I haven't been on the boards in a long time now.
I remember when I first found out I had hep c how freaked out I was & how you and everyone else here were so great at putting answers in the place of those fears.
SOOOOOOO ! I just decided to take all the good advise you all gave me & go out and continue LIVING instead of the waiting to DIE that I guess everyone goes through at first.
I do want everyone to know that you can get on with the business of LIVING & DON'T get caught up in that poor me syndrome, although easier said than done.
I guess I drove you all crazy with my questions at first, several a day sometimes but my best answers came from you all not the doctors.
My advise to anyone newly diagnosed with hep c is come to this site often, ask questions, you will get answers and then forget about the hep & LIVE YOUR LIFE.
The doctors I have been to were just blown away by my knowledge of hep c & it all came from here & I don't know that much it's just that they know less ( scary )
My new mentality is one day at a time, I got out of bed this morning and I thank the LORD I did,I thank him for today, yesterday, & tomorrow in advance.
I have totally given it to the LORD and I can honestly say I have a peace I have never had before.
It's almost like the hep c gave me a new life.
OK ! I GOT SOME QUESTIONS ??
Is anyone having problems with pimples ? acne ?
All of a sudden lately I have been getting these big knot like pimples on my face and they are slow to go away, 49 and now I get pimples ?
I think I ask this before, do your joints hurt alot with hep c ? my knees, shoulders, back & neck feel like what I assume arthritis would feel like.
My liver sonogram was normal & all my blood work so the doctor basically said come back in a year and do all tests again.
These are the results I would appreciate your opinions of what they mean.
All blood work was in range ast 37 in range 2-50
alt 58 in range 2-60
Here is where I am confused antinuclear antibodies w/ refl titer & pattern ana screen ( negative )
mitochondrial ab w/refl titer 1:20 in range, ref range negative 1:20
I am at 1:20
1:20 - 1:80 intermediate level may be present in autoaleregic or other liver diseases.
1:80 elevated level strongly suggestive of primary biliary cirrhosis.
Smooth muscle ab w/refl titer 1:20 negative ref range 1:20 negative.1:20 - 1:40 weakly positive may be presentin accute viral hepatitis,lupoid hepatitis, infectious mononucleosis and malignancy.
1:40 high positive, highly suggestive of active chronic hepatitis.
Alpha - fetoprotein, tumor marker 4.0
Ferritin 133
Tsh w/reflex to ft4 2.04 all of these were in range.
SOOOOOOOOO !! can you tell me in short what this all means ??
Good luck to all, GOD bless & keep you & remember you always have someone who cares & will listen 24 - 7 when you need strength go to thr B.I.B.L.E.

I TO SUFFER FROM JOINT ACHES AND MUSCLE PAINS,GLAD TO HEAR OTHER PEOPLE HAVE SIMILAR SYPTOMS! I REALLY HAVE LEARNED ALOT ON THIS FORUM AND SO GLAD I FOUND IT!DOES ANYONE ELSE SUFFER FROM CHRONIC FATIGUE?I KEEP TELLING MY GASTRO DOC ABOUT FATIGUE AND I THINK HE THINKS ITS ALL IN MY HEAD!!BEEN ON PEG AND REBETOL FOR 3 MONTHS ,VIRAL LOAD IS STILL SKY HIGH DOC WANTS TO KEEP ON TREATMENT 3 MORE MONTHS THEN CHECK VIRAL AGAIN, GOOD LUCK TO ALL!!! TADPOLE40

First of all, you are in great shape. Second, I am still going to recommend a biopsy. Insist on it.

All the symptoms are typical of someone of your age and expected duration of infection. My husband found relief by using a hot tub daily and excercising moderately. Sometimes, if the fatigue is great, get extra sleep and lay around on a weekend day watching old movies and supervising someone else doing the chores.

If it get really intolerable, a neurological exam by a knowledgeable neuologist might produce a strategy.

Thanks for the kind words! How lovely to get such feedback. As always, this is a team effort. For a pick up team, we do quite well.

Good on you for getting on with it. I believe attitude makes a huge difference and you sure have a great one!

best wished,

thanbey



[This message has been edited by moderator1 (edited 05-21-2002).]

I use to have trouble buttoning up my sons shirts and tying his shoes..now that I have watched what I eat (no tomatoes) and am a vegitarian I don't have the muscle aches anymore..I have had Hep C for 25 years..(give or take a few) I am waiting to start treatment on the 17th.. Good luck

Hi Tadpole40 and drlmd
Hey Tad, I have this CF [chronic fatique], my worst symtom of HCV right now, the longer days and sunlight is making me more active and better now, however I just added an other topic to the forum concerning fatique, some interesting stuff there.

get outdoors, enjoy life- Neil

Hi all, hope you're all doing great. It's interesting that you mention Primary Biliary Cirrosis, because I had a question about it that I wondered if anyone might know about. Blood tests can be so inconclusive, and I guess the only real diagnosis can come from a biopsy, which I still have not had. But, I was looking over my blood work recently, and with all the reading I do, sometimes it's bad, cause then I learn too much and get scared about something else!! Anyway, my question was, in my blood tests my GGT levels were also high, it was 40 (range-7-33), and I was wondering if that can be normal for fatty liver?? I also have fatty liver. Also, my alkaline phosphatase levels were in range, but in looking at it, I guess they are in the high end it was 99U/L (range- 20-125) and then another time it was 107 (range-39-117). This seemed kind of high to me even though it's in range, and when I read about it, it said that high levels of alkaline phosphataseGT can suggest Primary Biliary Cirrosis, which is real bad I guess. Anyway, thanks in advance, I was just wondering if any of you knew about any of this. Confusing blood tests. I guess if it's in range I shouldn't worry, but it just seemed to be at the high end of the range, which could be normal, I don't know. Anyway, thanks again for all the information, I don't know what I would do without you guys. Lately it's been so frustrating cause we have Road Runner as our internet service, and it's out all day long, and we can only get on here late at night, if then. So, it's been few and far between that I can even get on here, and I need my healthboards!!! Thanks again, Val

Hi Val!!! Did anyone ever tell you, you worry too much? Honey, if your blood work is in range don't worry about it. Thats why they have such broad ranges, just because it is on the high end of the range doesn't mean its high. So mark that worry off your list and move on. As for PBC and the elevated GTT, I would suggest you have your doctor explain as he/she has been following your care and can put all your tests together. Make 'em earn that money! Just curious but why haven't they done a biopsy yet?

Sorry about your IP service. Never heard of Road Runner but I am not that literate when it comes to the tech stuff. I guess I should bone up on that. TTL!

Hi, thanks for the reply!! I guess I shouldn't worry, I just don't need another liver problem!! I think the GGT levels can be high due to fat in the liver, but I'm not sure, different books say different things. He hasn't given me a biopsy yet cause I don't think he thinks it will tell that much, and it is an invasive procedure, that I hear is quite uncomfortable. I think he's pretty confident what it would say, and I know in some cases it's pretty important, but I think in gathering my history, and blood work, etc., he feels it's not pressing at this time. Anyway, I don't know what will happen, I have to make another appointment soon. My focus was on my husband for a while who had surgery for a umbilical hernia, and he was nervous about that, going under anesthesia and everything. Anyway, thanks for the reply, I guess I shouldn't worry if it's not out of range, it's just so close! Thanks again, Val

Did your Doctor ever tell you for sure you have HCV. I remember reading from your previous posts that you had some negative and some positive and was wondering if that issue had ever been resolved. As for the biopsy, it wasn't near as bad as I had imagined it. They gave me Versed to relax me and used a numbing ointment before they numbed me up with lidocaine so I didn't even feel that. The acutal procedure was painless; could feel just a slight pressure when he was taking the tissue. The worst part was having to lie down for 6 hours after. I could have pain meds after also but never had any pain. I am no expert but if you do have HCV you may want to insist on a biopsy to see if there is any liver damage.

My brother in law was just told he has a fatty liver. He has never drank or smoked and they've ruled out all Hepatitis. He did get sick several years ago and they never found out the cause. Its so odd that people get fatty livers and have lived a healthy lifestyle for the most part. What have you found out about yours? I'd like to share some of your research with him, (I can't find a whole lot on it unless its alcohol related.) Thanks in advance Val.

PS How's your husband doing?

Hi, thanks for the reply!! Actually I'm still waiting on yet another round of bloodtests. This last lab was inconclusive again, and he wants to make sure I guess. He does know that I have fatty liver, though. I think you said it was your brother, did he have elevated enzymes also? Yes, it's weird, it's hard to get info on it that doesen't talk about alcohol, and the weird thing is, I have really never drank alcohol, I could count the number of times on one hand, weddings, etc. I am still in the process of researching this, but I found an interesting site from Dr. Sandra Cabot, I can't really recommend her cause I haven't talked to my dr about her yet, but I did order her book and product. It's called 'The Liver Cleansing Diet', and she talks specifically about fatty liver, and how it's becoming more and more of a problem and how lots of people who are sick, and can't loose weight, actually have fatty liver. This is so me, cause I can't loose weight at all. And, she says that no matter how hard you try, unless you do the liver cleansing diet, you will struggle at weight loss. The only factor I have that would contribute to fatty liver, is excess weight, but I was reading that fatty foods in and of themselves do not cause fatty liver. It's mostly caused by diabetes, and obesity, and drinking. Obesity has many different causes, excercise, etc., so it's not just blamed on eating fatty foods. Anyway, if you get on 'ask Jeeves' on your computer, and then search for 'liver doctor' you will find her site. Kind of interesting. So, I guess that's why my dr decided to put off the biopsy for now, to know for sure about the HepC. He still says that a biopsy is the only sure way to tell if anything viral is going on though. And, I still worry about more serious liver diseases, like PBC. I know I worry too much. That is a rare disease, right? I read where it strikes women betwenn 40-60. And, I am having such problems with menopause that I worry that could be triggering something immune like that. Anyway, thanks for the reply, and when I find out more about fatty liver, I'll let you know. Val

VALGAR !!!!!!!!!!!!
If I understood your last post correctly you still don't know if you have hep c for sure or not yet is that correct ????????????
If so I think I would be looking for a new gastrointeroligist.
I would be worrying more about the doctor you are seeing and the lab he is using than the hep c.
I wouldn't have any faith in either one of them at this point, but that's me.

I have had two liver biopsy's..The first one hurt somewhat but the nurse forgot to give me the second dose of pain killer..that was 5 years ago..This time when I went in I told them to make sure I didn't feel it..and they did..I felt nothing but pressure. I actually thanked the doctor for not hurting me..I would suggest a biopsy..its the best test we can have right now to get a closer look..Good luck.
joann

Valgar--

drs is correct--how can your doc not know yet whether you have hep c?!???!??!!!!?

and yes, a biopsy is essential for determining the extent of liver damage--from hep or from fatty liver or from any other cause--but no, it is not how he would determine whether you have the virus. the blood tests, particularly the pcr/rna test determines this. And, unlike the antibody test, the pcr does NOT have any history of giving occasional false positive or negative results. it is accurate.

This is mystifying. How can the doc still not have settled this issue for you?

sean

I agree with Sean...Before a biopsy you need to know what your are dealing with...There are so many different types of blood test that can be ran to rule out different causes of liver function..I would take it back to the doctor and watch your liver though blood work until they have it narrowed down..
joann

Re: biopsy-my brother's was not painful at all, as stated above apparently the worst was lying around for hours after.
Re: fatty liver which I have but not hep-mine is apparently caused by a protein deficiency-I have been a vegetarian since I was 5 years old. I thought for sure I had hepC as my brother does(and has since we were kids) because we have bled on each other umpteen times but I guess never at the same time, and I was feeling the same symptoms tired etc. So now I am eating chicken and fish and fell 100% better.

Hi all, well, it seems to be a timing thing, this last lab he wanted to go to gets down to a level of '5' to see if there is any viral load, or any virus at all, and supposedly there is only a few of those in the country, so I think my blood is being sent out to California. As for the PCR, it's weird, though, cause one of them has to be wrong, cause I have had a positive and a negative, actually 2 negatives if I'm getting this right. The GI has sent me to two different labs that came up negative, I was explaining this on a previous post somewhere, and now I guess this is the most sensitive one now. We still have that positive one to deal with, and so I think he wants to be sure. I didn't see exactly what tests were done from the GI that he sent off, but I assume he did PCR qual and quan, I think he said that, but this all gets so confusing. I know he was checking for virus, and that is the PCR, right? Anyway, I was wondering, Jeannie, you were saying that your brother-in-law got sick, and they didn't know what it was, what were his symptoms? I didn't realize you got sick from fatty liver. Anyway, thanks for the concern everyone, and I am going to get more answers to all my questions soon. In the meantime, I'm trying to be healthy, and for some reason, that's been a real challenge again lately! Eating some junky stuff again. It seems like stress and my menopause problems bring that on! Anyway, thanks again!! Val

VALGAR !!!!!!!!!!!!!!!!!!!!!
You either have the patience of a saint or your dr. must see you for free !!!!!!!!!!!!!!
Let's see, how many negatives = a positive ??
Is there any where left to draw blood without sticking the same spot??
Seriously if you are as concerned about yourself as you seem to be get another doctor.
They send mine & probably everyone elses to california & it's a week to get it back everytime.
Someone is pulling someones leg here ???????

Howdy folks

Allthough Valgers results may seem unbelieveable, when I found I had chronic HCV, my wife of 25 years, understandably panicked and had her blood tests done, she was a mess when her first came back positive, but the second came back negative, third was again positive, fourth and remainders were all negative, she is now virus free, with antibodies.

that being said, valger just might get to be one of the lucky ones, because the tests results she is getting sound like my wifes, on the other hand without getting valgers hopes up, if she stays positive, she will just have to accept it and try to make the most out of life like the rest of us, I acually do more of the things I love to do now, but am just a little more tired at the end of the day,

Get outdoors-enjoy life------ Neil

I too hope valgar is one of the lucky ones.
I know how frustrated I have been with most of the doctors I have seen because of the way hmo's can get by with giving you the bare bones version of medical treatment,generic meds & minimum tests.
My wife is a teacher & if not for her group insurance I obviously couldn't get any on my own so for that I am grateful.
But they change insurance companies almost yearly so about the time you find & get to know a doctor it's time to change again because they usually are not available to you with the next provider.
I just went through it in January, my primary was with the new insurance company which is cigna as a ppo but not an hmo, with blue cross hmo blue which was who they changed from he was a hmo.?? confused yet??
I don't know how they get away with what they do, how they treat & seem to have no concern about the situations it causes for patients.
hmo costs us $400.00 a month, the ppo costs $800.00 a month.
Prescriptions went up, office calls went up, in hospital went from $250.00 max out of pocket to $2500.00 per stay.
I in no way meant to make light of valgars situation I just can't stand dealing with doc's they don't do the job they should be doing and take what we have to say seriously and listen to our concerns & answer our questions.
The sad truth is most can't & won't, gotta get ya in & out gotta make more money.

DRSlmd
I agree with you on the doc situation, I am actually informing my GP Dr. on many of the things I been learning here and elsewhere,unfourtunatly since Hep-C is a fairly new Discovey [1992], many Drs,like our selfs are overloaded with info and trying to make sence of all this, although my GP was not up on his HCV research, he send me to a leading Liver specialist right away.

Just for interest, our health care in Canada is very different than yours, we pay a monthly heathcare fee every month,my is under fifty dollars, we do not pay for office vists, hospital stays, blood tests,x-rays, drugs given in hospitals,cat scans etc, the only thing we pay out of pocket is prescription drugs, which my work insurance pays 80%.

I think I like our system better, all of the hospitals are Goverment run, but if they have their way they would change it to a private sector like yours, but with your kind of costs I can see why this would upset you so much on Valgers situation

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--Get Outdoors-Enjoy Life----Neil

Hi all, my computer is acting freaky again, so I am going to post a message again on here in hopes that I am not repeating myself!! It keeps on crashing all the time right when I'm in the middle of something. Anyway, I was saying that he is just checking again at a supposedly very sensitive lab. I assume that the other blood tests had qual and quan included in them. I don't know how many negatives you have to get before you believe them, and not the positive. I don't know if getting that positive once means there is virus somewhere in there, and that the other labs just didn't detect it, or whatever. These are questions I have for him, and hope to get answered this week. My enzymes are still moderately high (AST, ALT, AND GGT), so he needs to make sure why that is, if there is no HepC. The thing that I suppose is worrisome, is that thre are many things worse than HepC that could be causing this. Whereas HepC seemed like a horrible thing when I first heard about it, there are many worse things that can be happening to your liver, as I am reading. I know not to get too caught up in all the things you can read, though. Anyway, thanks for all the replies, and Neil, did your wife have a negative qualitative as well as quantatative? I can understand the quan being negative with me, if it just can't detect viral load, but I don't understand two negative qualitatives, if that's the case with me. Thanks again for all the advice, and I hope you're all doing well. Talk soon, Val

NEIL

I have been a Texan all my life but after reading your post about you Canadians out of pocket expenses for medical treatment - MOVE OVER NEIL HERE I COME !!!!!
You may have have started something huge here.
I can see the newspaper & television headlines now.
Story on Canadian medical costs on the internet causes huge influx of hep c Americans into the country.
Canada is putting guards on all the boarders.
Man you guys gotta good deal, what I would save in medical would pay my other bills & you got good skaters & hockey to boot.
Would talk to old George Bush for the rest of us ????
LOL, have a good day !

Hey DRSlmd
ok, But I only got 10 acres, oh and our Whitetail deer are bigger than yours too. ha ha

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--Get Outdoors-Enjoy Life----Neil

Now I am going to rag the HMO'S a little.
My wife teaches for the Dallas School District in Dallas Texas.
They change insurance providers almost yearly which causes havoc because then you have to look for a new primary doctor, specialists ect. because usually the one you have been using isn't with the new insurance company they switch to.
I am in NO WAY A RACIST OR PREDJUDICE !!!!!!!!!!
But most of the doctors you have to pick from speak very little english, are new at their practices & don't leave you feeling very comfortable about their knowledge.
The others that are more established have so many patients that 250 out of the drs. I can choose from in this years CIGNA provider list are not taking new patents !!!! DA !!! SO WHY LIST THEM ??
Just to make the book bigger I suppose.
WE had HMO BLUE, blue cross before this one & Nylacare before that, all about the same.
The cheapest insuance we can get for family coverage 3 of us is $400.00 a month.
$20.00 co-pays for the drs. visits
Name brand drugs $30.00 for 30 -days
Generic brands $20.00 for 30 - days.
In hospital stays you pay the first $2500.00 up to a $5000.00 max per year per family.
If you want lower co- pays & prescription costs you pay as much as $800.00 a month then you can see any doctor you choose pay up front & get your money back at the end of the year.
DID YOU SEE WHAT NEIL OF CANADA PAYS FOR MEDICAL INSURANCE IN A POST ABOVE THIS ONE ????????
COME ON AMERICA WAKE UP!!!!!!!!!!!!!!!
And my wifes employer acts like by changing insurance companies that it's a better deal for the employees but I don't know how they figue when the co pays went up , the prescriptions went up, the out of pocket hospital went up from $250.00 per stay to $2500.00 per stay that's 10 times what it was & the insurance went up $50.00 a month.
ANY OF THIS SOUND FAMILIAR ???????SOUND LIKE WHAT YOU HAVE TO GO THROUGH?? SET appointments weeks in advance only to have drs. cancell them or leave you waiting in their packed waiting rooms hours past your appointment times.
TRY calling and all you get is answering machines, and after you have pushed all the buttons they tell you too you get disconnected or the number is busy all day.
If you get lucky enough to leave a message no one ever returns your call??
Then if you go to the office in person & complain they can't understand why you are frustrated.
Call the insurance company and complain & they don't seem to care or understand either.
THE SYSTEM IS A JOKE !!!!!
GOT SIMILAR COMPLAINTS ???? SHARE EM !!!

Hi all, I don't know if any of you are still reading on this post, but I was looking over some of the letters on it, and I was wondering, isn't it normal to take at least a couple of tests to get a definite diagnosis? I thought all doctors did that. Once you come out positive, they all do supplemental tests, don't they? I think my GI was saying that his test (the first one he did) that came out negative could have meant that his lab was not as sensitive as the first lab, that came out positive, since I think they were just repeating the PCR test. I don't know why they even bother to do these other tests that I hear about first, why not just do the PCR if most people that come out positive have that one anyway? And, I guess you could always say maybe that lab is more sensitive if they only do the PCR, so how many negative PCR's do you need before you feel like maybe it could be true?? Thanks for the advice, Val

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