Guest guest Posted January 26, 2008 Report Share Posted January 26, 2008 Hi Steve Oh Im sorry that you didnt make SVR hon,, I didnt know,, but Im so very glad to hear from you and to know that you're still here with us! I hope to hear from you again soon,, you take care, hugs, jax steve brewer wrote: I still read most of the posts. Update on me, I did the TX for 4 months, my viral load slowly went down to 23 then started going back up so the doc took me off the stuff. I'm genotype 1a so I knew there was only a 40% chance. Back to square one. I wish everyone Hope and Good will. Steve Brewer redjaxjm <redjaxjm> wrote: Hi everyone,,There are several folks we havent seen in awhile so Im just asking ya all to drop a line and let us all know how you are doing... So would you all do that??? thanksjax Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2008 Report Share Posted January 26, 2008 Hi Steve Oh Im sorry that you didnt make SVR hon,, I didnt know,, but Im so very glad to hear from you and to know that you're still here with us! I hope to hear from you again soon,, you take care, hugs, jax steve brewer wrote: I still read most of the posts. Update on me, I did the TX for 4 months, my viral load slowly went down to 23 then started going back up so the doc took me off the stuff. I'm genotype 1a so I knew there was only a 40% chance. Back to square one. I wish everyone Hope and Good will. Steve Brewer redjaxjm <redjaxjm> wrote: Hi everyone,,There are several folks we havent seen in awhile so Im just asking ya all to drop a line and let us all know how you are doing... So would you all do that??? thanksjax Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2008 Report Share Posted January 26, 2008 Haven't heard from since October, i do hope she is doing well. Jackie on wrote: Thanks Sheena,, YOU are here, and I appreciate that,, I know WE ALL do!!! There are some of us who havent checked in for maybe 6 mo to a year,, and I've been wondering about them all,,, Annita, Edd, , are just a couple of names who come to mind immediately, so Im just asking that everyone who read this that hasnt been in for awhile, to check in and let us know you are alright! You take care of that fur baby!!! Im so jealous! Sheena <mom4possums2002> wrote: I'm here, but I have a new fur baby, been busy! I do check several times a day to see what needs doing.. Hugs To All, Sheena redjaxjm <redjaxjm> wrote: Hi everyone,,There are several folks we havent seen in awhile so Im just asking ya all to drop a line and let us all know how you are doing... So would you all do that??? thanksjax Looking for last minute shopping deals? Find them fast with Yahoo! Search. Jackie 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 26, 2008 Report Share Posted January 26, 2008 Haven't heard from since October, i do hope she is doing well. Jackie on wrote: Thanks Sheena,, YOU are here, and I appreciate that,, I know WE ALL do!!! There are some of us who havent checked in for maybe 6 mo to a year,, and I've been wondering about them all,,, Annita, Edd, , are just a couple of names who come to mind immediately, so Im just asking that everyone who read this that hasnt been in for awhile, to check in and let us know you are alright! You take care of that fur baby!!! Im so jealous! Sheena <mom4possums2002> wrote: I'm here, but I have a new fur baby, been busy! I do check several times a day to see what needs doing.. Hugs To All, Sheena redjaxjm <redjaxjm> wrote: Hi everyone,,There are several folks we havent seen in awhile so Im just asking ya all to drop a line and let us all know how you are doing... So would you all do that??? thanksjax Looking for last minute shopping deals? Find them fast with Yahoo! Search. Jackie 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 26, 2008 Report Share Posted January 26, 2008 Luke is an orphaned baby Opossum, really strange time of the year. Baby season starts in March here.. m human wrote: I love that !! By fur baby I assume you mean puppy?Sheena <mom4possums2002> wrote: I'm here, but I have a new fur baby, been busy! I do check several times a day to see what needs doing.. Hugs To All, Sheena redjaxjm <redjaxjm> wrote: Hi everyone,,There are several folks we havent seen in awhile so Im just asking ya all to drop a line and let us all know how you are doing... So would you all do that??? thanksjax Looking for last minute shopping deals? Find them fast with Yahoo! Search. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2008 Report Share Posted January 26, 2008 Luke is an orphaned baby Opossum, really strange time of the year. Baby season starts in March here.. m human wrote: I love that !! By fur baby I assume you mean puppy?Sheena <mom4possums2002> wrote: I'm here, but I have a new fur baby, been busy! I do check several times a day to see what needs doing.. Hugs To All, Sheena redjaxjm <redjaxjm> wrote: Hi everyone,,There are several folks we havent seen in awhile so Im just asking ya all to drop a line and let us all know how you are doing... So would you all do that??? thanksjax Looking for last minute shopping deals? Find them fast with Yahoo! Search. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2008 Report Share Posted January 26, 2008 I hope she is ok too,, it seems like a long time since we've heard anything from her,, but with getting married etc,, she was the one who was getting married,, right? lol,, I get ppl confused sometimes,, oh thank you interferon! lol Sheena wrote: Haven't heard from since October, i do hope she is doing well. Jackie on <redjaxjm> wrote: Thanks Sheena,, YOU are here, and I appreciate that,, I know WE ALL do!!! There are some of us who havent checked in for maybe 6 mo to a year,, and I've been wondering about them all,,, Annita, Edd, , are just a couple of names who come to mind immediately, so Im just asking that everyone who read this that hasnt been in for awhile, to check in and let us know you are alright! You take care of that fur baby!!! Im so jealous! Sheena <mom4possums2002> wrote: I'm here, but I have a new fur baby, been busy! I do check several times a day to see what needs doing.. Hugs To All, Sheena redjaxjm <redjaxjm> wrote: Hi everyone,,There are several folks we havent seen in awhile so Im just asking ya all to drop a line and let us all know how you are doing... So would you all do that??? thanksjax Looking for last minute shopping deals? Find them fast with Yahoo! Search. Jackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2008 Report Share Posted January 26, 2008 I hope she is ok too,, it seems like a long time since we've heard anything from her,, but with getting married etc,, she was the one who was getting married,, right? lol,, I get ppl confused sometimes,, oh thank you interferon! lol Sheena wrote: Haven't heard from since October, i do hope she is doing well. Jackie on <redjaxjm> wrote: Thanks Sheena,, YOU are here, and I appreciate that,, I know WE ALL do!!! There are some of us who havent checked in for maybe 6 mo to a year,, and I've been wondering about them all,,, Annita, Edd, , are just a couple of names who come to mind immediately, so Im just asking that everyone who read this that hasnt been in for awhile, to check in and let us know you are alright! You take care of that fur baby!!! Im so jealous! Sheena <mom4possums2002> wrote: I'm here, but I have a new fur baby, been busy! I do check several times a day to see what needs doing.. Hugs To All, Sheena redjaxjm <redjaxjm> wrote: Hi everyone,,There are several folks we havent seen in awhile so Im just asking ya all to drop a line and let us all know how you are doing... So would you all do that??? thanksjax Looking for last minute shopping deals? Find them fast with Yahoo! Search. Jackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 Hi ya'll, Still around and have been for a long time...lurking and posting at times. I definitely depend on you guys whether you know it or not. My hubby prefers denial so support only comes from the web.... Had HepC since 1988 blood transfusions for thrombotic thrombocytopenic purpura (TTP). Opted to have my spleen removed after the 3rd relapse...wondering if that was a bad idea. Have Fibro/CFS/Myofacial syndrome, slow clotting, excess iron in liver, C Reactive positive, Epstein-Barr positive, ANA positive, cryo positive...and the list goes on. Currently on SSID at the ripe old age of 43 (almost 43). I have a 12 year old that is full of energy...mom is not! Haven't seen my gastro in 5 years...internist always tests liver enzymes which have remained in the normal level for the most part. I did 48 weeks of treatment when Ribivarin was in its last testing stage...no SVR. Doctor at that time didn't do counts, not even typing it (1a or 1b) so I have no idea if it ever did anything. Tried treatment 2 more times but the psychiatric effects were too much. Bipolar for a long time so I had the drugs to treat the psyche...just too much to deal with. Soooo...I hate doctors!! I believe I have symptoms getting worse for thyroid and Cryo and possibly Kidneys. I gained twenty pounds in two months, dry skin, hair falling out, abdomen swelling up...but any doc I go to knows NOTHING...and doesn't have or take the time to investigate what these symptoms could be. Thyroid tests in the past, low normal, so they won't treat. Have had cysts on thyroid and ovaries that come and go. None of the docs even know what Cryo is...how can that be? It can cause many problems from what I read. I'm just at my wits end with trying to figure out what is causing what...and the docs, if they take medicare, are hard to find and the average 8 minutes they spend with you wouldn't even be enough time to go over all of the test results I bring in from the past. Sooooo...I lurk. I would love to hear about people's dealings with this Cryo. Thyroid too...acites, etc. I could use that help from you guys right now. Thanks to you all again!!! > > Hi everyone,, > There are several folks we havent seen in awhile so Im just asking ya > all to drop a line and let us all know how you are doing... So would > you all do that??? > thanks > jax > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 Hi , thanks for checking in and Im so very sorry about all the ongoing troubles you seem to be having! You surely DO need to find a new doc, sounds like you're having trouble getting tests and care from the ones you have seen so far. If you tell us where you live, city and state, perhaps we might be able to find you a different doc,,, we have members from most of the states so maybe that would be the best place to start,, finding a new doc! sheesh!!!! Well keep in touch and let us know if there is anything we can do and if you tell us where you live , perhaps we can help you find a better doc! hugs jax bulldoggergal wrote: Hi ya'll,Still around and have been for a long time...lurking and posting at times. I definitely depend on you guys whether you know it or not. My hubby prefers denial so support only comes from the web....Had HepC since 1988 blood transfusions for thrombotic thrombocytopenic purpura (TTP). Opted to have my spleen removed after the 3rd relapse...wondering if that was a bad idea. Have Fibro/CFS/Myofacial syndrome, slow clotting, excess iron in liver, C Reactive positive, Epstein-Barr positive, ANA positive, cryo positive...and the list goes on. Currently on SSID at the ripe old age of 43 (almost 43). I have a 12 year old that is full of energy...mom is not! Haven't seen my gastro in 5 years...internist always tests liver enzymes which have remained in the normal level for the most part. I did 48 weeks of treatment when Ribivarin was in its last testing stage...no SVR. Doctor at that time didn't do counts, not even typing it (1a or 1b) so I have no idea if it ever did anything. Tried treatment 2 more times but the psychiatric effects were too much. Bipolar for a long time so I had the drugs to treat the psyche...just too much to deal with.Soooo...I hate doctors!! I believe I have symptoms getting worse for thyroid and Cryo and possibly Kidneys. I gained twenty pounds in two months, dry skin, hair falling out, abdomen swelling up...but any doc I go to knows NOTHING...and doesn't have or take the time to investigate what these symptoms could be.Thyroid tests in the past, low normal, so they won't treat. Have had cysts on thyroid and ovaries that come and go. None of the docs even know what Cryo is...how can that be? It can cause many problems from what I read. I'm just at my wits end with trying to figure out what is causing what...and the docs, if they take medicare, are hard to find and the average 8 minutes they spend with you wouldn't even be enough time to go over all of the test results I bring in from the past.Sooooo...I lurk. I would love to hear about people's dealings with this Cryo. Thyroid too...acites, etc. I could use that help from you guys right now.Thanks to you all again!!! >> Hi everyone,,> There are several folks we havent seen in awhile so Im just asking ya > all to drop a line and let us all know how you are doing... So would > you all do that??? > thanks> jax>Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 Thank you! I live outside of Denton, Texas but I have access to Dallas, Frisco, Plano, McKinney.... Any suggestions for a liver doc or endocrinologist would be great. Also, any info or stories about the Cryo, Thyroid or Kidney issues related to the HepC would be much appreciated...it's kinda lonely in my brain right now... > > > > Hi everyone,, > > There are several folks we havent seen in awhile so Im just asking > ya > > all to drop a line and let us all know how you are doing... So > would > > you all do that??? > > thanks > > jax > > > > > > > > > Jackie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 Thank you! I live outside of Denton, Texas but I have access to Dallas, Frisco, Plano, McKinney.... Any suggestions for a liver doc or endocrinologist would be great. Also, any info or stories about the Cryo, Thyroid or Kidney issues related to the HepC would be much appreciated...it's kinda lonely in my brain right now... > > > > Hi everyone,, > > There are several folks we havent seen in awhile so Im just asking > ya > > all to drop a line and let us all know how you are doing... So > would > > you all do that??? > > thanks > > jax > > > > > > > > > Jackie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 Thank you! I live outside of Denton, Texas but I have access to Dallas, Frisco, Plano, McKinney.... Any suggestions for a liver doc or endocrinologist would be great. Also, any info or stories about the Cryo, Thyroid or Kidney issues related to the HepC would be much appreciated...it's kinda lonely in my brain right now... > > > > Hi everyone,, > > There are several folks we havent seen in awhile so Im just asking > ya > > all to drop a line and let us all know how you are doing... So > would > > you all do that??? > > thanks > > jax > > > > > > > > > Jackie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 ok, let me put my 'thinkin' cap on,, I have a friend in Austin who has treated successfully, Ill email her and see who she recommends,, she knows pretty much all the docs in Texas.. I'll get back to you! enjoy your sunday afternoon! hugs, jax bulldoggergal wrote: Thank you! I live outside of Denton, Texas but I have access to Dallas, Frisco, Plano, McKinney....Any suggestions for a liver doc or endocrinologist would be great. Also, any info or stories about the Cryo, Thyroid or Kidney issues related to the HepC would be much appreciated...it's kinda lonely in my brain right now...> >> > Hi everyone,,> > There are several folks we havent seen in awhile so Im just asking > ya > > all to drop a line and let us all know how you are doing... So > would > > you all do that??? > > thanks> > jax> >> > > > > > > Jackie>Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 ok, let me put my 'thinkin' cap on,, I have a friend in Austin who has treated successfully, Ill email her and see who she recommends,, she knows pretty much all the docs in Texas.. I'll get back to you! enjoy your sunday afternoon! hugs, jax bulldoggergal wrote: Thank you! I live outside of Denton, Texas but I have access to Dallas, Frisco, Plano, McKinney....Any suggestions for a liver doc or endocrinologist would be great. Also, any info or stories about the Cryo, Thyroid or Kidney issues related to the HepC would be much appreciated...it's kinda lonely in my brain right now...> >> > Hi everyone,,> > There are several folks we havent seen in awhile so Im just asking > ya > > all to drop a line and let us all know how you are doing... So > would > > you all do that??? > > thanks> > jax> >> > > > > > > Jackie>Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 ok, let me put my 'thinkin' cap on,, I have a friend in Austin who has treated successfully, Ill email her and see who she recommends,, she knows pretty much all the docs in Texas.. I'll get back to you! enjoy your sunday afternoon! hugs, jax bulldoggergal wrote: Thank you! I live outside of Denton, Texas but I have access to Dallas, Frisco, Plano, McKinney....Any suggestions for a liver doc or endocrinologist would be great. Also, any info or stories about the Cryo, Thyroid or Kidney issues related to the HepC would be much appreciated...it's kinda lonely in my brain right now...> >> > Hi everyone,,> > There are several folks we havent seen in awhile so Im just asking > ya > > all to drop a line and let us all know how you are doing... So > would > > you all do that??? > > thanks> > jax> >> > > > > > > Jackie>Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 I'll have a 'Sprouted/Sourdough-Rye' Kaiser roll please.... ;-) Things are as well as can be expected here lately. Dealing with being the sole caregiver for my Mom for over a year,..... Tiring for ANY-body, but, it's really been challenging for me. There just isn't enough time/energy to 'keep-up' the house,...etc. Finances are 'screwy' lately as well. We'll figure things out here,....sooner or later. Catcha all later-on-! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 > > Hi everyone,, > There are several folks we havent seen in awhile so Im just asking ya > all to drop a line and let us all know how you are doing... So would > you all do that??? > thanks > jax > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 > > Hi everyone,, > There are several folks we havent seen in awhile so Im just asking ya > all to drop a line and let us all know how you are doing... So would > you all do that??? > thanks > jax > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 I understand, . I was the one that found cryo on the internet and when I printed it out and brought it to my rheumatologist, he was very impressed and said I was very smart. He’s the only one that has barely acknowledged the condition. Either they have no clue or don’t really care to find out. My problems (at least those I know of) are limited to peripheral neuropathy in one leg and rheumatoid arthritis. I’ve also got some ophthalmic issues that are probably related as well. My estranged husband also has HCV and is now on kidney dialysis and I believe that he too has cryo that may be causing the ESRD. He had the typical red blotches on both feet and ankles for probably the last 20 years. When I finish tx at the end of February, I plan to attempt to find a doctor who may be willing to help. My rheumy is the smartest of the bunch of my specialists and is the only one who looks at ME as a whole person and not just the one disease or illness he treats. I am hoping he can direct me although I’m not certain what can be done. When my PN developed 2 years ago, there was some talk of doing treatments sort of like transfusions – for the life of me, I can’t remember exactly what it was called, but I’ve got information printed out in the carton of medical stuff going back to that time. My neurologist said they could have it set up so that I could do it at home and the doctor I saw at The Neurological Institute of NY at Columbia University said they would admit me to the hospital. I’m wondering now if this isn’t something I should be considering. I think I had pined all my hopes on “curing” the neuropathy with the tx of the HCV. Evidently, that’s not happening. My RA and PN have gotten worse, not better and my gastro said there’s no guarantee (like I would expect one from a doctor!) that they will improve. You obviously know the frustration of trying to find answers when there are so many things going on with your health. Same with me – when I don’t feel well, I don’t know if it’s the interferon, the riba, my RA, PN or any of the other medications I take. And if you are depending on Medicare, I feel for you. At least I have excellent health insurance that has allowed me to pretty much pick and chose my doctors. Maybe if we put our heads together………….we can beat them at their own game!!! LOL! Are “ya’ll” in the south??? I’m on Long Island, NY. Dorothy From: Hepatitis_C_Central [mailto:Hepatitis_C_Central ] On Behalf Of bulldoggergal Sent: Sunday, January 27, 2008 2:51 PM To: Hepatitis_C_Central Subject: Re: Roll Call?? Hi ya'll, Still around and have been for a long time...lurking and posting at times. I definitely depend on you guys whether you know it or not. My hubby prefers denial so support only comes from the web.... Had HepC since 1988 blood transfusions for thrombotic thrombocytopenic purpura (TTP). Opted to have my spleen removed after the 3rd relapse...wondering if that was a bad idea. Have Fibro/CFS/Myofacial syndrome, slow clotting, excess iron in liver, C Reactive positive, Epstein-Barr positive, ANA positive, cryo positive...and the list goes on. Currently on SSID at the ripe old age of 43 (almost 43). I have a 12 year old that is full of energy...mom is not! Haven't seen my gastro in 5 years...internist always tests liver enzymes which have remained in the normal level for the most part. I did 48 weeks of treatment when Ribivarin was in its last testing stage...no SVR. Doctor at that time didn't do counts, not even typing it (1a or 1b) so I have no idea if it ever did anything. Tried treatment 2 more times but the psychiatric effects were too much. Bipolar for a long time so I had the drugs to treat the psyche...just too much to deal with. Soooo...I hate doctors!! I believe I have symptoms getting worse for thyroid and Cryo and possibly Kidneys. I gained twenty pounds in two months, dry skin, hair falling out, abdomen swelling up...but any doc I go to knows NOTHING...and doesn't have or take the time to investigate what these symptoms could be. Thyroid tests in the past, low normal, so they won't treat. Have had cysts on thyroid and ovaries that come and go. None of the docs even know what Cryo is...how can that be? It can cause many problems from what I read. I'm just at my wits end with trying to figure out what is causing what...and the docs, if they take medicare, are hard to find and the average 8 minutes they spend with you wouldn't even be enough time to go over all of the test results I bring in from the past. Sooooo...I lurk. I would love to hear about people's dealings with this Cryo. Thyroid too...acites, etc. I could use that help from you guys right now. Thanks to you all again!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 I understand, . I was the one that found cryo on the internet and when I printed it out and brought it to my rheumatologist, he was very impressed and said I was very smart. He’s the only one that has barely acknowledged the condition. Either they have no clue or don’t really care to find out. My problems (at least those I know of) are limited to peripheral neuropathy in one leg and rheumatoid arthritis. I’ve also got some ophthalmic issues that are probably related as well. My estranged husband also has HCV and is now on kidney dialysis and I believe that he too has cryo that may be causing the ESRD. He had the typical red blotches on both feet and ankles for probably the last 20 years. When I finish tx at the end of February, I plan to attempt to find a doctor who may be willing to help. My rheumy is the smartest of the bunch of my specialists and is the only one who looks at ME as a whole person and not just the one disease or illness he treats. I am hoping he can direct me although I’m not certain what can be done. When my PN developed 2 years ago, there was some talk of doing treatments sort of like transfusions – for the life of me, I can’t remember exactly what it was called, but I’ve got information printed out in the carton of medical stuff going back to that time. My neurologist said they could have it set up so that I could do it at home and the doctor I saw at The Neurological Institute of NY at Columbia University said they would admit me to the hospital. I’m wondering now if this isn’t something I should be considering. I think I had pined all my hopes on “curing” the neuropathy with the tx of the HCV. Evidently, that’s not happening. My RA and PN have gotten worse, not better and my gastro said there’s no guarantee (like I would expect one from a doctor!) that they will improve. You obviously know the frustration of trying to find answers when there are so many things going on with your health. Same with me – when I don’t feel well, I don’t know if it’s the interferon, the riba, my RA, PN or any of the other medications I take. And if you are depending on Medicare, I feel for you. At least I have excellent health insurance that has allowed me to pretty much pick and chose my doctors. Maybe if we put our heads together………….we can beat them at their own game!!! LOL! Are “ya’ll” in the south??? I’m on Long Island, NY. Dorothy From: Hepatitis_C_Central [mailto:Hepatitis_C_Central ] On Behalf Of bulldoggergal Sent: Sunday, January 27, 2008 2:51 PM To: Hepatitis_C_Central Subject: Re: Roll Call?? Hi ya'll, Still around and have been for a long time...lurking and posting at times. I definitely depend on you guys whether you know it or not. My hubby prefers denial so support only comes from the web.... Had HepC since 1988 blood transfusions for thrombotic thrombocytopenic purpura (TTP). Opted to have my spleen removed after the 3rd relapse...wondering if that was a bad idea. Have Fibro/CFS/Myofacial syndrome, slow clotting, excess iron in liver, C Reactive positive, Epstein-Barr positive, ANA positive, cryo positive...and the list goes on. Currently on SSID at the ripe old age of 43 (almost 43). I have a 12 year old that is full of energy...mom is not! Haven't seen my gastro in 5 years...internist always tests liver enzymes which have remained in the normal level for the most part. I did 48 weeks of treatment when Ribivarin was in its last testing stage...no SVR. Doctor at that time didn't do counts, not even typing it (1a or 1b) so I have no idea if it ever did anything. Tried treatment 2 more times but the psychiatric effects were too much. Bipolar for a long time so I had the drugs to treat the psyche...just too much to deal with. Soooo...I hate doctors!! I believe I have symptoms getting worse for thyroid and Cryo and possibly Kidneys. I gained twenty pounds in two months, dry skin, hair falling out, abdomen swelling up...but any doc I go to knows NOTHING...and doesn't have or take the time to investigate what these symptoms could be. Thyroid tests in the past, low normal, so they won't treat. Have had cysts on thyroid and ovaries that come and go. None of the docs even know what Cryo is...how can that be? It can cause many problems from what I read. I'm just at my wits end with trying to figure out what is causing what...and the docs, if they take medicare, are hard to find and the average 8 minutes they spend with you wouldn't even be enough time to go over all of the test results I bring in from the past. Sooooo...I lurk. I would love to hear about people's dealings with this Cryo. Thyroid too...acites, etc. I could use that help from you guys right now. Thanks to you all again!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 I understand, . I was the one that found cryo on the internet and when I printed it out and brought it to my rheumatologist, he was very impressed and said I was very smart. He’s the only one that has barely acknowledged the condition. Either they have no clue or don’t really care to find out. My problems (at least those I know of) are limited to peripheral neuropathy in one leg and rheumatoid arthritis. I’ve also got some ophthalmic issues that are probably related as well. My estranged husband also has HCV and is now on kidney dialysis and I believe that he too has cryo that may be causing the ESRD. He had the typical red blotches on both feet and ankles for probably the last 20 years. When I finish tx at the end of February, I plan to attempt to find a doctor who may be willing to help. My rheumy is the smartest of the bunch of my specialists and is the only one who looks at ME as a whole person and not just the one disease or illness he treats. I am hoping he can direct me although I’m not certain what can be done. When my PN developed 2 years ago, there was some talk of doing treatments sort of like transfusions – for the life of me, I can’t remember exactly what it was called, but I’ve got information printed out in the carton of medical stuff going back to that time. My neurologist said they could have it set up so that I could do it at home and the doctor I saw at The Neurological Institute of NY at Columbia University said they would admit me to the hospital. I’m wondering now if this isn’t something I should be considering. I think I had pined all my hopes on “curing” the neuropathy with the tx of the HCV. Evidently, that’s not happening. My RA and PN have gotten worse, not better and my gastro said there’s no guarantee (like I would expect one from a doctor!) that they will improve. You obviously know the frustration of trying to find answers when there are so many things going on with your health. Same with me – when I don’t feel well, I don’t know if it’s the interferon, the riba, my RA, PN or any of the other medications I take. And if you are depending on Medicare, I feel for you. At least I have excellent health insurance that has allowed me to pretty much pick and chose my doctors. Maybe if we put our heads together………….we can beat them at their own game!!! LOL! Are “ya’ll” in the south??? I’m on Long Island, NY. Dorothy From: Hepatitis_C_Central [mailto:Hepatitis_C_Central ] On Behalf Of bulldoggergal Sent: Sunday, January 27, 2008 2:51 PM To: Hepatitis_C_Central Subject: Re: Roll Call?? Hi ya'll, Still around and have been for a long time...lurking and posting at times. I definitely depend on you guys whether you know it or not. My hubby prefers denial so support only comes from the web.... Had HepC since 1988 blood transfusions for thrombotic thrombocytopenic purpura (TTP). Opted to have my spleen removed after the 3rd relapse...wondering if that was a bad idea. Have Fibro/CFS/Myofacial syndrome, slow clotting, excess iron in liver, C Reactive positive, Epstein-Barr positive, ANA positive, cryo positive...and the list goes on. Currently on SSID at the ripe old age of 43 (almost 43). I have a 12 year old that is full of energy...mom is not! Haven't seen my gastro in 5 years...internist always tests liver enzymes which have remained in the normal level for the most part. I did 48 weeks of treatment when Ribivarin was in its last testing stage...no SVR. Doctor at that time didn't do counts, not even typing it (1a or 1b) so I have no idea if it ever did anything. Tried treatment 2 more times but the psychiatric effects were too much. Bipolar for a long time so I had the drugs to treat the psyche...just too much to deal with. Soooo...I hate doctors!! I believe I have symptoms getting worse for thyroid and Cryo and possibly Kidneys. I gained twenty pounds in two months, dry skin, hair falling out, abdomen swelling up...but any doc I go to knows NOTHING...and doesn't have or take the time to investigate what these symptoms could be. Thyroid tests in the past, low normal, so they won't treat. Have had cysts on thyroid and ovaries that come and go. None of the docs even know what Cryo is...how can that be? It can cause many problems from what I read. I'm just at my wits end with trying to figure out what is causing what...and the docs, if they take medicare, are hard to find and the average 8 minutes they spend with you wouldn't even be enough time to go over all of the test results I bring in from the past. Sooooo...I lurk. I would love to hear about people's dealings with this Cryo. Thyroid too...acites, etc. I could use that help from you guys right now. Thanks to you all again!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 Are you talking about "Plasmaphoresis" for the cryo? I have a very dear friend who has had that , said it helps some,, but is not a cure by any means.. Dorothy wrote: I understand, . I was the one that found cryo on the internet and when I printed it out and brought it to my rheumatologist, he was very impressed and said I was very smart. He’s the only one that has barely acknowledged the condition. Either they have no clue or don’t really care to find out. My problems (at least those I know of) are limited to peripheral neuropathy in one leg and rheumatoid arthritis. I’ve also got some ophthalmic issues that are probably related as well. My estranged husband also has HCV and is now on kidney dialysis and I believe that he too has cryo that may be causing the ESRD. He had the typical red blotches on both feet and ankles for probably the last 20 years. When I finish tx at the end of February, I plan to attempt to find a doctor who may be willing to help. My rheumy is the smartest of the bunch of my specialists and is the only one who looks at ME as a whole person and not just the one disease or illness he treats. I am hoping he can direct me although I’m not certain what can be done. When my PN developed 2 years ago, there was some talk of doing treatments sort of like transfusions – for the life of me, I can’t remember exactly what it was called, but I’ve got information printed out in the carton of medical stuff going back to that time. My neurologist said they could have it set up so that I could do it at home and the doctor I saw at The Neurological Institute of NY at Columbia University said they would admit me to the hospital. I’m wondering now if this isn’t something I should be considering. I think I had pined all my hopes on “curing” the neuropathy with the tx of the HCV. Evidently, that’s not happening. My RA and PN have gotten worse, not better and my gastro said there’s no guarantee (like I would expect one from a doctor!) that they will improve. You obviously know the frustration of trying to find answers when there are so many things going on with your health. Same with me – when I don’t feel well, I don’t know if it’s the interferon, the riba, my RA, PN or any of the other medications I take. And if you are depending on Medicare, I feel for you. At least I have excellent health insurance that has allowed me to pretty much pick and chose my doctors. Maybe if we put our heads together………….we can beat them at their own game!!! LOL! Are “ya’ll” in the south??? I’m on Long Island, NY. Dorothy From: Hepatitis_C_Central [mailto:Hepatitis_C_Central ] On Behalf Of bulldoggergalSent: Sunday, January 27, 2008 2:51 PMTo: Hepatitis_C_Central Subject: Re: Roll Call?? Hi ya'll,Still around and have been for a long time...lurking and posting at times. I definitely depend on you guys whether you know it or not. My hubby prefers denial so support only comes from the web....Had HepC since 1988 blood transfusions for thrombotic thrombocytopenic purpura (TTP). Opted to have my spleen removed after the 3rd relapse...wondering if that was a bad idea. Have Fibro/CFS/Myofacial syndrome, slow clotting, excess iron in liver, C Reactive positive, Epstein-Barr positive, ANA positive, cryo positive...and the list goes on. Currently on SSID at the ripe old age of 43 (almost 43). I have a 12 year old that is full of energy...mom is not! Haven't seen my gastro in 5 years...internist always tests liver enzymes which have remained in the normal level for the most part. I did 48 weeks of treatment when Ribivarin was in its last testing stage...no SVR. Doctor at that time didn't do counts, not even typing it (1a or 1b) so I have no idea if it ever did anything. Tried treatment 2 more times but the psychiatric effects were too much. Bipolar for a long time so I had the drugs to treat the psyche...just too much to deal with.Soooo...I hate doctors!! I believe I have symptoms getting worse for thyroid and Cryo and possibly Kidneys. I gained twenty pounds in two months, dry skin, hair falling out, abdomen swelling up...but any doc I go to knows NOTHING...and doesn't have or take the time to investigate what these symptoms could be.Thyroid tests in the past, low normal, so they won't treat. Have had cysts on thyroid and ovaries that come and go. None of the docs even know what Cryo is...how can that be? It can cause many problems from what I read. I'm just at my wits end with trying to figure out what is causing what...and the docs, if they take medicare, are hard to find and the average 8 minutes they spend with you wouldn't even be enough time to go over all of the test results I bring in from the past.Sooooo...I lurk. I would love to hear about people's dealings with this Cryo. Thyroid too...acites, etc. I could use that help from you guys right now.Thanks to you all again!!! Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 well thank you for checkin in so we know you are alright! DUG wrote: I'll have a 'Sprouted/Sourdough-Rye' Kaiser roll please.... ;-)Things are as well as can be expected here lately.Dealing with being the sole caregiver for my Mom for over a year,.....Tiring for ANY-body, but, it's really been challenging for me.There just isn't enough time/energy to 'keep-up' the house,...etc.Finances are 'screwy' lately as well.We'll figure things out here,....sooner or later.Catcha all later-on-!Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 well thank you for checkin in so we know you are alright! DUG wrote: I'll have a 'Sprouted/Sourdough-Rye' Kaiser roll please.... ;-)Things are as well as can be expected here lately.Dealing with being the sole caregiver for my Mom for over a year,.....Tiring for ANY-body, but, it's really been challenging for me.There just isn't enough time/energy to 'keep-up' the house,...etc.Finances are 'screwy' lately as well.We'll figure things out here,....sooner or later.Catcha all later-on-!Jackie Quote Link to comment Share on other sites More sharing options...
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