Guest guest Posted July 5, 1999 Report Share Posted July 5, 1999 onelist wrote: > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 Dear All: This is just my opinion, and I know many physicians feel they are " G-D " , and you are suppose to follow blindly, but, my philosophy is that any patient accepted by any provider, must be allowed to question, and the provider owes the patient a reasonable explanation. Some providers get upset if you suggest something that they are not using. ly, if this provider will not explain their idea about deviating from the protocol, I would first force the issue to them for an answer. If that is not met to YOUR satisfaction, I would first pose the question in written form, and send it Certified/Return receipt. If your provider ignores your reasonable requests, I would not only transfer to another GI/Hepatologist, but, probably make a complaint to the Investigatory Board, because he is deviating from the protocols, and he refuses to address your questions. That can also translate into a " malpractice " issue. In any event, if a provider refuses to take the time to explain what the disease is, and answer any questions during therapy you may have, and have established a good working rapport that is based on trust, then they are not the person for you. But, again, you are owed an explanation, and one you can understand, and if the provider will never take the time to give you the attention you are paying for, as well as morally, and ethics, then I am not sure I would trust that provider. It is common courtesy, if nothing else, and, especially when it comes to HCV, you will have obvious questions, and that mandate, should is owed, period. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 Dear All: This is just my opinion, and I know many physicians feel they are " G-D " , and you are suppose to follow blindly, but, my philosophy is that any patient accepted by any provider, must be allowed to question, and the provider owes the patient a reasonable explanation. Some providers get upset if you suggest something that they are not using. ly, if this provider will not explain their idea about deviating from the protocol, I would first force the issue to them for an answer. If that is not met to YOUR satisfaction, I would first pose the question in written form, and send it Certified/Return receipt. If your provider ignores your reasonable requests, I would not only transfer to another GI/Hepatologist, but, probably make a complaint to the Investigatory Board, because he is deviating from the protocols, and he refuses to address your questions. That can also translate into a " malpractice " issue. In any event, if a provider refuses to take the time to explain what the disease is, and answer any questions during therapy you may have, and have established a good working rapport that is based on trust, then they are not the person for you. But, again, you are owed an explanation, and one you can understand, and if the provider will never take the time to give you the attention you are paying for, as well as morally, and ethics, then I am not sure I would trust that provider. It is common courtesy, if nothing else, and, especially when it comes to HCV, you will have obvious questions, and that mandate, should is owed, period. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Marty, I was taken off combo at 6 months when my blood work showed negative viral load and ALT and AST were normal. I questioned at that time why I was being taken off and was told that I didn't need anymore as I had cleared the virus. When tested 6 months later my viral load was triple what it was when originally diagnosed and enzyme levels were elevated. (No testing had been done at 3 months) My GI said at that time that there was nothing further I could do. I just went to a new doctor who said that she felt I was taken off too soon and she suggested I go back on the medication. I went to my PCP to get referrals and was refused. He assured me that he was convinced that the first GI did everything he could and told me I should " accept the fact that I was one of the people who could not be cured and deal with that " . Needless to say he is no longer my PCP. I immediately switched my family to a new PCP. I think one of the biggest problems we have to deal with is ignorance about this disease. I don't necessarily think my first GI thought he was infallible I just don't think he had enough knowledge about the protocal. I am not excusing him. I also won't return to him. I am angry and do not look forward to going back on the combo. I definitely feel that if a doctor cannot convince me he/she knows what they are doing they are not good enough to be my doctor. We need to move on rather than waste time with a doctor who isn't open to learning what is the latest thinking on a particular disease. Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Marty, I was taken off combo at 6 months when my blood work showed negative viral load and ALT and AST were normal. I questioned at that time why I was being taken off and was told that I didn't need anymore as I had cleared the virus. When tested 6 months later my viral load was triple what it was when originally diagnosed and enzyme levels were elevated. (No testing had been done at 3 months) My GI said at that time that there was nothing further I could do. I just went to a new doctor who said that she felt I was taken off too soon and she suggested I go back on the medication. I went to my PCP to get referrals and was refused. He assured me that he was convinced that the first GI did everything he could and told me I should " accept the fact that I was one of the people who could not be cured and deal with that " . Needless to say he is no longer my PCP. I immediately switched my family to a new PCP. I think one of the biggest problems we have to deal with is ignorance about this disease. I don't necessarily think my first GI thought he was infallible I just don't think he had enough knowledge about the protocal. I am not excusing him. I also won't return to him. I am angry and do not look forward to going back on the combo. I definitely feel that if a doctor cannot convince me he/she knows what they are doing they are not good enough to be my doctor. We need to move on rather than waste time with a doctor who isn't open to learning what is the latest thinking on a particular disease. Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Hi Marty, I Marty, thanks for replying back to me, The doctor was total new to this, and thought he knew everything there was to know, when my RNA came back 0 after 3 months, he told me I was in remission, could be for 2 years could be longer. Yes is was ignorant, and when I got retested 3 months later and my viral load doubled, I found a new doctor. Are you saying the therapy should be 4 years? I have 6 more months to go, and I would have been on the combo for 2 years. Yes, the longer on treatment the better the response, but I never heard of 4 years of treatment. I do blame him, for his ignorance, and for not listening to his patients. He has a mind of his own, and you could not change it. If I knew now, what I knew then, things hopefully would have turned out differently. Please let me know about the 48 week treatment. I have never heard of being on it that long, I have been RNA 0 now for about 4 or 5 months, can't remember. I do have to say, now I have found a very good hepo.doc. who will listen to you, and take your suggestions. He has reduced my meds. since I am at 0, only because of the bad side effects I have, Better to do that, then to take me off, I have been on to long, and suffered to much to quit now. Thank You Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Hi Marty, I Marty, thanks for replying back to me, The doctor was total new to this, and thought he knew everything there was to know, when my RNA came back 0 after 3 months, he told me I was in remission, could be for 2 years could be longer. Yes is was ignorant, and when I got retested 3 months later and my viral load doubled, I found a new doctor. Are you saying the therapy should be 4 years? I have 6 more months to go, and I would have been on the combo for 2 years. Yes, the longer on treatment the better the response, but I never heard of 4 years of treatment. I do blame him, for his ignorance, and for not listening to his patients. He has a mind of his own, and you could not change it. If I knew now, what I knew then, things hopefully would have turned out differently. Please let me know about the 48 week treatment. I have never heard of being on it that long, I have been RNA 0 now for about 4 or 5 months, can't remember. I do have to say, now I have found a very good hepo.doc. who will listen to you, and take your suggestions. He has reduced my meds. since I am at 0, only because of the bad side effects I have, Better to do that, then to take me off, I have been on to long, and suffered to much to quit now. Thank You Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Beth, Do you know what your genotype is? I'd bet that your story happens way too often. Claudine ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Beth, Do you know what your genotype is? I'd bet that your story happens way too often. Claudine ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Beth, Do you know what your genotype is? I'd bet that your story happens way too often. Claudine ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Beth, Do you know what your genotype is? I'd bet that your story happens way too often. Claudine ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Beth... You shoulda had a genotype done.. Genotype ones need a year of treatment even after going pcr negative. alley/ ICQ 12631861 alleypat@... http://micromagic.net/~alleypat <center> <a href= " /subscribe/DFW_Liver_Disease " > <img src= " /images/join.gif " border=0><br> Click to subscribe to DFW_Liver_Disease</a> </center> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Beth... You shoulda had a genotype done.. Genotype ones need a year of treatment even after going pcr negative. alley/ ICQ 12631861 alleypat@... http://micromagic.net/~alleypat <center> <a href= " /subscribe/DFW_Liver_Disease " > <img src= " /images/join.gif " border=0><br> Click to subscribe to DFW_Liver_Disease</a> </center> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 People use RNA and PCR and I do not want to sound ignorant but I am not sure what they stand for.....maybe once someone tells me I will know by full name. It is like my congenital ITP (Idiopathic or Immune Thrombocytopenic Purpura). People don't know that either.....Connie I know what DNA stands for....smile --- CCampb3234@... wrote: > Hi Marty, > I Marty, thanks for replying back to > me, The doctor was total > new to this, and thought he knew everything there > was to know, when my RNA > came back 0 after 3 months, he told me I was in > remission, could be for 2 > years could be longer. Yes is was ignorant, and when > I got retested 3 months > later and my viral load doubled, I found a new > doctor. Are you saying the > therapy should be 4 years? I have 6 more months to > go, and I would have been > on the combo for 2 years. Yes, the longer on > treatment the better the > response, but I never heard of 4 years of treatment. > I do blame him, for his > ignorance, and for not listening to his patients. He > has a mind of his own, > and you could not change it. If I knew now, what I > knew then, things > hopefully would have turned out differently. Please > let me know about the 48 > week treatment. I have never heard of being on it > that long, I have been RNA > 0 now for about 4 or 5 months, can't remember. I do > have to say, now I have > found a very good hepo.doc. who will listen to you, > and take your > suggestions. He has reduced my meds. since I am at > 0, only because of the bad > side effects I have, Better to do that, then to take > me off, I have been on > to long, and suffered to much to quit now. > > Thank You > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 People use RNA and PCR and I do not want to sound ignorant but I am not sure what they stand for.....maybe once someone tells me I will know by full name. It is like my congenital ITP (Idiopathic or Immune Thrombocytopenic Purpura). People don't know that either.....Connie I know what DNA stands for....smile --- CCampb3234@... wrote: > Hi Marty, > I Marty, thanks for replying back to > me, The doctor was total > new to this, and thought he knew everything there > was to know, when my RNA > came back 0 after 3 months, he told me I was in > remission, could be for 2 > years could be longer. Yes is was ignorant, and when > I got retested 3 months > later and my viral load doubled, I found a new > doctor. Are you saying the > therapy should be 4 years? I have 6 more months to > go, and I would have been > on the combo for 2 years. Yes, the longer on > treatment the better the > response, but I never heard of 4 years of treatment. > I do blame him, for his > ignorance, and for not listening to his patients. He > has a mind of his own, > and you could not change it. If I knew now, what I > knew then, things > hopefully would have turned out differently. Please > let me know about the 48 > week treatment. I have never heard of being on it > that long, I have been RNA > 0 now for about 4 or 5 months, can't remember. I do > have to say, now I have > found a very good hepo.doc. who will listen to you, > and take your > suggestions. He has reduced my meds. since I am at > 0, only because of the bad > side effects I have, Better to do that, then to take > me off, I have been on > to long, and suffered to much to quit now. > > Thank You > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2000 Report Share Posted April 1, 2000 the PCR is an RNA test. sometimes they write it PCR-RNA and other ways. I don't want to get real technical... but if you remember from science class.. DNA and RNA... i think the RNA was the messenger for the DNA or something like that don't quote me I just woke up ahha. No one has seen an HCV virus. Even the strongest microscopes cannot see ONE virus cell. What they can see are the results and byproducts and doohickeys of the virus. Maybe that's why even the best PCR tests can only test down to 200 parts/mil or something like that. Anyway.... pretend the scientists are aliens and they are looking for life on earth... Now we as humans are too small for them to see like the hcv virus... But... they can see our highways because they stretch all over the continent (pretend they are the blood vessels). So they can do tests on the highways to see the habits and actions of us the humans. They can test for exhaust fumes from our vehicles, wear and tear on the roadways, that sort of thing. That's a silly analogy but about what scientists sometimes have to go thru to study really small things. alley/ ICQ 12631861 alleypat@... http://micromagic.net/~alleypat <center> <a href= " /subscribe/DFW_Liver_Disease " > <img src= " /images/join.gif " border=0><br> Click to subscribe to DFW_Liver_Disease</a> </center> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2000 Report Share Posted April 1, 2000 the PCR is an RNA test. sometimes they write it PCR-RNA and other ways. I don't want to get real technical... but if you remember from science class.. DNA and RNA... i think the RNA was the messenger for the DNA or something like that don't quote me I just woke up ahha. No one has seen an HCV virus. Even the strongest microscopes cannot see ONE virus cell. What they can see are the results and byproducts and doohickeys of the virus. Maybe that's why even the best PCR tests can only test down to 200 parts/mil or something like that. Anyway.... pretend the scientists are aliens and they are looking for life on earth... Now we as humans are too small for them to see like the hcv virus... But... they can see our highways because they stretch all over the continent (pretend they are the blood vessels). So they can do tests on the highways to see the habits and actions of us the humans. They can test for exhaust fumes from our vehicles, wear and tear on the roadways, that sort of thing. That's a silly analogy but about what scientists sometimes have to go thru to study really small things. alley/ ICQ 12631861 alleypat@... http://micromagic.net/~alleypat <center> <a href= " /subscribe/DFW_Liver_Disease " > <img src= " /images/join.gif " border=0><br> Click to subscribe to DFW_Liver_Disease</a> </center> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2000 Report Share Posted April 1, 2000 Smile.....I like your description. Perchance were or are you a grade school teacher? If not you would be a good one......Thanks, Connie --- alley/ <alleypat@...> wrote: > the PCR is an RNA test. sometimes they write it > PCR-RNA and other ways. I > don't want to get real technical... but if you > remember from science class.. > DNA and RNA... i think the RNA was the messenger for > the DNA or something > like that don't quote me I just woke up ahha. No one > has seen an HCV virus. > Even the strongest microscopes cannot see ONE virus > cell. What they can see > are the results and byproducts and doohickeys of the > virus. Maybe that's why > even the best PCR tests can only test down to 200 > parts/mil or something > like that. > > Anyway.... pretend the scientists are aliens and > they are looking for life > on earth... Now we as humans are too small for them > to see like the hcv > virus... But... they can see our highways because > they stretch all over the > continent (pretend they are the blood vessels). So > they can do tests on the > highways to see the habits and actions of us the > humans. They can test for > exhaust fumes from our vehicles, wear and tear on > the roadways, that sort of > thing. That's a silly analogy but about what > scientists sometimes have to go > thru to study really small things. > > alley/ > ICQ 12631861 > alleypat@... > http://micromagic.net/~alleypat > > <center> > <a > href= " /subscribe/DFW_Liver_Disease " > > <img > src= " /images/join.gif " > border=0><br> > Click to subscribe to > DFW_Liver_Disease</a> > </center> > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2000 Report Share Posted April 1, 2000 Smile.....I like your description. Perchance were or are you a grade school teacher? If not you would be a good one......Thanks, Connie --- alley/ <alleypat@...> wrote: > the PCR is an RNA test. sometimes they write it > PCR-RNA and other ways. I > don't want to get real technical... but if you > remember from science class.. > DNA and RNA... i think the RNA was the messenger for > the DNA or something > like that don't quote me I just woke up ahha. No one > has seen an HCV virus. > Even the strongest microscopes cannot see ONE virus > cell. What they can see > are the results and byproducts and doohickeys of the > virus. Maybe that's why > even the best PCR tests can only test down to 200 > parts/mil or something > like that. > > Anyway.... pretend the scientists are aliens and > they are looking for life > on earth... Now we as humans are too small for them > to see like the hcv > virus... But... they can see our highways because > they stretch all over the > continent (pretend they are the blood vessels). So > they can do tests on the > highways to see the habits and actions of us the > humans. They can test for > exhaust fumes from our vehicles, wear and tear on > the roadways, that sort of > thing. That's a silly analogy but about what > scientists sometimes have to go > thru to study really small things. > > alley/ > ICQ 12631861 > alleypat@... > http://micromagic.net/~alleypat > > <center> > <a > href= " /subscribe/DFW_Liver_Disease " > > <img > src= " /images/join.gif " > border=0><br> > Click to subscribe to > DFW_Liver_Disease</a> > </center> > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2000 Report Share Posted April 1, 2000 LOL Connie no I wasn't. But ya never know alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat <center> <a href= " /subscribe/DFW_Liver_Disease " > <img src= " /images/join.gif " border=0><br> Click to subscribe to DFW_Liver_Disease</a> </center> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2000 Report Share Posted April 1, 2000 LOL Connie no I wasn't. But ya never know alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat <center> <a href= " /subscribe/DFW_Liver_Disease " > <img src= " /images/join.gif " border=0><br> Click to subscribe to DFW_Liver_Disease</a> </center> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2000 Report Share Posted April 1, 2000 LOL Connie no I wasn't. But ya never know alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat <center> <a href= " /subscribe/DFW_Liver_Disease " > <img src= " /images/join.gif " border=0><br> Click to subscribe to DFW_Liver_Disease</a> </center> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2000 Report Share Posted April 1, 2000 LOL Connie no I wasn't. But ya never know alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat <center> <a href= " /subscribe/DFW_Liver_Disease " > <img src= " /images/join.gif " border=0><br> Click to subscribe to DFW_Liver_Disease</a> </center> Quote Link to comment Share on other sites More sharing options...
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