Vision Blurr

[cajunlady]

Hi all,

I did read the other post and thank you all for the help. This is to say the least very overwhelming.

One question not answered and I think someone else had a question about this yesterday too.  When I read, my vision blurrs out after awhile.  Does this go away or do I just have to limit my reading.  Bummer if I do; this is keeping me a little sain.  And like I said earlier it always happens when I get to a really good part.LOL

Doc did tell me I could take 1000mg of tylenol before shot; but did not tell me I could take it through out,until 3 days later.  So second shot went better for me.  This time the tylenol did not work for very long. I will call Doc tomorrow; I may ever go to his office, since I am off work tomorrow.  My first visit after starting treatment is on the 30th

jmjm: I tend to agree the less the better; but I also agree that your body can not be in pain like that and heal itself. I have been told that if your body is in pain, it takes it longer to heal.(don't know how true this is; but makes sense to me).

I am tired; so I think I will go take a nap.  Just coming in here today has help alot.  Especially with the mind frame.

I will check back later. In the mean time please enjoy the thread.

Cajun  

[can-do-man]

Glad to see you back, and thanks for accepting my apology. Id just like to make one thing clear to all. Don't know, don't care who spacecoast4 or k2 is. My debate started over politics and this forum and went on to a long back and forth with andy over medicare on this post.

Q: Can lack of insurance be detrimental to your health - missey: 01/03/2006

After that i backed off and just watched until this post.

Q: Someone must know something at Vertex The stock is really going up - upbeat: 01/06/2006

And here on post 20 i made a comment about vertex and politics, and right after that i was being accused of being someone else. Which i never understood. But anyway i shot my big mouth off when i should have left it shut. Since done of my posts have been removed, i have nothing to hide.

I wish you only the best and quite frankly always enjoyed your sense of humor. Best of luck to you and your daughter and your grandchild. Having a grandchild is a life changing experience. That i do know and its great.

[DoubleDose]

I am not sure exactly what your doctor is referring to as far as the virus 'hiding and changing it's DNA'...this is not anything any major researchers or liver specialists, or HCV doctors are saying, anywhere that I have heard or read....and I review the literature pretty extensively!   The virus either responds or does not respond to the therapy, and in some cases it responds very slowly, in others very rapidly.  If you are undetected in four weeks you are a rapid viral responder, which means you CAN eradicate this viral infection IF you stay the full course, and remain at full dosages of interferon and ribavirin.  Your odds are very high, especially if you remain undetected until the end of your therapy period,... possibly in the 90% range, depending on certain variables.  Keep plugging away, and stay up to date with the mainstream information regarding HCV.  Much good info. is available on this forum, and also a variety of websites which publish the latest studies, and research articles regarding the virus.  Please ask your doctor to explain this odd theory you described, in more detail, and to reference where this information came from.  I would like to see some scientific support for this 'off the wall' notion that was related to you.  

You CAN very well become a Sustained Viral Responder, ESPECIALLY in light of your 4 week response.  Finish the good work, and please go the complete course at full dosages.  That will provide the best odds of success.  Your liver damage can be stopped cold, and frequently is regressed back to a lesser stage of damage.  Your odds of future liver problems will decline dramatically with the SVR!!!!

DoubleDose

[DoubleDose]

Jim:   I missed the threads below regarding relapse in cirrhotic HCV tx'ers, and have a few comments.  I guess the speculation revolves around: 1. the condition of the immune system at the end of tx, 2. whether there are indeed 'hiding places' within the cirrhotic liver that lead to relapse, and 3. Whether some are eradicating the virus, and others relapsing due to either 'hidden virus' or a 'faulty immune system'.

My question to you, and it relates to your previous positions regarding the validity and/or importance of 'persistent HCV after SVR, is why would we NEED the immune system to become involved after we end tx and withdraw the drugs if there WERE NOT replicating HCV remaining in our bodies?  You mention that Dr. Schiff supports the 'strong immune system' taking over line of thought, but to me this plays 100% into the 'persistent virus after SVR' research that we have all debated recently.  WHY would the immune system need to do anything after ending tx, if the virus were really gone...eradicated.  And IF the immune system needs to 'step in' and keep us SVR, then does this mean we indeed DO harbor some form of 'persisting virus', capable of replication under the right circumstances, and possibly capable of causing down road relapses?   If not, then the immune system theory is a non-issue.  If the virus is gone, it is gone.

THIS issue is exactly what is at the heart of all the current debate in the medical and research community.  Maybe you and I are more 'on the same page' than either of us realized.

I DO wonder why our immune systems could NOW keep the virus at bay, when it could not ever do that over all the years of infection.  It's a cloudy set of questions with few answers.

DoubleDose

[cuteus]

"Cajun on Eyes" ouch, that could be painful!


cajun; chronic pain is a very under treated condition in this country because of the fear of narcotics.  There are books written by physicians as to how people are allowed to suffer day in and day out because of the fear the DEA has inflicted on the providers.  Chronic pain is one of the most debilitating things a body can endure, both physically and mentally. You are right, having to deal with constant pain 24/7 will eventually take a toll of the physical health.  Do not suffer unecessarily when there is something out there that can be effective in your case. We all choose what we can live with, I chose to control the pain.  Good luck on your quest for relief.

[NYgirl]

I agree the less the better but there are times you MUST take two Tylenols and when that time comes TAKE THEM.

If we stop cutting ourselves off of all medications that are needed to make this doable - I THINK there would be more people quitting tx and that would be horrible.  Of course the liver is never going to heal that way.

Everything is such a double edged sword that we do and must be done in moderation, then I THINK it's probably ok.

Narcotic painkillers have a double effect for the body- but I think you must do what you must.  The only problem I see is taking them 2 every four hours or something...then you are putting also into your body the extra tylenol or ibuprofen at the same time.

So I guess my FEELING is that moderation is ok.  

We gotta do what we gotta do.

[cuteus]

here is an interesting organization
http://www.painfoundation.org/
and on the subject of addiction
http://www.painfoundation.org/page.asp?file=QandA/Addiction.htm
chronic pain sufferers, Unite!

[jmjm530]

Hey, my body currently is a human medicine cabinet, so I'm certainly not against doing what you gotta do :) My point was that sometimes doing too much can be counter-productive not only to your overall health, but even to how you feel as sides can compound other sides which then require more drugs for those sides, etc. Just be careful and tread slowly is all I'm advising. In other words, start small and work up -- don't start with the big gun meds unless required. And experiment some. Try your shot one night without Tylenol (hey you can always take it after your shot if need be) and see what happens. I found no difference so that's saved me from two tylenol every week.

-- Jim

[NYgirl]

J,

I am totally agreeing on what you are saying.  I think you got it backwards.

Lay off a couple Riba today dude your brains are spilling out hahahahahahhahah (I am JUST KIDDING HERE).

It's just funny though when you are trying to post in agreement to someone and they don't see it.  The internet is such a tricky thing and people who's brains have been melted by treatment trying to make SENSE is the hardest thing of ALL!

H3LL I never seem to know what I'm talking about anymore!

(But at least I rewatched my tv shows with my Tivo and can remember those episodes I watched already now)...total brain meltdown I tell you!

D

[jmjm530]

Oh...we agree...hey, that's no fun ... did you know *agreeing* can get you banned from MH .....(JUST KIDDING).

No, seriously, I understand our points of view here is similar. In Internet fashion, I sometimes write these posts as fast I can think, so the wording wasn't exactly write in the first sentence of my last post to you. But just remember what Rush said...where the H*ll are those pills. LOL.

-- Jim

[cajunlady]

I thank you all for your advice and other sites to check.  

nygirl:  You are so funny. I am in tears right now, but because I am laughing so hard. Oh, that darn riba.

jmjm:  I agree moderation.  And, yes addiction should probably always be in your thought through this. I have taken myself off of Xanax/Prozac before.  When I first went through menapause we had to put Sybil (other personality) back in its box.  Thats how they chose to do it.  After a few years on this I had enough; found out how to wein myself from it and did.  That was 3 years ago.

honey11:  I am reading Pillars of the Earth; very interesting and makes you humble in many ways.  I also read Harry Potter/all of them.  And, I have read 3 books by James Patterson lately.  I guess when my eyes get tired, I can go to crocheting.  At least I can do that by tough, somewhat. Can you imagine how that scarf would come out. LOL

Cajun

[strator]

I had posted the other day about getting floaters recently, but roxxiroo and all are right, about the best I can do when I'm reading or painting and my eyes blur is give em a rest, and hopefully take a nap. Even pre tx on the days I had trouble with my eyes doing detail work it usually signaled I hadn't gotten enough sleep.
On the shots and tylenol: I used tylenol more the first couple of weeks. Now I seldom take em during week. Not even sure why I take em with shot(#18/48 last night), I don't really feel any different after shot anymore, and go to bed a couple of hrs later. Even waking through night don't notice any extra aches or chills. This morning was up early and got more chores and artwork done before noon than on most days. Sometimes it just gets better.
Rest well, journey well,
Don

[jmjm530]

You know, maybe it's something really simple, like an outsider just having some "fun". And maybe it's not someone with hep c but I'm not sure. Frankly, I see it as something more complicated. Sounds to me like someone has some strong gripes with either the way this place is run or with some of the people in it -- and it probably goes back a long time because this place has a history of allowing insults and insults breed resentment.

Personally, I can understand these gripes because I also have strong concerns on what has been going on here for some time. T

he problem with the approach being used by mr./ms multiple personalities is that too many innocent bystanders are being hurt or turned away in this battle.

I don't see any solution other than MH stepping in and cleaning house a little.

-- Jim

[Forseegood]

No offense taken Chev, glad to say it, you and Jim do far more for this board than I do...hey, if this person minds his p's and q's far be it from me to do much about him...I don't want to be on any ban squad anyway, just lookin out for the newbies, as we all are...and I don't like to see people that I like and who contribute so much to the board be continually dogged and ragged on even if it's more annoying than anything...  but that's just me and I shouldn't be so much of a budinsky, I admit it...I don't really care if he's Soupy Sales in drag, as long as he at least "tries" to be civil...

Cajun: I take it your hubby works in the industry? we could be neighbors?...good luck to the both of you...tell me about it...I could throw a rock out my window and hit someone with this disease...hope for all of us that one day soon we can look back on this as the "old days" when there was only a treatment that was hell on wheels for some people, and only worked in half the cases for others...thank God for the people who do reach SVR, it's one of the tender mercies....

[honey11]

Cajun,,,that is interesting that so many upon finding out they have it,,,do something immediately and others just continue on,,,like its nothing.  I also know a couple of people that haven't addressed it and just continue drinking.  Doesn't surprise me a bit that there is many more in the lime light that have hep.  I can only imagine how many it would be,,,in  rock stars,,,musicians groups..

[jmjm530]

I use Genteal brand artificial tears in the mild formulation when my eyes feel fatigued or vision gets blurry. They also have a thicker formulation you can use at night but that in itself will make your eyes blurry.

A lot of us get eye exams before and during tx as the tx drugs in some cases can effect vision. Regarding pain killers, I can't disagree with what you said -- but it really comes down to risk/reward. Whenever I went on the heavier stuff -- be it for pain or to sleep -- I became so groggy that I was literally bumping into furniture. I think being on Peg, Riba, Procrit, Nexium Cozaar and Levatin is enough for now.

As far as shots and Tylenol are concerned, like many my sides from the shots aren't the first night but tend to build up over the next few days. You might want to experiment once without the Tylenol on shot night to see if you really need it.

-- Jim

[jmjm530]

I don't think I made any references to Schiff, but yes, I presented the immune system scenario as one possiblity. And, yes, that begs the question of whether the virus is truly gone, weakened, altered, playing hide-and-seek, somehow dormant or is acting in some other way we don't understand yet.

Like yourself, I readily admit I don't know any of these answers, and I don't believe anyone credible in the medical community has done more than speculate on this. The only thing that I feel pretty comfortable with is that what is currently termed SVR is the best we have and is strongly associated with the stoppage and even regression of fibrosis. As I approach 60 years old, frankly I have other health concerns more of a priority than any "occult" HCV virus that may be lurking after SVR. But of course I'd like to see research go on in this field and welcome all your thoughts and comments, and yes, we do agree on many points.

BTW did you catch my comments on a test that can differentiate between true immune system response and simply an interferon-spiked response? Teriffic if it ever hits prime time.

-- Jim

[beamishboy]

stator- glad to hear yr weekend improved,obvious to me,that you hav been subdued,otherwise occupied......Be Well..
Cougar--your comments on tripping /vision thing hit me just rite--now if we could just gain some psychdelic insights&send the virus into an alternate space.......Peace to you my friend
meds appear to be mellowing this particular group of survivors--Bodes well for All--support is what it's about

[jmjm530]

I had a feeling you've been around for quite awhile. Are you then on your second round of treatment? If you feel lke discussing, I'd be curious how your treatment approach is different this time.

BTW I share some of your concerns about what goes on around here just react differently. And regarding the "circle of love" I always get mixed up which circle that is around here LOL but I can say that Goofy and Forseegood are two different people and both are really stand-up when you get to know them. Beatle Bailey hasn't been around that long but also seems a good sort. Hopefully things will improve, or not.

-- Jim

[DoubleDose]

My mistake on the reference to Schiff.  I think you were responding to Goofydad in your comment about Schiff, so I assumed that, from the content of Goofydad's post, that Shiff was a proponent of the 'strengthened immune system maintaining SVR' theory.

At any rate, if what Goof said in his first post comes directly from Schiff and his colleagues, it would appear that they are not in the 'eradication' camp by any stretch.  Maybe this is why so many of us have 'autoimmune' related issues after finishing tx, and becoming SVR.  Maybe our immune systems are fighting a constant battle to keep the virus 'suppressed' thus triggering lots of generalized immune system 'attacks' within our bodies.  When we over-stress or over-work we often have huge flare-ups of 'autoimmune' symptoms, even though SVR, and maybe this is because the 'suppressed' virus is trying to reassert itself in a weakened body, and the immune system must fight even harder than it normally does, just to keep the virus in-check?????

Just a few thoughts.

DD

[jmjm530]

DD said: nd maybe this is because the 'suppressed' virus is trying to reassert itself in a weakened body, and the immune system must fight even harder than it normally does, just to keep the virus in-check?????
-------------

I think once they fully understand the immune system, a lot of things will fall into place. Hep C or not, the immune system seems to be in constant battle with the body and environment. Sometimes I suppose it gives out before a vital organ does, sometimes not. The Chinese are way ahead of us on this and their medical system has been focusing on the immune system for thousands of years. But Hep C appears to be a modern disease and seems to require modern drugs in those that whose immune system couldn't clear it naturally. Always good having these discussions with you.

-- Jim

[DoubleDose]

Great to hear from you, and I take it everything continues to go well for you.  Sounds like your prior sx are pretty much resolved.  That in itself is great news!  Maybe some of my problems are related to all the interferon, and the longer term after-effects of interferon.....and maybe not due to the 'persisting virus' which I seem to regularly attribute these problems to.  I am hoping that the former is the case, but have lots of doubts.  Some research seems to support real eradication, and even gradual loss of HCV antibodies...while other research keeps hammering away with findings of residual virus, compartmentalized virus, negative strand this and positive strand that, after SVR, and so on and so on.....

It seems to get more confusing every month, lately.

One odd thing I have noticed, as far as immune system after-effects:  I seem to regularly have a low body temperature...usually from 96.1 to 97.2 or so, even when very active and working.  My thyroid is in perfect adjustment currently, with a TSH of 1.2, using regular Synthroid, so that should not be the cause.  Also, I rarely run a temperature, even when I come down with a bug.  I am not sure if this means I am MORE vulnerable, or LESS, but the readings seem odd.  I wonder if either HCV or tx changes our regulatory systems, as well as immune systems...and if so...what that will mean in the future.  

I do experience 'autoimmune' type symptoms frequently, and maybe the body temp. issues go hand in hand with that....  Also, I recently started using Restasis (Cyclosporine) for my dry and imflamed eye issues, and it seems to be working!!!!!  Much less 'gunk' in the eyes in the AM, and more tears in the eye when wearing contacts.  It is aimed at 'autoimmune, and cytokine related eye problems.  The side effects are sometimes an issue, burning for a few hours, but that is supposed to resolve over several months of use.  We will see.  

Best of luck to you!!!  Keep in touch1

DoubleDose

[silverangel]

Hi. Regarding the immune system...
All that infor worries me!! Since I don't have a spleen and early cirrhosis, I guess that really compomises my immune system, doesn't it.

I found out that elevated lymphocyes and decreased neutroprils, have something to do with the fact I don't have a spleen. Since I have this chronic condition, HCV, I don't have a spleen to store all the excess antibodies, hence, enlarged spleen...so my body stores it within itself. As a result, elevated lymphs, etc. I think thats how it was explained?? Maybe not. Let me know if you have corrections or differant data.

I've been getting alittle confused lately, is that brain fog??

Scattered thoughts too, sorry.

[silverangel]

I also run low temps...only once did I have low grade temp since I started tx 7 wks ago.

[jmjm530]

We all were having a general and speculative discussion about the immune system in general and how it may or may not be related to hepatitis c. I have no specific knowledge, background or data regarding the relationship between your spleen, current condition and prognosis. Maybe other here can help but it sounds like something a good hepatologist can best explain. Meanwhile I wouldn't worry needlessly as many with cirhossis have good outcomes.

-- Jim