Hi everyone,
I'm newly diagnosed (about a year ago) with Hep C, haven't seen a hepatologist yet or GI so I have no real info about my liver status,viral loads or genotype...but I am very concerned.

First off, I need to ditch my Prim Care and get another. She looks at my liver enzyme levels and says " oh, they're a little high"...didn't think I needed a viral load check or even see a specialist.
Seems completely ignorant about this.

I've been very exhausted, anxious and depressed. I also have polycythemia vera and also the beginnings of <osteoporosis(!)> which really freaks me out. Does anyone know of a correlation between Hep C and BONE loss? I'm in my mid-forties and feel pretty devestated about this.
I'm in NYC and would really appreciate any info about in person support groups that anyone knows of..that'd be great.
Dealing with unsupportive MD's and HMO of course adds to the feeling of distress.
I'm taking Clonopin for my anxiety which adds to fatigue/depression and is most likely not terrific for my liver. I'm Doing about 1000mgs of Milk Thistle and green-juicing as well for the time being.
I've got to get serious about this and see a hepatologist and get my stats and a biopsy...It's better to face reality and at least know what's happening than to bury my head in the sand in denial. I am getting scared.
It's hard to know and differentiate what's "the depression" or the polycythemia or the long time sleep deprivation or the Hep C!

Suggestions are welcome. It feels a little better to reach out. My knowledge of all is this is vague and I feel a little intimidated by all of the technical expertise that many Hep C people seem to have.
Thanks!
Lost,
Bob

Hi Bob, Welcome! Hey, take it easy. If you learn anything from any of the support groups available online, you learn that this is not a death sentance. However, it is a good idea to find a good informed doctor who will support you and be honest with you. It is probably a good idea to get a viral load test done. If I were you, I would also get in my hand the results of my bloodwork to see for yourself where your levels are. I have copies of all my labs and get tested every three months because I'm treating myself alternatively. I was very fortunate to have had a 4th year resident when first diagnosed who took a very personal interest in my case. The gastro I had was a cut & died "Have the biopsy - go on treatment" kinda doc who told me I would lose my business on treatment because I would be too sick to work and that there was nothing else to be done other than take milk thistle. Well, he really pissed me off and helped me to be stronger in my conviction that I would beat this without treatment.

Your decisions on how you treat are most certainly up to you. BUT - Be informed! We have a wealth of information at our fingertips here on the web. I have learned more in the last 1-1/2 years about health in general than in my whole life, and I feel that I am healthier than I have been in my whole life (except for maybe when I was a child).

I am of the opinion that the healthier our immune system and body in general, the better it can fight anything. The body was designed to heal itself. I haven't been sick in several years except for detox symptoms I went through when I first started some of the supplements I take. Diet is most important, as is water consumption. I went from being someone who ate mostly microwave meals and used artificial sweeteners to someone who reads every label and tries very hard not to ingest anything with additives and who also stays away from ANY kind of drugs except for the occasional Excedrin for a rare headache.

As far as the osteoporosis goes, I don't know if there's a connection. What I do know is that Calcium is certainly important. I take Calcium Hydroxyapatite with boron, D and magnesium. That is what a naturopath suggested, claiming that it is the most digestible form of calcium. I have also been told that Calcium Citrate is good.

I am sure there must be many support groups in NYC. I think if you just search Hepatitis C Support Groups you can find them. I live in western NJ, and we don't have any. I depend on my online friends for support and information, although I have been thinking about starting a group myself.

Well, I gotta get some work done today! Take care. Happy Easter! Love & Blessings, Karolyn

Hi Bob,

Yes, bone loss is reported in many liver diseases, there is even a name for it: hepatic osteodystrophy. But I am under the impression that it doesn't happen unless the liver was beyond the earliest stages of disease. That is, you are well advised to see a hepatologist and get a biopsy. You're gonna want to know whether you are in or past the earliest stages of fibrosis progression.

As I hope you have heard before now, Hep C is a slow moving disease, and there is almost certainly no hurry about most things with it. BUT, it does seem very wise to get the initial info in hand, and nothing is so valuable as a biopsy. (Oh, and a good communicative doc, yes. That was good advice. This virus has so many unknowns or partly-knowns, we want someone we can talk to about it all.)

By the way, what I've read suggests that the treatments for bone loss in hep cases are very like what is suggested for non-hep bone loss: vitamin D, (and K, for what reason I don't understand), calcium supplements and calcium rich foods like low-fat dairy and leafy veggies, resistance exercise, sometimes fossamax,and so on. Exactly what you may have heard recommended for postmenopausal women. The supplements recommnded by Kackles seem good--magnesium is good to take with calcium, for example--but you should do some of this research for yourself to see what you are most comfortable with. As you may know, tums and rolaids have also been used with some success, and they sure are cheap. And, a little goes a long way--a gram or two a day is a lot. Don't neglect your vitamins, tho!

In other words, hep-related bone loss is treated like any other bone loss--from what I've read, at any rate. I am not an expert. As I'm sure you know, there are no doctors on this board. So nothing we say or advise will substiture for you getting a gastroenterologist or hepatologist you can trust.

Please keep us posted as you learn more.

Thanks

sean

Thanks so much for your replies. I found them very encouraging.
Fatigue and depression are real problems with me. I do feel discouraged because I have alot going on, alot of med probs.
The depression which has gotten severe over the last year makes it difficult to feel hopeful and I rarely get a normal night's sleep.
So falling into a vicious cycle seems obvious in retrospect, but 'getting out' seems daunting. I've reluctantly tried most of the anti-depressants and the side effects always overwhelm me to the point of needing to stop just for relief from them.
Becoming dependent on doctors for 'understanding' or comfort is a predicable setup for dissapointment for me. I end up feeling resentful, disempowered and diminished.
But I keep going back compulsively for more and more thinking that the next guy will be less impersonal, patronizing or arrogant. "Take care of me!"
It Doesn't Work....I need to be gentle with myself and do what I need to do and not depend on 'them' for compassion...the thing they all seem to lack the most.

So tired. And it feels good to 'talk' to you guys and I thank both of you again. I'm going about things pretty much in isolation and that can exaggerate bad feelings.
Oh yeah...I'm pretty up on suppl. with Calcium, boron,K,Mag,silica,vit c, ibuflavone etc...
The rhematologist was really impatient with me..I guess I really can't expect anyone to really relate to how bad I feel about losing bone/height or to expect 'comfort' especially from clockwatching HMO Md's. But she refused to prescribe fosamax or any of the others, saying that my Osteopenia was too mild. Frustrated. Yet, I know i'm not absorbing food adequately.
Enough.
Thanks for the support!
Bob

Hi once more Bob,

Yeah, well I don't think we can look to docs for major compassion--they are not family members. What I most value is a doc who does not mind my stupid questions, who is patient and talkative and not condescending. I want info, and a willingness to work with me to help design my own course of health care.

Good on you for taking calcium and all. Don't neglect the vitamin D--or get lots of sunshine. And do look into weight lifting or other resistance exercise (like plyometrics) for bone health. Seems to make a meaningful difference. (Meanwhile, you'll be making yourself look like Arnold! Well, maybe not.)

Best of luck....and keep the faith. AS I'm sure you know, depression, sleep disorders, and exhaustion are among the very most common symptoms of hep c. It is a b...ch to cope with, but remember that its the bug not your psyche that is at the root of it, and this may help you get through.

Hope so, anyway.

sean

Hi Bob,

Welcome to these boards! I hope you find some of your answers here.

You say you were diagnosed about a year ago. Was it the same primary care doctor you have now. Just curious as it seems anyone that diagnosed you would have referred you to a specialist at that point to keep an eye on it.

You're 100% correct, time to either get serious with your primary care doctor and say "Look, I'm concerned about my HepC, I want to look into it further" OR...get a new primary care doctor. We're lucky enough to have a primary care doctor that ADMITS to not being a "all knowing being" and says "this is out of my league, I've ran all the tests, time to refer you to a specialist." I'm here to tell you that MOST doctors will NOT do that.

Although you do need to see some sort of specialist and get bloodwork checked out...it doesn't necessarily mean you need to have a biopsy. My husband chose to have one as he's had HepC for years and years plus the fact that in those years he's been drinking and not taking care of his liver---adding fuel to the fire all these years really scared him into thinking he'd ruined his liver and the only way to find that out was a biopsy. Painful (for him anyways) but glad he found out. I think your best and first action should be to see a specialist.

It doesn't hurt to educate yourself a little about HepC, causes and treatment a little before you go in there. Some (aw what the hell, MOST)doctors will try to talk circles around you but if you're a little knowledgable before you go in...you'll know a little of what they are saying.

Not sure what to do tell you about your other symptoms, perhaps when you vist the specialist you can discuss all that AND the HepC.

Take Care,
DirtDiva

Hi Bob, welcome to the board and welcome to over 4 million Americans with Hep C. You are not alone.

You are correct when you say you need to get a new primary! What an idiot! I too am with an HMO and I had to change twice before I found someone who actually studied up on this stuff. My first one was like yours, said geno typing didn't matter and wanted to start me on 48 wks of treatment with no blood work!

Your first step is to find a gastro that deals with HCV and NYC it shouldn't be too hard to find someone who specializes. Then you must have a liver biospy. Its not as bad as it sounds but this will determine IF you have any damage. Not everyone with HCV has liver damage. From there you can make your decisions to treat and rock on like you have so far.

I've had this for about 20yrs and drank like a frat boy for most of those years and I have minimal damage so ya see all's not so bad.

Educating yourself if your best defense against this disease, if you drink alcohol, stop, and research all the drugs you take to see how toxic they are to the liver. With your poly, you may not be a candidate for current treatment now but there are alternative therapies that can be utilized.

We will be here to support you and ask as many questions as you like. The internet has a wealth of information on HCV but just don't buy into the crackpot treatments. Just remember, we wear the same shoes as you.

Take care Bob,
Jeannie

hi bob and a warm welcome to the board
wow, i can relate to the anxiety!.i am taking oxazapam 15mg's 2xdaily, plus a florazapam 30mg's at night to help me sleep.i have not done any treatment thus far after learning in /99 that i got the virus in /82.i was offered treatment right away, but i never knew "nothing" about hepc at the time and i wasn't about to jump into taking something that i never knew nothing about.my gp "at the time"was clueless about the virus and she told me that form the beginning. after i started to do some research of my own, from the library, then i got my com. and now i don't feel so alone.as we all share our info, and there is alot of knowledgeable info on this site.
i went to see my liv doc there one time, unfortunetly "he"was not there, so i seen another one,this guy was rude and ignorant.my file was sitting in front of him "closed", and he asked me how i was, the next thing he said to me was "this is what happends,when you all were doing your speed thing back in the day"!if he would have opened my file instead of his mouth then he would have learned that it was a transfusion in 82.(no offence to anyone who contracted this through iv, alot of my friends did it , i just wasn't into it)my point is though he never had the right to assume nothing.that evening i had a panic attack due to the stress that was caused by him getting me so upset.
also i have alot of r,a,it's in my spine (spinal deterioration from a car accident almost taking my life in /73.the docs had me try all kinds of meds for the pain from r.a. and all i was getting was a hyhetiss hurnia from it.so i live with this.i won't take tylenol with codine at all, i do take the gel caps advil "for migranes", it helps somewhat and that's fine with me.also i take a liv-tone capsule 2x's daily with milk thistle etc.,1 multi-vit(no iron),and a vit e (jamison brand 400iu's).i have a new gp now that knows about the virus and words cannot express the feeling of how great it is to be able to talk freely with the doc regarding the virus and knowing that "he knows about it".it is very important that a doc and patient can relate to the virus even through study,by all means you should see a doc and find out for your own peace of mind, just what's going on.i hope that this is of some help,looking forward to hearing from you
keep the faith, bless you..............mj

i forgot to mention that i take 2 tums for calcium.
keep the faith, bless you...................mj

Howdy Bob-
Wow, other than welcome to the board from myself, looks like I have nothing to say with all the other wise imput.

Be positive be well+

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

Hello again friends and thanks a million for your warm and encouraging responses.

I'm really exhausted today, horrible anxiety knocked the sh-t out of me and man......whewww.

Just checking in with you guys.
maybe i'll sleep tonite..
-- Bob

hi bob
have you asked your doc about meds for the anxiety,and something to help you sleep?the meds i take as i mentioned before, do me pretty darn good.but i need to take them just the same and they are all in the diazapam family, my doc tells me that they won't hurt me, and my liv doc said the same thing.i really hope that you find something to help you. those "can't sleep nights", wow i could never forget those many many nights.do you find that everything hits at you (thinking wise)it's like building up mental stress from lack of sleep.please let us know how you are when your ready, looking forward to your reply.
keep the faith,bless you.....................mj

Hey and thanks, MJ.
I've been on Clonopin for a while. Makes depression worse the next day...horrible rebound effect for me. And I've tried what seems like everything for sleep.
I have a bad jaw/bite problem that makes it difficult to stay asleep.
I'm going to give Lexapro a shot although i've had bad luck with antidepressants in the past.
The diagnosis of early onset osteoporosis has totally blown my mind. Losing height(!!) and no real help for this.
Probably related to Hep C...but nobody knows anything.

I'll go to a hepatologist , get the GD'd biopsy and see what's going on. Very depressed and burnt.
Years of depression/severe anxiety/no sleep
It reaches a point where I get virtually psychotic with anxiety (can't leave the house, things seem threatening, heart pounding, can't eat..).

It was almost better before I got clean.
Things were really simple then and I was still 'immortal' (lol).

Thanks, everyone for being here.
Bob

hi bob
antideppressents!! they tried me over the years with all kinds of them, i went through hell with anxiety, it's like the antideppressents "counteracted" on me. but in no way would those docs listen to what i was telling them.yet had they been listening to me i could have saved all the panic attack's and take the "right kind of meds" to prevent the anxiety in the first place!finally some years later after many docs,i'm medicated and am doing ok with what i take.i'm gratful to even have doc's but in my oppinion we are the ones that are dealing with anxiety, and sleepless nights,and unless they have it how the heck do they understand.i have always been upfront with my docs"did the drug & booze thing myself"i think what really gets to me is that because of being honest to the docs regarding "drugs &booze"they seemed to have held it against me.and i quit booze now 8 years, drugs was years before.however, i have been medicated for a number of years now and i'm soooo greatful for the 1 doc, who actually heard me out and listened to what i had to say.
it took a long time for them to see that i can't take the antideppresents.i hope that you find a med. that will help you.wishing you well, you're in my prayers
keep the faith, bless you.................mj

when i have the fatigue and we all know what that's like, i take a gravol75mg's.they nock me out!in my own oppinion they are stronger than the night med i take.but i only take 1 when it's absolutley needed, my liv-doc also said that they are ok to take.of course not to be depended upon by no means.i sure hope that you find something that will help your anxiety.i went all those years going to different doc's,and letting them know that anti-deppressents were making me halucinate,etc.i'm not a dr. by no means but it's been my own experiance with anti-deppressents, that i'm refferring to, they never did help me they made me worst.take care
keep the faith, bless you.............mj