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524608 tn?1244418161

Just Wondering....

I knew something was wrong with me many years ago. I was tired, and felt like I had the flu amongst other symptoms. I went to Doctor after Doctor without a diagnosis until about a year and a half ago. I didn't live a high risk life style so maybe the Doctors that I saw didn't consider Hep C....anyway...the point I am trying to make is that I felt bad enough to know there was something wrong...

first question....did any of you have a similar situation where you felt horrible?

second question....if so, could anyone feel a difference once your VL dropped...or are the tx drugs so harsh that it just wipes out any of the improvements to your health?
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524608 tn?1244418161
Right...I have been sent to alergist 3 times with the same result...no allergies. I have a cabinet full of allergy meds and every nasal spray known to man.

Good luck to you.

Gator
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Avatar universal
Yes, I was sick half the time for 20+ years going to several docs to find out what was wrong.  I even told them I had prior surgery in 1982 and I was acutely ill with elevated liver enzymes thereafter but they chose not to do a hep panel.  Told me I had "allergies."   WTF???????????

Anyway, I was dx'ed 3 years ago by my current doc who is an MD that prefers the holistic route if possible.  However, he's a realist and sees no alternative to currrent
SOC.

I'm with ya'll, I think a hep panel should be standard even with no risk factors seeing as how many folks don't know their mode of contraction.

Health to all!  Hang in there!!

Kittyface
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Avatar universal
FL..do you think that the fatigue could be because of the fibrosis? is it diminishing as your liver heals?
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Really hard to say since there are so many causes of fatigue. But even if it is from the fibrosis and/or the immune system fighting the virus -- SVR doesn't guarantee you will feel any less fatigued. And "no", the fatigue is not diminishing as my liver heals. Fatigue  are similar to before I treated, possibly a little more fatigue, but then again I'm a few years older. YMMV.
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I have gained a lot of weight over the past 10 years and would like to loose it. I feel as if the fatigue is a big part of the problem.
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Could be a chicken and egg thing here.  Are you overweight because you are fatigued or are you fatigued because you are overweight. I've found diet and exercise are two of the best antidotes for fatigue.

I do think that depression could be a part of it as well.
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IF one AD isn't working, you can try another. Experimentation seems very important with ADs. Same with shrinks :)


At this point, when I eat nothing but good foods I feel bad after about 5 days. I don't understand why...that started about 10 years ago. Been trying to figure it out ever since.
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Don't know what you mean by "good foods". Do you mean complex carbs? Some people don't react well to a high carb diet. In fact, diet is a very individual thing. Right now I"m somewhere inbetween the South Beach and Zone Diet. Have you tried either? Got to experiment as we're not all from the same cookie mold.
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524608 tn?1244418161
Jim...MMMM Halibut Steak....I like brussel sprouts too. I do like healthy foods...I just have a family who won't eat the same things that I do. Husband is very selective...grrrr...won't eat most green things. He won't eat fish either. Steak and potato man. When he isn't home for dinner I make a mean Lemon Pepper grilled Salmon.
Let me clarify the question about fatigue...do you think that the fatigue could be because of the fibrosis? is it diminishing as your liver heals? I can't imagin being so tired for the rest of my life. I am too buzy to be tired. I know that I am more tired while on tx...but I feel I am tolerating the meds very well otherwise. I am really very happy to have such a chance to put my life back in order.
I have gained a lot of weight over the past 10 years and would like to loose it. I feel as if the fatigue is a big part of the problem. It really kills my drive to do most things...I can't seem to keep up with my own life. Sometimes I can't even take the heat. I used to do a lot of yard work...I can't anymore. I do think that depression could be a part of it as well. I had a Dr put me on anti-depressants about 15 years ago...I gained weight. Back then it was ok...I was too thin. I went off the meds after a few months cause I still felt bad and lost some of the weight. I wish he had tested me for HCV then. I may not have gained weight at all if I had known what was wrong with me.
At this point, when I eat nothing but good foods I feel bad after about 5 days. I don't understand why...that started about 10 years ago. Been trying to figure it out ever since.

Susan...Yes, I am treating at U of FL as well...I am very fortunate to be in a Vertex trial. Thanks for the heads up on the luncheon. I would love to be a part of it. Might do me good as I don't talk much to my family about HCV. They are very supportive but don't really have knowledge of the disease.
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Avatar universal
Would you be possibly treating at that big hospital around the Campus of U of FL?   I am, that's why I thought I'd be nosey and ask.  BTW, I am in East-Central FL myself.  Lady Lauri is planning another FL luncheon as there's a whole lot of us on here on MedHelp who are in FL.  Just PM Lady Lauri and she'll give you all the details.  

Susan400
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Avatar universal
I don't feel more fatigue since treatment, just the same levels as prior to treatment. My last Fibroscan (4 months post treatment) showed stage 2 which is less damage than before treatment, not more. For all I know I'm stage 1 right now. My main points were that fatigue prior to treatment in many cases may not be related to Hep C at all. And that many of us post treatment have the same fatigue levels (or greater)  as before treatment. I'm used to people"bleken" sardines and egg whites, so don't worry. Tonight I had a grilled Halibut Steak, Salad and steamed brussel sprouts. Sometimes, I just gotta live it up :)

-- Jim
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524608 tn?1244418161
Tks for all the good info...do you think that you feel the fatigue more so because of the stage of your liver? I wonder how much you have healed since ending tx. When was your last biopsy? I also wonder if there is coloration between bad side effects and the stage of a patient’s liver. I am hoping to make a complete recovery since I am still stage 1.

I guess I really need to read the old posts...maybe after Squishy goes home. I am sorry that I "bleked" your sardines and egg whites it was rude of me. I wish I could eat healthier.
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Avatar universal
In case you missed it, currently another thread on post tx fatigue:
http://www.medhelp.org/posts/show/550892
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Avatar universal
I had bouts of fatigue prior to treating. When I asked my hepatologist could the fatigue be related to Hep C, he said, "quite possibly". When I asked him if the fatigue would go away if I treated successully, he said, "quite possibly".

From what I've read fatigue is assoicated with Hepatitis C, but its also probably the most common complaint doctors hear in the non Hep C population as well.

I treated for Hep C and am now 2 years SVR. My fatigue levels are about the same as before I treated. This correlates with many experiences here of those who are SVR. While some say their fatigue has disappeared, and equal -- if not greater number -- says they have more fatigue after SVR, probably due to the treatment drugs. Most, like myself, report similar fatigue levels. I also saw a study that said 20% of those treating had less fatigue after treatment. That means that 80% didn't. And no I dont have that study handy nor will spend the rest of the weekend looking for it, so anyone interested can most probably find it themself with some time and effort.

I think there are many excellent reasons to treat for HCV. For me, the catalyst was a biopsy that I was told put me between stage 3 and stage 4. Until then I was in "watch and wait" mode and probably still would be today if that biopsy had showed me to be stage 2 or less, or possibly even just stage 3.

My opinion is that anyone treating primarily because of fatigue is taking a big risk in that the odds at least from anecdotal accounts here are that they will come out of treatment with at least as much fatigue as they had before and perhaps more. Some say that this group has a larger per cent of those with bad side effects than the general Hep C population. Perhaps but perhaps not, as there is really no way to know.

As far as feeling better when the viral load goes down when on the treatment drugs. In general, most people feel like sh*t on the treatment drugs so I think that is a very unrealistic expectation.

As mentioned earlier, there are many other reasons for fatigue than Hep C. Just google "fatigue" and spend a few weeks reading :) It could also be allergies, lack of exercise, diet, thyroid, so many things, including depression which not always means you feel "sad".

For me, diet and exercise have always been the best antidotes to fatigue. Currently I've upped my exercise program and cut out a lot of carbohydrates. My fatigue levels have improved. I've also found keeping busy with something you really like -- or better something that you're passionate about -- also keeps you vitalized.

I'm in no way minimizing the potential Hep C has to cause fatigue, just trying to relate my experiences and those of others that I've read. We have one poster, for example, "MreMeet" who reports a significant reduction (perhaps elimiation) of fatigue due to SVR. He treated with Telaprevir for 48 weeks. But again, he appears to be in the minority at least from my take from stories from this group.

-- Jim

-- Jim
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475300 tn?1312423126
Now that IS scary!!!!  
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Avatar universal
What is really scarry is that I went Friday to a doctor I had been to several times because I have bronchitis and needed antibiotics.  When I told him that I have Hep C he started asking me about my sexual life and partners.  I didn't feel the need to answer these questions and asked him why he is asking them.  He informed me that this is a STD and my partners need to be informed!!  I was floored that a medical provider doesn't even know what Hep C is!!  He actually tried arguing with me when I told him it isn't an STD and is blood born and the change of catching it sexually is extremely slim.  I have printed up some information from onine explaining Hep C and am going to take it to him Monday.  I really think we need to find a way to get the word out more to the public as well as the medical field about what this disease is.  
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Avatar universal
Question #2...
My vl went down from 45ml to und at 4 weeks.  I could not tell I felt any different/better physically to tell you the truth.  But that gave me a mental boost.  :-)
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524608 tn?1244418161
Anyone who would like to add to this, please do so. Doesn't matter how long it is,
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149675 tn?1416673133
I ahd a similar experience. The worst part is that in like 1994 maybe I had participated in a blood drive at work only to get a letter int he mail telling me they could not use my blood because I tested positive for Hep C. I was like what is that so I went to my doctor (GP) and he did another test and confirmed it. I asked him how can that be I feel fine where did I get this and what do I do? He informed me that all it means is i was exposed at sometime and I had anti-bodies not to worry about it. So I put it out of my mind. Then around 6-8 years ago I was always getting sick and feeling like ****. The doctor (new one) checked for lymes disease, Epstein -barr, chronic fatigue. I wa beginning to feel like a hypochondriac. Finally I just mentioned to my doctor about the blood donor thing and asked if that had anything to so with it. Her eyes became as round as saucers and she ordered tests then sent me to a gastro. Then I decided to learn as much as I can about this disease and have not stopped reading and learning since.
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524608 tn?1244418161
Wow...you are the poster child for what I am talking about....Something needs to change.

Thank you for your input.

Meki...you're right it's no conspiracy...just stupidity or lack of professional consciousness. It doesn't really matter what they diagnose you with...they still get paid. It's ok to try different things when you are fixing a car or refridgerator.  When you put drugs into someones body you should check to see if there is anyway it could damage a person. Every time I have gone to a new Dr, I fill out a form and answer questions about previous dianosis. The forms should ask if you have ever been tested for....Hepititis or HIV or Diabetes or other devistating diseases....wouldn't that make more sense.
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Avatar universal
Yes, I was misdianosed also....I felt bad for about 10 years. I was having minor sugery and they discovered that I had low platelets (28 thousand) and sent me home without sugery Iwas referred to a hemotologist/cancer Dr. who did a bone marrow test them dianosed me with ITP (autoammune disorder) and he treated me with high dose steroids for six months. It caused diabetes and I have been told that it is really bad for your liver.   Once I was correctly disnosed by another Dr. 3 years later I was stage3/4. I have had one failed tx so far and am getting ready to tx again.      
           I didn't fell better on tx but knew I need to do it to get rid of this damm disease!  I had another biopsy 2 weeks ago and am wondering if my treatment did help my liver even though I relaspsed.      Take care now,    -Libby
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217229 tn?1192762404
I do too!!!!

I'm like ----EVERY 2 FREAKING YEARS....

But then - if they had caught it in me --- I wouldn't be paying the thousands of dollars I am... The hundreds of thousands of dollars over the last 10 years trying to figure out what is wrong.

I don't think it's a conspiracy --- but dang --- IF I were a conspiracy theorist, I'd think the pharmaceutical companies really --- REALLY --- want people to get sick, so they can't find a cure... so people have to pay for treatment and other items... and the Medical community makes more money on trying to find a diagnosis.

I SWEAR --- human beings need computer chips in them just like cars today ---- plug it in and tell you the diagnostics...

LMAO!

Yeah guys - it was awful - I felt like a hypochondriac.

I also still do with the pain I'm having - but I'm more vocal about it...

I'm more --- GET TO THE BOTTOM OF THIS...

Instead of going -- oh - ok... sure - I'll try this drug... or --- I'll try this exercise... Or I'll have this surgery... Or that test... Or that exam....

Yeah...

Hey FL gator --- this was a good question.

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524608 tn?1244418161
Thank you for sharing with me...every one of these that I read gives me justification to do something about it. This virus ***** the life out of too many people. When you go to a health care professional you expect that they will be diligent in finding the problem and not just throwing potentally harmful drugs at it or in your case gallbladder surgery.

From a patients point of view it's about health care...From a Dr's point of view it's money...
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Avatar universal
I don't have an answer to the original poster's question but I would like to jump in and tell of my history with Hep C.  I was diagnosed during April/May 2008 but I most likely have had Hep C all of my life from a tranfusion or from rhogam shots in the late 70's during pregnancy.  

I, too, have known for years something was wrong with me and I eventually developed an aversion to doctors because they never took me seriously.  I only went to the doc once a year for my yearly physical and I have to admit I started withholding my symptoms because they were always brushed off.  I knew of elevated LFTs for the past 2 years and an ache in my right side but my doc never wanted to do anything - just told me not to worry about it.  I did worry.  I did research and I called doc back and asked to have my LFTs rechecked in 6 months and they were still high and he still said don't worry.  Anyway...fast forward to this year's physical and it was the same thing only this time I insisted and re-insisted that doc test further and he finally did.  Yep...Hep C positive.

At my first GI doc appointment, I was told that my LFTs were elevated back in 2002 just before my gallbladder was removed but I had  never been told the LFTs were high until 2006.  I'm pretty sure that my gallbladder was removed when it shouldn't have been; it was sxs of Hep C, not gallbladder.

I have told all my docs over the years that I had a transfusion as an infant but they treated it as a non-event...just scoffed at it.  And since I am an anti-drug, anti-tattoo, anti-anything remotely associated as a risk factor, the docs never, ever suspected I had Hep C.  I actually feel like I was punished for having been relatively healthy...cuz they didn't look for reasons why my LFTs were high or for reasons for my vague sxs.

Do I feel like the medical community failed me?  YES.  But, I have to rationalize that had it not been for the transfusion I would not have lived and the rhogam shots were necessary too so I've had a pretty good run for 53.5 years.  I just wish it would have been caught sooner because the signs and symptoms were there long ago.

Do I think Hep C should be a routine test for everyone?  Absolutely I do!
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524608 tn?1244418161
I can relate....I am really not happy that it takes so long to get a diagnosis for this disease. Now that I know that I am not the only one who went too long, I want to do something about it...I just have to figure out what and how...maybe this is my purpose. I feel very strongly about it. Dr's prescribe drugs for things like depression...so many drugs on the market today are hard on the liver....they should have to test for hep before they write a scrip. My heart goes out to you. I hope you will respond to tx quickly and completely.

I am in Central Florida. Most of my family lives in Volusia county...I want to move back there. It's a much slower pace, less traffic and I love the beach. Husband needs some arm twisting.

Ft Myers is nice...we have some property there (Lehigh Acres) and we go check it out on occasion...can't believe the growth...getting very congested. I think it is the fastest growing county in Fl...lot of Blue hair.

Good luck and blessings...please let me know how you do in tx.
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Avatar universal
I used to feel like I was going crazy because I knew something was wrong with me but it seemed the doctors wouldn't believe me.  I was diagnosed with Fibromyalgia, chronic fatigue, depresson.  I had one doctor that kept insisting on giving me meds for depression and I just couldn't convince her that I was not depressed.  Each time she would increase the script I would throw it away.  After the 3rd time I found someone else.  I have been dealing with this for over 20 years.  I do have 2 herneated discs in my neck/upper back area so of course I am in pain from that.  I am genotype 1 with stage 3 liver disease.  I will start treatment in a week or two probably as soon as I figure out the copay thing and am just praying that it will work.  Doc said that stage 4 is the worst so I am hoping to kick this thing before it gets any worse.  I am only 40 and have too many years ahead of me to feel like **** all the time.  

If you don't mind me asking..what part of Florida do you like in?  I lived in Ft Myers until about 3 years ago.  Still have one son there.
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524608 tn?1244418161
Squishy Pants...also known as Squishy Pickleface...My grandaughter...she is my SunShine...full of life and character...see pics

Ahhhh....Daytona Bike Week...preceede by Speed Week and followed by 4 weeks of springbreak...Yes, there is plenty of stupid floating around. I lived there in 1987 and I'm sure I got caught up in some of the stupid that was going around...no iv drugs or tattoos...just lots of drinking...occasional cocaine which could be how I picked it up...but none of the others that I did it with have Hep c...so I think it was getting my ears pierced...but who knows.

I never thought for myself of Hep C as a diagnosis...I found so many other things that it could be...I was shocked when I learned....
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475300 tn?1312423126
What is your Squishy?

Yes, there is a light.  My mom was upset too.  I also fetl relieved with a diagnosis.  All that B.S. made me feel like a hypochondriac  LOL

Denise
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524608 tn?1244418161
Meki...I know what you mean about feeling relieved when you got the diagnosis. When I was diagnosed I didn't really understand the severity of the disease. I called my Mom who is an RN and had been trying to help me make sense of my symptoms for years and told her...like it was good news...I think she couldn't breathe for a minute. She was really upset. Then I got upset. I told her not to tell anyone...so she called my Sister (grrrrrr) and yakked to her...and my Sister called me barking out herbal remedies. Sister is mad at me right now for going through drug therapy instead of using alternative means to maintain my health. But I want to drink beer again with my tacos and pizza...and have Burgerville Pepper Bacon Cheeseburger with strawberry shortcake and an extra side of ice cream for dessert....mmmm....without any inhibitions. I'd rather clog my hart and die quick than waste away slowly without indulgences. I want the energy to build a butterfly garden for my Squishy. I also want my Hubby to get more...

In all I do feel like there is a light at the end of the tunnel. I do feel better too since I can treat the symptoms with diet and supplements. It is a relief to finally know.

Scratchinghead...Honestly...you have to give somewhat of your life history to answer this post...don't be sorry...just tell me where Burgerville is....K?

Hector...will the new drugs help you in any way? Have your doctors discussed these with you and can you maintain your health till they are available? I have had so much good fortune in my life that I wonder if it will run out with this treatment and I may be a non-responder.
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