Aa
Electrophoresis vs. Plasmaphoresis
To: TnHepGuy;Kalio;Giddyup;MissMiss;Foeseegood;Kit07
If any of you have the direct line to Hepatitus Researcher, I would appreciate the number.
I have had the Cryoglobulin Test & I have done 100 plus weeks of therapy.(Peg-Intron; Infergen; Pegasys: of course all three with Ribavarin(800 mg.) I have responded, but ultimately relapsed. 1B, grade 3, stage 4, 63 yrs., F.
We all know that Cryo is the prescence of abnormal proteins & when in normal circumstances would be treated with interferon. This is what Shands refer to as a tag-along disease with Hep C., & they are afraid to treat again with interferon.
The test prescribed is Electrophoresis, which separates the proteins found in blood(serum), or urine. An electric test is used to to move the proteins across a thin layer of gel-like agar, showing the distance that ind. proteins travel depending on size, shape & electrical charge. These are then detected by the use of a dye, that binds to all the proteins & reveals a characteristic pattern of bands, indicating the prescence of a particular protein. This is shown in a visual graph which shows where their is a lot of particular protein. Where their is a cancer of plasma cells, only one type of antibody is produced, termed polyclonal. Their are also 2 other types, with different characteristics. My problem is that my cryo test showed all 3 types.
This absolutely scares me to death.
My lab work shows the 3 types with %'s. This is why I am trying to find out an average amount for each type? I cannot seem to find any history on this?
Their is a Plasmaphoresis which removes the toxic elements from the blood & I am assuming this would follow the above test.
Anyhow, I am going back to Shands as the test has to be done in a Hospital lab, which makes me wonder about my cryo test being handled at Quest labs?
Thanks to all for your input & all is appreciated very much,
Sandy
If any of you have the direct line to Hepatitus Researcher, I would appreciate the number.
I have had the Cryoglobulin Test & I have done 100 plus weeks of therapy.(Peg-Intron; Infergen; Pegasys: of course all three with Ribavarin(800 mg.) I have responded, but ultimately relapsed. 1B, grade 3, stage 4, 63 yrs., F.
We all know that Cryo is the prescence of abnormal proteins & when in normal circumstances would be treated with interferon. This is what Shands refer to as a tag-along disease with Hep C., & they are afraid to treat again with interferon.
The test prescribed is Electrophoresis, which separates the proteins found in blood(serum), or urine. An electric test is used to to move the proteins across a thin layer of gel-like agar, showing the distance that ind. proteins travel depending on size, shape & electrical charge. These are then detected by the use of a dye, that binds to all the proteins & reveals a characteristic pattern of bands, indicating the prescence of a particular protein. This is shown in a visual graph which shows where their is a lot of particular protein. Where their is a cancer of plasma cells, only one type of antibody is produced, termed polyclonal. Their are also 2 other types, with different characteristics. My problem is that my cryo test showed all 3 types.
This absolutely scares me to death.
My lab work shows the 3 types with %'s. This is why I am trying to find out an average amount for each type? I cannot seem to find any history on this?
Their is a Plasmaphoresis which removes the toxic elements from the blood & I am assuming this would follow the above test.
Anyhow, I am going back to Shands as the test has to be done in a Hospital lab, which makes me wonder about my cryo test being handled at Quest labs?
Thanks to all for your input & all is appreciated very much,
Sandy
Hey there Sandi. Just thought I'd let you know my email addy if you want it that is;
***@****
In case you wanted to yack off the boards.
***@****
In case you wanted to yack off the boards.
You were right about the plasmapheresis. My Hepatologist phoned today and informed me of this. I am not sure if I overheard him wrong or what. Sometimes I feel like I only catch half of what is said.
He spoke directly to Dr. Nelson, Chief of Hepatology at the University of Shands teaching hospital in Gainesville. Dr. Nelson agreed to see me and pursue the test, if my insurance appeal goes through. He did tell Dr. Johnson that it is incredibly expensive. So, we really don't know what his version of incredible is. Coming from a Doctor, I am sure that it must be out of sight! I did win an appeal to go to Shands which is out of network once, so I can only hope that they approve this appeal.
Dr. Johnson did say that the procedure involves filtering the blood to remove the plasma and once it is removed, fresh plasma, or a plasma subsitute??, is added back to the blood and returned to the body.It actually removes autoantibodies from blood.(toxins or metabolic substances from the blood.). Autoantibodies are proteins found in the plasma that mistakely attack your own bodies tissues.Several treatment sessions per week for two weeks or more. Of course a whole lot of side affects.
It appears to me that it's worth a try to resume some of my body movement back. I think it is used as a temporary or band-aid treatment, but that's fine with me, as I am only buying time now.
We are also looking at a liver transplant, as I have been told that it would take a period of 5 yr's for my liver to get as bad as it is now, with a transplant.
Lots of thinking and praying to do, but whatever the decision, at least it's a decision.
E-mail has still not come through-it is11:30 pm, Wed. eve.
Take care-Sandy
He spoke directly to Dr. Nelson, Chief of Hepatology at the University of Shands teaching hospital in Gainesville. Dr. Nelson agreed to see me and pursue the test, if my insurance appeal goes through. He did tell Dr. Johnson that it is incredibly expensive. So, we really don't know what his version of incredible is. Coming from a Doctor, I am sure that it must be out of sight! I did win an appeal to go to Shands which is out of network once, so I can only hope that they approve this appeal.
Dr. Johnson did say that the procedure involves filtering the blood to remove the plasma and once it is removed, fresh plasma, or a plasma subsitute??, is added back to the blood and returned to the body.It actually removes autoantibodies from blood.(toxins or metabolic substances from the blood.). Autoantibodies are proteins found in the plasma that mistakely attack your own bodies tissues.Several treatment sessions per week for two weeks or more. Of course a whole lot of side affects.
It appears to me that it's worth a try to resume some of my body movement back. I think it is used as a temporary or band-aid treatment, but that's fine with me, as I am only buying time now.
We are also looking at a liver transplant, as I have been told that it would take a period of 5 yr's for my liver to get as bad as it is now, with a transplant.
Lots of thinking and praying to do, but whatever the decision, at least it's a decision.
E-mail has still not come through-it is11:30 pm, Wed. eve.
Take care-Sandy
It's Thur morning, 1:30 AM on the west coast. This time I didn't hit reply, but started a new e-mail.
This reminds me, there used to be a girl here named Cuteus, and we tried for several days to establish contact. Something kept going wrong, but we finally straightend it out in the forum, just like we are doing now.
Let's see if you got it.
I can't comment on your situation at the moment, because the only thing I know about you is that you have cryo, failed tx and have advanced fibrosis.
You have not run out of options, not yet. Hopefully you have good insurance.
Ina
This reminds me, there used to be a girl here named Cuteus, and we tried for several days to establish contact. Something kept going wrong, but we finally straightend it out in the forum, just like we are doing now.
Let's see if you got it.
I can't comment on your situation at the moment, because the only thing I know about you is that you have cryo, failed tx and have advanced fibrosis.
You have not run out of options, not yet. Hopefully you have good insurance.
Ina
First let me say welcome to the forum.
Unfortunately you have given so little information about yourself, nobody can answer you.
What's your cryocrit, what type cryo, how many times have you tx, did your viral load go down, did you ever become neg during tx, are you cryo symptomatic, etc etc. Lots and lots of info needed to make an informed recommendation.
Ina
Unfortunately you have given so little information about yourself, nobody can answer you.
What's your cryocrit, what type cryo, how many times have you tx, did your viral load go down, did you ever become neg during tx, are you cryo symptomatic, etc etc. Lots and lots of info needed to make an informed recommendation.
Ina
You put out this big SOS to HR, Foreseegood, etc, yet don't come back to this post.
But you are writing plenty at other posts....are we supposed to take your cry for help seriously?
Ina
But you are writing plenty at other posts....are we supposed to take your cry for help seriously?
Ina
I am going to attempt to send again-Maybe it's just me and the fogginess I am in. Please let me know if you get this one.7:30 PM. Tues.
Sandy
Sandy
Don't sweat it, we are cool.
It's a small "L" in the middle, so far no message.
Plasmapheresis has been around for many years.
There is no range for cryocrit that I am aware of, normal is undetected.
Nothing wrong with testing right at the Hospital, but if done correctly, meaning the sample having been placed in a warm bath for 30 min, and prepped for shipment, should be fine for a number if days.
I only send my sample to Nichols (Quest) .
I would think it is possible for a hepc patient to test pos for type II and III cryo, but not for Type I. The underlying diseases that could cause type I does not include hepc.
The amount of cryocrit does not correlate with symptoms.
I know way too little about your condition to go on further. Try again to send an e-mail.
Cryo is one hell of a stinker.
Ina
It's a small "L" in the middle, so far no message.
Plasmapheresis has been around for many years.
There is no range for cryocrit that I am aware of, normal is undetected.
Nothing wrong with testing right at the Hospital, but if done correctly, meaning the sample having been placed in a warm bath for 30 min, and prepped for shipment, should be fine for a number if days.
I only send my sample to Nichols (Quest) .
I would think it is possible for a hepc patient to test pos for type II and III cryo, but not for Type I. The underlying diseases that could cause type I does not include hepc.
The amount of cryocrit does not correlate with symptoms.
I know way too little about your condition to go on further. Try again to send an e-mail.
Cryo is one hell of a stinker.
Ina
Wow! You have made such a valid point that it scares me. I didn't realize that I wasn't answering you, I thought that I had. I am indeed serious & have spent most of yesterday trying to make all the correct calls to attempt getting this procedure done. You know it's the same with everything,a note from the Doctor stating why I need the test sent to my caseworker at the insurance company, who then must make an appeal to the powers that be for the answer, then a Doctor to do the test, accompanied by a prescription from my Hepatologist. I talked to Shands & the info I got was pretty vague, as I guess it is fairly new in the treatment of cryo, if you can't take the Chemo. According to them, the lab work must be done in a hospital laboratory. It is then checked as to amount, volume placement, etc., etc., to make sure the procedure is alright to do?
I am so sorry that I did not post back on this post, I really thought that I had. I did try to personally e-mail you twice and they both went through-so I don't know what happened to them. Is the l a small L or is it the capital I?
Again, please accept my apology. I would never write anything on here that wasn't the truth, as I have been told.
Sandy
I am so sorry that I did not post back on this post, I really thought that I had. I did try to personally e-mail you twice and they both went through-so I don't know what happened to them. Is the l a small L or is it the capital I?
Again, please accept my apology. I would never write anything on here that wasn't the truth, as I have been told.
Sandy
So what would be the recommendation for a 52 yo male; geno 1a, cirrhosis, prior nonresponder, prior relapser, with elevated sed rate and elevated glubulins?
By the way, this is my first post here... Thanks/sorry to all for being here.
By the way, this is my first post here... Thanks/sorry to all for being here.
An estimated 40% of hepc patients have cryoglobulinemia. Most patients are not aware of it, because their doctors don't test for it.
Cryo can be symptomatic or asymptomatic, most people are asymptomatic.
There are 3 different types of cryo. The one that is most frequently associated with hepc is type II mixed cryo, and sometimes also type III.
People with type II cryo also have a pos RA, which does not mean they have or ever will get Rheumatoid arthritis.
Treating symptomatic type II cryo without tx the underlying cause (usually hepc) is going to result only in temporary relief.
A hepc patient undergoing tx must be cryo neg on several tests before discontinuing tx, or will relapse.
I hope this answers your questions.
Have you tested pos for cryo?
Ina
Cryo can be symptomatic or asymptomatic, most people are asymptomatic.
There are 3 different types of cryo. The one that is most frequently associated with hepc is type II mixed cryo, and sometimes also type III.
People with type II cryo also have a pos RA, which does not mean they have or ever will get Rheumatoid arthritis.
Treating symptomatic type II cryo without tx the underlying cause (usually hepc) is going to result only in temporary relief.
A hepc patient undergoing tx must be cryo neg on several tests before discontinuing tx, or will relapse.
I hope this answers your questions.
Have you tested pos for cryo?
Ina
Hi Sandy
I keep reading your posts in regards to cryo.
There are only a few on this board that have or had HCV related cryo. Missmiss and myself are the only ones in the past 18 month reporting to be undetected for hep and cryo. There was a guy named twotells who also made it, but that is a number of years ago.
Cryoglobulinemia is difficult to explain, and difficult to understand.
You are rightfully very concerned about it.
I offered missmiss long time ago my e-mail, and she took me up on it, and I have been pleased to see her pass on some of that info.
We both don't spend much time here anymore, and I feel bad for you trying to look for answers but only getting so few.
If you want you can contact me here: You write my 3 letter forum name twice, connect it in the middle with an l and send it to the earth that link to a net.
Make sure to have the word cryoglobulinemia in the headline.
Ina
I keep reading your posts in regards to cryo.
There are only a few on this board that have or had HCV related cryo. Missmiss and myself are the only ones in the past 18 month reporting to be undetected for hep and cryo. There was a guy named twotells who also made it, but that is a number of years ago.
Cryoglobulinemia is difficult to explain, and difficult to understand.
You are rightfully very concerned about it.
I offered missmiss long time ago my e-mail, and she took me up on it, and I have been pleased to see her pass on some of that info.
We both don't spend much time here anymore, and I feel bad for you trying to look for answers but only getting so few.
If you want you can contact me here: You write my 3 letter forum name twice, connect it in the middle with an l and send it to the earth that link to a net.
Make sure to have the word cryoglobulinemia in the headline.
Ina
kit i sorry for your complexities, which i don't experience but do appreciate your post, you seem very knowledgeable. and i will follow tis and future posts
eisben - please explain what do you mean only " a few heppers post tx w/ und and cryo.. i know very little, do people come to tx hep c w/cryo or is it brought on by tx (or both?)
eisben - please explain what do you mean only " a few heppers post tx w/ und and cryo.. i know very little, do people come to tx hep c w/cryo or is it brought on by tx (or both?)
hi, I forwarded your post to HR, he has to be okay with talking about a thing, then he gets back to me, in which case, I'll get back to you...(when he's not busy or in town) then I'll give you a way to contact me...in fact, Ina just gave out her email in the other post, you can contact her, and that way she'll put me in touch with you...HR takes a long time to get back to me sometimes, he's flying around the country going to conferences, business meetings, etc...but I'll get back to you with him, when he gives me the go ahead, I'll give you his email...sorry it takes so long sometimes...take care...
Hi Sandy. Wow you are doing your homework. This cryoglobulin issue is complex. Here is a link with some information on the blood test for the presence of cryoglobulins, and it may shed some light on why your doctors doubt the results of the Quest test and want to do the test in a lab when you are present. Apparently the procedure has to be done very quickly after the blood sample is taken, on site, so the sample cannot be sent away to another lab.
When I had my blood drawn for the test a couple weeks ago I questioned the lab tech about it and he seemed to think it was ok that they drew the sample, did the first part of the procedure, then sent it out overnight across the country to another lab for the completion of the procedure. I have doubts and wonder how accurate my results are.
I know you are scared about this, but it is good news that you are near a lab that can do the tests and procedures properly.. I am too because, even though I do not have nerve pain in my arms or legs (peripheral neuropathy) I have had abnormal images in a brain MRI. HCV-related cryoglobulins in the central nervous system (brain and spinal cord) are very rare, but it happens. So like you, I am trying to make sense of the technical literature about all this. I live in a relatively rural area. So hang in there sweetie, and keep us informed.
Sandy, sometimes cryoglobulins cause kidney problems (glomerlulonephritis) and/or skin problems (palpable purple purpurea. Really :) Do you have either of those?
Kit07
P.S. Hey folks I know this is a spooky issue, and I hesitate to belabor it on a support site when people are under the influence of tx and prone to anxiety, but I think there is much to learn.
Here is a bit of info quoted from the cryoglob site. I don't know how reliable the source is.
http://dynamics.org/~altenber/cryo/Cryocrit.html
"Because cryoglobulins are thermally unstable, any test that measures the quantity of cryoglobulins in the blood must be performed immediately at the place where the blood is sampled. Tests to measure cryoglobulins can not be sent out to another lab. Even if an outside laboratory claims to measure cryoglobulins, any samples sent to it will be invalid because they cannot be processed according to the necessary steps (below). In that case, not only will the quantities of cryoglobulins measured be incorrect, but the test may completely fail to even detect cryoglobulins. Without accurate measurement of cryoglobulin levels, no correct assessment can be made of a patient's treatments.
Therefore, cryoglobulinemia patients must be sure that the lab where their blood is drawn can itself do the measurement tests properly. Unfortunately, because of the rarity of cryoglobulinemia, most physicians are unaware of the requirements for valid cryoglobulin tests. Fortunately, the Cryocrit test can be performed with the equipment that most any medical testing laboratory has, and should cost only about $20 per test. The only item that may not be immediately available is a 37
When I had my blood drawn for the test a couple weeks ago I questioned the lab tech about it and he seemed to think it was ok that they drew the sample, did the first part of the procedure, then sent it out overnight across the country to another lab for the completion of the procedure. I have doubts and wonder how accurate my results are.
I know you are scared about this, but it is good news that you are near a lab that can do the tests and procedures properly.. I am too because, even though I do not have nerve pain in my arms or legs (peripheral neuropathy) I have had abnormal images in a brain MRI. HCV-related cryoglobulins in the central nervous system (brain and spinal cord) are very rare, but it happens. So like you, I am trying to make sense of the technical literature about all this. I live in a relatively rural area. So hang in there sweetie, and keep us informed.
Sandy, sometimes cryoglobulins cause kidney problems (glomerlulonephritis) and/or skin problems (palpable purple purpurea. Really :) Do you have either of those?
Kit07
P.S. Hey folks I know this is a spooky issue, and I hesitate to belabor it on a support site when people are under the influence of tx and prone to anxiety, but I think there is much to learn.
Here is a bit of info quoted from the cryoglob site. I don't know how reliable the source is.
http://dynamics.org/~altenber/cryo/Cryocrit.html
"Because cryoglobulins are thermally unstable, any test that measures the quantity of cryoglobulins in the blood must be performed immediately at the place where the blood is sampled. Tests to measure cryoglobulins can not be sent out to another lab. Even if an outside laboratory claims to measure cryoglobulins, any samples sent to it will be invalid because they cannot be processed according to the necessary steps (below). In that case, not only will the quantities of cryoglobulins measured be incorrect, but the test may completely fail to even detect cryoglobulins. Without accurate measurement of cryoglobulin levels, no correct assessment can be made of a patient's treatments.
Therefore, cryoglobulinemia patients must be sure that the lab where their blood is drawn can itself do the measurement tests properly. Unfortunately, because of the rarity of cryoglobulinemia, most physicians are unaware of the requirements for valid cryoglobulin tests. Fortunately, the Cryocrit test can be performed with the equipment that most any medical testing laboratory has, and should cost only about $20 per test. The only item that may not be immediately available is a 37
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