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Author Topic: Cryogbulinemia  (Read 8418 times)

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Offline Worried-man

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  • Posts: 5
« on: August 12, 2015, 05:24:35 pm »
Hi the reason I'm writing this post is for the people who have symptoms after negative tests. I had 2 negative rna tests negative antigen and negative antibody after a supposed non risk of being bitten on the lip by a person who turned out to be hepc positive. My doctor basically dismissed me because of test results. Then on top of the symptoms I seen doctor about I started to developed lots more worrying symptoms the end joints in my fingers ached both knees and my big toes along with itching all the color began fading from my nails with the capillary becoming reddend then a purplish net like pattern appeared down both my sides this pattern appeared in both hands and feet along with numbness and tingling the blotchy pattern fades away on elevation of limbs I also had blurred vision at times and a rash of flat red dots on both my lower legs and muscle pains and fatigue. Instead of going back to a doctor who made me feel like I was wasting his time I booked a private consultation with a heptolagist  he listened to my symptoms viewed the blotching net pattern that fades Upon elevation seen my fading finger nails and everything else. Although not yet proven he suspects the blotching net like rash is livedo reticularis a condition caused by cryogbulinemia he also says the knee joint finger joints and toe aches in certain joints along with the numbness and tingling in my hands and feet is suspicious of cryogbulinemia he says that taking everything into consideration without testing and exposure to a definite hep c positive person he suspects I could indeed have hepatitis c it's a possibility that the negative tests where false negative because cryogbulinemia. I'm not writing this to scare anybody I cried after my negative results thanking god I was OK yet the symptoms kept coming so many things I didn't even mention like dermatitis bleeding gums stomach problems muscle pains the list went on and on. To anybody who has symptoms and your told believe your test results there is factors than can influence all these tests like cryogbulinemia the cryoglobulins precipitation occurs during the normal procedure for storing samples because of temperature that traps the hep c RNA and antibodies in the clot and dissolves out of the sample Upon rewarming. To anybody who is suffering symptoms after negative results I would suggest a  test to have a hundred percent faith in your results. i thought after my tests I was in the clear I cried with relief now it looks as if all along my test results where falsely negative.

Offline KimInTheForest

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  • Posts: 1,972
  • Believe in yourself
Re: Cryogbulinemia
« Reply #1 on: August 12, 2015, 05:55:54 pm »
Thanks for sharing your story, Worried Man. Is there a test you can take that will conclusively confirm whether you have Hep C since the existing tests seems to be faulty if cryoglobulinemia is also involved?

keep us posted!
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Worried-man

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  • Posts: 5
Re: Cryogbulinemia
« Reply #2 on: August 12, 2015, 08:17:45 pm »
I've moved and don't have a doctor at the moment. I've been emailing around private hospitals to see if anybody can do the rna test that is treated by keeping sample warm to prevent cryoglobulin precipitation I've read somewhere it can be done. I'm going to have to travel to take a normal cryoglobulin test they can't do it at the private hospitals in my country.  only if your normal doctor refers you to the normal public hospital but like I said I've not got a doctor Just now n think by the time I register and wait to be referd I'd be better off having it done privately. I can find a place to do the cryoglobulin test but haven't got a reply about the rna part I find it hard to explain to them about the test because I've only read bits n pieces about it. I read this snippet on a site.

Polymerase chain reaction is widely used in clinical practice as a reliable assay for the detection and quantitation of hepatitis C virus RNA in serum and tissue. Due to the high sensitivity of the test, both false positive and false negative results can occur The presence of cryoglobulins in serum samples represents a variable that can influence the result of a polymerase chain reaction assay lending to false negative results. In cases of hepatitis C virus infection associated with cryoglobulinaemia, it is extremely important to very carefully process the samples to be tested in order to avoid cryoglobulin precipitation and the consequent removal of the virus from the sample.

nobodys replied back to emails saying they could do it. its hard to even explain to them what I mean. Looks like my only hope is to get a doctor and wait to be refferd to a virology department.

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: Cryogbulinemia
« Reply #3 on: August 29, 2015, 12:08:16 pm »
Worried Man,

Hope your situation is resolved by now.  In this day and age most of us are forced to do our own investigations into our health issues and along the way we become very informed.  The question might be asked; was this act of having been bitten by a carrier of hep-C traumatic?  Also, it appears that the aftermath of potential cryogbulinemia and the physician writing you off was a difficult situation.  Just a thought here; your symptoms were immediate after the human bite. Consider the traumatic/emotional/angst element in your search.  Books by Peter Levine are helpful.  The entertainment media has produced lots of frightening imagery of apocalyptic zombies and such.  In these portrayals are always a "virus" that is passed on by a "bite." (which may have nothing to do with anything, however, an interesting observation).

I feel bad for you and your ordeal.  I am sure you will get to the bottom of it and you are going to be OK.  I hope you feel supported, as your situation is a very unusual one.  Take care...and don't worry so much.  :D peace   
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
25wk-SVR! 19/18

Offline Worried-man

  • Member
  • Posts: 5
Re: Cryogbulinemia
« Reply #4 on: August 29, 2015, 05:24:51 pm »
I'm no further forward. Thanks for reply. Looking back I never really had any symptoms straight away after it happened it took over a year the only one thing was being floored by what I thought was a flu I was bed bound for a few days that was maybe couple of months later at this point I didn't even know the person was a carrier i had no idea I found out just about a year later when she was tested positive I still didn't think much of it at the time it wasn't a huge bite it was during snogging thing is she ment to bite me she was a drug user I knew that and also an ex prostitute I never knew about things like hepatitis I had one partner before her n that was it. she obviously was more clued up than me and still decided to bite my lip. As I said I didn't think anything of it at the time it wasn't a big cut we kept kissing after it I was drunk. I can only assume she had blood in her mouth somehow her gums or maybe from her tounge stud. I didn't sleep with her and never dreamed I could have caught anything to be honest I'm going thru complete hell its just one thing after another i appreciate everybody here is suffering. I'm having so many manifestations I can't get any answer I can't take much more I'm seriously better off dead. I'm worried somehow my daughters caught it by somehow coming into contact with my blood I'm haunted day and night. If I could manage I'd honestly just commit suicide I've tried n failed it just want it all to be over.


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