A Disturbing Study regarding other routes of transmission

[DoubleDose]

I will post a link to a study that I just read which relates to one of my more hypothetical HCV transmission concerns.  I will not draw any conclusions, or follow the logic from their discussion, as I usually might.  In this case I will suggest that after browsing the article, that everyone read the discussion very closely.  I think the issues raised are potentially very contrary to common beliefs about HCV, and are in line with many of my concerns about 'other modes' of transmission.  The lymphotrophic aspects of this virus raise the possibility of infection in cells and tissues other than strictly serum related cells.  I will be curious to see the follow up studies. You can form your own questions about the potential for some sort of transmission.

Here is the link:

http://jcm.asm.org/cgi/content/full/43/9/4413

Any thoughts, or concerns from our forum members on this study???

I think the discussion is extremely noteworthy and provocative.

DoubleDose

[kcrandy]

this just ina double-blind done by two blind guys has proven equivically that we are all going to die whether we see or not ( no pun intended ).. so enjoy life while you still can  :O)


OO
  0           see ya!!!
------

[DoubleDose]

I would be curious, as in the past, to see if anyone else has had any similar thoughts or concerns about a less obvious, non-blood form of HCV infection possibly causing problems or transmitting to intimate partners.  I would think there would have to be odd or unexplained symptoms developing in these partners, that seemed more chronic, or unusual, to have triggered any concerns.

The potential for 'lymphatic infection' with HCV
might indeed be capable of causing some sort of noticable symptoms, but if they were apparent, and chronic, I would think other board members would also have noticed.  
Now that the concept of an isolated 'lymphatic infection' seems a bit more credible (see HR's comments related above), I don't feel as far 'out there' asking some of these questions, nor do I think some of my family member observations should be as easily dismissed either.

DoubleDose

[DoubleDose]

As far as discussing this issue with our spouses, I think so little is really fully determined at this point, and the HCV infection in the Lymphatic system has not yet beenvery much studied or broadly acknowledged by the greater HCV medical community, that I think we need not feel compelled to discuss it.  I have personally gently discussed the issue with my spouse recently, only because we have been both discussing these possibilities more in the last year or so.

I have occassionally tried to introduce some of my concerns, but do not want to create any undue fear or stress.  I also do not like being absolutely withholding on things that could be an issue either, so I have slowly begun the dialogue.  My spouse takes an approach of 'whatever it is, is what it is' and we will deal with any problems if and when they arise.  As to the present, don't lose any sleep over it, is her attitude, and I have to say that makes me, in turn, feel more comfortable and less guilty.

I have, of course, been thinking a lot lately, about how this possible 'lymphatic infection' that may reside in our spouses systems (and ours as well) might be responsible for the range of odd symptoms I have seen in my intimate relations over the years.  Its pretty easy to connect the dots, and I also think that a lymphatic or immune system infection could easily provoke some 'symptomatic' reactions.  I guess at this point I will just wait for further research, and as long as no other problems crop up in the family, will not worry too much about what the future consequences might be.

Just to interject a thought....if there turns out to be a 'silent' lymphatic infection, which is transmissable to intimate contacts through means other than blood to blood, hen I would expect that a far greater proportion of the general population would harbor this version of the infection, and would probably show no typical signs on testing for the virus, or also no liver symptoms, since the virus would not affect those organs.  It could be in some ways similar to HPV, or HSV, in that it might be fairly commonplace, but for the most part, somewhat benign.  Thats precisely what we will need to understand in the future....just how benign is it?

I do have a concern that much of the HCV medical community is focused on other issues, and our understanding of peripheral issues like HCV persistence, lymphatic infection, remission vs. eradication, extrahepatic symptoms, etc. may be a long time coming.  There does not seem to be nearly enough research dollars, government interest (as compared to HIV, etc.), or bucks to be made by Pharma to really conduct the due diligence on this virus, that other diseases routinely receive.

Best wishes to you and have a nice (worry free) week.

DoubleDose

[Lady Lauri]

So we need to have a great sex life with our spouses..............
Uhhhh, need the spouse first :}   Good news tho! Soon as OFF , I'll get to work on that one again,lol!


beamish....your so crazy :}

[beamishboy]

"prostitutes" and.." great sex lives"....damn girl,you can always get my attention...
i am posting this advice to whom it may concern,immediately...thank you

[sfbaygirl]

Not sure if I posted the story about the prostitutes who kept their T cells fighting the virus, but once they quit they came down with the virus... So we need to have a great sex life with our spouses so their T cells can continue to fight off the virus!  Of course this is a story without data I have, but I find it interesting.  

[DoubleDose]

I am counting on the T-cell protective concept. The only problem that I have with that theory is that it indeed implies that there is some sort of 'contained' or controlled virus present there in the tissues or cells, and that these T-cell responses must continue on a permanent basis to keep this 'contained' virus in check.  If this is what really happens, might that not be an avenue for the development of autoimmune problems, and related symptoms to eventually emerge?  Maybe that is what the symptoms would be caused by, as the body struggles to keep this isolated invader under control, and to prevent it from moving into adjacent systems or organs.

In other words, if the spouses, and intimate contacts are indeed 'locally infected' on some small scale, or have a 'lymphatic viral carrier state', then would we expect to see the emergence of symptoms that would not occur if the virus were not present at all?  I think the first step has to be the isolation and quantification of this cellular viral phenomenon within non-HCV positive family members, by the researchers looking at this issue.  It needs to be determined, in an absolute sense, whether this is an ongoing, isolated viral infection, or just a lingering t-cell reaction from prior exposure to the virus in fluids, or tissues.  We need to be certain that there is indeed actual replicating virus present in the lymphatic system.  A good starting point would be to look at spouses (HCV negative of course) who have not been exposed to an HCV+ intimate partner for some time, like two to five years.  Then take samples from various tissues, and lymphatic structures to determine if there is cellular reactivity to HCV (ongoing immune responses specific to this virus), and next to do very sensitive PCR testing with amplification, to see if indeed actual replicating HCV can be verified.  
Once this issue is made clear, one way or the other, we will then have a good starting point to look at what the implications might be over the long term.  

DoubleDose

[sfbaygirl]

Interesting stuff. I have not noticed anything in family members, but who knows?  Now I am curious about it as well. From what I understand at the moment the T cells continue to protect the family. I heard a story about some prostitutes that had the virus and were protected by those t cells as long as they kept doing their jobs. As soon as they stopped, they came down with the virus, because they were no longer protected by those T cells...kinda interesting story, huh?  So does this mean we can never divorce or our spouses will come down with HCV?  Ugggh....Okay a story, but something to think about!  

Have a good weekend too!

Linda

[DoubleDose]

Thanks for your follow up.  In answer to your question, this lymphatic thing is something I had not entirely considered in my past concerns about family member related symptoms.  In thinking more about what HR said, and the research article, etc. I will continue to keep an eye on any further discussions or research on this sort of lymphatic manifestation.  I would think that if any of these chronic symptoms that I have observed are indeed not just coincidental, and are indeed caused by a virus, then this could be a subject worth studying.  I have long feared that some form of the HCV could be the culprit.

  I am hoping that the 'cellular immune response' study within close contacts and family members, that a prominent Hepatologist is planning to conduct will have some conclusions related to these unusual, and questionable non-blood transmission issues.  I am curious as to whether the virus could just set off an immune response that remains chronic, but the virus is repelled...or that the immune response in the cellular tissues keeps triggering from a small amount of latent, controlled virus, that remains but never goes anywhere else in the body....or other related explanations.  I am now more curious than ever, and see some reason to really wonder where these chronic family member symptoms have been coming from.  I guess it will take time, but I am going to be looking at all the research, more than in the recent past.

Have a nice weekend!

DoubleDose

[sfbaygirl]

I am still breathing hard and not because I am turned on!!! LOL

[kcrandy]

no, i was reffering to rodney dangerfield always saying i've got a millino of em whenever anyone left their self open for a sny or funny come back line.

[sfbaygirl]

You have a million caveman movies?  Perhaps I am dense, but I don't think there are that many. I taught ancient history and had some good ones, but none had those guys thumping heads of the women! LOL  Now, take the ones of fiction, perhaps there is one or two....Or are you referring to yourself having a million pointers on how cavemen can thump?  

PS...Still getting over that electro shock therapy...thanks for pointing out the language used in MO for this... Whewwwwww

[kcrandy]

im a hugger.  as for my gal pal im currently searching as to were i can get the caveman movie for some good pointers. : O )


p.s.i got a million of em  :O)

[sfbaygirl]

Hey did you hear that the best way to greet friend is to kiss cheeks, not shake hands?  Less exposure to virus and bacteria.....Sounds good to me!  To bad in the US handshakes are the standard, not the kissing cheeks as in Europe and other countries.....It is safer to do so.

[kcrandy]

sorry could'nt pass up the kissing bandit snide.  and yes the caveman looks like the best method for kissing fiends lol.

[sfbaygirl]

Okay, are we talking about the RGlass thumping ie; caveman thumping, or what? lol  Yep, it can be pretty funny, but after talking with HR, I am totally convinced this is the real deal.  

[kcrandy]

i see a whole lot of thumping coming on lol.


p.s.  "news bulltin "kissing bandit" found to have hcv and the "news media" is asking all those kissed by her to report to your local CDC center for evaluation"    : O )

[sfbaygirl]

Thanks for the compliment. You deserve one as well.  I was hasty in my first response and upon reflection tried to see your POV. Especially after speaking with HR I saw the wisdom in your words. I sure hope, as do you, that our families aren't effected by lymphatic HCV. Sounds as though they are...who knows what this will cause in the future for them. Hopefully nothing.  Actually I think I said that I haven't mentioned this to my husband, because I don't want him to worry. Maybe I should, but what will this accomplish?  So far, he knows he doesn't have HCV, what good will come from telling him he has it in his lymphatic system?  Not much, unless someday we discover that it really matters and our spouses have this virus as we do.  So far, I doubt that telling him that he has it is going to help him much....it's not like he will go on tx or need to. He certainly doesn't know as much as I do about HCV and I don't want to scare him unnecessarily.  Geez, I sure don't want to keep a secret...I suppose if there were something I could do to contain this in him, I would. But what do we tell our families about their exposure?  A bit late to warn them and what do we warn them about?  

I remember some posts about your family having symptoms...do you think this lymphatic exposure is causing them to have symptoms?  Scary stuff DD.  LOL  I really don't want to even think about it, although as I said today after my scan...I am glad I got the look at the left side of my liver, although bad...at least I know. Now do I tell John or what?  

[BThompson4]

Regarding occult hep c research, I doubt if researchers who find traces of hcv in someone's body when it is undetectable in the blood also write about family members of hep c carriers having "inexplicable" hep c symptoms.  Given your posts on hep c symptoms in people you live with-- people that have been tested for hep c but always turn out negative-- begs the reader to come to the conclusion that you are saying that the presence of hep c in places other than a person's blood is potentially dangerous, whether you state that it is dangerous or not.

[Mary4now]

For now I will adhere to the recommendations by my hepatologist who seems to be on the ball.  I think looking at the information is important but being able to decipher the studies is beyond me at this point.   M

[kcrandy]

wow!  thank you for your response. i too as you do want to find the answers to and eventual cure of hcv.  if you think my comments directed to you were personal they were not they were meant to be hypothetical and to prove a point that things and or comments and or opinions can be taken out of context.  just look at the hiv sufferers in thier early dealings of that virus and the publics reaction to it.  i was not trying to question your knowledge or your question about transmission of this virus.  personally i would be curious to know if the virus has other ways of transmission, could this be a different type of virus in the line of hcv or can said virus mutate and become something entirely different yet appearing as the hcv virus still causing the same damage.  your question is a good one as i stated on my first response.  i too come to this group to get knowledge and try to help the newcomers,the ones in tx and those who are post tx.


i will admit i say things that appear to be cofronting or demeaning and if i have done so to the point that some or anyone of you thinks i am out of line i pray said persons will let me know, i respect confrontong issues heads up.


please forgive my abrasive attitude DD.


look forward to hearing from you in the future.  :O)

[DoubleDose]

Let's get this straight as far as trying to criticize or make light of other people's opinions, etc.  First, I did not make any comments to you in my last post, but responded to Nomad's rant.  I have basically tried to follow a line of reasoning, based on recent research and questions raised by the doctors doing the research.  I don't apologize for wondering what is going on, or what some of these more 'strange' findings might mean.  I mean, do any of you lambast the researchers who publish studies documenting 'occult' HCV and how it behaves in very odd and not understood ways?  Often infecting only one system, or compartment, and without any confirmation by standard HCV testing.  

Other researchers have published many, many studies now, in various countries, documenting ongoing viral replication long after SVR is achieved, and also in spontaneous clearers.  Does anyone accuse them of spreading fear?  Or 'ostracising groups of people.  Look, I understand that the fluid, and salivary issues are very unclear, and have few serious researchers looking at what might happen in these apparent 'exchanges of fluids" with close contacts, that MIGHT bear replicating HCV.   I think the study first posted in this thread asks some provocative questions, and allows for the fact that the medical community does not fully understand what any of this might mean, as far as some sort of 'infectivity', or localized, compartmentalized ongoing replication, or transmissability...etc.  

I merely have tried to extrapolate what the researchers are discovering, and ask questions that will need to be answered.  We have just seen a relayed comment from HR  (thanks sfbaygirl), indicating that this may well be happening just as hypothesized by me, and as alluded to by the research article.  From his comments, this 'spousal infection' within the lymphatic system is likely not a problem, and remains contained, without triggering a blood borne infection.

The only question that I will leave all of you with is this:

If there indeed is some sort of 'lymphatic infection' with HCV being passed sometimes, to close contacts, or any other sort of benign, or unspecified infection being transmitted through saliva, sexual fluids, etc....whether assumed harmless or not........
Would you want to know about this?   Would you want to see the viral behavior studied, and ultimately fully understood?  Or would you rather that researchers ignore these 'odd' findings, and just assume that they either are not important, or that they should not create additional concerns about HCV???

As far as the comments about brave people treating, and dealing with the horrible consequences of therapy....believe me I understand that one personally.  I think I have earned my 'bravery' stripes with the nearly three years of high dose tx that I endured.  I don't usually refer to it in these terms, nor consider it to be a big deal...just a necessary ordeal to be able to avoid a more horrible alternative.  I hope that I also qualify to express my opinions, ask questions, and follow lines of reason...so that we all can eventually figure out what the complete range of the disease involves.  

I truly don't think anyone is going to single out our questions and theories and use them to incite hysteria or discrimination out there.  I honestly do not.  I think that the medical research has a far bigger chance of being looked at by the public and taken as serious commentary.  And some of the recent research (not just my comments) has been downright disturbing.  I may not always like to hear all of what is being discovered, but I do want to know it anyway.  It is whatever it is.  And if some of my more disturbing hypotheses, or just plain scary questions can be proven false...I will be the first one to say Hurray! Wonderful!! I certainly do not WISH these things to be true.  The research, though, drives my questions. (and often my personal observations, as well)

I am honestly sorry if any of my comments have insulted anyone, or appeared to be demeaning to anyone....but if some of you are totally frank about some of your responses...I could as easily be offended!  But I am not.  I usually just tend to shoot back with a similar veined response.  Absolutely nothing personal in my comments...other than just tossing the 'compliment' right back.

And, I absolutely respect and encourage the opinions and theories of everyone on this Forum.  Sfbaygirl, I really do admire your humor and candor.  I like your style.  Thanks for your comments and criticism.  You say what you think, and you are not concerned about looking at both sides of a coin.  Sometimes we can feel two contrary ways about the same issue, and simultaneously hold oppositional points of view (within ourselves), and I think that is good.  It is the root of seeking truth.

DoubleDose

[sfbaygirl]

LOL  Yep, I can blame all my ranting on bush, hillary and the bunch. especially global warming!  I think my husbands ex blames me for all of the above and the war and Hamas!   It is hard not to take remarks personally at times...god know I do.  I am sure your bio hazard suit is a great thing to have. Wish I had one! LOL  You are okay, I am okay we all are okay, on or off tx that post tx fog is alive and well!  Just a shame we have to deal with any of this.  I agree, blood to blood should be the focus...I would hate to think my hubby has virons running around b/c  of me. I haven't told him this yet and maybe I won't as the transmission in the lympathic sytem won't effect him.  I sure don't want to freak him out!  Especially when it isn't going to cause him harm.  

[kcrandy]

well stated, and point taken.  i guess i took some remarks a little to personal.  when anyone implies i or anyone in the group is hiding thier heads in the sand rather than want to face a fact not a hypothetical it tends to tick me off.  i was taking my issue to the impth degree to make a point that the issues such as DD brought to the group,
( and for me i stated it is a good idea to know how this virus can be transmitted ),   could be take completely out of context, therefore reflecting negatively on hcv sufferers.  as you stated and referenced HR blood to blood transmission should be the focus, but HR also stated that bl to bl trans percentages are extremely low.  my bio-hazard suit was brought up in another thread a while back and my point then as it is now was not to take the saliva issue to seriously or out of context and cause mass hysteria a.k.a.
"refer madness", goerge bush, hilary, barroka, mccain, global warming etc... : O )

i guess i could blame all this on post tx brain fog.  :O)