"Mixed cryoglobulinaemia, when not secondary to other well-defined immunological disorders, is commonly associated with hepatitis C virus (HCV) infection. However, a minority of cases lack evidence of HCV infection and are, therefore, defined as 'true essential' mixed cryoglobulinaemias. We thoroughly investigated three such patients to determine the aetiology of this disorder. Antibodies to HCV (anti-HCV) and HCV RNA, detected by sensitive enzyme-linked immunosorbent and polymerase chain reaction assays in serum and in concentrated cryoglobulins, were repeatedly negative in the three patients. Despite the lack of evidence for HCV infection, two of them were still treated with interferon a-2a assuming unrecognized viral infection. Both patients demonstrated excellent clinical and laboratory responses, but cryoglobulinaemia relapsed after the withdrawal of therapy. At the time of relapse, HCV RNA genomic sequences were detected for the first time in the cryoprecipitates of both patients. In the third case, HCV RNA was demonstrated for the first time during a flare of cryoglobulinaemia coincident with varicella infection. In all three patients anti-HCV antibodies remained negative throughout follow-up. We conclude that some apparently 'essential' forms of mixed cryoglobulinaemia can be caused by occult HCV infection. Interferon therapy can be taken into consideration in such HCV-negative cases."
Just more evidence that there is more HCV infection, in various forms, out there than anybody really understands. To have repeated negative test results both to sensitive PCR tests, and HCV antibody tests for all three of these patients really indicates just how elusive the virus might be. I continue to believe that many people may carry a form of the virus which is not readily detectable, and is not causing a visible, chronic blood/liver infection. I will bet you that there are other disorders that also may be provoked by HCV, which the medical community is not yet aware of, which if the persons were tested , might also demonstrate the same 'occult' response, with negatives on initial HCV tests. More and more I am beginning to think that there may be a large population of people out there who carry a 'dormant' version of the virus, and are undetected on HCV testing.
And If doctors aren't going to test people for hep C, then they should at least test for ANA. It seems ANA shows up if your immune system is being overly stimulated. Just as you describe "pseudo" lupus as your dx ,,,,I was also told that if I had a higher ANA that it might be "lupus," (before dx of hep)...BUT what the doctors are ignoring is that they don't look deeper into what IT is that was/is stimulating our immune system? Okay granted the doc that found ANA wasn't a GI doc, but still and all you would think there would be an interest into finding out, instead of the 'wait and watch' mode(for lupus.) Luckily for me she was a holistic internist and ANA was part of her routine blood test. Come later to find out I have hep,,,but NOW at this present time, I would think that I should have another ANA test to see if my immune system is STILL being 'over stimulated." IF I am SVR then that would mean IMO that either I have CRYO or I have 'OCCULT virus going on or both. To me it makes sense that if ANA is evident of an 'overly stimulated' immune system, YET you don't have lupus or any other autoimmune disease THEN WHY is your immune system STILL being over worked AFTER tx?? Most likely Occult IMO or Cryo or both. Just guessing though.
Tx is not the greatest thing for our immune system, but having the virus keep our immune system on super charge is not either. IMO I think we also should have our spouses and family members tested for ANA and maybe even Cryo.I had my husband tested for Hep C came out negative thank God, but I am not convinced he doesn't have Occult. There is no way that I will ever believe that a person can have unprotected sex with a woman who has hep and walk way without contracating it. Doctors can show me all the studies they want. These same doctors tell hep infected women its okay to breast feed as long as your nipples aren't cracked and from the other side of their mouth they say don't let your husband use your toothbrush. Oh so the breast has to be dripping "visible" droplets of blood for it to be a risk and yet the toothbrush only needs an "invisible-microscopic" particle to contract hep. And to top it off everyone picks and chooses what they want to believe or what makes them feel good. But as usual I got off subject. I do plan on having my husband checked one more time for hep c and also now for ANA. I'm sure that will go over like a lead ballon.. I'm supposed to "think positive." If thinking positive helped cure the hep, I wouldn't have gone thru tx. But he means well.
I agree entirely with your commentary. I have all the same concerns, and am quite certain that some of the 'strange' symptoms that have developed in my wife, (and grown kids), over the past several decades are from this occult transmission of the virus. Yes, they are negative on HCV antibody tests, but we are now seeing how meaningless some of these tests can be. And, even if they do detect most of the HCV blood/liver, chronic active infections, then what if there is this other, occult form, that cannot be detected by conventional testing???
My real fear is that if all the intimate contacts, and sexual relations, family members, etc. of all the HCV infected out there were to be tested for Cellular Immune Responses to HCV, I would bet you would see a pretty stunning, and frightening result. Some laugh at this line of exploration, and the occult infection/ transmission issue, but with every passing year I see more research supporting these possibilities. AND in the general population, every year we see increasing numbers of people developing 'unexplained' syndromes, or illnesses disproportionate to the normal expected distribution percentages.
I think we are on to something very real, but the medical world will take awhile to open their eyes and see the patterns. Research findings will likely drive the continuing discovery of this 'occult'
virus issue, and will force a closer look at what it might mean to our population. I am also AMAZED at how the doctors can so easily slide over or blow off the elevated ANA results in so many of us out there, both before tx, and after SVR. I gusee if they have not given it a name yet, and it doesn't exactly fit one of their per-existing disorder profiles (like Lupus, RA, etc), then it must not be an illness!!!! What sublime logic! I don't know what it is, so it can't be anything! Wow!
I'm glad you agree. I agree with everything you said too. I'll tell you what,,I think that even MS might be somehow connected to HCV-probably occult. There are just way too many people all of a sudden being dx with MS. Why now? Years ago you would hear of a case now and then, but now everytime I turn around I hear of someone who was dx with MS, or someone who knows someone who was just dx. There are just way too many cases. We are told we have an HCV epidemic and at the same time doctors see a rise in autoimmune diseases. It makes me wonder. I could be totally off base but I wish that for starters every doctor would test EVERY patient for HCV and ANA. That might help in better understanding modes of transmission, if nothing else.
Add to the list the perplexing increase in Diabetes Type II, and Fibromyalgia, Metabolic Syndrome....etc. And they say its our diets....pollution....unseen toxins....
Well I bet in the 1930's the diets were MUCH worse, and pollution and chemical toxins were out of control. But, now, in our sanitized, non-smoking, pollutant free, low-cal, high supplement world, we are seeing the rampant increases in these diseases. I think there has to be a catalyst! And a silent, undetectable HCV might be one of those catalysts.
Yes you're right.
I took a peek in over at the Neurology forum here at MH. You should read some of those posts - makes me wonder. Some of those people have similiar symptoms as those who have hep and now that we know that hep can and does cross BBB.....
My husband is going to pull me by my ear if I stay on this computer. We finished eating and here I sit again. I have to go and ask him about his day again so he doesn't feel ignored. He's right though, he hasn't had any real attention since I heard the words "You have Hepitius C."
i found the above article quite interesting and have also read other excerpts that cite the same finding.
DD " I bet there are other disorders that also may be provoked by HCV."
so right on. often when we get the H diagnosis we concentrate on liver histology. but in fact the extra hepatitic effects of hcv are pathologic to many organ systems, difficult to diagnose, and may persist after SVR. after reading some others continuing and escalating effects after chronic HCV and INF/riba tx i wonder if the EHM are sometimes persistant, exacerbated by circulating immunocomplexes, or may be a separate disease entity, or the result of occult hcv?
an article i found interesting might shine a light into some of these EHM and some of their sx.
"UP TO 40-70%OF PATIENTS INFECTED WITH HCV MIGHT DEVELOP AT LEAST ONE EXTRA HEPATIC MANIFESTATION DURING THE COURSE OF THEIR DISEASE.
LYMPHOTROPISM OTHER THAN HEPATIC TROPISM IS RESPONSIBLE FOR EHM.
the article then goes on to describe some of the more recognized EHM of chronic hcv. while i am sure many of us have heard most of these i wonder how many of us receive the right diagnostic follow up when persistant or new sx occur, during infection, during tx, and after SVR.
it is interesting that our hepc docs give the big ok after svr, it is a wonderful milestone! but when a sequela of problems show up afterwards are unable to help us...along with the primary care docs who are not well versed in HCV alone the EHM.
another article of interest about the persistance of +HCV antibody after SVR
HCV ANTIBODY APPEARS TO CONTINUE TO DECREASE DURING THE 10 YEARS AFTER ERADICATION OF THE HCV BY IFN THERAPY.
i wonder if viral occult presence left after SVR continue to stimulate immune response to deal with occult virus in extra-hepatitic compartments as evidenced by by measuable antibodies 10 yrs after SVR and the presence of positive and negative RNA strands in PBMC's. this phenonmena may suggest that indeed our immune system contimues to fight the presence of hcv long after SVR. perhaps this may explain why immunocompromised individuals may convert to active infection after SVR?
just some of my thoughts. maybe some of the immunopathologies after IFN are not related so much to IFN but to EHM. HCV MC11 is a possible example of this.
my hope is that we all may find excellent medical care during chronic HCV and afterwards and most of all an accurate diagnosis. so much more research is needed here!
You just hit it right on the nose! I think there is much to be uncovered regarding the EHM and relationship to persistent HCV after SVR. I have always suspected that many of our extrahepatic symptoms were caused by HCV acting directly on other compartments, organs, systems, etc. The doctors focus only on blood levels/loads, and liver pathology and function, thus missing the other targets of the virus, like the CNS, Brain, connective tissue, cardio-vascular system, gastric organs, etc. I am really concerned that the tendency to give the newly minted SVR's a handshake, a wink, and a "have a happy life" salute is creating a false sense of security, and finality in both those who have treated, and in the doctors themselves. They really don't want to hear too much about problems after SVR, as if, hey we did our job, now you must have something else causing your problems.
My bet is that the remaining low level virus is in many ways as damaging and pathalogic as the former full scale blood infection. Either its the virus, or the after effects of the interferon...but I am beginning to think that the interferon may be much less the culprit. The antibody issue is also a telling marker. Something is still around causing immune system antibody production, and probably causing damage as well. Your comments are welcomed, and need to be considered by the medical community as well as forum members. We need to help them find the answers.
"My husband is going to pull me by my ear if I stay on this computer. We finished eating and here I sit again. I have to go and ask him about his day again so he doesn't feel ignored. He's right though, he hasn't had any real attention since I heard the words "You have Hepitius C." ""
It's amazing how obsessed we become after diagnosis. This site, clinical options, hcv advocate, janis - the list goes on, and sometimes it's hard to get anything done.
I have an autoimmune disease, a cutaneous form of scleroderma called morphea. It started about a year and a half before my diagnosis of hcv - an awfully long time, in my opinion. The dermatologist did a biopsy, prescribed lotions and creams, sent me to a rheumatologist, who ordered blood tests, but nobody thought to give me a test for hcv. By the way, my ANA is normal. Only when my ALT levels remained high for 6 months did anybody guess that hep c might be the culprit.
Treatment made the morphea flare up to such an extent that I had to stop early, so my theory is that my own naturally produced interferon was waging a fight against the virons, but went after my skin instead. Then the Peg-intron, which was stronger, attacked the weakened dermal cells. I think it's the interferon. HCV isn't the only occult virus; chicken pox and polio persist but usually stay dormant; we just live with them. So I'm not too worried about hidden hcv. What I do worry about is doing something that could reactivate over-secretion of interferon and cause further EHM's.
IFN was/is my theory on many of the ExtraHepatic manifestations of HCV, many of which can and do occur b4 Tx. I am guessen that catching the flu isnt high on your list of viruses to catch.
Limiting over secretion of IFN may not be that easy.
I agree totally with you on this.
What timing, I read this as I have been up since 2am. I hurt my back and have been on steroids and everynight I wake up drenched with insomnia. Good thing today is Friday.
It seems that not everyone with autoimmune tests positve for ANA, which can make it kind of confusing - at least to me it does.
You're right, we do become obsessed after the dx. I know that for sure. I have a few more tests that I want to repeat and then I will drop thinking about all this or else knowing me,,,when I am 93 years old on my death bed with my husband sitting by my bedside stroking my forehead, I will probably say the words," "See honey, I told you so,,,I knew this Occult HCV would kill me someday."
Hope all is well with you.
Sjögren’s syndrome: Between 40% and 70% of patients with this condition have a positive ANA test result. While this finding supports the diagnosis, a negative result does not rule it out. The doctor may want to test for two subsets of ANA: Anti-SS-A (Ro) and Anti-SS-B (La). The frequency of autoantibodies to SSA in patients with Sjögren’s can be 90% or greater.
Scleroderma: About 60% to 90% of patients with scleroderma have a positive ANA finding. The most severe form, diffuse, is associated with an ANA centromere pattern.
A positive result on the ANA also may show up in patients with Raynaud’s disease, rheumatoid arthritis, dermatomyositis, mixed connective tissue disease, and other autoimmune conditions.
A doctor must rely on test results, clinical symptoms, and the patient’s history for diagnosis. Because symptoms may come and go, it may take months or years to show a pattern that might suggest SLE or any of the other autoimmune diseases.
A negative ANA result makes SLE an unlikely diagnosis. It usually is not necessary to immediately repeat a negative ANA test; however, due to the episodic nature of autoimmune diseases, it may be worthwhile to repeat the ANA test at a future date.
Aside from rare cases, further autoantibody (subset) testing is not necessary if a patient has a negative ANA result.
Ladybug,,sorry to hear that you hurt your back. Back pain is the pits, such a nightmare. I hope you feel better soon. Thank God you have a good hubby. Good husbands are needed when we have back pain. They are also needed to hang pictures on the wall and to take out the garbage, other than that we don't need men at all.Kidding of course. Thanks for the article. Yeah, just too many people getting MS, very strange.
I drank way too much coffee and I feel like am about ready to fly across my living room. I feel buzzed, but coffee seems to always make me feel good when I overdose on it...
I hope you feel better soon.
Take care bug.
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