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Article on Occult/Persistence and Other Posts

Here's a good, comprehensive article by one of the leads (Pham) on research into occult Hep C:

<a href="http://www.findarticles.com/p/articles/mi_m3230/is_2_38/ai_n16084704">Occult hepatits C virus persistence: identification and characteristics</a>


(from the article):

"<i>Although HCV is considered to be primarily hepatotropic, accumulated evidence clearly indicates that the virus also invades and replicates in the immune system. In fact, the presence of both HCV RNA positive and negative strands has been demonstrated in lymphoid cells in both in vivo and in vitro settings. For example, T cells, B cells, monocytes, and dendritic cells from patients with chronic hepatitis C have all been shown to carry HCV genomes. (2), (10-12) Most recently, by applying assays of superior sensitivity mentioned above, replication of HCV has been seen to persist in lymphoid cells for years after spontaneous recovery or a sustained virological response to IFN-alpha/Ribavirin therapy. (1-3) In addition, low levels of HCV RNA in lymphoid cells have been detected in a significant proportion of patients with persistently elevated liver enzyme levels of unknown etiology. (13), (14) Along the same line, susceptibility of T and B cell lines as well as primary human T cells and macrophages to HCV infection have also been documented. (15-18)</i>"
42 Responses
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Avatar universal
Which was the study that suggested that the occult/persistence replicated? If I read my doc correctly last time, he inferred that the viral remants found were not replicating.
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Avatar universal
TN said:When I asked him about the possible implications he said, "who knows? No firm research yet". When I pressed him about keeping a closer eye out even though I'm SVR, he agreed that I should see him every six months - with a full battery of testing done over the course of each year. When I asked about a theoretical attempt to tx it down the road with some future, unknown drug - he said that docs and insurers would balk at it since "SVR" is the accepted "cure". And he suggested that what needs to be weighed most in that type of tx'ing is the possible physical costs of attempting to wipe out every last viron - since any drug regime will come with some potential consequences.
----------------------------------------------------
Thanks for the suggested print-out for my doc! Hopefully, there will be time for him to go over.

From what my doctor has  told me so far, I wouldn't be surprised if what he says is almost identical to what your doctor told you. To me, your doc's words sound reasonable and probably more or less "conventional" wisdom among many leading hepatologists. As future treatments, etc, while he voiced some reservations, the implication is that if new evidence warranted treatment, he would of course do so. Again, I would imagine my doc would have the same point of view -- and would jump on any new treatments (even for SVRs) once he was convinced the benefits outweighed the risks.

I'll still try and have the discussion with my doc, but my question to you is -- did your doctor's statement above sound reasonable to you? Because it more or less reflects my thinking as well and we therefore may be more or less on the same page.

All the best.

-- Jim
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131817 tn?1209529311
I possibly got this HepC in the hospital.  I had an eblazion of the uterus (out patient) 10 years ago.  I went home and ended up back in the hospital with sepicemia, high fever, joints that hurt so much I could hardly move and red hands and blotchy.  They finally found very elevated liver enzymes and hep C.  Of course,  they say they didn't do it!  The anthesist looked pretty sleezy.  I was sick for a month and didn't have any symptoms for 10 years.

watch out for those instruments!
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Avatar universal
<u>jmjm530</u>

You may want to print out the pdf file that 'willing' linked to in post #32 above. It is the most up to date summary of all the research on occult so far - and includes plenty of references for further digging, should your doc so desire. It's the one I would bring to mine to: 1.) discuss occult with him and 2.) to see if he is up to speed, has an interest in or is merely dismissive of occult (not a good sign).

I talked about it with my doc about a year ago. At that time he said that occult Hep C had been speculated about then known of for a few years already.

When I asked him about the possible implications he said, "who knows? No firm research yet". When I pressed him about keeping a closer eye out even though I'm SVR, he agreed that I should see him every six months - with a full battery of testing done over the course of each year. When I asked about a theoretical attempt to tx it down the road with some future, unknown drug - he said that docs and insurers would balk at it since "SVR" is the accepted "cure". And he suggested that what needs to be weighed most in that type of tx'ing is the possible physical costs of attempting to wipe out every last viron - since any drug regime will come with some potential consequences.


<u>cuteus</u>

And, as far as any differences in "occult" vs. "post-SVR persistence", other than semantics I really don't see any. In one instance you have a group of patients who are serum cleared spontaneously. In the other they have cleared serum chemically - the end result being that both are now left with the same low-level "bugs". Researches may approach the groups/sub-sets differently for study purposes, but on a practical level both sets of patients are left in the same viral boat.

And, while some studies have shown occult not being present in all post-SVR or spontaneous clearer's, the Pham study above mentions this: "<i>However, when the cells, including those apparently negative for HCV RNA, were ex vivo treated with mitogens known to activate different immune cell subsets, e.g., phytohemagglutinin (PHA) to stimulate T cells, pokeweed mitogen (PWM) to induce B and T cells, and lipopolysaccharide (LPS) to activate monocytes and B cells, HCV RNA was detected in all of the individuals.(1), (2), (19)</i>".


TnHepGuy
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Avatar universal
Thanks to both of you for your further interpretation of the 'viral persistence' studies, and your explanations of the actual evidence that is amassing regarding the 'clinical significance' of this phenomenon.  The fact that a variety of potentially lethal illnesses (HCC, Lymphoma, etc.) are now being linked to post-SVR viral infection / or compartmentalized low-level infection, is enough to cause all the HCV doctors to drop the 'clinically insignificant' disclaimers when this subject comes up, and to start 'digging in' to the real challenge:  identifying how this post-SVR 'infection' really works, what it is capable of doing to us, and how it might also be addressed by therapies, in the future.

If they were able to develop successful therapies for the blood/ liver infection, you would think that pushing the science to discover just what might fully eradicate this virus, would be doable, even if difficult.

Regards to all.

DoubleDose
Helpful - 0
96938 tn?1189799858
This topic, different instance, was mentioned here a few weeks ago and got my attention. Since then, I had an appt. with a gastro who is going to do a colonoscopy and an endoscopy this month. I asked him then if the use of of unclean instruments and cleaning protocols were an issue in the clinic where he he scope. He had heard of such instances elsewhere and tried to assure me that all the celaning (including equipment enzyme spraying) is religiously adhered to. I guess it's a matter of trust that people and facilities follow the rules.  Just in case, I asked him to make sure that they do the endoscope (top down) before the colonoscopy (bottom up).  Don't want to have embarrassing bad breath from it.
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100019 tn?1335919717
As has been stated before it is soooo different for everyone.

My first couple weeks were livable.  Not pleasant, but if that was as bad as it got I could do it.

Week 6-12 I thought I would die.  Literally every day thought I was dying.  Heart palpitations, couldn't walk, breathe or anything.  got the thyroid regulated and felt better.

Had a few good weeks.  Weeks 23 - 30 (current) I've been sick every week.  Weekends are spent with fevers and body aches and pains that don't leave till Sun eve.  The last couple weeks the metal taste in chest and mouth along with GERD, has been particularly bad.

Fatigue and weakness lasting thru the week has been particularly bad.  

Panic attacks stopped a couple weeks ago.  Didn't lose any weight the first 24 weeks - lost 35 lbs since then.  

For me the sx's have been worse the second half of tx.  I hope they clear up soon.  I'd like to have one week of no sx's.
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Avatar universal
The article cited sort of sounds like the same thing that I have been hypothesizing , albeit my rationale is less scientific, for several years now.  
I really do believe there is much more than meets the eye regarding how this virus works, and where it 'goes' after successful tx (and before tx, for that matter).

My ongoing emphasis is for the research community to pursue this issue aggressively, to determine what, if any, health consequences this ongoing 'persistent infection' might have.  Issues like ongoing autoimmunity, lymphocyte related diseases, and so on, should be explored thoroughly.  We also need to understand why over 50% of SVR's seem to manifest the same pre-tx symptoms long after they are 'cured' of the virus.(several HCV doctors I have spoken with refer to this statistic).  Maybe it has a major connection to the 'persistent virus' replicating at very low levels in various 'compartments'.

ALSO, we need clear answers on whether or not HCV can truly 'infect' the nervous system tissues, the brain, spinal column, gastric tissues, etc.  Studies are always in conflict over these questions, and about half fall on each side of the fence.  Science should be doing better than this!  Research studies need to be designed to determine positively, whether this happens, and how many organs it might affect.

My ongoing concern and suspiscion, is that this virus is really NOT just a 'blood/liver' virus.  It may like many different tissues.  The article above seems to agree.

DoubleDose
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Avatar universal
Fl,

Sure like your doctor and nurse always wash their hands before examining you and after touching a surface that might be contaminated. Like the nurse always follows correct protocol for taking your blood pressure, etc, etc. If the lax attitude I notice in hospitals and doctor's offices carries over into instrument sterilization there's bound to be trouble. A news article several months ago talked about how easily infections are spread in a hospital, and how you can walk in relatively healthy and end up sick.

Fish,

Week 1 -- Sucked
Week 2 -- Sucked
Week 3 -- Sucked Big Time
Week 4 -- Sucked Big Time
etc, etc,
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96938 tn?1189799858
I've always assumed that the greatest danger in getting sick is at hospitals. Lots of yukky stuff happens there, and all those sick people too.
The scopes on 5/22 are the last pieces before getting more opinions.  Every other test is done and no older than 1-2 months, with the excpetion of the year-old bx. The bx slides are being held for me at the hosp. pathologist.  First stop is a local hepatologist and then a univ. liver clinic - both by the end of June.  Best guess is more tx start in Aug or Sept, want to get some value from the summer (kids off, family vacation)then I'm guessing 36 - 48 weeks.
I did not (pre-tx, 12 week, 24 week or 6 month post) have sensitive pcrs. Figured, maybe unwisely, that if detected (espicially post tx) would be greater than 600 anyway. At least that turned out to be true.   It's a topic for re-tx that I'll study more, lots of good info being shared on the topic here.  Will, however, do a 4-week next time.  I guess I underestimated 3a - lulled by high success rates.
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Avatar universal
Hey, what happened to your "no clinical signifcance found yet" disclaimer. LOL.

re: "We also need to understand why over 50% of SVR's seem to manifest the same pre-tx symptoms long after they are 'cured' of the virus"

Very difficult to isolate what pre-tx symptons were caused by Hep C and what aren't, given the fact that many report no symptons. As to symptons after SVR -- many may be caused by the treatment drugs themselves as you have posted about before.

Just want to emphasize again that these under the radar viruses appear to have no statistical threat regarding relapse, as SVR is durable to around 99% and close to 100% after being non-detectible for one year. And as of now, no clinical significance has been attibuted to any of these under the radar viruses.

But as you say, hopefully the research will go on, and hopefully it will benefit all of us in a meaningful way. Until then, SVR is our cure in the true sense of the word both because of its durability and the fact that it's linked to stoppage and even regression of liver damage. Maybe one day there will be a more complete cure, maybe not.

-- Jim

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Avatar universal
first year sucked!
second year sucked!
this year...well you get it!



actually for me my hardest time was "mid" treatment... the ringing of the ears freaked me out and the anxiety. the eye and gum problems and the feeling sick and tired and being worn out, the sleeplessness and sleep deprivation, just finally got to me... the social anxiety and not being with it mentally...the brain fog!!! toward the end months i definately had adjusted to the sx... though they still sucked, they did get easier to deal with!!!  

for me it wasn't really the initial flu symptoms those went away...nor was it the end time panic and fear of getting off to find out the results, although that was really dificult. it was the grind of it all, in the middle when there seemed no end in sight... this is was the hardest for me... thank goodness for the zanax, ambien, and ad, they really helped me through that time...

it does end though, and it is doable...and i am definately starting to feel some relief now that i'm done!!!

but, in a few weeks i have my first post tx pcr!!! yikes!!!

sandi
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Avatar universal
Infections from unsterile resued instruments was in the news a few months ago.  I think there's a scandal there waiting for somebody to blow the lid off.

The way I get it, instruments designed for a single use are being "reprocessed" and reused.  The hospital buys them from a reprocesser and uses them, taking on faith that they're clean.  Some of the reprocessors have dubious qualifications.  Since each instrument is different, there aren't standards for how to do it.  Some of them are destroyed by heat.  Since they were designed for a single use, sterilization wasn't a factor in their design.

To top it off, hospitals have a single price for an instrument.  They don't distinguish between new ones and reprocessed ones.  So some suspect they charge new prices for tools that cost them a fraction of the new price.

The next time somebody wants to stick a tool in me I'm going to insist that it's new.  Does anybody know if the health insurance industry has weighed in on this?  Will they pay for a new tool if a used one is available for less?
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Avatar universal
HEre are my little numbers if they will help you i'll put it down

Month 1 Lethargic / RibaRash / Losing Weight
Month 2 Anemic / Totally DEVASTATED / RibaRash / Losing Weight - Hair
Month 3 Recovering from anemia... extremely lethargic /RibaRash / Losing Weight and Hair
Month 4 Lethargic / Found Gold Bond Rash going away / Losing LOTS of hair
Month 5 Lethargic Losing LOTS of hair
Month 6 Lethargic / Thyroid Diagnosis / Hair and Weight Leveling
Month 7 Getting a bit more energy (maybe the thyroid med?) Weight level, hair not falling out as bad
Month 8 Here Now doing OK no major problems
Month 9
Month 10
Month 11
Month 12

I definitely had many more problems in the first few months. Hopefully this will continue on like it is or even better - I never want to go to anemia land again.

It seems like for ME month 7 was the real turning point.  I don't know why but...

I hope that helps!
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Avatar universal
I have to agree with Jim on the "sx experiences".  Yesterday was by far one of my worst days for riba rage.  I just wanted to beat the **** out of everyone, my husband, my best friend, my step daughter, my mother in law and anyone else I came in contact with.  Fortunately, I'm really not that kind of person and even if I were, I would not be strong enough!  LOL. So, I walked around the house cussing everyone out under my breath.  I'm thinkin' they all knew well enough to stay away and give me my space.

Shot 44 tomorrow.
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Avatar universal
This article - along with the <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16537674&query_hl=1&itool=pubmed_DocSum">Comar et al</a> study and the <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16628675&query_hl=1&itool=pubmed_docsum">Giannini te al</a> study posted by 'willing' - are a set of research beginning to show that occult can/does have it's own set of potential implications:


- Giannini shows a direct cause/effect relationship between occult and cryo.

- Comar points to a relationship between occult and HCC.

- the Pham paper above mentions that the Radkowski et al and Carreno et al papers point to a relationship between occult and continued histology post SVR: "<i>Although these patients generally exhibit histologically apparent improvement after IFN-alpha/Ribavirin therapy, including partial regression of fibrosis, liver biopsies from many of them show evidence of persistent minimal inflammation or even of active chronic hepatitis.</i>"



The practical message to HCV patients is: just because you've cleared the virus (SVR or spontaneous) doesn't necessarily mean that your viral story may be over. It would be prudent for patients and their caregivers to keep a close eye on things via appropriate periodic testing (eg. - CBC, Liver Panel, AFP, Ultrasound, possibly bx for those with more advanced histology prior to viral clearance, CAT scan, cryo, etc). And to find a doc/group who keeps current with ongoing developments in HCV research and developments - not to mention keeping current yourself. Any doctor who thinks "SVR=cure" and "out-the-door-you-go" is now in the stone age.



TnHepGuy

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Avatar universal
I would imagine your odds of contracting something from a colonscophy are FAR outweighed by your increased chance of colon cancer if you don't have the procedure.

I've had two of them in the last ten years and with modern technique and medications they are entirely painless, with zero discomfort.

The sedation used works fast and wears off mostly within a half hour post procedure. You're in the office and out the door within a couple of hours.

As many will testify, the worst part of the colonoscophy is the prep 24 hours before where you have to drink some solutions to clean out your bowels. But even that has changed radically in the last ten years and now it's really no big deal.

Neither of the two procedures you mention will be able to snip a polpy out on the spot and then biopsy it. I've had a few removed during the procedure and later biopsied. Fortuntly they were benign.

Now cystoscophy is another animal and is a truly barbaric procedure at least for men.
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85135 tn?1227289772
Doc
Month Ten. Hanging on the edge of a tall cliff with broken torn fingernails and bleeding fingers.
Month Twelve. Off tx 30 days. Ahhhhhhhhhhhh

FlGuy.
See you in the middle.
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96938 tn?1189799858
I agree about the risks of not having a colonoscopy.  I have a family history of colon disease and a year ago the doc harvested a couple of polyp beauties.  The feeling for colonoscopy, for me, is beyond dread and hate.  But, I'm committed to annual (no pun intended) reaming. Besides, I would be surprised if those pill-cameras were single use.
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92903 tn?1309904711
You say: I felt zero pain and discomfort both times

Prolly 'cause you're busy making goo-goo eyes at the cutie from the vitamin store. Is she there for the thrill, running the scope, or maybe she's the ring from the box, like the dentists gave out when you were a kid?
Helpful - 0
96938 tn?1189799858
I followed the prep directions to the letter too, including the timing, fluid intake, meds - all of it. He wrote, I followed. Good thing there wasn't a fan to hit.
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116701 tn?1210259164
Month One - So screwed up thought I would just die
Month Two - Not much better but couldn't breath when I walked
Month three - Much improved adjusted to low energy levels
Month four - Fatigue and weight loss problems
Month five - not so bad just tired and feverish
Month six - I lose myself in the middle of thoughts and fatigue
Month seven- Hopeful (not there yet)

I wish I had kept the diary they gave me at doctors office. There have been so many ups and downs so far. I hope you feel better soon. Dale
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Avatar universal
The controversy is about disposable items which aren't disposed of.  A colonoscope with the headlights, webcam, windshield washer, snipper, etc. is made to be sterilized and hopefully they do it right.  The disposables aren't made to be reused and maybe can't be cleaned reliably.
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Avatar universal
I just found out that I am going to have to go on interferon for type 1A hepatitis C.  My doctor started me on an antidepressant already.  Will this help with the panic attacks?  Can't they do anything for the fatigue?  I can't really miss a lot of days at work and I don't want to tell people at work what I am on.  Will it be possible to act like nothing is going on?
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