Guest guest Posted December 25, 2002 Report Share Posted December 25, 2002 Meghan, Hugs girl. I wish you felt better. I have a few thots, but you know, this is just an idea, it helps me so thot I'd offer it. You still drinking that water to flush out the chemicals? A little excercise will help with that too, and try some regular massage, force the toxins out of your muscles. I would check back with your doc too. Don't let thinking it's one thing mask some other possibility. And for some people, it takes 6 mo or more to feel better. I've heard heppers say they felt better the next day after treatment, to months later. It's a slow and frustrating process I know. I want to feel good NOW There is always the (dreadful) fact that just because you did treatment doesn't mean you're gonna feel better and a rare possibility that it will make you feel (or be) worse. It's not like an aspirin you take and expect pain relief. The treatment is very strong Rx and alters our bodies in ways we just don't know. I think it's important to talk about the " bad " parts of treatment, but don't let it scare you. Go see your specialist, maybe he/she can help. Let us know how you feel ok? Alley " If you want to be a hero knight, never look directly into the mirror, lest you see that tin pot on your head instead of a glorious plumed helmet! " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2002 Report Share Posted December 25, 2002 Meghan, Hugs girl. I wish you felt better. I have a few thots, but you know, this is just an idea, it helps me so thot I'd offer it. You still drinking that water to flush out the chemicals? A little excercise will help with that too, and try some regular massage, force the toxins out of your muscles. I would check back with your doc too. Don't let thinking it's one thing mask some other possibility. And for some people, it takes 6 mo or more to feel better. I've heard heppers say they felt better the next day after treatment, to months later. It's a slow and frustrating process I know. I want to feel good NOW There is always the (dreadful) fact that just because you did treatment doesn't mean you're gonna feel better and a rare possibility that it will make you feel (or be) worse. It's not like an aspirin you take and expect pain relief. The treatment is very strong Rx and alters our bodies in ways we just don't know. I think it's important to talk about the " bad " parts of treatment, but don't let it scare you. Go see your specialist, maybe he/she can help. Let us know how you feel ok? Alley " If you want to be a hero knight, never look directly into the mirror, lest you see that tin pot on your head instead of a glorious plumed helmet! " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2002 Report Share Posted December 26, 2002 Dear Gee, Thanks for the encouragement. Life sometimes seems so pointless when you can't enjoy it. I guess I just have to be patient and live with whatever I am left with from the treatment. I wonder if I have rebound headaches from too much medication. Do you think that is possible, or do you think it is the interferon still causing the pain? The cure might be worse than the disease. Your joint pain is probably worse for you than the symptoms of hep c. Keep your fingers crossed and say a prayer that my tests show no virus on the 13th of Jan. I know I couldn't do it again. My body couldn't take it and my veins were shutting down. Thanks again, Meghan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2002 Report Share Posted December 28, 2002 I too had post treatment blues.... just didn't feel right for the longest time. Can't tell you how long it lasted but it seemed forever. I just kept plugging along though...not like there is an alternative. I've now been off tx for way over a year and don't know if I'm the same as pre-treatment. I've been fighting a lot of brain fog (yes, I diligently take my MSM) and wondering if this is part of what they have been finding in the studies of the effects of the hep c virus on the brain or if I'm slipping into depression. Either way, with no insurance in this country they call " great " and a " world leader " I have no way of finding out what is going on with me. It's very frustrating for me....I learned to accept the brain fog during tx because it was a side....but I am a long time post tx and where is this brain fog coming from. But hang in there...the effects of tx will wear off and hopefully you will be better off than before tx. Tatezi Re: post treatment blues Dear Gee, Thanks for the encouragement. Life sometimes seems so pointless when you can't enjoy it. I guess I just have to be patient and live with whatever I am left with from the treatment. I wonder if I have rebound headaches from too much medication. Do you think that is possible, or do you think it is the interferon still causing the pain? The cure might be worse than the disease. Your joint pain is probably worse for you than the symptoms of hep c. Keep your fingers crossed and say a prayer that my tests show no virus on the 13th of Jan. I know I couldn't do it again. My body couldn't take it and my veins were shutting down. Thanks again, Meghan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2002 Report Share Posted December 28, 2002 PCR is what we use sometimes for the viral load test. It stands for polymarease chain reaction (hope I spelled it correctly, sorry if I didn't, I just woke up So when someone says " viral load " or " pcr " they mean the same thing. Cryo is something I can't even spell the whole word to look it up lol. You can probably find it on www.hepatitis-central.com or www.hepatitisneighborhood.com etc. Alley " If you want to be a hero knight, never look directly into the mirror, lest you see that tin pot on your head instead of a glorious plumed helmet! " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2002 Report Share Posted December 28, 2002 From: Sita@... Reply-Hepatitis C Date: Thu, 26 Dec 2002 21:32:53 EST Hepatitis C Subject: Re: post treatment blues Dear Gee, Thanks for the encouragement. Life sometimes seems so pointless when you can't enjoy it. I guess I just have to be patient and live with whatever I am left with from the treatment. It can sometimes take a long time to recover from treatment! It took me a very, very long time to recover. But-you will improve. Hope you stay undetectable. gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 In a message dated 12/29/02 12:19:58 AM !!!First Boot!!!, alleypat@... writes: > www.hepatitisneighborhood.com I searched for cryo and couldn't find anything. I guess you need the whole word to locate the meaning. Just tell me in your own words what it is. Thank you, Meghan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 In a message dated 12/29/02 12:19:58 AM !!!First Boot!!!, alleypat@... writes: > www.hepatitisneighborhood.com I searched for cryo and couldn't find anything. I guess you need the whole word to locate the meaning. Just tell me in your own words what it is. Thank you, Meghan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 Dear Meghan, my fingers will DEFINITELY be crossed on the 13th for you!!! I remember getting the headaches too...think they were from the Riba..who knows..but they did stop. Yes, I think the jpoint pain an be a result of treatment or leftover damage from the hep or the cryo..seems to be some kind of syndrome. The internist & the Rheumy both believe it is some kind of chronic inflammatory disease process related to the Cryo. Docs don't yet know much about Cryo and it's after-effects. But wjatever it is, it seems like it is here to stay so I've gotten used to it and it doesn't usually throw me over the edge unless the pain gets put of control (which I really try NOT to let happen! :) HOpefully, I will hear in hear next week that my PCR is still 'undectable'. I will be praying that yours is that too. God bless, gee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 Dear Meghan, my fingers will DEFINITELY be crossed on the 13th for you!!! I remember getting the headaches too...think they were from the Riba..who knows..but they did stop. Yes, I think the jpoint pain an be a result of treatment or leftover damage from the hep or the cryo..seems to be some kind of syndrome. The internist & the Rheumy both believe it is some kind of chronic inflammatory disease process related to the Cryo. Docs don't yet know much about Cryo and it's after-effects. But wjatever it is, it seems like it is here to stay so I've gotten used to it and it doesn't usually throw me over the edge unless the pain gets put of control (which I really try NOT to let happen! :) HOpefully, I will hear in hear next week that my PCR is still 'undectable'. I will be praying that yours is that too. God bless, gee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 Meghan, Cryo is Cryoglobulinemia nad PCR is a viral load. Didn't see this post when I answered the other one..haha..gee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 Meghan, Cryo is Cryoglobulinemia nad PCR is a viral load. Didn't see this post when I answered the other one..haha..gee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 Dear Tat...my memory is worse now than when I was on treatment or pre-treatment....go figure. My mom says my memory is worse than hers and she's 80!!!!! She is sooooo right. I wondered too if it was due to the Hep in the brain , treatment, or a combo of everything. But I'm definitely much foggier than I used to be! Oh well...what was I saying???????????LOL! gee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 Dear Tat...my memory is worse now than when I was on treatment or pre-treatment....go figure. My mom says my memory is worse than hers and she's 80!!!!! She is sooooo right. I wondered too if it was due to the Hep in the brain , treatment, or a combo of everything. But I'm definitely much foggier than I used to be! Oh well...what was I saying???????????LOL! gee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 Dear Gail, thanks! Appreciate the info. Bextra is an NSAID. I used to take up to 3000mgs of Ibuprofen daily and my doc would cringe, crossing his fingers that my kidneys wouldn't blow or my stomach. They didn't...but when I started to see the Rheumatologist, she first tried me on Plaquenil, but I got a body rash from it so I had to stop. We moved on to Bextra ( a new med). It doesn't take the pain away, but gives me as much relief as all the Ibuprofen did (which is miraculous!) Instead of taking 10 Ibus a day, I take 1 Bextra in the a.m and it lasts all day. Unfortunately, she will not let me increase it. So I can only take 20 mgs a day. But like I said, I still take Demerol during the day (usually in the a.m.) and Oxycontin before bed. I can pretty much deal with the residual pain. I had taken Neurontin for quite a while before treatment for the nerve pain, but I never did get over the sides (nausea & dizziness). I really would like to switch to one of the new patches that are out. I read about one recently that is being touted as a better way to deal with pain than using opoids. It (if I remember right..)is like oxycontin..but works better(no breakthru pain) and has been found not to be addicting. At this point I NEVER worry about that....but the docs do. Phyisical dependence is one thing and ADDICTION is a whole nother story! But that's just my opinion! Anyway, I don't know HOW I got into all of this...sheesh! Sorry..love, gee (P.S. I'm a Gail too!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 Dear Gail, thanks! Appreciate the info. Bextra is an NSAID. I used to take up to 3000mgs of Ibuprofen daily and my doc would cringe, crossing his fingers that my kidneys wouldn't blow or my stomach. They didn't...but when I started to see the Rheumatologist, she first tried me on Plaquenil, but I got a body rash from it so I had to stop. We moved on to Bextra ( a new med). It doesn't take the pain away, but gives me as much relief as all the Ibuprofen did (which is miraculous!) Instead of taking 10 Ibus a day, I take 1 Bextra in the a.m and it lasts all day. Unfortunately, she will not let me increase it. So I can only take 20 mgs a day. But like I said, I still take Demerol during the day (usually in the a.m.) and Oxycontin before bed. I can pretty much deal with the residual pain. I had taken Neurontin for quite a while before treatment for the nerve pain, but I never did get over the sides (nausea & dizziness). I really would like to switch to one of the new patches that are out. I read about one recently that is being touted as a better way to deal with pain than using opoids. It (if I remember right..)is like oxycontin..but works better(no breakthru pain) and has been found not to be addicting. At this point I NEVER worry about that....but the docs do. Phyisical dependence is one thing and ADDICTION is a whole nother story! But that's just my opinion! Anyway, I don't know HOW I got into all of this...sheesh! Sorry..love, gee (P.S. I'm a Gail too!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 Here is your full word....cryoglobulinemia (EMC)...and here is a description of it. I'll put some links to some sites below also. Essential mixed cryoglobulinemia Essential mixed cryoglobulinemia is a rare autoimmune disorder that may involve the blood and various other tissues and organs. The major symptoms include unusual response to cold, skin abnormalities, blood disorders and generalized weakness. There may also be joint pain, inflamed blood vessels, and kidney problems. The exact cause of essential mixed cryoglobulinemia is not known. However, it is considered to be an autoimmune disorder. (Autoimmune disorders are caused when the body's immune system, which is meant to defend the body against bacteria, viruses, and any other foreign product, malfunctions and produces antibodies against healthy tissue, cells and organs.) In this condition, the immune system appears to be triggered by cold temperatures. Cryoglobulins are proteins in the blood that become apparent when the blood is cooled. These cryoglobulins can affect many different bodily systems, causing pain and dysfunction. It is important to note that a link between cryoglobulinemia and hepatitis B & C infection is possible. I'm sure that now that you know the full word, you'll be able to find a ton of info on the net. Good luck. Tatezi http://dynamics.org/~altenber/cryo/HCV_cryo_refs.html http://dynamics.org/~altenber/cryo/ http://www.mayo.edu/mmgrg/rst/cryo.htm http://www.cx.unibe.ch/ikp/lab2/hcvcryo.html http://vasculitis.med.jhu.edu/typesof/cryoglobulinemia.html http://www.hepnet.com/hepc/cryoglob.html http://www.nursing.uiowa.edu/sites/AdultPain/GenePain/CryHeptt.htm Re: post treatment blues In a message dated 12/29/02 12:19:58 AM !!!First Boot!!!, alleypat@... writes: > www.hepatitisneighborhood.com I searched for cryo and couldn't find anything. I guess you need the whole word to locate the meaning. Just tell me in your own words what it is. Thank you, Meghan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 Here is your full word....cryoglobulinemia (EMC)...and here is a description of it. I'll put some links to some sites below also. Essential mixed cryoglobulinemia Essential mixed cryoglobulinemia is a rare autoimmune disorder that may involve the blood and various other tissues and organs. The major symptoms include unusual response to cold, skin abnormalities, blood disorders and generalized weakness. There may also be joint pain, inflamed blood vessels, and kidney problems. The exact cause of essential mixed cryoglobulinemia is not known. However, it is considered to be an autoimmune disorder. (Autoimmune disorders are caused when the body's immune system, which is meant to defend the body against bacteria, viruses, and any other foreign product, malfunctions and produces antibodies against healthy tissue, cells and organs.) In this condition, the immune system appears to be triggered by cold temperatures. Cryoglobulins are proteins in the blood that become apparent when the blood is cooled. These cryoglobulins can affect many different bodily systems, causing pain and dysfunction. It is important to note that a link between cryoglobulinemia and hepatitis B & C infection is possible. I'm sure that now that you know the full word, you'll be able to find a ton of info on the net. Good luck. Tatezi http://dynamics.org/~altenber/cryo/HCV_cryo_refs.html http://dynamics.org/~altenber/cryo/ http://www.mayo.edu/mmgrg/rst/cryo.htm http://www.cx.unibe.ch/ikp/lab2/hcvcryo.html http://vasculitis.med.jhu.edu/typesof/cryoglobulinemia.html http://www.hepnet.com/hepc/cryoglob.html http://www.nursing.uiowa.edu/sites/AdultPain/GenePain/CryHeptt.htm Re: post treatment blues In a message dated 12/29/02 12:19:58 AM !!!First Boot!!!, alleypat@... writes: > www.hepatitisneighborhood.com I searched for cryo and couldn't find anything. I guess you need the whole word to locate the meaning. Just tell me in your own words what it is. Thank you, Meghan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 Dear Gee, I will pray that you have good results from your tests. Please post when you get them. I feel so badly for you having to live with all that joint pain. Aren't you angry that the treatment that was meant to cure you , left you with so much pain? I had no idea that it would be so painful and take so long to recover. I don't know if I would have kept going had I known. I feel a little betrayed. I don't like living on pain medication. Meghan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 HI.Gosh Tat you give status to this group,it was you who put me on MSM and I.am sure,although I cannot proof it,that it got rid of most of my brainfog,apart from my erratic behaviour.What supplement do you have to take to combat this?.Or do I hve to see a shrink?.Liefs,Willem. Re: post treatment blues In a message dated 12/29/02 12:19:58 AM !!!First Boot!!!, alleypat@... writes: > www.hepatitisneighborhood.com I searched for cryo and couldn't find anything. I guess you need the whole word to locate the meaning. Just tell me in your own words what it is. Thank you, Meghan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 HI.Gosh Tat you give status to this group,it was you who put me on MSM and I.am sure,although I cannot proof it,that it got rid of most of my brainfog,apart from my erratic behaviour.What supplement do you have to take to combat this?.Or do I hve to see a shrink?.Liefs,Willem. Re: post treatment blues In a message dated 12/29/02 12:19:58 AM !!!First Boot!!!, alleypat@... writes: > www.hepatitisneighborhood.com I searched for cryo and couldn't find anything. I guess you need the whole word to locate the meaning. Just tell me in your own words what it is. Thank you, Meghan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 I'm not a good person to talk to right now, dear Willem. Someone flushed my life's toilet and I'm going down the drain fast. Re: post treatment blues In a message dated 12/29/02 12:19:58 AM !!!First Boot!!!, alleypat@... writes: > www.hepatitisneighborhood.com I searched for cryo and couldn't find anything. I guess you need the whole word to locate the meaning. Just tell me in your own words what it is. Thank you, Meghan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 I'm not a good person to talk to right now, dear Willem. Someone flushed my life's toilet and I'm going down the drain fast. Re: post treatment blues In a message dated 12/29/02 12:19:58 AM !!!First Boot!!!, alleypat@... writes: > www.hepatitisneighborhood.com I searched for cryo and couldn't find anything. I guess you need the whole word to locate the meaning. Just tell me in your own words what it is. Thank you, Meghan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 It's really frustrating isn't it....it's making me crazy (or should that be crazier)! Re: post treatment blues Dear Tat...my memory is worse now than when I was on treatment or pre-treatment....go figure. My mom says my memory is worse than hers and she's 80!!!!! She is sooooo right. I wondered too if it was due to the Hep in the brain , treatment, or a combo of everything. But I'm definitely much foggier than I used to be! Oh well...what was I saying???????????LOL! gee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 It's really frustrating isn't it....it's making me crazy (or should that be crazier)! Re: post treatment blues Dear Tat...my memory is worse now than when I was on treatment or pre-treatment....go figure. My mom says my memory is worse than hers and she's 80!!!!! She is sooooo right. I wondered too if it was due to the Hep in the brain , treatment, or a combo of everything. But I'm definitely much foggier than I used to be! Oh well...what was I saying???????????LOL! gee Quote Link to comment Share on other sites More sharing options...
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