everything is still going very nicely for you.  Sounds like most, or all of your prior sx have more or less vanished....and that is fantastic.  Maybe it is a sign of true 'eradication'.  Let's all hope so.  Best to you for 2006!!!!

Jim:  I do hate to be a downer, but I also try to be realistic.  Even though I am pretty optomistic in general regarding life,(or I would never have done tx...twice) I also feel a compelling need to get answers to questions that seem to beg for more information.  The issues of fatigue, brain fog, anxiety, behavioral disturbances, and depression in HCV always seems intriguing because these problems rarely seem to correlate to things like liver stage/damage, or viral load, or length of infection, etc.  Makes you wonder where the 'brain related' problems come from.  Even though it scares the #*@# out of me, I feel the need to understand what is going on regarding this 'potential' brain infection, and the possibility of 'compartmentalized' or 'persistent' infection even after SVR.  If there is something to this issue, then we all need the researchers and pharma firms to find more solutions for us...sooner.  Rather than later.  And I truly hope that the persistent infection theory is totally false!  But at this point, I need proof!  There is too much contrary research coming in every year to ignore the issue.  

Cuteus:  I hope you are doing well also.  Good to see you on the board.  I truly believe that our sharing information, personal experiences, research discussions, observations, etc. with each other will give us more insight into the riddles surrounding HCV than anything else.  Many of us have been frustrated by the narrow, often disbelieving approaches to understanding this virus taken by very highly educated doctors.  Often they do not even give any credibility to specific patient experiences, symptoms, or concerns.  We need more scientists who are willing to dig and explore, to get the real answers.  Not just textbook responses.  Best wishes to you for the new year!

DoubleDose

[Califia]

I really want to apologize for the long delay in responding to all the great hard-warming responses to my "tenderfoot' post.   Thanks so much, you wonderful people.  I tried and tried, but threads kept abruptly closing on me one after the other like doors in a Kafkaesque hallway.  In frustration I even tried opening a new thread at 2 am (up late roasting garlic and kabocha squash, don't ask)--but even that was to no avail.   Devious MH software?

So let's see, where were we?  Ah, neuropathy.

First a quick detour, though.  GOOF, thanks for your reasonable explanation  a couple days back.   Thought that was going on, but  I was worried that _any_ sort of attention was just further fuel for the toxic flames.  Btw,  I'm just beginning to realize that  we be neighbors.  Can probably see your roof line from my front porch in K---------.  

JM JM:  Point well taken.  Couldn't agree more about the need for moderators to save us from our selves.   That last outbreak of idiocy was allowed to go on far too long.

COUG:  Don't worry--your mind will come back.  I swear.  In fact, I'd bet that within 48 hours of quitting the riba, your utility bill will stop looking like it was written in 3rd century Chinese.   I'm terribly sorry you're having the same kind of experience that I did on tx, but hey!  You're in good company.

And now, finally, to the non-stop buzzing, tingling, throbbing joys of post-chemo neuropathy.

HEPGUY:  Thanks for sharing that very encouraging info about your neuropathy eventually resolving after 9 months-post.  

KALIO the !st:   This is definitely interferon-related; no prior experience w/ this problem.   I appreciate your sensible advice, straight outta the school of hard knocks.  You, too, CAPT 82:  you've really been through it.  Great to hear from you, though, and big congrats on the Un-D.   As for your lycanthropy, perhaps you should keep a few Howlin' Wolf tapes in your glove box in case of sudden onset.   (Btw, I'm going to investigate the Lyrcia.)   SNOOK:  Endoscopy?  Whaaa?  Is this punitive or just purely diagnostic?   OMYST, MONTE & FTX23:   This neuro stuff is probably more widespread than we realize....or should I say that you put a human face on the statistics that around 30% of tx'ers are afflicted with neurological problems.   To both of you:  Ow!   The trigeminal nerve clue is really provocative, as I, too, have been suffering fairly constant headache post-tx.  Any connection, I wonder?  And to CUTEUS, CHEV, TALLBONDE, FRIOLE & anyone else I have foolishly forgotten to mention,  peace, love and big thanks to you all.    (Why does this sound like a bad Academy Awards speech?)

[DoubleDose]

I have also been dealing with a variety of neurological problems after tx.  I am 27 months post-tx, SVR, and still have ongoing neck, shoulder, and spinal 'buzzing', tingling, pain, and sometimes numbness.  The neck and shoulder problems sometimes feel like a vibrating, electrical throbbing that can sometimes be painful, sometimes pressure-filled, and sometimes almost numb. I can no longer sleep on my side without severe pain and numbness!  My balance sometimes feels out of whack when I experience these problems.  When I am under stress these days, I feel it throughout my body, almost as a vibrating electrical impulse, deep in the spinal column.  It does not feel good at all!  I saw a top neurologist who said he saw nothing extremely serious going on...and recommended exercise and stress management.  Of course he could not have any idea how this really feels inside...but I guess I felt good just being told I was not a neurological basket case.  Other than the diagnosis and brief advice, I found no answers there. His exam was very superficial to say the least.

I wonder how many other post-tx'ers are going through similar stuff and not realizing where it all comes from.  I just hope it fades eventually.  Sometimes it seems that it comes and goes randomly, and sometimes gets as intense as during tx.  

DoubleDose

[Califia]

Oh dear, I'm really sorry to hear this.   Interferon & riba at this point in time have no doubt accelerated the aging process.  What a drag it is getting old and creaky instead of merely old and cranky!   Well, CTON probably has the right idea for us:  at the very least, we need to give ourselves permission to invest in as much deep tissue work and yoga / pilates / Feldenkrais regimens as we can afford.   It takes acute pain to get me motivated sometimes, but motivated I am--going to see a physical therapist/Rolfer on Wednesday to see if I can start turning some of this around with a little heavy assistance.  Have you explored any of those therapies and if so, have they helped at all?  All best to you, guy.

[GoofyDad]

Can probably see your roof line from my front porch in K---------.

Could be (is that the Northbay K-------- or the E Bay K---------), but you'd have to be pretty high up as I'm pretty low - my toes can get wet at high tide, and I ain't kidding.

I'm a fan of Cafe Amsterdam in F------, ever go there? Forsee doesn't seem to believe we have real honest to god hippies there. Foresee, this ain't no movie set, this is the real - unshaved, patoulli oiled, birkenstocked - deal.

[Califia]

In air fax mebbe?   I tried to count the number of  dashes but gave up. No, never hoid of it.   And that would be Ebay K, sir.  As in Barbie and K-K-K-Ken.    Truth of the matter is you can safely dip your toes in sea water,  unseen by the like of me or other uncouth hill dwellers, because the ridgeline gets in the way.   (Oh lord, please tell me it's not Bolinas.)

Can a person get kicked off for making obscure regional references?

[Forseegood]

Cafe Amsterdam in Fresno?

[Califia]

Yeah.

[cquest]

I know I've gotten older, jeesh I'll be 52 in a couple of weeks but I was talking to my daughter last night and she said she thought I was 'not quite senile, but almost'! How's that for a kick in the teeth?

My daughter also has HCV but says she 'can't deal' with more doctors and tests and prescriptions etc...I'll tell you all what her deal is: She got strung out on dope from some loser boyfriend...that was about 10 years ago...had another boyfriend that also caught HCV maybe from her, maybe they were doing dope again, I don't know...anyway he got so depressed, he was doing more and more drugs...they split up and he moved in with his friend...got trashed one night and was going to go out and his roomate took his keys (this was a few winters ago, not recently) and he got pissed and went out to sit in the truck anyway...this was winter...he froze to death...the family blames my daughter and also the roomate...Sooo, fast forward to the present and she is still on drugs for her past addiction, not Methadone but something else...the GOOD news is the insurance company has been such a-holes about authorizations, she has started to reduce herself from the meds and last night for the first time in years, she said she wanted off permanently! She said she is going to try and get off for good! Do you know how wonderful that is? Just had to tell somebody and my husband is sleeping (plus I'm mad at him lately and don't want to talk to him at all)
Cin

[jaroman]

I dont want to talk to my hubby either!
May your daughter make it this time. It souonds like she is finally ready. Best,best wishes.