Aa
Jim
I had the cryo test done by this doc (Rheum) and I thought that possibly the reason he did it differently was that there was another way of doing it. Well now at this appointment I had with him I asked him and he told me that his assistant comes down and gets the blood and puts it in an incubator in the back blah blah blah. I said "but thats too late." Long story, but this is the 3rd cryo test I had and now come to find out he took blood from my last test and also tested that supposedly for cryo (yet there wasn't any procedure followed in front of me) and so now I still don't know. I don't have the other symptoms that he would be looking for he said BUT still and all - the test was NOT done correctly. I don't know what I expect you to say, cause there is nothing you can say probably, but I am so disgusted with not being able to get this test done properly....AND the kicker is this doctor is mentioned in all these studies and the studies talk of "proper procedure." My husband says "well he should know what he is doing," which is NOT what I needed to hear - so I showed my husband the "proper procedure" from one of the studies. Does anybody do anything right these days? Well today I am thinking of skipping tx if my bx turns out okay. Why? So I can forget about doctors. My "killer" is ~Silent~ these days so I will be able to forget it at this point. The stress of being around these doctors that are getting on my last nerve is not worth clearing the virus at this point and I am serious.
Thanks, Myown, it seems no one is sure whether MC affects tx outcome. I must disagree as to the sharpness of your mind. You don't miss a trick. Please keep us updated on your bx and possible cryo.
All the best,
Kittyface
All the best,
Kittyface
Hi Kitty, nice to meet you. I don't think I have ever "read anything" that actually says cryo will keep you from SVR - but because I have read that they have found "trapped HCV particles" inside the cryo, I figured its only logical that if the cryo is not gone then these virons would be left behind -trapped in the cryo and after tx only a matter of time before replication begins IMO. Now its seems that there are some who tx and know they have cryo - they SVR then get the test for cryo after tx and cryo wasn't there. Now I am just guessing, but it seems those are the folks who have the cryo with the RF factor. Now when I was tested for RF, I didn't have it, so it made me think that if I had cryo, it would be the other one which I believe is Type 1 and so when I said all of this to my doc - asking him if there is a possibility I didn't clear cause my body temp is low - always low and maybe that would keep the cryo jelled (or whatever you call it) and the particles would be trapped AND also told him that I was worried then that it was the other cryo and I heard I would need to be put on immunosuppresants and he said "yes.' And then the interferon. BUT I didn't even get that far in the conversation as to whether I would eventually clear the virus or what happens. But anyhow, mikesimon, had posted this article for me and if I am reading it correctly, I think the last sentence says that cryo can affect outcome of tx? So if thats the case, I believe this is the first I have seen it in black and white - unless I am forgetting something. My memory, word finding problems, spelling and all that kind of brain stuff has suffered some - not that I was ever real smart, but now I really struggle with my thoughts and conveying what I feel. Amount of words - no - as you can see, I'm still typical Irish and talk a mile a minute.
But anyhow Kitty, I will be getting a bx and I will ask my doc if they can check me for this below in article....
Increased T-Cell Sinusoidal Lymphocytosis in Liver Biopsies in Patients With Chronic Hepatitis C and Mixed Cryoglobulinemia.
Carmack S, Taddei T, Robert ME, Mistry P, Jain D.
Department of Pathology, Yale University School of Medicine, New Haven, Connecticut, USA.
Mixed cryoglobulinemia (MC) has a strong association with hepatitis C virus (HCV) infection and is associated with a higher degree of fibrosis and poor response to therapy. Currently, there are no known histological findings on liver biopsy that correlate with the presence of MC in HCV-infected patients, although we have occasionally noted prominent sinusoidal lymphocytosis in MC patients. The goal of this study is to determine whether sinusoidal lymphocytosis is a histological marker of MC in liver biopsies from patients with chronic hepatitis C. The liver clinic database at our institution was searched for chronic hepatitis C patients with MC who underwent liver biopsy during 1999-2005. Ten such cases were identified and were included in the study. Ten chronic hepatitis C MC-negative cases were matched for age and stage of fibrosis to serve as controls. Histological features (sinusoidal lymphocytes, inflammatory activity, acidophil bodies, and fibrosis stage) were evaluated in each biopsy. Clinical and laboratory data (serum protein electrophoresis, liver enzymes, hepatitis C viral load, treatment status, comorbidities, etc.) were also recorded. Formalin-fixed, paraffin-embedded sections were submitted for immunohistochemical analysis using antibodies against CD3, CD20, CD4, CD8, and CD68. Sinusoidal lymphocytes were counted in 5 hpf (40x) on hematoxylin and eosin (H&E) stain, and on CD3 and CD20 immunostains. The number of CD68+ Kupffer cells was also counted in a similar fashion. In the MC-positive versus MC-negative cases, mean fibrosis stage (2.4 vs. 2.4), inflammatory grade (1.7 vs. 2.1), lymphocyte count (359 vs. 128/5 hpf), and Kupffer cell count (239 vs. 220/5 HPF) were assessed. There was a significant increase in sinusoidal T-cell lymphocytes (P < 0.05) in MC-positive cases as compared to MC-negative cases. Nearly all sinusoidal lymphocytes were CD8-positive cells in both groups. Other histological parameters did not differ in the two groups. MC-positive cases tended to have a lower viral load as compared to controls (P= 0.059). The role of sinusoidal T cells in the pathogenesis of MC is currently unknown. It is unclear if the presence of these cells implies ongoing antigenic stimulation that may lead to increased risk of lymphoma. This feature may be an important clue to predict the presence of MC, an HCV-associated phenomenon that has important implications for response to treatment and disease progression.
Actually I think you are onto something. My doctor told me my odds went down after menopause.
So that was one of the reason I treated prior.
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Hey Cindy! It's great to see you!! I think of you often. I hope all is well and that your are enjoying being SVR. I hope to hear the same news concerning your husband soon too.
Well it looks like you are fortunate to have a doctor that looked at the entire picture and gave you good advice to tx before menopause. Crazy thing is I went into SMR (sustained menstrual remission -a medical term I made up lol) as soon as I heard I had hep c - boom, bango - it never came back again. I think the mental shock which caused many things to change inside my body by really messing up my hormones, so what I did for myself (in order to feel I was 'being proactive') was try to think of what type of person would really show high DHEA from stress - shock of hearing I had hep c. Cause I was trying to find reason for all my doctors to see that my high Dhea was from 'mental shock' but causing 'physical' change. They all keep telling me its change of life and I said no its not cause I know stress causes the cortisol to rise and DHEA acts as a buffer. Though yes I do agree menopause messes everything up too, but not raise your DHEA and it just doesn't seem to want to return to normal.
I said to myself - this is like PTSD - Okay, I didn't just come back from fighting a war or something, but the shock of my dx, really hit me very hard and I believe the same way a soldier can go into PTSD from mental stress of war - some people upon hearing bad news or even a sudden death may go into something like PTSD.
So I said to myself, I bet soldiers suffering from PTSD have high levels of DHEA, and sure enough this is what I have found!!! Now to convince doctors that my DHEA being high and has never returned to normal and may be one of the several? things that can keep me or anyone for that matter from clearing - possibly.? And so THEN I tried looking for things that would lower my DHEA and came across "thalidimide," which is kind of scary to me cause the only thing I know about that drug is that it caused birth deformities,,but anyhow Thalidomide lowers levels of TNF which is an inflamatory cytokine. I also found that they use this somehow in Aids patients, I believe they produce too much DHEA early on and then it burns out (I don't know how to word this nor do I fully understand it) but anyhow they then wind up with very low levels of Dhea and I believe I read thats where muscle wasting begins.I did read though that melatonin seems to work alot like Thalidamide blah blah blah. Unfortuanately I don't have the brains to explain it all or even understand it all, but I think its all tied in - the stress (plus my menopause) and knocking the hormones off - cortisol shooting up - Dhea comes to the rescue, cortisol goes too low - adrenal fatigue - insulin imbalance or resistance yada yada yada = NO Svr. So my cryo theory and dhea theory keeps me busy and makes me feel as if I am at least 'trying to help myself."
So yeah, I come up with different theories, just so I don't feel like I am not doing anything at all about my disease and maybe along the way I will stumble on something that will open their ears to listen a bit closer and help me by digging a bit deeper than just saying the answer is 'longer Tx." Many people have tx a second time "longer" and wound up back to square one again. I want to try to avoid that and if jumping up and down until I am heard is what it takes - then I will do that.
Take care Cindy
Kitty, I will get back to you. I have to do something right now but will be back.
So that was one of the reason I treated prior.
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Hey Cindy! It's great to see you!! I think of you often. I hope all is well and that your are enjoying being SVR. I hope to hear the same news concerning your husband soon too.
Well it looks like you are fortunate to have a doctor that looked at the entire picture and gave you good advice to tx before menopause. Crazy thing is I went into SMR (sustained menstrual remission -a medical term I made up lol) as soon as I heard I had hep c - boom, bango - it never came back again. I think the mental shock which caused many things to change inside my body by really messing up my hormones, so what I did for myself (in order to feel I was 'being proactive') was try to think of what type of person would really show high DHEA from stress - shock of hearing I had hep c. Cause I was trying to find reason for all my doctors to see that my high Dhea was from 'mental shock' but causing 'physical' change. They all keep telling me its change of life and I said no its not cause I know stress causes the cortisol to rise and DHEA acts as a buffer. Though yes I do agree menopause messes everything up too, but not raise your DHEA and it just doesn't seem to want to return to normal.
I said to myself - this is like PTSD - Okay, I didn't just come back from fighting a war or something, but the shock of my dx, really hit me very hard and I believe the same way a soldier can go into PTSD from mental stress of war - some people upon hearing bad news or even a sudden death may go into something like PTSD.
So I said to myself, I bet soldiers suffering from PTSD have high levels of DHEA, and sure enough this is what I have found!!! Now to convince doctors that my DHEA being high and has never returned to normal and may be one of the several? things that can keep me or anyone for that matter from clearing - possibly.? And so THEN I tried looking for things that would lower my DHEA and came across "thalidimide," which is kind of scary to me cause the only thing I know about that drug is that it caused birth deformities,,but anyhow Thalidomide lowers levels of TNF which is an inflamatory cytokine. I also found that they use this somehow in Aids patients, I believe they produce too much DHEA early on and then it burns out (I don't know how to word this nor do I fully understand it) but anyhow they then wind up with very low levels of Dhea and I believe I read thats where muscle wasting begins.I did read though that melatonin seems to work alot like Thalidamide blah blah blah. Unfortuanately I don't have the brains to explain it all or even understand it all, but I think its all tied in - the stress (plus my menopause) and knocking the hormones off - cortisol shooting up - Dhea comes to the rescue, cortisol goes too low - adrenal fatigue - insulin imbalance or resistance yada yada yada = NO Svr. So my cryo theory and dhea theory keeps me busy and makes me feel as if I am at least 'trying to help myself."
So yeah, I come up with different theories, just so I don't feel like I am not doing anything at all about my disease and maybe along the way I will stumble on something that will open their ears to listen a bit closer and help me by digging a bit deeper than just saying the answer is 'longer Tx." Many people have tx a second time "longer" and wound up back to square one again. I want to try to avoid that and if jumping up and down until I am heard is what it takes - then I will do that.
Take care Cindy
Kitty, I will get back to you. I have to do something right now but will be back.
I understand your frustration. When your health is on the line you'd like med professionals to have some measure of competency. Is that too much to ask?????
I think I have cryo, too, but haven't been tested. I will print out your info re: correct procedure if I ever do.
BTW, can you post some archive links showing why it's harder to SVR when one has cryo? I tried the search engine but can't come up with anything.
Hope you get your correct results one day,
Kittyface
I think I have cryo, too, but haven't been tested. I will print out your info re: correct procedure if I ever do.
BTW, can you post some archive links showing why it's harder to SVR when one has cryo? I tried the search engine but can't come up with anything.
Hope you get your correct results one day,
Kittyface
Actually I think you are onto something. My doctor told me my odds went down after menopause.
So that was one of the reason I treated prior.
Good to see your post Myown, at least you are being proactive and not just assuming doctors are right. I too questioned a lot and had to stay on top of labs, my NP was not on top of things most of the time. I had to request the tests, she would forgot what week we were on. etc
So that was one of the reason I treated prior.
Good to see your post Myown, at least you are being proactive and not just assuming doctors are right. I too questioned a lot and had to stay on top of labs, my NP was not on top of things most of the time. I had to request the tests, she would forgot what week we were on. etc
think you should find a new doctor - not say a word to contradict them no matter what (you know they HATE when we act like we know more than they do, even if we do) and let them do it and see what happens. It seems to me like your frustrations are frustrating the doctors maybe...ie: not knowing the older fashion blood draw etc. might get everybody stressed and maybe why these things are happening with this test?
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The reason I went to this doc is because of the cryo tests never being done correctly and he knew that. And when he asked me about what happened at the other labs I told him and he listened and then grinned and I thought he was going to say something like "okay, just let me send you and be quiet or whatever,,,BUT he said "ya know,, what you are saying, I teach this - to doctors. I am very surprised you know all this."
So of course I then thought "oh thank God,,,finally going to get it done properly. And then all of this happened! So I just don't get it at all. Makes no sense to me. And after I said to him "how does LabCorp get away with doing a Cryo test when they send all their tests out - its not an on site lab etc. He then said again, you really read alot and know what you're talking about. I said, no not really. I do read alot I said, but I don't understand everyting I read, but I do understand the cryo test.
So anyhow, there are things that need to be checked out. No way can I go back into tx without knowing the answers to things that have been stuck in my mind. As I said this Dhea, I need to know why its so high. Something to do with hep - no doubt in my mind- whether it IS cause dhea levels raise to try to get the virus out or from my cortisol being wacked out - don't know. But I do know that people with HIV - their dhea goes down low - too low at times,,,so all of this stuff is all related, but IMO the doctors aren't digging deep enough. HEP c is not just about what geno we are and stage/grade, body weight etc. I think hormones play a role in SVR. I'm just not smart enough to put it all together though, so I may have to wait and just keep getting my dhea tested until it goes down to normal. Insulin resistance could be a factor, even if it doesn't show up as a marker IMO, cause there are alot of things we seem to have that are non specific.
okay time to eat. see ay
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The reason I went to this doc is because of the cryo tests never being done correctly and he knew that. And when he asked me about what happened at the other labs I told him and he listened and then grinned and I thought he was going to say something like "okay, just let me send you and be quiet or whatever,,,BUT he said "ya know,, what you are saying, I teach this - to doctors. I am very surprised you know all this."
So of course I then thought "oh thank God,,,finally going to get it done properly. And then all of this happened! So I just don't get it at all. Makes no sense to me. And after I said to him "how does LabCorp get away with doing a Cryo test when they send all their tests out - its not an on site lab etc. He then said again, you really read alot and know what you're talking about. I said, no not really. I do read alot I said, but I don't understand everyting I read, but I do understand the cryo test.
So anyhow, there are things that need to be checked out. No way can I go back into tx without knowing the answers to things that have been stuck in my mind. As I said this Dhea, I need to know why its so high. Something to do with hep - no doubt in my mind- whether it IS cause dhea levels raise to try to get the virus out or from my cortisol being wacked out - don't know. But I do know that people with HIV - their dhea goes down low - too low at times,,,so all of this stuff is all related, but IMO the doctors aren't digging deep enough. HEP c is not just about what geno we are and stage/grade, body weight etc. I think hormones play a role in SVR. I'm just not smart enough to put it all together though, so I may have to wait and just keep getting my dhea tested until it goes down to normal. Insulin resistance could be a factor, even if it doesn't show up as a marker IMO, cause there are alot of things we seem to have that are non specific.
okay time to eat. see ay
I think you should take Mike up on his offer. With the writer strike deprieving us from Prime Time entertainment -- your trip report no doubt would more than make up for that loss.
----------------------------------------------------
HA!
Nah, we'd be fine.
----------------------------------------------------
HA!
Nah, we'd be fine.
Myown, I have some good medical/hospital stories but they are never as long as yours are. I wonder whether I am omitting important details or are you including extraneous details or is it a little of both? I think it may simply be your love of drama that drives your stories.
If you want to make the drive down here I will arrange for any test you want and I guarantee you any test you want will be done correctly. I know the right people for this stuff - I have cryo-connections
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Thanks, if you mean that about the cryo-connection, I seriously may make the trip if things don't change soon. And come on - you know I talk alot. Its not drama. I don't want this kind of drama in my life. Its the way I talk or do anything (sing etc) - with a passion. Its MEEEEE. Its who I am. Women talk alot more than men and I probably talk alot more than even most women. I can walk around the block and come home with a story,,, maybe you would walk around the same block, see the same thing, talk to the same people and not say more than a paragraph when you told Karen who you met. But the way I am your paragraph to Karen would be my 20 minute story to Mike. He's used to it. Its me, Michael - it's who I am. You're a "bottom line guy." Most guys are.
I don't say anything about your short posts though... BUT I do say to myself,,,"So that's it?? (as I am scratching my head in wonder) Mikes finished writtting that post??? He must have had more to say than that and maybe he accidently hit the "post comment" button - yeah, I guess thats what he did.. But thats okay Mike, I accept you for who you are with your itty-bitty posts.
If you want to make the drive down here I will arrange for any test you want and I guarantee you any test you want will be done correctly. I know the right people for this stuff - I have cryo-connections
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Thanks, if you mean that about the cryo-connection, I seriously may make the trip if things don't change soon. And come on - you know I talk alot. Its not drama. I don't want this kind of drama in my life. Its the way I talk or do anything (sing etc) - with a passion. Its MEEEEE. Its who I am. Women talk alot more than men and I probably talk alot more than even most women. I can walk around the block and come home with a story,,, maybe you would walk around the same block, see the same thing, talk to the same people and not say more than a paragraph when you told Karen who you met. But the way I am your paragraph to Karen would be my 20 minute story to Mike. He's used to it. Its me, Michael - it's who I am. You're a "bottom line guy." Most guys are.
I don't say anything about your short posts though... BUT I do say to myself,,,"So that's it?? (as I am scratching my head in wonder) Mikes finished writtting that post??? He must have had more to say than that and maybe he accidently hit the "post comment" button - yeah, I guess thats what he did.. But thats okay Mike, I accept you for who you are with your itty-bitty posts.
I think you should find a new doctor - not say a word to contradict them no matter what (you know they HATE when we act like we know more than they do, even if we do) and let them do it and see what happens. It seems to me like your frustrations are frustrating the doctors maybe...ie: not knowing the older fashion blood draw etc. might get everybody stressed and maybe why these things are happening with this test?
maybe if you go in to a new doctor nice and quiet and just watch and not say anything...it would work out finally for you?
I have developed quite a bit of auto=-immune issues since the 72 weeks of chemo that are really very much a nuisance and mimic many other illnesses. You're probably fine and don't even know it anyway.
Mike's a fantastic and trustworthy smart guy. Take him up on his offer - after what he's been through he is NOT going to get your some dumblebum doctor.
maybe if you go in to a new doctor nice and quiet and just watch and not say anything...it would work out finally for you?
I have developed quite a bit of auto=-immune issues since the 72 weeks of chemo that are really very much a nuisance and mimic many other illnesses. You're probably fine and don't even know it anyway.
Mike's a fantastic and trustworthy smart guy. Take him up on his offer - after what he's been through he is NOT going to get your some dumblebum doctor.
Yes indeed, smaller is a very key word in that context. But we never want to sacrifice image quality for comfort. I always like to have my cake and to eat it too. But, if forced to make a choice, I would opt for a one time deal with the sharpest and clearest image even if I had to open a little wider to achieve the desired result. I really do have stories that go along with this procedure but I am not into drama right now so they'll have to wait. Mike
Mike: I really wasn't serious but my sense of humor is admittedly shared or even recognized by very few.
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Of course I never know with you, but am learning. So I assume you probably do concede that "smaller " and "more comfortable" are just the words you want to hear when in that position.
MO: I think you should take Mike up on his offer. With the writer strike deprieving us from Prime Time entertainment -- your trip report no doubt would more than make up for that loss.
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Of course I never know with you, but am learning. So I assume you probably do concede that "smaller " and "more comfortable" are just the words you want to hear when in that position.
MO: I think you should take Mike up on his offer. With the writer strike deprieving us from Prime Time entertainment -- your trip report no doubt would more than make up for that loss.
I just don't like being the first of anything medical related unless it's the only procedure that could possibly save my life..... or kill me without a scintilla of pain and suffering.
I really wasn't serious but my sense of humor is admittedly shared or even recognized by very few.
Myown, I have some good medical/hospital stories but they are never as long as yours are. I wonder whether I am omitting important details or are you including extraneous details or is it a little of both? I think it may simply be your love of drama that drives your stories.
If you want to make the drive down here I will arrange for any test you want and I guarantee you any test you want will be done correctly. I know the right people for this stuff - I have cryo-connections.
Mike
I really wasn't serious but my sense of humor is admittedly shared or even recognized by very few.
Myown, I have some good medical/hospital stories but they are never as long as yours are. I wonder whether I am omitting important details or are you including extraneous details or is it a little of both? I think it may simply be your love of drama that drives your stories.
If you want to make the drive down here I will arrange for any test you want and I guarantee you any test you want will be done correctly. I know the right people for this stuff - I have cryo-connections.
Mike
MO: hat makes it worse is that this doctor has studies on the web and on it he talks of how thermally sensitive the test is.
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I often wonder if some of these doctors actually write (or even read) their own published work.
Many years ago, I saw a well-known doctor based on a best selling book he wrote. In the book, he stated several things that absolutely, positively had to be done in a particular situation -- things that he glossed over in the same situation with me.
And, early-on in treatment, I consulted with a doctor who had a well-reasoned/researched study on tx side effects on one of the "pro" sites like "Projects In Knowledge". So I happened to ask him about a certain sfx and he just shook his head and said, "I don't know what to tell you". Except, when I went home and later read his paper again, he had a number of suggestions for that same issue. Probably should have emailed him and suggested he reads his own papers.
-- Jim
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I often wonder if some of these doctors actually write (or even read) their own published work.
Many years ago, I saw a well-known doctor based on a best selling book he wrote. In the book, he stated several things that absolutely, positively had to be done in a particular situation -- things that he glossed over in the same situation with me.
And, early-on in treatment, I consulted with a doctor who had a well-reasoned/researched study on tx side effects on one of the "pro" sites like "Projects In Knowledge". So I happened to ask him about a certain sfx and he just shook his head and said, "I don't know what to tell you". Except, when I went home and later read his paper again, he had a number of suggestions for that same issue. Probably should have emailed him and suggested he reads his own papers.
-- Jim
My first two Hep B vaccines didn't take and I wonder if it was because the nurse didn't shake the vial prior to the injection. It says right on the vial something like "important shake before using" and I confirmed that with the manufacturer that this is important fo the vaccine to be effective. Guess who shook the vial last time :)
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yeah Jim - my place didn't even have the "adult B vaccine" and had to combine the childrens vaccine. I wonder if that could have made a difference - probably not - and I don't remember my nurse shaking it.
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It is frustrating. I know you must have gotten mad when you heard the doctor say that. I'm telling ya, I can understand why some people go back to alcohol after tx - ITS THESE DOCTORS THAT DRIVE US TO IT!!! lol just kidding - not my thang at all.
Elaine and Pro - As you can see I am beyond frustrated AND what makes it worse is that this doctor has studies on the web and on it he talks of how thermally sensitive the test is.
When I brought this up he acted like an hour of it sitting out wouldn't effect the test!! As mentioned when I said leaving it out the cryo can be lost (he smiled) and said its rare. I told him that lately I have been falling into the "rare."
So thats the story. Maybe this all is a sign I shouldn't tx again. I'll know for sure if this crazy stuff continues.
yeah Jim I have to get the B vaccine again, and IF I start tx - this time I will wait until I have antibodies to B before tx starts. I just don't feel good about my immune system getting all these mixed messages - interferon, riba, then at the same time trying to develope antibodies. Of course I don't know what I am talking about - but the nurse even said that becasue I never developed antibodies to try again AFTER tx. Time to eat lunch. See ya later.
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yeah Jim - my place didn't even have the "adult B vaccine" and had to combine the childrens vaccine. I wonder if that could have made a difference - probably not - and I don't remember my nurse shaking it.
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It is frustrating. I know you must have gotten mad when you heard the doctor say that. I'm telling ya, I can understand why some people go back to alcohol after tx - ITS THESE DOCTORS THAT DRIVE US TO IT!!! lol just kidding - not my thang at all.
Elaine and Pro - As you can see I am beyond frustrated AND what makes it worse is that this doctor has studies on the web and on it he talks of how thermally sensitive the test is.
When I brought this up he acted like an hour of it sitting out wouldn't effect the test!! As mentioned when I said leaving it out the cryo can be lost (he smiled) and said its rare. I told him that lately I have been falling into the "rare."
So thats the story. Maybe this all is a sign I shouldn't tx again. I'll know for sure if this crazy stuff continues.
yeah Jim I have to get the B vaccine again, and IF I start tx - this time I will wait until I have antibodies to B before tx starts. I just don't feel good about my immune system getting all these mixed messages - interferon, riba, then at the same time trying to develope antibodies. Of course I don't know what I am talking about - but the nurse even said that becasue I never developed antibodies to try again AFTER tx. Time to eat lunch. See ya later.
Maybe your consult will send you to another lab/doctor for the Cryo test -- but you really do have to be your own medical advocates. Some reading on sloppy hospital work:
http://tinyurl.com/ypagar
http://seattletimes.nwsource.com/html/localnews/2003968596_medrecords23m.html
http://tinyurl.com/ypagar
http://seattletimes.nwsource.com/html/localnews/2003968596_medrecords23m.html
Yeah smarter than Jim - thats funnnnneee. Smack him Jim.
The first cryo test that I had by him(the techs),,,I STOPPED THEM and sent my husband up to the doctor and told him that the they are not going to do the procedure correctly cause they don't see it checked off.
He pointed to something that was written on the lab and says "thats the cryo test, and they know how to do it."
So now I go back in and I said the doc said "do the cryo,where is the incubator?" She said "unless he checks it off on the lab,I can't do a cryo test." I pointed to the lab and said "he considers this a cryo test."
She said, "Listen, he has a girl that works for him and those vials including what you just pointed to she does HERSELF - she picks them up,,BUT (she says) sometimes its not until 6 pm at night."
So now I am ready to jump out of my skin.....Told her I am not mad at her - its not her fault and now I will go up and see the doctor instead of my husband.
So on the way out of the lab the manager asks me whats wrong and I tell him. I said listen do me a favor before blood starts shooting out of my ears on nose and btw Leon I have hep so we don't want that to happen...please call the doc and explain that they are not going to do a test with incubator or warm bath unless they actually see "cryo" box checked off (and I dont blame them.)
So winds up doc was in different building and no way of getting hold of him.
So by now I am able to walk thru walls and climb the side of buildings, so I tell my husband to wait for me and I will be back, I am going to try to find the doc..
So I go to his floor and I walk past the reception area and go straight to the back and ask where did the doctor go - where can I find him? So the guy, male nurse or whatever says why? Told him and he says "oh I'll check off the box for you." I said. nah, don't want ya to lose your job." He gives me a look - like no problemo.
BUT HERE IS THE PROBLEM,,,,,,,THIS TEST will now be getting done with warm water BUT NOT BY THE ASSISTANT THAT THE DOCTOR USES and from there it will go to the LAB and be done by a tech there,,but again NOT by this assistant of the doctor - who I guess is the one he likes to have to the cryo test for him.. Can ya get the picture? The blood that his assistant is going to do the cryo test on SITS OVER ON A TABLE WAITING FOR HER and so this "warm blood test," this young girl is doing for me AND!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! AHHHHHHH!!!!! She goes over (so now I am back dowstairs - thanked the guy and left) to the sink and runs the warm water..
Gets what looks like a Glad Sandwich bag and comes over with it. I said it is supposed to be body temp. You don't have a thermometer or anything? She hands it to me and says ,,Does it feel like body temp to you? I can't take it anymore - I'm serious
I said "look, its not your fault, you are a very nice girl, but I could cry right now, but I won't. I'm from the other side of the Hudson River and here I am getting this test for the 3rd time.,,,,,,I have been to doctors that are known around the globe and still haven't been able to get this test done properly. There is a big chance I dont even have cryo sweety, but I failed tx - I eat only holistic foods and it was tough for me to think about putting poison in my body, but I knew it was best for me ( at this point I WAS ready to cry but I didn't) and there is a slight chance that I failed tx because MAYBE I have cryo - maybe not,,,BUT I need to rule that out and I need to know that everything was done properly to ease my mind. She said she understood and she felt bad.
The rest of the story you know. IMO the problem they make with this test is allowing lab techs to do it. This is a test that should ONLY be done by a doctor and there is where the problem is.
But anyhow this doc as I mentioned DID this test AGAIN but of course I didn't know cause blood was just draw in a regular fashion. He had told my hep doc that he thought I had an autoimmune problem and so what ever he is seeing - it wasn't autoimmune (I guess) and maybe he thought it was still cryo and thats why he did ANOTHER TEST? I don't know. But IF he was sooooo sure that the way he does the test is okay to do it that way,,,why did he do it again. I get answers that beat around the bush or they will talk to me so that I don't understand them...but I stop them when that happens, but at this point - I am going to ruin my health and cause other problems if I keep trying to get to the root of whats wrong, so thats why I said I don't want to tx at this point.
I refuse to go back into tx until I find out about my DHEA too. I know a bit about it, but I want to know more of how it is related to hepc AND I know it has to be. One thing I read once is that DHEA helps the body a virus. Its also related to cortisol - as a buffer type hormone. AND I am the Cortisol Queen of New Orlean - in case ya didn't notice.
But anyhow - my husband thinks if the bx shows 0 don't tx,and cause of all this aggravation, I might go that route.
I have a consult coming up soon so I'll talk to him about it all.
I mean in all fairness, the doctor does seem to know alot from what I see on the internet and I have to hope that other tests that he took would indicate something with cryo if it is there. Its just that I want to feel all roads are clear and give it my best shot if I have to do 48 weeks - if I do tx at all.
The first cryo test that I had by him(the techs),,,I STOPPED THEM and sent my husband up to the doctor and told him that the they are not going to do the procedure correctly cause they don't see it checked off.
He pointed to something that was written on the lab and says "thats the cryo test, and they know how to do it."
So now I go back in and I said the doc said "do the cryo,where is the incubator?" She said "unless he checks it off on the lab,I can't do a cryo test." I pointed to the lab and said "he considers this a cryo test."
She said, "Listen, he has a girl that works for him and those vials including what you just pointed to she does HERSELF - she picks them up,,BUT (she says) sometimes its not until 6 pm at night."
So now I am ready to jump out of my skin.....Told her I am not mad at her - its not her fault and now I will go up and see the doctor instead of my husband.
So on the way out of the lab the manager asks me whats wrong and I tell him. I said listen do me a favor before blood starts shooting out of my ears on nose and btw Leon I have hep so we don't want that to happen...please call the doc and explain that they are not going to do a test with incubator or warm bath unless they actually see "cryo" box checked off (and I dont blame them.)
So winds up doc was in different building and no way of getting hold of him.
So by now I am able to walk thru walls and climb the side of buildings, so I tell my husband to wait for me and I will be back, I am going to try to find the doc..
So I go to his floor and I walk past the reception area and go straight to the back and ask where did the doctor go - where can I find him? So the guy, male nurse or whatever says why? Told him and he says "oh I'll check off the box for you." I said. nah, don't want ya to lose your job." He gives me a look - like no problemo.
BUT HERE IS THE PROBLEM,,,,,,,THIS TEST will now be getting done with warm water BUT NOT BY THE ASSISTANT THAT THE DOCTOR USES and from there it will go to the LAB and be done by a tech there,,but again NOT by this assistant of the doctor - who I guess is the one he likes to have to the cryo test for him.. Can ya get the picture? The blood that his assistant is going to do the cryo test on SITS OVER ON A TABLE WAITING FOR HER and so this "warm blood test," this young girl is doing for me AND!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! AHHHHHHH!!!!! She goes over (so now I am back dowstairs - thanked the guy and left) to the sink and runs the warm water..
Gets what looks like a Glad Sandwich bag and comes over with it. I said it is supposed to be body temp. You don't have a thermometer or anything? She hands it to me and says ,,Does it feel like body temp to you? I can't take it anymore - I'm serious
I said "look, its not your fault, you are a very nice girl, but I could cry right now, but I won't. I'm from the other side of the Hudson River and here I am getting this test for the 3rd time.,,,,,,I have been to doctors that are known around the globe and still haven't been able to get this test done properly. There is a big chance I dont even have cryo sweety, but I failed tx - I eat only holistic foods and it was tough for me to think about putting poison in my body, but I knew it was best for me ( at this point I WAS ready to cry but I didn't) and there is a slight chance that I failed tx because MAYBE I have cryo - maybe not,,,BUT I need to rule that out and I need to know that everything was done properly to ease my mind. She said she understood and she felt bad.
The rest of the story you know. IMO the problem they make with this test is allowing lab techs to do it. This is a test that should ONLY be done by a doctor and there is where the problem is.
But anyhow this doc as I mentioned DID this test AGAIN but of course I didn't know cause blood was just draw in a regular fashion. He had told my hep doc that he thought I had an autoimmune problem and so what ever he is seeing - it wasn't autoimmune (I guess) and maybe he thought it was still cryo and thats why he did ANOTHER TEST? I don't know. But IF he was sooooo sure that the way he does the test is okay to do it that way,,,why did he do it again. I get answers that beat around the bush or they will talk to me so that I don't understand them...but I stop them when that happens, but at this point - I am going to ruin my health and cause other problems if I keep trying to get to the root of whats wrong, so thats why I said I don't want to tx at this point.
I refuse to go back into tx until I find out about my DHEA too. I know a bit about it, but I want to know more of how it is related to hepc AND I know it has to be. One thing I read once is that DHEA helps the body a virus. Its also related to cortisol - as a buffer type hormone. AND I am the Cortisol Queen of New Orlean - in case ya didn't notice.
But anyhow - my husband thinks if the bx shows 0 don't tx,and cause of all this aggravation, I might go that route.
I have a consult coming up soon so I'll talk to him about it all.
I mean in all fairness, the doctor does seem to know alot from what I see on the internet and I have to hope that other tests that he took would indicate something with cryo if it is there. Its just that I want to feel all roads are clear and give it my best shot if I have to do 48 weeks - if I do tx at all.
Our last posts crossed, but we seem to be on the same page. But again, it's a pretty benign procedure, and yes, you do have more experience than me, and the words "first time" should have rung a bell -- again, maybe it would have if my pants were on. At that point, "smaller and less discomfort" were the words I wanted to hear.
Of course, having the luxury of Monday morning -- including having my pants on and my legs crossed -- yes, the doctor should have informed and given me a choice in the matter. And that was sort of the point of my post. That things often don't get done the way they should. Maybe you might have intervened in my position. I doubt it, but will give you the benefit.
-- Jim
-- Jim
Apparently the doctor was wrong if the images aren't as clear. And credentials alone don't impress me that much. I like to form my own opinions about a doctor on whose opinion I am going to rely. Maybe it's just that I have so much more experience with "medical experts" than you have. And that's a good thing for you. Mike
Don't see it that way. This wasn't a new lifesaving bypass procedure, for example, where yes I would have said "stop".
The doctor explained that this was a "newer" better scope (smaller) and I would have less discomfort. He has impeccable credentials and I went with his advice. Sure you would have done the same had you been in my position, and you do know the position I am talking about -- because that's exactly when I first heard the about the smaller scope.
The doctor explained that this was a "newer" better scope (smaller) and I would have less discomfort. He has impeccable credentials and I went with his advice. Sure you would have done the same had you been in my position, and you do know the position I am talking about -- because that's exactly when I first heard the about the smaller scope.
this doc that did cryo test, I said what about the cryo being lost when its not put in the warm bath right away?? And he smiled and said "you read alot, I wish all people were as interested in cryo as you." (what is that supposed to mean) And so he said "you're right, that happens on a rare occasion, but if its done within the hour - it would be fine."
I told him I didn't want to sound disrespectful, but I disagree from what I read, the test HAS TO AT ALL TIMES BE DONE PROPERLY WHICH MEANS 'Warming the tube for starters," and getting the vial in the bath within ONE minute from drawing it from the body. IT MUST be kept a body temperature.
So he said, 'well I had asked you alot of questions and all your answers were NO (cryo questions - like rash etc) and I said "I know," but I still wanted the test down correctly and he said it was.
So anyhow he did say that he did alot of other tests that would have showed evidence of cryo- kidney problem or whatever he said. I knew I didn't have RF but I also knew a certain type of cryo - can't remeber which one - doesn't have RF....
but anyhow, I actually do like this doc and I know he knows alot. But I just wanted my mind to finally be put to ease and have it done properly once and for all, so that it would have been one thing checked off the list before I started tx.
My DHEA is 3 times as high as what it should be and NO ONE has an answer for me. He said he wishes he knew why. I have searched and I have my theories as to why and its all hep related as far as I am concerned. Its not PCOS because my testosterone is normal. But I am tired of reading and trying to figure it out myself.
I do NOT want to tx again if this particular hormone is off the charts like it is cause I do believe hormones do play a role in SVR IMO. So I need that to get back to normal if I am going to tx.
I told him I didn't want to sound disrespectful, but I disagree from what I read, the test HAS TO AT ALL TIMES BE DONE PROPERLY WHICH MEANS 'Warming the tube for starters," and getting the vial in the bath within ONE minute from drawing it from the body. IT MUST be kept a body temperature.
So he said, 'well I had asked you alot of questions and all your answers were NO (cryo questions - like rash etc) and I said "I know," but I still wanted the test down correctly and he said it was.
So anyhow he did say that he did alot of other tests that would have showed evidence of cryo- kidney problem or whatever he said. I knew I didn't have RF but I also knew a certain type of cryo - can't remeber which one - doesn't have RF....
but anyhow, I actually do like this doc and I know he knows alot. But I just wanted my mind to finally be put to ease and have it done properly once and for all, so that it would have been one thing checked off the list before I started tx.
My DHEA is 3 times as high as what it should be and NO ONE has an answer for me. He said he wishes he knew why. I have searched and I have my theories as to why and its all hep related as far as I am concerned. Its not PCOS because my testosterone is normal. But I am tired of reading and trying to figure it out myself.
I do NOT want to tx again if this particular hormone is off the charts like it is cause I do believe hormones do play a role in SVR IMO. So I need that to get back to normal if I am going to tx.
Before your trans-rectal the second you heard that you were the first blah blah blah you should have stopped it right there and either left or demanded the routine approach. I thought you were smarter than that Jim. That sounds like something the uninitiated would endure. Mike
Just caught that "skipping tx" part if you biopsy turns out OK. You probably already know how I feel about that, but sure, taking some time off, having your liver monitored on a regular basis, would be my personal choice, given a good biopsy report. Also, hopefully, Fibroscan will be available at a lot more sites within the next year or two, meaning someone in your position may be able to get a scan as part of a biyearly visit to your doc.
All the best,
-- Jim
All the best,
-- Jim
I understand your frustration. Bad enough when the guy in the department store in inept, worse when your doctor's assistant can't get a pre-cert through, and really bad when a medical professional doesn't follow proper procedure.
My first two Hep B vaccines didn't take and I wonder if it was because the nurse didn't shake the vial prior to the injection. It says right on the vial something like "important shake before using" and I confirmed that with the manufacturer that this is important fo the vaccine to be effective. Guess who shook the vial last time :)
The only thing I can suggest is to do a little independent research and find out if this particular break in procedure could reasonable affect the results. If you come to the conclusion that it could, then definitely re-take the test again, either with your current facility -- after letting them know how you want it done -- or another.
Had a transrectal ultrasound (sorry for those who just ate lunch :)) earlier this year and after gloving up, the doc informs me that they will be using a "improved" rig on me. Actually I'll be the first one to use it. Should be more comfortable, blah, blah, blah. Anyway, after the procedure I overhear the doc talking to a nurse or someone how the pics from the "improved" rig weren't quite as clear as from the standard rig. So I tell the doc, I heard him talking to the nurse and what's the story? He says, don't worry, the pics are fine. Right. I plan on asking for the procedure to be repeated when I see him next time.
Again, sorry you're going through this, as it seem to be a sign of our times.
-- Jim
My first two Hep B vaccines didn't take and I wonder if it was because the nurse didn't shake the vial prior to the injection. It says right on the vial something like "important shake before using" and I confirmed that with the manufacturer that this is important fo the vaccine to be effective. Guess who shook the vial last time :)
The only thing I can suggest is to do a little independent research and find out if this particular break in procedure could reasonable affect the results. If you come to the conclusion that it could, then definitely re-take the test again, either with your current facility -- after letting them know how you want it done -- or another.
Had a transrectal ultrasound (sorry for those who just ate lunch :)) earlier this year and after gloving up, the doc informs me that they will be using a "improved" rig on me. Actually I'll be the first one to use it. Should be more comfortable, blah, blah, blah. Anyway, after the procedure I overhear the doc talking to a nurse or someone how the pics from the "improved" rig weren't quite as clear as from the standard rig. So I tell the doc, I heard him talking to the nurse and what's the story? He says, don't worry, the pics are fine. Right. I plan on asking for the procedure to be repeated when I see him next time.
Again, sorry you're going through this, as it seem to be a sign of our times.
-- Jim
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