Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Hi Cheri, Welcome to the group.. I want to answer your post in a little while as Im in the middle of laundy and your post will take me a few mins to answer fully.. Im so glad you found out group and I hope you will feel comfortable here.. Im glad you have some alternative things going on ,, Ill be back in a little while to answer,, Im sorry that I dont have the time at this min but I wanted to welcome you first !! hugs jax Cheri wrote: Hi, I'm Cheri and I just joined your group! I am 53 and have had hep C for about 30 years but this is the first time I have ever joined a hep C group. I have had autoimmune problems, fibromyalgia and fatigue, muscle weakness, nerve pain and shingles outbreaks since I was 18, predating the hep C by about 6 years.I am also very chemically sensitive and react to most medications, some herbs and lots of foods. I have never done the "treatment" since I am so afraid it will make me worse. My type is 1a. I had a biopsy done ten years ago and they said level 2, no cirrosis. My liver enzymes have never been elevated since that time (I had reduced the inflamation with glutithion and SAME supplements under the direction of an environmental MD) I take Eurocel to kill the virus and stay with the vitamins, glutithione, lipoic acid, etc. My viral level is around a million but it can go up to two million or down to 1/2...BUT a few years ago I developed type three mixed cryoglobulins and then began passing MEGA amounts of protien in my urine. A Kidney biopsy revealed that the kidney damage was NOT from the cryoglobulins but the type of damage done by hep C (among other things)...CD4 and CD8 were low too...well, my nephrologist and pcp are onto me to do "the treatment" and I am balking...(I think there is more going on then Hep C) ...so that is where I am at.Oh yeah, I'm a mom with three big kids (the youngest is 16) and a Hubby who has been here thru it all. I have been on total disability for 30 years from failed back surgery (when I recieved the tainted blood). I am often totally bedridden from my illness and weakness and deal constantly with severe pain. I have to be extremely careful of any meds I take, anything going thru the P450 detox part of the liver will send me into a horrible neuro attack (it is suspected I have an accute porphyria, which is a missing detox enzyme) So that is MY story. Any suggestions? advise? I'm open here to hearing your thoughts. Looking forward to meeting all of you!Hugs, CheriJackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Hi Cheri, Welcome to the Group, 30 years is a long time, I am sure sorry for all that you go through.. This is a good place to vent, though, I have done so quite often, and also have had most all of my questions answered.. You will find some nice, caring folks here, and hopefully some solace.. Take care.. Sheena Cheri wrote: Hi, I'm Cheri and I just joined your group! I am 53 and have had hep C for about 30 years but this is the first time I have ever joined a hep C group. I have had autoimmune problems, fibromyalgia and fatigue, muscle weakness, nerve pain and shingles outbreaks since I was 18, predating the hep C by about 6 years.I am also very chemically sensitive and react to most medications, some herbs and lots of foods. I have never done the "treatment" since I am so afraid it will make me worse. My type is 1a. I had a biopsy done ten years ago and they said level 2, no cirrosis. My liver enzymes have never been elevated since that time (I had reduced the inflamation with glutithion and SAME supplements under the direction of an environmental MD) I take Eurocel to kill the virus and stay with the vitamins, glutithione, lipoic acid, etc. My viral level is around a million but it can go up to two million or down to 1/2...BUT a few years ago I developed type three mixed cryoglobulins and then began passing MEGA amounts of protien in my urine. A Kidney biopsy revealed that the kidney damage was NOT from the cryoglobulins but the type of damage done by hep C (among other things)...CD4 and CD8 were low too...well, my nephrologist and pcp are onto me to do "the treatment" and I am balking...(I think there is more going on then Hep C) ...so that is where I am at.Oh yeah, I'm a mom with three big kids (the youngest is 16) and a Hubby who has been here thru it all. I have been on total disability for 30 years from failed back surgery (when I recieved the tainted blood). I am often totally bedridden from my illness and weakness and deal constantly with severe pain. I have to be extremely careful of any meds I take, anything going thru the P450 detox part of the liver will send me into a horrible neuro attack (it is suspected I have an accute porphyria, which is a missing detox enzyme) So that is MY story. Any suggestions? advise? I'm open here to hearing your thoughts. Looking forward to meeting all of you!Hugs, Cheri Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Thanks for the welcome, Jackie, I am looking forward to your post. Hugs, Cheri Hi, I'm Cheri and I just joined your group! I am 53 and have had hep C for about 30 years > but this is the first time I have ever joined a hep C group. I have had autoimmune > problems, fibromyalgia and fatigue, muscle weakness, nerve pain and shingles outbreaks > since I was 18, predating the hep C by about 6 years. > > I am also very chemically sensitive and react to most medications, some herbs and lots of > foods. I have never done the " treatment " since I am so afraid it will make me worse. My > type is 1a. I had a biopsy done ten years ago and they said level 2, no cirrosis. My liver > enzymes have never been elevated since that time (I had reduced the inflamation with > glutithion and SAME supplements under the direction of an environmental MD) I take > Eurocel to kill the virus and stay with the vitamins, glutithione, lipoic acid, etc. My viral > level is around a million but it can go up to two million or down to 1/2...BUT a few years > ago I developed type three mixed cryoglobulins and then began passing MEGA amounts of > protien in my urine. A Kidney biopsy revealed that the kidney damage was NOT from the > cryoglobulins but the type of damage done by hep C (among other things)...CD4 and CD8 > were low too...well, my nephrologist and pcp are onto me to do " the treatment " and I am > balking...(I think there is more going on then Hep C) ...so that is where I am at. > > Oh yeah, I'm a mom with three big kids (the youngest is 16) and a Hubby who has been > here thru it all. I have been on total disability for 30 years from failed back surgery (when > I recieved the tainted blood). I am often totally bedridden from my illness and weakness > and deal constantly with severe pain. I have to be extremely careful of any meds I take, > anything going thru the P450 detox part of the liver will send me into a horrible neuro > attack (it is suspected I have an accute porphyria, which is a missing detox enzyme) So > that is MY story. Any suggestions? advise? I'm open here to hearing your thoughts. > Looking forward to meeting all of you! > Hugs, Cheri > > > > > > > Jackie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Thank you, Sheena, I am looking forward to getting to know all of you. Yes, 30 years has been most of my adult life, I was diagnosed about 12 years ago when they started testing people. I have been lucky in that I have always practiced a healthy lifestyle and that has probably helped to slow down the progression. I have no clue how much my autoimmune stuff is related but I'm sure the hep C doesn't help matters. Hugs, Cheri > Hi, I'm Cheri and I just joined your group! I am 53 and have had hep C for about 30 years > but this is the first time I have ever joined a hep C group. I have had autoimmune > problems, fibromyalgia and fatigue, muscle weakness, nerve pain and shingles outbreaks > since I was 18, predating the hep C by about 6 years. > > I am also very chemically sensitive and react to most medications, some herbs and lots of > foods. I have never done the " treatment " since I am so afraid it will make me worse. My > type is 1a. I had a biopsy done ten years ago and they said level 2, no cirrosis. My liver > enzymes have never been elevated since that time (I had reduced the inflamation with > glutithion and SAME supplements under the direction of an environmental MD) I take > Eurocel to kill the virus and stay with the vitamins, glutithione, lipoic acid, etc. My viral > level is around a million but it can go up to two million or down to 1/2...BUT a few years > ago I developed type three mixed cryoglobulins and then began passing MEGA amounts of > protien in my urine. A Kidney biopsy revealed that the kidney damage was NOT from the > cryoglobulins but the type of damage done by hep C (among other things)...CD4 and CD8 > were low too...well, my nephrologist and pcp are onto me to do " the treatment " and I am > balking...(I think there is more going on then Hep C) ...so that is where I am at. > > Oh yeah, I'm a mom with three big kids (the youngest is 16) and a Hubby who has been > here thru it all. I have been on total disability for 30 years from failed back surgery (when > I recieved the tainted blood). I am often totally bedridden from my illness and weakness > and deal constantly with severe pain. I have to be extremely careful of any meds I take, > anything going thru the P450 detox part of the liver will send me into a horrible neuro > attack (it is suspected I have an accute porphyria, which is a missing detox enzyme) So > that is MY story. Any suggestions? advise? I'm open here to hearing your thoughts. > Looking forward to meeting all of you! > Hugs, Cheri > > > > > > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 Hi Cheri Im sorry it took me another day to get back to you.. We were out of power for 4 days from that wind storm that hit the west coast .. I had a lot of catchin up stuff to do yesterday,, still am not done yet.. but I dont want you to think I forgot you because I didnt.. I too have fibromyalgia and probably have had it since I was a child. The symptoms are so similar to Hcv that its hard to distinguish what is from what. I had to wait until after I was done with tx for 6 months before my doc sent me to a rheumatologist for diagnosis because we needed to make sure that the treatment meds were out of my system and we could be sure that they were not contributing to how I was feeling. I also have shingles and they are really a miserable thing to have to deal with, thats for sure.. Mine are on the right side of my face from my nose to my ear and inside my nasal cavities.. and it does affect my eyes. The eye doc's at UC diagnosed me with Sarcoidosis in my eye after tx caused this sarcoid membrane to grow over my retina twice and have had it removed twice .. this last time, it seems to have decided not to return again, thank God.. The Sarcoidosis was caused from the treatment for my hep. Interferon while a natural protein made by our bodies can, at higher doses cause all sorts of problems.. But the Fibro you have is NOT considered a contraindication for treatment for your hep and that is a very good thing.... Since you are 'chemically' sensitive, have you made sure that you have kept your body detoxified? I started using those Kinoki detox foot pads and I swear that above all the other things I have tried, these are the very thing that IS making a difference in how I feel. I've never gotten to the point where the pads remain white and it really seems that at some point, most of the gunk has to be removed but so far, after about 60 days of treating several days per week, Im still getting lots of gunk out.. but the reason I mention it is because these pads pull out all the bad chemicals we seem to find everywhere in our environment and they may in fact help you too. If you are interested in them, email me privately and Ill send you the url .. I truely thought they had to be whacky but I was really desperate to start to feel better and had tried just about everything else and was to the point where I really believed I was dying! I didnt tell everyone here about how badly I was feeling because I didnt want everyone to worry,, but I was desperate and had been unable to be out of bed for more than 2 or 3 hours per day.. now Im up to 5-8 hours per day so I feel that Im making progress... and NO,, I DO NOT SELL THEM.. so if anyone things Im 'selling' anything, Im not.. Please be careful with herbs too as Im sure you know just how dangerous some of them can be, especially for those of us with liver disease. Im very PRO- Alternative health care myself but some of the things that can be ok for everyone else are not ok for those of us with this liver disease.. so please be careful and make sure you run everything by your own physician. The problem with treatment is NOT knowing how it will make you feel,, and you are right to be concerned that it may make you worse. But.. you have to weigh the risks vs benefits and if your liver was a stage 2 ten years ago, it probably is stage 3 or more by now. You really do need to have another biopsy to see because if you are still a stage 2, then you know that you are doing things right so far.. I do know several others who have had this virus for more than 30 years and are still at stage 0-1 ! Did your biopsy give you a "grade" of inflammation? That would tell you how quickly its ruining your liver.. its usually graded as a 1 thru 4 also. If you have grade 0-1, then its moving slowly, but if you are like I was at grade 3, then its moving quickly and needs to be addressed. I know that you are very concerned about treating and because your kidneys are starting to be impacted, it IS something you have to face. We do have a member here who is on dialysis for his kidney failure and because of that, he cannot take the Ribavirin which is the antiviral so his chances of ever reaching SVR is greatly reduced. So it might make sense to treat before your kidneys are gone because then you would stand a better chance at this point, to be able to take the Ribavirin. Im not a chemically sensitive person but everything always reacted differently and almost backwards for me, I DO understand your concern about treatment.. When I was a young adult and went on birth control pills, everyone gained weight on them,, I lost 30 pounds and kept them off the entire time I was on them.. thats the kind of weird reaction I always had... When I started on tx, I really actually had a couple of weeks where I felt really GREAT! My constant body aches were gone! But as I got more and more anemic, I started to go downhill and then the body aches came back after I finished tx and I still have it today,, the fibro flares,, ugh, I know you know what Im talking about.. So now I take morphine 60 mg timed released in the am and 60 mg at night.. It only takes my body pain down to maybe a 5 now on that 1-10 pain scale so because I live in Calif, Im now using medical cannabis to make tea and that has really helped alot.. I dont seem to get high from it but it causes my 'perception' of my pain to be less.. I wont smoke it because I dont like the way it makes my chest feel and Im very afraid it might trigger my wanting to smoke cigarettes again ( I quit 24 years ago last dec 11),, so tea works for me.. When you take Morphine, it causes other problems too, like paralyzed bowel syndrome and needing to take laxatives,, and ongoing sleepiness that I take provigil to wake up .. but my hep is in remission and THAT was gonna kill me.. so Im very glad I treated because I had to,, If I'd only been a stage 1 or less, I wouldnt have treated IF I knew then what I know now.. I had a very busy life, I worked as a 911 paramedic, I taught the EMT class at the college and I worked all my off time in the salon doing hair and nails,, and now I have lost everything career wise, but Im still alive and my family is very grateful for that as am I. My brother died in 2001 so there is only me to take care of my parents who are getting older. well my mom is getting older, my father passed away sept 8... but I am very glad I was able to stay alive to help him during his kidney failure and his passing.. I guess the thing is, that you really do need to consider treatment if nothing else than to protect your kidneys if they are continuing to be harmed by the virus.. and I hope your doc will do a biopsy again soon to see just where you are.. Viral load is not really important and has no correlation to the amount of damage you have and can and does vary wildly. Viral load is very important when on treatment so that you will know whether or not treatment is working. They used to think that viral load indicated the amount of damage you have but they have since learned that it is only 'one' component and it is not consistent with how much damage one has.. Its a good thing that your liver enzymes have remained ok, that may indicate that what you are doing is helping your immune system to keep it in check.. Glutathione is very very important for your liver and taking the alpha lipoic acid itself converts to it,, that was a very smart thing you did in taking it and the other supplements you are taking.. Are you taking Milk Thistle ? MT is anti-inflammatory on the liver and is really good. There are many different kinds and brands of MT out there but you want to make sure the one you take is "Siliphos" bound as this formulation is 8-10 times more effective than simple silymarin.. Ill forward to you privately a very good article written by Dr. Murray who is one of the top renown Natropathic Docs in the Northwest. Its very long so I wont post it here but anyone else who wants to read it can email me and Ill forward it to them too. well thats all for now,, we're still trying to get things back in order after nearly a week of no power! take care and please feel free to ask any questions you have.. hugs jax Cheri wrote: Hi, I'm Cheri and I just joined your group! I am 53 and have had hep C for about 30 years but this is the first time I have ever joined a hep C group. I have had autoimmune problems, fibromyalgia and fatigue, muscle weakness, nerve pain and shingles outbreaks since I was 18, predating the hep C by about 6 years.I am also very chemically sensitive and react to most medications, some herbs and lots of foods. I have never done the "treatment" since I am so afraid it will make me worse. My type is 1a. I had a biopsy done ten years ago and they said level 2, no cirrosis. My liver enzymes have never been elevated since that time (I had reduced the inflamation with glutithion and SAME supplements under the direction of an environmental MD) I take Eurocel to kill the virus and stay with the vitamins, glutithione, lipoic acid, etc. My viral level is around a million but it can go up to two million or down to 1/2...BUT a few years ago I developed type three mixed cryoglobulins and then began passing MEGA amounts of protien in my urine. A Kidney biopsy revealed that the kidney damage was NOT from the cryoglobulins but the type of damage done by hep C (among other things)...CD4 and CD8 were low too...well, my nephrologist and pcp are onto me to do "the treatment" and I am balking...(I think there is more going on then Hep C) ...so that is where I am at.Oh yeah, I'm a mom with three big kids (the youngest is 16) and a Hubby who has been here thru it all. I have been on total disability for 30 years from failed back surgery (when I recieved the tainted blood). I am often totally bedridden from my illness and weakness and deal constantly with severe pain. I have to be extremely careful of any meds I take, anything going thru the P450 detox part of the liver will send me into a horrible neuro attack (it is suspected I have an accute porphyria, which is a missing detox enzyme) So that is MY story. Any suggestions? advise? I'm open here to hearing your thoughts. Looking forward to meeting all of you!Hugs, CheriJackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 Hi Cheri Im sorry it took me another day to get back to you.. We were out of power for 4 days from that wind storm that hit the west coast .. I had a lot of catchin up stuff to do yesterday,, still am not done yet.. but I dont want you to think I forgot you because I didnt.. I too have fibromyalgia and probably have had it since I was a child. The symptoms are so similar to Hcv that its hard to distinguish what is from what. I had to wait until after I was done with tx for 6 months before my doc sent me to a rheumatologist for diagnosis because we needed to make sure that the treatment meds were out of my system and we could be sure that they were not contributing to how I was feeling. I also have shingles and they are really a miserable thing to have to deal with, thats for sure.. Mine are on the right side of my face from my nose to my ear and inside my nasal cavities.. and it does affect my eyes. The eye doc's at UC diagnosed me with Sarcoidosis in my eye after tx caused this sarcoid membrane to grow over my retina twice and have had it removed twice .. this last time, it seems to have decided not to return again, thank God.. The Sarcoidosis was caused from the treatment for my hep. Interferon while a natural protein made by our bodies can, at higher doses cause all sorts of problems.. But the Fibro you have is NOT considered a contraindication for treatment for your hep and that is a very good thing.... Since you are 'chemically' sensitive, have you made sure that you have kept your body detoxified? I started using those Kinoki detox foot pads and I swear that above all the other things I have tried, these are the very thing that IS making a difference in how I feel. I've never gotten to the point where the pads remain white and it really seems that at some point, most of the gunk has to be removed but so far, after about 60 days of treating several days per week, Im still getting lots of gunk out.. but the reason I mention it is because these pads pull out all the bad chemicals we seem to find everywhere in our environment and they may in fact help you too. If you are interested in them, email me privately and Ill send you the url .. I truely thought they had to be whacky but I was really desperate to start to feel better and had tried just about everything else and was to the point where I really believed I was dying! I didnt tell everyone here about how badly I was feeling because I didnt want everyone to worry,, but I was desperate and had been unable to be out of bed for more than 2 or 3 hours per day.. now Im up to 5-8 hours per day so I feel that Im making progress... and NO,, I DO NOT SELL THEM.. so if anyone things Im 'selling' anything, Im not.. Please be careful with herbs too as Im sure you know just how dangerous some of them can be, especially for those of us with liver disease. Im very PRO- Alternative health care myself but some of the things that can be ok for everyone else are not ok for those of us with this liver disease.. so please be careful and make sure you run everything by your own physician. The problem with treatment is NOT knowing how it will make you feel,, and you are right to be concerned that it may make you worse. But.. you have to weigh the risks vs benefits and if your liver was a stage 2 ten years ago, it probably is stage 3 or more by now. You really do need to have another biopsy to see because if you are still a stage 2, then you know that you are doing things right so far.. I do know several others who have had this virus for more than 30 years and are still at stage 0-1 ! Did your biopsy give you a "grade" of inflammation? That would tell you how quickly its ruining your liver.. its usually graded as a 1 thru 4 also. If you have grade 0-1, then its moving slowly, but if you are like I was at grade 3, then its moving quickly and needs to be addressed. I know that you are very concerned about treating and because your kidneys are starting to be impacted, it IS something you have to face. We do have a member here who is on dialysis for his kidney failure and because of that, he cannot take the Ribavirin which is the antiviral so his chances of ever reaching SVR is greatly reduced. So it might make sense to treat before your kidneys are gone because then you would stand a better chance at this point, to be able to take the Ribavirin. Im not a chemically sensitive person but everything always reacted differently and almost backwards for me, I DO understand your concern about treatment.. When I was a young adult and went on birth control pills, everyone gained weight on them,, I lost 30 pounds and kept them off the entire time I was on them.. thats the kind of weird reaction I always had... When I started on tx, I really actually had a couple of weeks where I felt really GREAT! My constant body aches were gone! But as I got more and more anemic, I started to go downhill and then the body aches came back after I finished tx and I still have it today,, the fibro flares,, ugh, I know you know what Im talking about.. So now I take morphine 60 mg timed released in the am and 60 mg at night.. It only takes my body pain down to maybe a 5 now on that 1-10 pain scale so because I live in Calif, Im now using medical cannabis to make tea and that has really helped alot.. I dont seem to get high from it but it causes my 'perception' of my pain to be less.. I wont smoke it because I dont like the way it makes my chest feel and Im very afraid it might trigger my wanting to smoke cigarettes again ( I quit 24 years ago last dec 11),, so tea works for me.. When you take Morphine, it causes other problems too, like paralyzed bowel syndrome and needing to take laxatives,, and ongoing sleepiness that I take provigil to wake up .. but my hep is in remission and THAT was gonna kill me.. so Im very glad I treated because I had to,, If I'd only been a stage 1 or less, I wouldnt have treated IF I knew then what I know now.. I had a very busy life, I worked as a 911 paramedic, I taught the EMT class at the college and I worked all my off time in the salon doing hair and nails,, and now I have lost everything career wise, but Im still alive and my family is very grateful for that as am I. My brother died in 2001 so there is only me to take care of my parents who are getting older. well my mom is getting older, my father passed away sept 8... but I am very glad I was able to stay alive to help him during his kidney failure and his passing.. I guess the thing is, that you really do need to consider treatment if nothing else than to protect your kidneys if they are continuing to be harmed by the virus.. and I hope your doc will do a biopsy again soon to see just where you are.. Viral load is not really important and has no correlation to the amount of damage you have and can and does vary wildly. Viral load is very important when on treatment so that you will know whether or not treatment is working. They used to think that viral load indicated the amount of damage you have but they have since learned that it is only 'one' component and it is not consistent with how much damage one has.. Its a good thing that your liver enzymes have remained ok, that may indicate that what you are doing is helping your immune system to keep it in check.. Glutathione is very very important for your liver and taking the alpha lipoic acid itself converts to it,, that was a very smart thing you did in taking it and the other supplements you are taking.. Are you taking Milk Thistle ? MT is anti-inflammatory on the liver and is really good. There are many different kinds and brands of MT out there but you want to make sure the one you take is "Siliphos" bound as this formulation is 8-10 times more effective than simple silymarin.. Ill forward to you privately a very good article written by Dr. Murray who is one of the top renown Natropathic Docs in the Northwest. Its very long so I wont post it here but anyone else who wants to read it can email me and Ill forward it to them too. well thats all for now,, we're still trying to get things back in order after nearly a week of no power! take care and please feel free to ask any questions you have.. hugs jax Cheri wrote: Hi, I'm Cheri and I just joined your group! I am 53 and have had hep C for about 30 years but this is the first time I have ever joined a hep C group. I have had autoimmune problems, fibromyalgia and fatigue, muscle weakness, nerve pain and shingles outbreaks since I was 18, predating the hep C by about 6 years.I am also very chemically sensitive and react to most medications, some herbs and lots of foods. I have never done the "treatment" since I am so afraid it will make me worse. My type is 1a. I had a biopsy done ten years ago and they said level 2, no cirrosis. My liver enzymes have never been elevated since that time (I had reduced the inflamation with glutithion and SAME supplements under the direction of an environmental MD) I take Eurocel to kill the virus and stay with the vitamins, glutithione, lipoic acid, etc. My viral level is around a million but it can go up to two million or down to 1/2...BUT a few years ago I developed type three mixed cryoglobulins and then began passing MEGA amounts of protien in my urine. A Kidney biopsy revealed that the kidney damage was NOT from the cryoglobulins but the type of damage done by hep C (among other things)...CD4 and CD8 were low too...well, my nephrologist and pcp are onto me to do "the treatment" and I am balking...(I think there is more going on then Hep C) ...so that is where I am at.Oh yeah, I'm a mom with three big kids (the youngest is 16) and a Hubby who has been here thru it all. I have been on total disability for 30 years from failed back surgery (when I recieved the tainted blood). I am often totally bedridden from my illness and weakness and deal constantly with severe pain. I have to be extremely careful of any meds I take, anything going thru the P450 detox part of the liver will send me into a horrible neuro attack (it is suspected I have an accute porphyria, which is a missing detox enzyme) So that is MY story. Any suggestions? advise? I'm open here to hearing your thoughts. Looking forward to meeting all of you!Hugs, CheriJackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 Hi Cheri Im sorry it took me another day to get back to you.. We were out of power for 4 days from that wind storm that hit the west coast .. I had a lot of catchin up stuff to do yesterday,, still am not done yet.. but I dont want you to think I forgot you because I didnt.. I too have fibromyalgia and probably have had it since I was a child. The symptoms are so similar to Hcv that its hard to distinguish what is from what. I had to wait until after I was done with tx for 6 months before my doc sent me to a rheumatologist for diagnosis because we needed to make sure that the treatment meds were out of my system and we could be sure that they were not contributing to how I was feeling. I also have shingles and they are really a miserable thing to have to deal with, thats for sure.. Mine are on the right side of my face from my nose to my ear and inside my nasal cavities.. and it does affect my eyes. The eye doc's at UC diagnosed me with Sarcoidosis in my eye after tx caused this sarcoid membrane to grow over my retina twice and have had it removed twice .. this last time, it seems to have decided not to return again, thank God.. The Sarcoidosis was caused from the treatment for my hep. Interferon while a natural protein made by our bodies can, at higher doses cause all sorts of problems.. But the Fibro you have is NOT considered a contraindication for treatment for your hep and that is a very good thing.... Since you are 'chemically' sensitive, have you made sure that you have kept your body detoxified? I started using those Kinoki detox foot pads and I swear that above all the other things I have tried, these are the very thing that IS making a difference in how I feel. I've never gotten to the point where the pads remain white and it really seems that at some point, most of the gunk has to be removed but so far, after about 60 days of treating several days per week, Im still getting lots of gunk out.. but the reason I mention it is because these pads pull out all the bad chemicals we seem to find everywhere in our environment and they may in fact help you too. If you are interested in them, email me privately and Ill send you the url .. I truely thought they had to be whacky but I was really desperate to start to feel better and had tried just about everything else and was to the point where I really believed I was dying! I didnt tell everyone here about how badly I was feeling because I didnt want everyone to worry,, but I was desperate and had been unable to be out of bed for more than 2 or 3 hours per day.. now Im up to 5-8 hours per day so I feel that Im making progress... and NO,, I DO NOT SELL THEM.. so if anyone things Im 'selling' anything, Im not.. Please be careful with herbs too as Im sure you know just how dangerous some of them can be, especially for those of us with liver disease. Im very PRO- Alternative health care myself but some of the things that can be ok for everyone else are not ok for those of us with this liver disease.. so please be careful and make sure you run everything by your own physician. The problem with treatment is NOT knowing how it will make you feel,, and you are right to be concerned that it may make you worse. But.. you have to weigh the risks vs benefits and if your liver was a stage 2 ten years ago, it probably is stage 3 or more by now. You really do need to have another biopsy to see because if you are still a stage 2, then you know that you are doing things right so far.. I do know several others who have had this virus for more than 30 years and are still at stage 0-1 ! Did your biopsy give you a "grade" of inflammation? That would tell you how quickly its ruining your liver.. its usually graded as a 1 thru 4 also. If you have grade 0-1, then its moving slowly, but if you are like I was at grade 3, then its moving quickly and needs to be addressed. I know that you are very concerned about treating and because your kidneys are starting to be impacted, it IS something you have to face. We do have a member here who is on dialysis for his kidney failure and because of that, he cannot take the Ribavirin which is the antiviral so his chances of ever reaching SVR is greatly reduced. So it might make sense to treat before your kidneys are gone because then you would stand a better chance at this point, to be able to take the Ribavirin. Im not a chemically sensitive person but everything always reacted differently and almost backwards for me, I DO understand your concern about treatment.. When I was a young adult and went on birth control pills, everyone gained weight on them,, I lost 30 pounds and kept them off the entire time I was on them.. thats the kind of weird reaction I always had... When I started on tx, I really actually had a couple of weeks where I felt really GREAT! My constant body aches were gone! But as I got more and more anemic, I started to go downhill and then the body aches came back after I finished tx and I still have it today,, the fibro flares,, ugh, I know you know what Im talking about.. So now I take morphine 60 mg timed released in the am and 60 mg at night.. It only takes my body pain down to maybe a 5 now on that 1-10 pain scale so because I live in Calif, Im now using medical cannabis to make tea and that has really helped alot.. I dont seem to get high from it but it causes my 'perception' of my pain to be less.. I wont smoke it because I dont like the way it makes my chest feel and Im very afraid it might trigger my wanting to smoke cigarettes again ( I quit 24 years ago last dec 11),, so tea works for me.. When you take Morphine, it causes other problems too, like paralyzed bowel syndrome and needing to take laxatives,, and ongoing sleepiness that I take provigil to wake up .. but my hep is in remission and THAT was gonna kill me.. so Im very glad I treated because I had to,, If I'd only been a stage 1 or less, I wouldnt have treated IF I knew then what I know now.. I had a very busy life, I worked as a 911 paramedic, I taught the EMT class at the college and I worked all my off time in the salon doing hair and nails,, and now I have lost everything career wise, but Im still alive and my family is very grateful for that as am I. My brother died in 2001 so there is only me to take care of my parents who are getting older. well my mom is getting older, my father passed away sept 8... but I am very glad I was able to stay alive to help him during his kidney failure and his passing.. I guess the thing is, that you really do need to consider treatment if nothing else than to protect your kidneys if they are continuing to be harmed by the virus.. and I hope your doc will do a biopsy again soon to see just where you are.. Viral load is not really important and has no correlation to the amount of damage you have and can and does vary wildly. Viral load is very important when on treatment so that you will know whether or not treatment is working. They used to think that viral load indicated the amount of damage you have but they have since learned that it is only 'one' component and it is not consistent with how much damage one has.. Its a good thing that your liver enzymes have remained ok, that may indicate that what you are doing is helping your immune system to keep it in check.. Glutathione is very very important for your liver and taking the alpha lipoic acid itself converts to it,, that was a very smart thing you did in taking it and the other supplements you are taking.. Are you taking Milk Thistle ? MT is anti-inflammatory on the liver and is really good. There are many different kinds and brands of MT out there but you want to make sure the one you take is "Siliphos" bound as this formulation is 8-10 times more effective than simple silymarin.. Ill forward to you privately a very good article written by Dr. Murray who is one of the top renown Natropathic Docs in the Northwest. Its very long so I wont post it here but anyone else who wants to read it can email me and Ill forward it to them too. well thats all for now,, we're still trying to get things back in order after nearly a week of no power! take care and please feel free to ask any questions you have.. hugs jax Cheri wrote: Hi, I'm Cheri and I just joined your group! I am 53 and have had hep C for about 30 years but this is the first time I have ever joined a hep C group. I have had autoimmune problems, fibromyalgia and fatigue, muscle weakness, nerve pain and shingles outbreaks since I was 18, predating the hep C by about 6 years.I am also very chemically sensitive and react to most medications, some herbs and lots of foods. I have never done the "treatment" since I am so afraid it will make me worse. My type is 1a. I had a biopsy done ten years ago and they said level 2, no cirrosis. My liver enzymes have never been elevated since that time (I had reduced the inflamation with glutithion and SAME supplements under the direction of an environmental MD) I take Eurocel to kill the virus and stay with the vitamins, glutithione, lipoic acid, etc. My viral level is around a million but it can go up to two million or down to 1/2...BUT a few years ago I developed type three mixed cryoglobulins and then began passing MEGA amounts of protien in my urine. A Kidney biopsy revealed that the kidney damage was NOT from the cryoglobulins but the type of damage done by hep C (among other things)...CD4 and CD8 were low too...well, my nephrologist and pcp are onto me to do "the treatment" and I am balking...(I think there is more going on then Hep C) ...so that is where I am at.Oh yeah, I'm a mom with three big kids (the youngest is 16) and a Hubby who has been here thru it all. I have been on total disability for 30 years from failed back surgery (when I recieved the tainted blood). I am often totally bedridden from my illness and weakness and deal constantly with severe pain. I have to be extremely careful of any meds I take, anything going thru the P450 detox part of the liver will send me into a horrible neuro attack (it is suspected I have an accute porphyria, which is a missing detox enzyme) So that is MY story. Any suggestions? advise? I'm open here to hearing your thoughts. Looking forward to meeting all of you!Hugs, CheriJackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 Hi Jackie, Thanks for the long reply and all the good information. I am sorry that you have been so sick since the treatment, hopefully the detox will continue to bring you back to a normal level. Try the glutithione/lipoic acid/taurine too! I have had such good improvement with it. I do take morphine too, when in serious pain, but have to use zofran and won't take it except to keep out of the er, although I've learned IV morphine does a much better job when things are that bad! I can't get REM sleep with morphine and that is so important with Fibro/CFS so I have started using an ativan at night for fibro and back pain. I have to be careful with any detox that moves heavy metals since I am very mercury toxic. Detoxing can send me into seizures. The foot pads sound interesting but I would need to know more about how it works. The glutithione/lipoic acid/taurine are excellent since they do not chelate thru the liver. I have seen studies where hep C virus has been cleared by raising the glutithione levels. Sounds too simple, huh? I'm going to give it a try. I get the shingles on the nerves going from my low back into my legs, its unreal torture. After a spinal tap about three years ago I reacted to the lidocaine injection with seizures and a horrible neuro attack and Rhabdomyolysis that landed me in bed for over a year. At that point the shingles began going up the spine into my head and left eye and ear. Needless to say I live on Valtrex and any backing off is met with seizures. Its nothing to play around with. Lately I have been able to cut the valtrex back to once a day, I think the glutithione is helping!!! I have wondered about the herpes/hep C connection. I probably rely more on nutrients then herbs, but there are a few herbs I can tolerate and they are life savers. I used to use olive leaf to control the Hep C virus but became very allergic to it, it makes my legs and chest hurt, which is very scarey. That is why I know use the EUROCEL, which is also very good at killing virus but causes nausea so I can only manage it about once a day instead of the recommended 3x. I use tumeric and fennel for stomach inflamation that I get whenever I drink cow's milk, its a bacterial thing. I switched to goat milk some years ago and it does not give me those problems. (you see how sensitive my immune system is!) I also use ginger, uva ursa, marshmellow. gravel root for kidneys. There are many herbs I can not handle, like licorace or valarian. No, I have never used milk thistle and since my liver enzymes have never been an issue I don't think it is needed. What do you think? I probably should get another biopsy but I get so sick from the anesthesia I am hesitant to rush into it. I'd be more worried if the enzymes were high. I guess the real question is if it would make a difference in my decission to use the combination tx and at this point I think I am more comfortable by using gentler treatments. I saw my nephrologist today and my kidneys have been stable for the past year, so at least it is not progressing rapidly. I am in stage 3 kidney failure, stage 5 being dialysis. I am concerned that Rivoviran would push my kidneys over the edge and I'm not going to chance it. My nephrologist said that people with hep C tend to be vitamin D deficient and is checking levels. It sounded very complicated but vit D is absorbed from sunlight but then has to go first thru the liver and then the kidneys. He also said stuff about the calcium and phosporus levels being connected but I don't really have a grip on what all he was talking about, lol. Jackie, again I want to thank you for taking the time to write such a long heartfelt reply and I am so sorry for all you have had to go through and give up but I am grateful to know I am not alone in this, it can be so overwhelming at times with all these other problems complicating things! You'd think having hep C would be enough! Glad your power is back and hope you have a restful night. Hugs, Cheri Hi, I'm Cheri and I just joined your group! I am 53 and have had hep C for about 30 years > but this is the first time I have ever joined a hep C group. I have had autoimmune > problems, fibromyalgia and fatigue, muscle weakness, nerve pain and shingles outbreaks > since I was 18, predating the hep C by about 6 years. > > I am also very chemically sensitive and react to most medications, some herbs and lots of > foods. I have never done the " treatment " since I am so afraid it will make me worse. My > type is 1a. I had a biopsy done ten years ago and they said level 2, no cirrosis. My liver > enzymes have never been elevated since that time (I had reduced the inflamation with > glutithion and SAME supplements under the direction of an environmental MD) I take > Eurocel to kill the virus and stay with the vitamins, glutithione, lipoic acid, etc. My viral > level is around a million but it can go up to two million or down to 1/2...BUT a few years > ago I developed type three mixed cryoglobulins and then began passing MEGA amounts of > protien in my urine. A Kidney biopsy revealed that the kidney damage was NOT from the > cryoglobulins but the type of damage done by hep C (among other things)...CD4 and CD8 > were low too...well, my nephrologist and pcp are onto me to do " the treatment " and I am > balking...(I think there is more going on then Hep C) ...so that is where I am at. > > Oh yeah, I'm a mom with three big kids (the youngest is 16) and a Hubby who has been > here thru it all. I have been on total disability for 30 years from failed back surgery (when > I recieved the tainted blood). I am often totally bedridden from my illness and weakness > and deal constantly with severe pain. I have to be extremely careful of any meds I take, > anything going thru the P450 detox part of the liver will send me into a horrible neuro > attack (it is suspected I have an accute porphyria, which is a missing detox enzyme) So > that is MY story. Any suggestions? advise? I'm open here to hearing your thoughts. > Looking forward to meeting all of you! > Hugs, Cheri > > > > > > > Jackie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2008 Report Share Posted April 2, 2008 Welcome, Tracey. So glad you found us and are here. ) With our son, it flared back up at puberty and I often wondered what roll that played in it. I wish I had REALLY learned about OCD to begin with. We relied on doctors to steer us in the right direction, not realizing that most, really don't know. We also assumed therapists knew what they were doing. After all, they told us they did. . .But, they didn't. We spent years going to and paying therapists, for NO help at all. If you haven't already been doing some reading, some good books are: What to do when your Child has Obsessive-Compulsive Disorder by Aureen Pinto Wagner Ph.D. Freeing Your Child from Obsessive-Compulsive Disorder by Tamar E. Chansky Helping Your Child With Ocd: A Workbook for Parents of Children With Obsessive-Compulsive Disorder by Lee Fitzgibbons and Cherry Pedrick Talking Back to OCD by March The last two are workbooks that walk you through CBT and ERP Reading and learning about OCD is VERY helpful. Knowing what you are dealing with and treatments that work, will give you hope. We all need that. Some great places to look for therapists are at OCFoundation.org. You can search for people in your area. But, be prepared to interview them. We found not all listed there know what they are doing. You can also call anxiety clinics. They often treat OCD too. Try OCD support groups too. They often can steer you in the direction of therapists. But, once again. . Learn about what works (therapy wise) and interview the therapists to make sure they have treated it correctly and successfully. Many will speak to you over the phone, so you can find out if they are qualified before making your first appointment. Some in here have had good results with natural stuff. We tried some things and they didn't work for us, so we tried meds. The meds are working well enough for us. That along with the correct type of therapy has turned things around for us. One thing many have tried is Inositol. I'm hoping some who've had success with natural things will post and share what has worked for them. Hope this was helpful. Again, welcome. BJ > > My name is Tracey and I live in Chicago. We just found out our 14 > year old son has OCD. We are all still trying to digest this info but > I do have a few questions. > > 1) Anyone else here have a child with OCD symptoms just surfacing at > puberty? > > 2) As we are just starting our journey - any advice as to things you > wish you had done or not done when you first found out? > > 3) Has anyone had luck decreasing symptoms by changing diet or using > holistic approaches? > > Anyone know a good Cognitive Behavioral Therapist in the Chicago Area? > > Thank you for your time. > > Tracey > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2008 Report Share Posted April 3, 2008 Tracey, 1)Yes, my son's OCD also surfaced at 14 - although in retrospect, I suppose their were little oddities along the way beforehand. N is going to be 15 in June and is having a slow puberty - finally growing though. Its tough being a short basketball player! 2)Wish I had started hunting for a qualified therapist to to CBT 3 months before we actually did. 3) found that Omega 3 really does help with mood. Get the little children's chewable ones - they don't taste as fowl and are small if you want them to be swallowed. N takes 4 a day. Joyce in Seattle -------------- Original message ---------------------- > My name is Tracey and I live in Chicago. We just found out our 14 > year old son has OCD. We are all still trying to digest this info but > I do have a few questions. > > 1) Anyone else here have a child with OCD symptoms just surfacing at > puberty? > > 2) As we are just starting our journey - any advice as to things you > wish you had done or not done when you first found out? > > 3) Has anyone had luck decreasing symptoms by changing diet or using > holistic approaches? > > Anyone know a good Cognitive Behavioral Therapist in the Chicago Area? > > Thank you for your time. > > Tracey > > > > ------------------------------------ > > Our list archives,links, and files features may be accessed at: > http://health.groups.yahoo.com/group// . > Our list advisors are Gail B. , Ed.D.(http://www.ocdawareness.com ), Tamar > Chansky, Ph.D.( http://www.worrywisekids.org ), Dan Geller, M.D. > (http://massgeneral.org/pediatricpsych/staff/geller.html ),Aureen Pinto Wagner, > Ph.D., ( http://www.lighthouse-press.com ). Our list moderators are Chris > Castle, Judy Chabot, BJ Closner, and Barb Nesrallah. Subscription issues or > suggestions may be addressed to Louis Harkins, list administrator, at > louisharkins@... or louisharkins@... . > > Quote Link to comment Share on other sites More sharing options...
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