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Medical Forum / Diseases and Disorders / Hepatitis / May 2004New Dx
Hi All: I was just newly diagnosed with Hep C when having routine pre-surgery blood tests for a gallbladder removal. I have heard too many horror stories about Interferon tx and have opted not to have it plus I have many other health issues plus I am genotype 1a and would most likely be a nonresponder. I am 53 and have probably had this for about 25 years. My viral load is about 1 million and a half and my liver enzymes are not too high. I feel okay except for liver pain and I think that is a result of the gallbladder surgery. My question is: What do you think of herbs? I ordered a huge amount of Hep-C friendly herbal supplements and I wonder if they will work or if it is a bunch of snake oil. I have milkthistle, alpha-lipoic acid, selenium, astragalus, vitamin E, artichoke extract, aloe vera capsules, liver Kampo, spirulina, thymus extract, quercetin, lecithin, shizandra, ginger tea, Reishi Liver-guard tea, and liver detox tea. I take them but can't say that they do anything so far except slightly minimize the liver pain. I would hate to throw my money away on herbs that won't work. Sometimes I think that the best remedy is to keep one's life as stress free as possible and eat the right food. Opinions, anyone? L.G. > Hi All: > I was just newly diagnosed with Hep C when having routine pre-surgery blood [quoted text clipped - 17 lines] > and eat the right food. Opinions, anyone? > L.G. The milkthistle, alpha lipoic acid, are helpful from the research I have done. Also, research on SAM-e indicates it may be helpful. One can over-do the herbs real easily and they are expensive. 400 IU of vitamin E can supportive probably, as long as one isn't on any type of blood thinner. A basic multiple vitamin, without iron, could be helpful. The virus uses up selenium. When the cell starts to die because of a lack of selenium, the virus will jump to other cells. So, taking selenium is believed to possibly be helpful. Maybe someone else here will have an opinion about some of the other products you mentioned. It wouldn't be a bad idea to have a liver biopsy and find out exactly what the state of your liver is before completely negating the idea of treatment. Just an opinion. SusieQ > Hi All: > My question is: What do you think of herbs? I ordered a huge amount of [quoted text clipped - 11 lines] > and eat the right food. Opinions, anyone? > L.G. 1a has a fairly decent success rate. I don't know who told you it didn't, but whoever did was wrong. You can herb yourself til the cows come home and it won't make one iota of difference to the virus. It'll merrily eat your liver just the same. You might feel better, but you won't BE better. Same goes for eliminating stress. I wish I had another shot at tx. Yes, I'm a non-responder (twice), but if I could go back to the beginning I'd try all over again just the same. I've had the virus for about 30 years and even with all the herbs and vitamins and good thoughts (yep, I tried 'em too), my liver is still somewhere between bad and really bad. You don't want to be in my shoes, believe me. > Hi All: > I was just newly diagnosed with Hep C when having routine pre-surgery blood [quoted text clipped - 17 lines] > and eat the right food. Opinions, anyone? > L.G. Don't give up on treatment before you give it a chance. I don't know what your other health issues are, but I've got my share and tx has helped my liver even if I didn't clear the virus. There are two people posting today that have just finished or will finish tx this week that are undetectable and they are/were both 1a. If you look at the web site in my sig line you'll see a list of a few of the people that have attained an SVR (cured). As far as feeling OK right now, a year ago I was racing mountain bikes (bicycles) by August hepc had robbed me of my stamina and I had trouble completing a mile. Hep-c is a time bomb, you never know if or when it will start destroying your life. BTW, I'm 48, 1a, and have had hepc for about 25 years. I had a viral load of 1.17 million when I started tx this time, I was only down to 30,000 after 6 months. I'm still taking my shots and waiting for the next tx to come along so I try for the third time. Life is worth fighting for, when doing battle with the dragon, show up with the proper weapons.  SignatureDwight Dragon Slayers' Club: http://geocities.com/dwightmspage/ > > Hi All: > > I was just newly diagnosed with Hep C when having routine pre-surgery blood [quoted text clipped - 33 lines] > along so I try for the third time. Life is worth fighting for, when > doing battle with the dragon, show up with the proper weapons. Anyone on this list had a transplant? The reason I ask is that I have heard that because of the anti rejection drugs that treatment is not as successful after transplant. SignatureKilowatt@charter.net Add "private" to the subject line. SignatureRegards, Shawn . > Anyone on this list had a transplant? > The reason I ask is that I have heard that because of the anti rejection > drugs that treatment is not as successful after transplant. Yes I've had a transplant and my doc says that I could neither physically nor mentally stand up to treatment. Believe me, 48 weeks of tx is nothing compared to the purgatory of daily cyclosporine forever!!! > > Anyone on this list had a transplant? > > The reason I ask is that I have heard that because of the [quoted text clipped - 5 lines] > Believe me, 48 weeks of tx is nothing compared to the > purgatory of daily cyclosporine forever!!! I remember you telling me before that the doctor also confirmed (by not saying) that people after transplant don't do treatment as well. I am doing Pegasus now and after a quant the coordinator says I am negative. I am still early in treatment (about 3 months), but this could be good news for the "after transplant" team. I haven't had any problems with rejection and I am at 2 years out. The only anti rejection drug I am taking is Prograf 2mg x 2 a day. I don't know anything about cyclosporine, but most I know at Emory are taking Prograf. I didn't find out I had HepC until I found out I had end stage liver disease, and I still don't know what genotype I am. When I asked that question before transplant the doctor said it really didn't matter. I haven't thought to ask again. Have you tried Prograf? >I have heard too many horror stories about Interferon tx and have opted not >to have it plus I have many other health issues plus I am genotype 1a and >would most likely be a nonresponder. Well, I also am 53 and I'm barely even noticing the tx. Now, I probably need to point out quickly that I've recently started and that may change, but it just hasn't been a big deal. I mean, the worst part was the freakin' needle, believe it or not. W. That's good the side affects have been mild for you. I hope it continues for you. My third shot was nothing. But that was the only shot that didn't affect me. It was downhill after that. It took about 2-3 months till tx started to wear on me. I started tx July 9th last summer and quit work on October 14th. That's about when we normally get laid off for the winter anyway so it was no big deal. Kill bugs.... SignatureRuss Remove "NOSPAM" for replies. > > >I have heard too many horror stories about Interferon tx and have opted not [quoted text clipped - 7 lines] > > W. >That's good the side affects have been mild for you. I hope it continues for >you. [quoted text clipped - 6 lines] > >Kill bugs.... I hear what you're saying, sir. I did point out that I also was new to treatment and that it's way too early to see any general trend. But I say always have a good day every chance you get. It's not like it goes into some cosmic account that has to be offset by a bad day later. W. It might occur to someone to ask their care giver how long it takes for the wonderful combo to become one with the patient. Hint: It isn't 2 weeks. Signaturelucky > > >I have heard too many horror stories about Interferon tx and have opted not [quoted text clipped - 7 lines] > > W. >It might occur to someone to ask their care giver how long it takes for the >wonderful combo to become one with the patient. Hint: It isn't 2 weeks. I'm aware of this. I'm also aware that each person is different and has a completely different experience. I cannot predict the future and neither can you. Some people shrug it off through the whole thing... it just doesn't much bother them. We'll see. The tinnitus certainly is a PITA. Did you notice that? (The tinnitus, I mean... that it's a PITA is subjective, of course.) W. > The tinnitus certainly is a PITA. Did you notice that? my ears ring so loud I can hardly tune my guitars sometimes. It is been like that most of the time. Tinnitus is really annoying. Sometimes I would hear "noises". Some kind of weird delusions. It's hard to say how the sides will affect you. Some people do really well, some not so good. At the clinic I go to for treatment, they have a 35% drop out rate for the Pegasys/Riba treatment. Some are for medical reasons, but some are dropping out because of the side affects. Your right to keep an open mind and keep your chin up. You will know soon enough how things will hit you. I feel pretty good for my last shot. No more.... man. Like waking up from a bad dream.... My friend you take it easy and don't sweat the big stuff, the little stuff will take care of it's self. Let us know how you are doing. SignatureRuss Remove "NOSPAM" for replies. > > >It might occur to someone to ask their care giver how long it takes for the [quoted text clipped - 9 lines] > > W. >> The tinnitus certainly is a PITA. Did you notice that? > [quoted text clipped - 15 lines] >My friend you take it easy and don't sweat the big stuff, the little stuff >will take care of it's self. Let us know how you are doing. Thank you for the encouragement, sir. I'm very lucky to also have a close circle of friends and family on whom I can draw if (or when) times get rough. It's only a year... I can do that. I'll get where you are and I'm not going to make everyone around me miserable doing it. One issue is that my wife has become a health-food freak... you know: wheat sprouts, lentils, no steak, and protein bars that look for all the world like a Snickers but taste like cardboard. (I stuffed one in my mouth as I was walking to lecture... bad idea, that! I was still chewing five minutes into class.) W. > times get rough. It's only a year... I can do that. I'll get where > you are and I'm not going to make everyone around me miserable doing > it. The last few months I have found it better to stay to myself. People have become rather annoying and irritable to me. The brain fog makes it hard to converse anyway. > One issue is that my wife has become a health-food freak... you know: > wheat sprouts, lentils, no steak, and protein bars that look for all > the world like a Snickers but taste like cardboard. (I stuffed one in > my mouth as I was walking to lecture... bad idea, that! I was still > chewing five minutes into class.) I've had those before, they are terrible. You may well get to a point where food just doesn't look good and just trying to eat healthy can be a chore. Don't starve yourself!! Sometimes I get a strange craving for greasy food. I'll go to Mickey D's for a quarter lber and fries... like heppiechick once said, "Better to eat junk food then no food!" Right now for breakfast I'm having some fresh from the garden rhubarb cobbler, excellent!!!!! SignatureRuss Remove "NOSPAM" for replies. > > >> The tinnitus certainly is a PITA. Did you notice that? [quoted text clipped - 30 lines] > > W. >The last few months I have found it better to stay to myself. People have >become rather annoying and irritable to me. The brain fog makes it hard to >converse anyway. I will draw strength from those around me... and from you, sir. Most people have their annoying and irritating moments in the best of times; I'm quite certain that I do. W. Re: New Dx Group: alt.support.hepatitis-c Date: Sun, May 30, 2004, 1:29pm (CDT+5) From: xxx@hotmail.com (Waldron) On Sat, 29 May 2004 22:10:32 -0800, in alt.support.hepatitis-c "Russ" <NOSPAMsourdo55@yahoo.com> wrote: The tinnitus certainly is a PITA. Did you notice that? my ears ring so loud I can hardly tune my guitars sometimes. It is been like that most of the time. Tinnitus is really annoying. Sometimes I would hear "noises". Some kind of weird delusions. It's hard to say how the sides will affect you. Some people do really well, some not so good. At the clinic I go to for treatment, they have a 35% drop out rate for the Pegasys/Riba treatment. Some are for medical reasons, but some are dropping out because of the side affects. Your right to keep an open mind and keep your chin up. You will know soon enough how things will hit you. I feel pretty good for my last shot. No more.... man. Like waking up from a bad dream.... My friend you take it easy and don't sweat the big stuff, the little stuff will take care of it's self. Let us know how you are doing. Thank you for the encouragement, sir. I'm very lucky to also have a close circle of friends and family on whom I can draw if (or when) times get rough. It's only a year... I can do that. I'll get where you are and I'm not going to make everyone around me miserable doing it. One issue is that my wife has become a health-food freak... you know: wheat sprouts, lentils, no steak, and protein bars that look for all the world like a Snickers but taste like cardboard. (I stuffed one in my mouth as I was walking to lecture... bad idea, that! I was still chewing five minutes into class.) W. /////////// No steak? Ditch the bitch!! http://community.webtv.net/elmoemerson/DocElmosHepFile Dear Waldron, The future isn't what it used to be. YB This unsurprisingly is one of two facts about the future. Signaturelucky > > >It might occur to someone to ask their care giver how long it takes for the [quoted text clipped - 9 lines] > > W. PITA costs alot of bread, man. http://community.webtv.net/elmoemerson/DocElmosHepFile > PITA costs alot of bread, man. Lame, Elmo, really lame. :-) Re: New Dx Group: alt.support.hepatitis-c Date: Mon, May 31, 2004, 9:36am (CDT+1) From: me@privacy.net (Thip) <elmoemerson@webtv.net> wrote in message news:3143-40BAA117-105@storefull-3253.bay.webtv.net... PITA costs alot of bread, man. Lame, Elmo, really lame. :-) ////////// Sorry, Thipper. I can't help it if my jokes are bad. I'm getting cabin fever living with my folks. Neither one of em can hear worth a damn and you have to yell at em to get em to hear you. I'll say to my dad, "The blackberrys are getting blossoms" and my mom will say "Who did they bury?" Well, it's time to do some chores. LOL Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile >I have heard too many horror stories about Interferon tx and have opted not >to have it plus I have many other health issues plus I am genotype 1a and >would most likely be a nonresponder. "Most likely"? Your chance in general is about 50/50. It's much lower for people of African descent, but for most other geno 1's it's even slightly better than 50%. >My question is: What do you think of herbs? I ordered a huge amount of >Hep-C friendly herbal supplements and I wonder if they will work or if it is >a bunch of snake oil. It is a bunch of snake oil. The general consensus is that taking milk thistle makes sense - it's cheap, it doesn't hurt (except during treatment), and it might help (although there is no clear indication that it does any good for Hep C). Everything else is voodoo. It might make you feel better, which might in turn help your liver status, but other stress reduction techniques are a lot cheaper and more satisfying. >Sometimes I >think that the best remedy is to keep one's life as stress free as possible >and eat the right food. Robin posted an interesting article on the effects of stress on HCV just a few days ago. And a somewhat healthy lifestyle (zero alcohol, a balanced diet) is generally a good idea, since it eliminates the need for supplements. There's no "right" food per se, a completely normal diet is fine. Thomas SignatureTo reach me, complete my last name in the address. Question Thomas, How is it known that milk thistle is bad during treatment? Signaturelucky > > >I have heard too many horror stories about Interferon tx and have opted not [quoted text clipped - 27 lines] > > Thomas >How is it known that milk thistle is bad during treatment? It isn't known, it's just a suspicion. Milk thistle changes the way some drugs are metabolized by the body, helping the liver to eliminate toxins faster. If, for example, it would cause Pegasys (which is processed in the liver) to leave the body faster, it could be bad news for your SVR. But it has never been tested with combo treatment, it's only known to affect some other drugs. However, since it also has no known positive effects on treatment, it seems prudent not to take it during treatment until the results of a planned German study are in. Thomas SignatureTo reach me, complete my last name in the address. thanks Signaturelucky > > >How is it known that milk thistle is bad during treatment? [quoted text clipped - 11 lines] > > Thomas Using herbs to treat Hep C is like using sand bags to protect yourself from a tidal wave. Sure it will help, but your really wasting your resources and time. Read this http://www.hivandhepatitis.com/hep_c/news/2004/030304_b.html and spend some time doing your own research concerning treatments that are currently used (articles dated late 2003- and early 2004). Kill the dragon, Julie > Hi All: > I was just newly diagnosed with Hep C when having routine pre-surgery blood [quoted text clipped - 17 lines] > and eat the right food. Opinions, anyone? > L.G. Since you asked, I think you would be crazy to rely on any of those things you mentioned. Also, you would be even more nuts to make a decision of that sort without having a liver biopsy. I was a 1a, did the treatment, and am clear of virus. You won't be able to say that if you don't pay your dues. Pain in your liver is from your removed gallbladder? I like your sense of humor. Stick around. Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile |
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