cant get a diagnosis for liver problems

Hello
I need to know how to get a correct dianosis on my health problems.  I have had hep c for almost 30 years and my health is not good, since 1996 I have been going to diffrent G.P.'s to get help when I cant stand the symptoms any more.  I have self educated myself on hep c and I have all the classic symptoms.
Today I am so tired I dont even want to brush my hair. When I tell the doctor about Hep c they run tests and tell me they cant find any thing or that I have Epstein Bar or that it is in my head.  What shoud I do ?  I need help I am tired of being sick all the time.

[suzieq2]

It is not in your head. Loose the G.P.s And start seaching for specialists.You may want to start with Hemotologist (blood). My biggest mistake was being to trusting with my first Dr.If I had it to do again I would get atleast 3 opinions before deciding on my treatment protocal, and all three would have been Hepatologists, not Gastro's.Research! Knowlege is your best weapon.

[v eggie dip]

you said you have had hep c for 30 years, have you tested for this, as well as had a biopsy?

[jmjm530]

You either have hepatitis C or you don't.  You may be worrying needlessly.

If your doctors have run a PCR (viral load) test and can't find the virus, then you don't have hepatitis C. If they haven't run the test, then they should. Usually they run an antibody test first.

There are many diseases/conditions that can mimic hep c, including epstein barr. Again, this is not subjective, either you have it or not. If you don't trust your current doctors, then see a liver specialist for the tests.

Good luck.

Jim

[HCA]

How do you know you have Hep C?
There are two tests,as previously mentioned,an anti-body test which will confirm whether you ever had the disease,and the more expensive PCR test which tells whether you have active infection.
Did you ever shoot or snort drugs?or have a blood transfusion?
There is an anti-body test for Epstein-Barr as well.Have you been given it?
This is 2005 not 1991 and finding a doctor who can perform the correct tests should be easy.
We cannot confirm whether you are HVC positive-get yourself to a liver specialist.

[cougareyes]

If you are eligible for FMLA you may want to check into it. Your doctor can file it that says due to your tx you may not be able to maintain a 40 hr work week. It also says the length of your tx, and you may be off and on affected by the sx.
To have this filed with your HR Dept will help protect you from discimination. It will not stop certain people from sabatoging you because of their own discrimination. But it does give you some legal standing to protect your job, and most importantly your benefits; to at least get you through this tx.
It sucks to have to deal with this on top of our medical condition and tx. I know from experience.  Good Luck

[AK - Hepper]

Sorry, I just read that the doctors haven't found hep c ???

[Forseegood]

Hi sorry to be a budinsky on your thread, but this might be of interest to anyone here. As farfetched as this sounds, they are doing this in conjunction with the WHO, the World Health Organization. It seems they are now doing trials in Zambia on herbal remedies to help boost the immune system against the AIDs virus, because the AIDs drugs are so expensive for that country. They are indicating promise to at least help to boost the bodies defenses. It says in the article on the Associated Press that "they are working on reducing viral load and increase CD4 cells which defend the body." They pretty much made sure the herbs are harmless before they went ahead with the study, if I remember right. I'm working on finding out what exactly these herbs are. Pretty interesting even if its only preliminary. Here it tiz:


http://news.yahoo.com/s/nm/20051019/hl_nm/aids_zambia_herbal_dc

Jim: of course you probably wouldn't think of going under the knife now on tx, but this is minimally invasive laparscopic surgery - to deal with the problem of GERD, and it's gotten good results according to a French study. I think you mentioned you had this.

http://news.yahoo.com/s/hsn/20051019/hl_hsn/minimallyinvasivesurgeryeffectiveforgerd

p.s. you might of taken the wrong herbs and/or the wrong dose, just thought i'd throw that in there, he he he. Don't clobber me.

[vcj]

I think you would have symptoms of Hep C after 30 years, I've had it for over 40 years, but I just found out. That's why I've been so sick.  Not all gastro's know the symptoms or have seen them in practice, but you should find a good GP first to help find a good gastro.  Don't forget, they haven't studied Hep C for very long. I think the Red Cross told me I was the oldest to have it.

[GoofyDad]

As further validation to the liver cleanse and tonic and crowd (ducking for cover ;-) the stuff posted by Mike has an abstract indicating green tea cuts HCC risks. Sign me up for the tea brew kit, folks. Speaking of a brew, .. aw heck - there I go AGAIN....

[new-sojourn]

I was infected via transfusion in 2-67.  cl'd 4-02.  so i'm almost 39yrs since exposure and I'm sure there are tons of people who had it way before me-obviously, since the blood supply was already tainted.

So even the Red Cross doesn't know jack about hep c.

[GoofyDad]

I read recently that current mutations are thought to go back 200 years, with the original virus dating back thousands of years. Yet one more reason not to choose gladiator as a career path.

[Forseegood]

Where's Mike? What tea? Who's the gladiator????

[vcj]

Hep C has been around for a long time,my friend who was under gastro care for other problems, by coincidence the one who did my biopsy 1 year ago, has cirrhosis of the liver because the gastro didn't know?! That's why I got a new gastro.Evidently he only opened practice in our area 2 years ago because of so many people with liver disease. But all people, are not equally affected by it, so hense the delay in cirrhosis. She is being moved, to a larger medical center because of her husband being angry and put on transplant list. It does pay to shop for a good doctor.

[NYgirl]

Sorry to intrude.

Just found out that my job wants to bring in a full time temp to do my job and put me to doing errands. They said I have a disease and although I "come in when I feel up to it" I'm letting things fall through the cracks.

BS!  NOTHING has gone undone at ALL.  In fact my boss was OUT for two weeks and I had hardly anything to do at all!!!  I took TWO SICK DAYS (and i have plenty of time LEFT that I never used so why not! that is not "coming in when I feel up to it").

It's discrimination pure and simple. RIDICULOUS I am so livid I am going to fight this.  

Asked the boss what did I drop? And he couldn't answer me back ANYTHING and instead said I "look tired" all the time.

Nice.

sorry I just had to spew this out at somebody. I'm just so upset.

[jmjm530]

Forseegood said previously: "p.s. you might of taken the wrong herbs and/or the wrong dose, just thought i'd throw that in there, he he he. Don't clobber me.'
----------

Gee, why didn't I think of that? :)

Have I ever implied otherswise?????

Again, for the last time (why do I have to keep saying this) I am not against herbs and vitamins. My posts are very clear. I simply  have challenged some claims/studies here and there, did have a bad  experience with herbs, and have personally chosen not to take them for now.  That, indeed may change in the future after treatment, or it may not. I'm pretty open. Herbs/vitamins/supplements is a big and complex field (like conventional medicine) and I truly hope it's Ok to find fault with parts of it without being labled "anti-vitamin, anti-herb".

I have no doubt this will come up again but can at least the two of us not have this discussion again. :)

Thanks for the Gerd article. I wish they identified the type of operation. I'm assuming it;s the Fundo they do here, maybe with a less invasive procedure.  Fortunately (actually unfortunatly) the GERD now has dropped down to about  number three in my list of sides but thanks again.

-- Jim

[jmjm530]

That  truly sucks. Unfortunatley thats what sometimes happens when you confide in people. On the other hand, you probably felt you didn't have much of a choice with your supervisior. This disease teaches you a lot about yourself and other people. Regarding the latter, my expectations have dropped quite a bit. Hope it works out but try and keep most of your energy/focus on yourself and treatment. It's not worth letting the situation and these people bring you down.

-- Jim

[NYgirl]

Thanks so much.

I just got called in and got this elaborate cover story - but you know I saw the confidential memo LOL and read it and know what it said.

Even people you believe are tolerant to the disease...sometimes are lying.

There is a whole big paragraph in there how they looked in to my disease and it is NOT communicable in the office place it is ok for me to be here.....DISCRIMINATION, DISCRIMINATION, DISCRIMINATION!

I did NOT want HR to know of this disease but my boss insisted on telling them...now I take two sick days and it's a national emergency and I've fallen apart right?  Should have said I had the flu, nobody would have known any better.

I am concentrating on ME.  Tomorrow I will go get the bloodwork for the 4 week PCR and concentrate on the results of THAT.  It is more important to me than anything.

thanks JIm like always for calming me down. People just suck.

Although one of my coworkers brought me in donuts again today ;-)

[AK - Hepper]

Fatigue is getting to me lately, too.

Have you tried treatment, yet?

Find a hepatologist or a gastroenterologist that has experience with hep c.

GP's will get you nowhere.

[NYgirl]

Thanks. I do have all the appropriate paper work for FMLA at the doctors waiting for him to sign it.  So I am covered there.

It's just horrible that you bust your hump to come in to work and hold up all of your responsiblities...and instead of being like "thanks" it's like hum disease? Dont know if I want you around here right now...

Life lessons.  I was just so SHOCKED because I would never be like that with any of them that it came as such a huge surprise to see in print all this stuff about the disease (which according to HR NOTHING is supposed to be in PRINT about me at all (find out this from a higher up) so the fact I got this document at least provides some protection.

Of course...my yearly REVIEW is next month...  ;-)

As long as I have my benefits I should shut up though. Seeing how expensive this disease really IS blew my mind.

[azgrl]

Wow.  That is just awful that people will be like that. Good luck and keep us posted on what happens.  Keep excellent records on any incidents that come up.  You're a fighting girl so they are picking the wrong person to mess with on this one.

Another thing is if you work in a place with a lot people...then odds are you're not the only one with it...you just may be the only one with the guts to say so.

Deb in Az

[friole]

I can't believe you have to push a 600# machine up a ramp even when healthy.  That just doesn't sound right. I hope you don't have anemia - has it been checked lately?  Just hold onto that thought that you are clear and you can do this.   Our family members that know - they try to support us but sometimes, I at least, am not receptive to the support.  Please take care


Goof - where can I get a dose of that dipolmacy? I have a real bad case of "say the truth, even when it hurts," and it is getting me in trouble lately.  I really can't blame the riba because it is in my nature, but maybe in is making me not hold back like I should.  Anyhow, great comments to NYgirl and definitly the best way to handle the situation.

friole

[v eggie dip]

ewwwwwwwwwww you must have cooties LOL...Cheer up kiddo, at least you have a lighter load to carry at work, most people would welcome that!

*one cootie to antother cootie dippo*

[NYgirl]

We are all full of cooties you dip you are right!

That's what I am going to tell people now when they ask what is wrong with me (and don't you LOVE those people you BARELY know asking- like I saw someone in the medical group the other day who would NOT let it go...what's WRONG with you...but why is it wrong with you (i just said something wrong with my blood) she would not let it go and I did NOT want to say, I mean use some discretion fools!)

From now on I am going to say "Oh Me?  I have cooties, yeah that's right cooties!".  

That should stop them dead in their tracks! hahahah I LOVE LOVE LOVE IT!

[GoofyDad]

In the (10/19) thread on the San Francisco Liver Meeting, Miked pasted a link to abstracts being presented at the meeting. Somewhere in there is a summary of a study indicating consuming green tea yields benefits related to avoiding hepatitis induced liver cancer.

Hope that helps.

[v eggie dip]

there ya go!  tell em you got the latest bug to hit NY....Homeland Security is checking it out and you may have to be part of a new study that will not only be the latest in high tech trials for medical miracles but will also be a great bug repellent!

You could be famous!!!  First NY'er to cure cooties!

[friole]

This is terrible.  How did you get a copy of the secret memo?
Definitely discrimination. Also, I fail to see how running errands is better than sitting at a desk when you have anemia.  I am sure you have been looking tired to others, but if you have been doing your work, and would rather do that (than have to spend twice as much time cleaning up after a temp) I would protest their decision.

You were recently put on Procrit, correct?  It should take awhile to kick in and then your "powers that be" should see an improvement.  Maybe you should get some of those pamplets on Hep C that they have at the Infectious Disease Center (or somewhere) and pass them out in the HR department.  Maybe someone will come on that knows about the literature available, because I don't  Meanwhile Janis7 has a section on job discrimination and your rights.  Perhaps you should copy it and deliver it to the HR.

This makes me so mad, I could spit (I have had a bad case or riba rage the last couple of days)
friole

[GoofyDad]

Deb, What a drag. Sorry you're dealing with this.

Others will disagree with me, but here goes. I fight when I need to, but I try to pick my battles wisely. Declaring war on HR at this point is unlikely to have a favorable outcome, and it won't make you feel better in the long run.  

I'd ask for a meeting with HR and the boss. I'd thank them for their concern and  explain that I've been adjusting to the treatment. I got a bit tired, and needed some time-off. The doc gave me some medicine that helps, but it takes a bit of time to kick in. It seems to be working. Explain that you'd like to keep doing your work, and you think it would be best for you to keep carrying on. Explain that your privacy is important and ask for renewed cooperation (a tactful shot across the bow).

People are freaked out by what they don't understand. Accept that and try to work with them to find an equitable solution. Both sides probably want a quiet de-escalation right now, an you can facilitate that or work against it. Diplomacy does not have to be a signal of weakness. Saber rattling will only make things worse.  

Back to my fleas.

[Forseegood]

Hey Jim, once again posting has shown its limits in that you can't always tell the tenor or mood in a post, and I can be a wisea$$. I should of put some nods and winks in there, for I was mostly kidding. I know you to be pretty open minded about alternatives, and I don't think you have been "too" hard on the most of the evidence presented, at least with me; and to be honest some of the evidence has been a little shaky. I try to put stuff up that is aligned with very reputable organizations (like the WHO and the CDC) even though I've seen some trials and experiments that were pretty good even from the alt community that I wouldn't normally post because I know I'll get jumped on like white on rice (once again, not by you, weak ha ha ha)Hope youre feeling fit as a fiddle today.

NYGirl: so sorry to hear that, I had a similar experience when I had to get a hysterectomy, nothing gets em more freaked out than "illness" - especially in a commerce driven society like ours. And what chuckleheads...making and passing around a memo like that perhaps could be used for evidence against them. But then I'd look at the flip side of it, perhaps a break would be welcome to you, and a paid break is pretty nice - but of course you would know much better than me. At least they have enacted laws to protect you in this, and they better know it.

Goof-thanks for the tip!

[NYgirl]

I have been nice and diplomatic *and you know me NOT easy for this wisecracking nutjob to do*.  So far the CFO of our company has stepped in behind me and a while ago it was said now they are going to bring help in FOR ME instead of demoting ME and making me leave my position.

I was promised that I would not be moving just having assitance if I need.

Yeah ok.  Sure. But for now I am playing the game. I need my BENEFITS or I would have walked out yesterday you know?

It's so HURTFUL really is the thing. Doing the exact same job as ALWAYS but now because I LOOK tired darn I must be falling apart!

Don't they know Cooties aren't contagious?  Well maybe....they are hee hee!

[nor cal mom]

we all have cooties I LOVE THIS. I am an ultrsound tech at a busy hospital and couldn't push my 600lb machine up a ramp on SAT...I just fell apart.crying & carrying on My super that was there sent me home Then Tues the big boss called me in "we really want to work w/you but If you cant do the job??? I am just so weak I see my GI in the hosp halls & he says OH you look great. Yeah the cooties haven't reached my face yet :) Keep your chin up fellow heppers we will be clear DARC

[sunspot]

I've been reading quite a few posts about people commenting that we don't look sick. I'm re-posting a letter I keep posed at my cubicle at work. I hope you all like it.

  If It Don't Show Today
I have had quite a few people
come up to me and say
why you're looking pretty good
you don't seem sick today
Well, have you ever lived wondering if
each day will be your last
not knowing if there's a tomorrow and
reliving and regreting your past
Have you ever fought daily just
to get out of your bed
had a foggy grey cloud hanging always
over your head
Have you ever lost 80lbs or
had your hair all fall out
wasted away in a chair
with no one about
Oh I have my good days too
when I don't let it show
and some see me those days only
so they don't really know
So all you nonheppers out there who
haven't ever felt this way
don't ask are you really sick if
I don't show it today....
J.W. Cutrer
aka SirJohn

[nor cal mom]

thank you I really needed that today so tired & sad The family support issue is a big deal today also or as my husband says it is all in my head take more ADs

[jmjm530]

You don't need a wink and a nod as you tone was friendly, as usual -- or mostly usual. :) :)

The problem is that while you were joking, others have mischaracterized my position on herbs and vitamins so many times that the whole issue is just getting too worn.  Eh?

Just to demonstrate  how "anti-vitamin" I am,  I'll now go and take my weekly B12 injection.


-- Jim

[nor cal mom]

thank you I really appreciate all the support in this group I read every day & post when I can thanks for being there :)

[Forseegood]

wow, I've taken those b12 shots, puts a glide in your stride and a zip in your hip huh? at least for awhile.

Actually, I think anyone on tx gets a just pass go ticket from me in terms of getting testy once in awhile, not that you were. I have no idea how i'll be on that stuff, I can't imagine.

How much longer do you have anyway? Maybe we'll throw a party for you when you finish. If you don't mind Kool-Aid, haaaa,...NOT! you know I'd never drink that stuff! How about some veggie-green-alphalfa-pond-scum juice! with a little bee pollen chaser! you in????

[NYgirl]

From one Deb to another Deb THANKS.

You guys know me well enough that is for sure.  I would not take this lightly and already backed up so much documentation and tape recordings that I have lacked in NOTHING on my job to this date so i should be ok.

It's just sad finding out how much people SUCK.  All this "we are here for you, we support you, let us help you" means one thing...let's see if we can get you to quit before you infect us.

That's what it feels like to me anyways.  :(

There are others here with other medical conditions so I am going to watch them carefully.  They aren't "contagious" so it's interesting to see how WE are treated compared to THEM you know?

Deb in NY

[cuteus]

Nygirl; I only told my supervisor and asked that she do not forward the information to anyone, including personnel. there was no reason for them to know at the time since I had no idea how much sick time I would be using. We played it by ear. As it turned out, I did not use many full days(maybe one or two in the 72 wks) and mostly used partial time for appts. I also did not get hit with anemia as early as you did. Your supervisor was wrong in forwarding the info, without your consent (I wonder about the HIPAA compliance in that one) to the HR dept.  You need to make it clear that they are breaking the law.  I was able to keep my tx to myself the whole time. Even though I worked with nurses, I did not feel comfortable having to explain the disease to them and did not want to deal with the ignorant and undiplomatic.  Now that it is over, I don't care if they know. I just found out that my new supervisor's younger brother has ESLD due to hep c, she is very secretive about it, I guess because the older brother is a known politician.  Bottom line is, you do not have an illness that is transmisible by casual contact, so you are not endangering anyone at work, and confidentiality should have been kept. Big lawsuit in the making...when you are strong. GL

norcal: if your anemia is affecting your work, you need to insist that they intervene asap. You have to demand that they help you keep some qol and your job.  Don't let it linger to the point of destruction and loosing your job. Anemia is one side they can control.
best to you

[NYgirl]

Thank you for your words.  I was VERY upset as I too planned on keeping this very quiet.  Now EVERYBODY knows in my whole department. Spread like wildfire of course.  

I only took the two days off because I kept FAINTING and there was no way around it!  Discomfort I don't mind but that I couldn't do.  I had plenty of sick days left and figured well they are mine to use right?

All of a sudden it's oh no ... she's not here! She mustn't ever be coming back! Oh no who is going to do her work!  With letters going everywhere.

BS.  I have learned a very important lesson I tell you that much. People suck.  But not you guys!  :)

EGGS! EGGS! EGGS! (shortened quote by Goofy)

[jmjm530]

Pardon if some of this was covered earlier but my low Hgb has put me in a little fog lately. :)

I would think it illegal for an employer to make an employees medical history public knowledge within a company. Definitely worth checking out to see if this is true in the state you work in, and if so, you might consider legal action.

-- Jim

[cuteus]

it is a federal law; HIPAA. She has a case in my opinion.

[jmjm530]

If that's the case, I'd discreetly collect any and all evidence and go see a lawyer.  As they say -- why get mad -- get even. :)