Author Topic: confused about hep c (Read 52627 times)

spirit lady · « **on:** November 18, 2011, 10:21:20 pm »

i was just diagnosed with hep c geno type 1, in reading i guess i need to ask my gi doctor more info on my blood tests. im still reeling from being told. i refuse to believe that i cannot be cured. i've read that the use of interferron can cause severe side affects that can last for years after stopping treatment, is this true? my gi doc wants to start me on 3 drug therapy. i have never been an iv drug user of any kind, nor do i drink in excess, so i know this helps with my treatment i hope. i guess my infection came from my ex batterer who was unknown to me at the time an iv meth head. so now i do not drink any alcohol, and i quit smoking. i have heard of herbal cures with milk thistle, licorice root and a great many others... can you tell me if these really work? also im taking a liver cleanse herb. please help im so confused but determined to be cured.any help is appreciated.

Tim Horn · « **Reply #1 on:** November 20, 2011, 08:44:03 am »

Hi Spirit...

Well, I'm sorry about your recent diagnosis, but it's good you're being proactive in your search for information and support. Whatever questions you have, we're here to help!

Question -- have you had a liver biopsy done? If you haven't, you can learn more about it on this page. While your GI doc is recommending treatment, did you also discuss whether or not it's possible to delay treatment, based on your liver's current health?

Even if your GI doc confirms that treatment is necessary, there's a lot to be hopeful for. With the approval of two recent drugs -- either one of which is combined with once-weekly injected interferon therapy and twice-daily oral ribavirin treatment -- the odds of curing genotype 1 HCV is more than 70 percent. What's more, we've learned a lot about how to use these drugs... you'll be monitored closely during treatment, so that you'll only be continued on therapy if it's clearly working, as to avoid unnecessary side effects if therapy isn't proving effective for you.

Yes, if treatment is warranted, interferon can be rough. However, by working closely with your doctor -- there are ways to help manage some side effects, such as fatigue and depression -- and having a support system in place (friends, family, etc.), you'll be in an excellent position to deal with whatever comes your way head on.

Unfortunately, the jury is still out with respect to complementary/alternative therapies like milk thistle. In fact, a recent study didn't show much in the way of benefit. If, however, you come across a particular complementary therapy in your research you'd like some opinions on, please let us know here!

Like I said, you're in the right place; a number of our members have been down this road -- or have similar doubts and anxieties as you do -- and I imagine you'll hear from others as well.

Glad you're here,

Tim Horn

Ann · « **Reply #2 on:** November 21, 2011, 09:47:36 am »

Hi Spirit, welcome to the forum.

I did the Interferon/Ribavirin treatment in 2002/03 and was successfully "cured". I say "cured" because doctors prefer to call it a "sustained response" rather than a cure. However, if your hep C viral load remains undetectable for a year, you can consider yourself cured. My VL has been undetectable for nearly ten years now. (will be ten years in June 2012)

I had genotype 3a, which is one of the more easily treated genotypes. Now that they are adding a third drug (a protease inhibitor) to the treatment for people with genotype 1, many genotype 1 patients are also enjoying sustained responses. So yes, there absolutely IS hope for you too!

I won't kid you - the treatment is tough. It's well worth trying and sticking with it though, because the rewards are great.

The side effects normally subside within a few weeks of stopping treatment. The only side effect that didn't completely go away for me is hair loss. I lost a fair amount of hair while on treatment (it doesn't come out in clumps like with chemotherapy for cancer, it comes out evenly all over - a thinning effect) and most of it started growing back within weeks of ending treatment, but my hair is still thinner than it used to be. It's not a problem and it's not anything that anyone other than me notices. I looked kinda funny when it started growing back - I had little spikes of hair coming up all over for a week or two until they got long enough to lie flat on my head.

I had quite a few of the side-effects and most of them disappeared within the first week post-treatment. Some took a little longer to subside, but it certainly did not take years. Most of the side-effects can be managed to an acceptable level.

Some side effects may require help from your doctor. He or she will monitor your blood for levels of various components of your CBC (complete blood count) at least monthly. For example, if your hemoglobin levels drop down to unacceptable levels, your doctor may reduce the amount of ribavirin you are taking. This happened to me. I became very anemic and would become breathless just walking across the room, but a reduction in my ribavirin dose had me feeling better in no time.

Regarding the herbal or "natural" remedies, NONE of them will cure hep C. Some of them may help with the symptoms of hep C or with the side-effects of treatment, but none will have any effect on the virus itself.

Some of them have no benefits whatsoever. A recent study showed that Milk Thistle is one of those herbs with that has no effect. You can read about it by clicking here.

The thing that got me through the year of treatment and the side-effect was reminding myself that it was only for a year and if it was successful, I wouldn't have to worry about my liver any
more. It was well worth it.

Do you have any more questions? Please feel free to ask. That's what we're here for!

Ann

spirit lady · « **Reply #3 on:** November 21, 2011, 01:05:37 pm »

how do i ever say thankyou to all those that have replied. i don't feel so scared and alone. the book i read was by Lloyd wright and title was overcoming hep c i think. he did a major herbal remedy list and cured himself of this hep c . I'm just so afraid that the side effects wont go away as i start a 3 drug therapy in December. really not looking forward to it but want to be cured. thankyou to all that replied, i need you thankyou

Ann · « **Reply #4 on:** November 22, 2011, 12:57:36 pm »

Spirit, this is the first time I've ever heard of this Lloyd Wright fellow, but I smell a rat. I've done a little research online this afternoon and I'm very sceptical. I'll do more research tomorrow and let you know what I find.

spirit lady · « **Reply #5 on:** November 22, 2011, 06:23:08 pm »

THANKYOU to all my new found friends here. may GOD bless you all. i am so humbled by the love here , this is an awesome site. it helps me so much. to you that have replied to me i can't thankyou enough. good news is my liver level being 70 is not bad at all. so my treatment should be just fine.i know it will be rough but my GOD will help me thru this. i already asked my doctor if he believed in devine intervention cause i told him that i was gonna be his first miracle. these 3 stage drugs are new treatment still in trial stage so lookout hep c , new drugs gonna whoop ya right out of me. having you guys writing me and supporting me helps me ALOT !!!!!!! i quit smoking also yeah for me and GOD !!

spirit lady · « **Reply #6 on:** December 04, 2011, 09:06:05 pm »

there is so much to learn about hep c geno type 1 , omg i wish i didnt have this, i quit smoking praise god.i'm so concerned about treatment on whether to start it or not because i don't have any symptoms yet. but i dont want to be sick so isn't it better to go ahead and get treatment over with. need my buddies here please ? i just want this cup to pass me, ugh i feel like my life is on hold due to treatment. i just need an open space to scream...

Ann · « **Reply #7 on:** December 05, 2011, 11:35:10 am »

Spirit, in my opinion you'd be better off treating BEFORE you start feeling symptomatic. Being asymptomatic does not mean that your liver is not being damaged by the virus.

If you feel that your life will be on hold due to treatment, just think what it would feel like if your liver becomes so damaged that you need a transplant. Treatment is your friend. It's not the enemy.

Speaking of enemies, I've been meaning to get back to you about this Lloyd Wright guy. I spent hours investigative him after you mentioned him. THROW HIS BOOK OUT. Better yet, BURN IT so it can't fall into the hand of some other unsuspecting hepper.

He's nothing more than a charlatan and a fraud. There's no real evidence he ever had hep C in the first place. He claims his lab paperwork was lost or destroyed. How convenient!

He wants you to spend money on his expensive supplements - supplements that he does not have one shred of scientific evidence as to their efficacy in treating hep C. He uses scare tactics to sell his "cure". Stay away from him, his books and his products, please!!!

spirit lady · « **Reply #8 on:** December 05, 2011, 06:40:40 pm »

well hello ann, thankyou for your concern and support. yes you are right. been praying hard. i actually felt his hands on my arms as my future mother in law and us were praying. i don't mean my life is on hold in a bad way i know that i'm sick, just wasn't expecting all this bad news when i went to the doctor ya know ? was planning a wedding and traveling but now all this is on hold. thank GOD that i have the love and support of my family. i am blessed that way. yes i agree get the treatment overwith, then get on with my life. got told the nodules on my lung were slightly abnormal, so i quit smoking, yeah for me. so maybe GOD can give me the 2 for 1 special and these chemo drugs will help with this lung junk. been feeling down lot's of family issues going on, trying to keep positive like my doctor said but dang it's hard sometimes when you hurt for your children.was told that i will go to doc for 2 hours of school then 2 more again, then start treatment. ugh gonna make my fiance give me drugs. so spikey hair huh? well ann my dear this will be funny looking on me as i have hair down to my bum. gonna have to find a joke about that. having this forum is so helpful to me , we all need each other. trying to get all my affairs in order before treatment so my honey doesnt have much to do. the book gone , burned actually stripped it. thankyou so very much from the bottom of my heart, you take care and you help me ...just want you to know that !!

GOD bless

Ann · « **Reply #9 on:** December 06, 2011, 12:54:02 pm »

Spirit, you're welcome. I'm happy to help and lend support.

I'm also happy to hear you got rid of that book. Good riddance!

Don't worry about the spiky hair. It doesn't last long and it's not all that noticeable. Some people never experience any treatment related hair loss at all, so try to not worry about it.

If you have any specific questions, I'd be happy to answer and help.

Ann

truckman · « **Reply #10 on:** December 06, 2011, 05:36:27 pm »

well how are u doing i 'am confused about having hep c i had a viral load blood test and my doctor told me that my count is 330,000 which is really low. so he said treatment is not an option yet. He have me just taking milk thistle and vitamin c and vitamin e. is it possible that my body will fight of hep c by itself?

spirit lady · « **Reply #11 on:** December 06, 2011, 05:56:40 pm »

hello there, welcome. my doctor told me to go to the NIH website for any info on this hep c. i have read where people have had their body cure themsleves. very rare but does happen. i feel like ann said why wait till im severly sick, hit the problem now before im symptom matic, then my liver is very ill. ask away here others will help also. im still learning my results, a little frustrated but praying alot.

spirit lady · « **Reply #12 on:** December 06, 2011, 06:01:31 pm »

by the way he has you taking milk thistle and these other vitamins, been reading up on these in medical writings. check there also.places like jama. i tried milk thistle and it made me so sick. keep in touch and let me know. best wishes for you.

truckman · « **Reply #13 on:** December 06, 2011, 06:02:25 pm »

well if my doctor is telling me not to do anything what shall i do? r u taking any vitamins? any tips for the feeling of being tired all the time?

truckman · « **Reply #14 on:** December 06, 2011, 06:05:40 pm »

and where can i start looking up info bout hep c? please give me some websites.

spirit lady · « **Reply #15 on:** December 06, 2011, 06:13:21 pm »

hello, you can google hep c also go to the nih medical website.the national institute of health has alot of good info on this hep c. also a second opinion is always good too. after all this is your life . as for being tired i would ask your doctor about this issue. i know if it were me i would start treatment now, no waiting for me cause then my liver will be to sick. good luck

iana5252 · « **Reply #16 on:** December 07, 2011, 09:11:52 am »

A good place to start is our Hep C Basics Lesson:
http://www.hepmag.com/articles/2512_18752.shtml

Another good source of information is the CDC Hepatitis site:
http://www.cdc.gov/hepatitis/

Ann · « **Reply #17 on:** December 07, 2011, 10:49:20 am »

Another excellent source of hep C information is the hep C section of hiv and hepatitis.com. Don't let the hiv portion of the site put you off going there - it is an excellent site with up-to-date information.

Quote from: truckman on December 06, 2011, 05:36:27 pm

well how are u doing i 'am confused about having hep c i had a viral load blood test and my doctor told me that my count is 330,000 which is really low. so he said treatment is not an option yet. He have me just taking milk thistle and vitamin c and vitamin e. is it possible that my body will fight of hep c by itself?

Hi Truckman, welcome to the forum.

If your hep C infection is a very new one, it is possible that your body will clear it on its own. This can happen in around 15-20% of people. However, if you've had it for more than a year, unfortunately you're stuck with it unless you do the treatment. There are no effective herbal or "natural" cures. Some herbs or supplements can make the symptoms or side-effects more bearable, but they will not do anything to the virus itself.

Milk thistle has been shown to have no effect on hep C. Please read this article. You might want to print it out to show your doctor.

As for your doctor not wanting to treat you, you could get a second opinion. You should go to a liver specialist or an infectious disease specialist - make sure he or she has other patients with hep C and that they have experience in treating hep C.

Unfortunately, some doctors can be very dismissive - and sometimes downright rude - towards hep C patients. Regardless of how a patient was infected, some still see us as junkies and in my experience, some doctors will assume you are lying about past drug use.

If your doctor seems to be one of these (rude and/or dismissive), find another doctor ASAP. Even if you did acquired your hep C infection through drug use, you still have the right to be treated with respect and dignity and to be given the best health care available. Stand your ground on this issue. You will have to learn to be your own best advocate. Don't be afraid to stand up to a doctor who is not treating you with respect.

Ann · « **Reply #18 on:** December 07, 2011, 11:09:55 am »

Quote from: truckman on December 06, 2011, 06:02:25 pm

any tips for the feeling of being tired all the time?

Get plenty of rest and take short afternoon naps if you can. Eat the healthiest diet possible. Do not drink alcohol. Drink plenty of water. Exercise. It's surprising how much energy regular exercise can give you.

Don't be afraid to drink coffee - according to a study, Coffee Slows Progression of Hep C Liver Disease. Coffee has also been shown to help minimise hep C treatment side-effects. If you are having trouble sleeping, restrict your coffee intake to morning or early afternoon.

You should discuss your fatigue with your doctor. Here is a checklist that you should print or write out. Answer the questions on paper before you see the doctor. Show him the list and discuss it with him - it will help him decide if there may be underlying factors causing your fatigue, such as anemia.

* How long has the fatigue been present?

* Did it come on suddenly?

* Are there other symptoms such as cough, fever, weight loss, or diarrhea?

* Do you feel lightheaded or dizzy when you stand up suddenly?

* Was the fatigue accompanied by signs of depression?

* Was the fatigue accompanied by signs of decreased sexual function?

* Have you ever had your adrenal hormone and testosterone levels checked?

* Did the fatigue begin when you started or switched to new medication(s)? (such as antidepressants or sleeping tablets)

* Have any changes in your diet made you feel fatigued?

* Do you exercise?

* Are you having problems sleeping?

* Do you drink alcohol?

* Do you smoke?

* Do you use any other recreational drugs?

Fatigue is a common symptom of hep C. If you are also having other symptoms, it may be time to treat regardless of your viral load.

truckman · « **Reply #19 on:** December 07, 2011, 05:12:34 pm »

hi truckman again i had liver biopsy and my doctor said i have no scarring on my liver. I'm going in this month to talk to him. i have been dealing with hep c for bout 5 years now and thank God it hasn't progressed. but i need to know if the hep c haven't progressed any in 5 years do i try treatment still. cause i'm afraid that if i do it will start to progress.

truckman · « **Reply #20 on:** December 07, 2011, 05:24:52 pm »

hi truckman again i wanted to know is treatment real costly i have insurance so im hoping that will help. im not really having other symptoms but just being tired all the time.

spirit lady · « **Reply #21 on:** December 07, 2011, 05:36:59 pm »

hello truckman, from what i have read treatment will not start the disease progression, if anything it will begin to kill it. as i have been told by many people including my doctor that treatment is rough but oh the outcome to me far out weighs waiting on this disease killing me or making me sicker .as for me i have no symptoms at all. i only found out because i was able to finally get insurance and thought i might better get a physical, well im glad i did. i'm gonna kick hep c and move on with my life. no looking back. i have met some really nice people here. keep replying they will help you also. they rock.

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Author Topic: confused about hep c (Read 52627 times)