Survey for all: Intra-familial symptoms in HCV neg. persons

A question to all HCV positive forum members.  Have any of you observed what seem to be HCV-like symptoms in family members, or sexual partners over the years?  Specifically those who have been tested for HCV and are antibody NEGATIVE.  

I have noticed a variety of chronic symptoms including gastro-intestinal problems, dry eyes, throat clearing and chronic sinus congestion, memory problems, abnormal fatigue, facial rashes, etc. in family members and partners, from over the many years.  
Many symptoms mimic the HCV related symptoms I have become accustomed to for decades.

My concern is that there may be possible extrahepatic/ non-blood based transmission taking place within salivary glands, Sexual organs, lymphatic system that ends up being CONTAINED within those body systems.  The infection might not show up in serum based anti-HCV testing!!!!  

This is NOT anything that HCV researchers or docs have hinted at or acknowledged, but nonetheless, I find it troublesome, and potentially a huge threat, IF it is a possibility.  I would like to know if anyone else has either had this concern or observation, or if any other members have wondered about non-blood based transmission.  Do we know whether standard serum HCV tests would detect infection in remote organs, without being in the blood?  Is this why spousal transmission accelerates in later years of marriage, but not early years, during the highest period of sexual relations?  Could the virus be slowly working it's way into the blood after years or decades within other soft tissues?
Please post thoughts!!!!

[DownThisRoad]

I too have thought about the issues with HCV transmission that you raise in this post.  Your questions that you ask pose concerns not only for us suffering with hepC, but for the general population.  I still believe that all is not known about Hepatitis C, the transmission of the virus and treatment medications for this disease.  

I hope someday very soon that someone who is noticed by the media along with the medical professional will be able educate and make a solid, strong announcement to the general public regarding Hepatitis C.  This world is currently in the dark ages regarding this disease and doesn't seem as though any serious information is being released as of yet.

[oldhippiechick67]

Its either the pollution or germ warfare sent to us by evil terrorists from other galaxies.  Damn those UFOs landing in Roswell!   (insert cutsie icon of Alien HappyFace and little cutsey spaceship taking off all helter skelter)  hahahaha

[ringading]

ohhhh you two are on your game today!!!!!! now girls...don't be DOUBLE DOSING those delious meds okay

dear DOUBLEDOSE......WHERE DO YOU COME UP WITH THIS STUFF???
and does it REALLY matter.....i mean...really....NOT being a scientist and all.....

if yah got it, yah got it...if yah don't yah don't, if ya get it..yah got it...GOT IT?

with the best of intentions
ring a dingy

[ringading]

hey there darlin, just checkin in to see how the 'hangover' is after your first "time" n all......wasn't that quite the party we threw for you last night.....sorry i went MIA for awhile, but my grow a date....grew!!!!....so we took off to the LAUNDRY ROOM....for privacy...before....whats her name got there and pooped in her wee pants and then BLEW out the bottom....talk about shittin your pants.....hummm...oh anyway....i digress, as usual.....brain gggggggggooooooooooggggggggg

hope your feeling not to bad doll......jump in and complain to us all about it...cause we will definately be here to listen..suport you, understand...and then 'make fun of you'.....

with love
kimmy

[Revenire]

What you are saying about transmission makes sense but wouldn't many of our family members become infected and then the virus would be attacking their livers and THAT would show up in various routine tests that almost everyone gets when going to the doctor for a physical? LFTs for one ...

[Revenire]

Interesting.

This thing lurks in other tissue, organs, but when we kill it through tx don't we kill it everywhere? At least at levels that it can harm us?

My nurse said that even if we become undetectable that a biospy might still find some virus in the liver.

[ringading]

HA HA I HAVE FRIKKEN TEARS RUNNING DOWN MY FACE FROM LAUGHING SO HARD AND THE DOGS ARE GOING NUTS DANCING AROUND ME THINKING MAYBE I HAVE FINALLY TOTALLY LOST MY MIND.......BIG DOGS HOWLIN LITTLE DOGS BARKIN......AND ME....I CAN'T STOP LAUGHIN!!!
THANKS GIRLIE

[oldhippiechick67]

Atta girl,ROFLMFFAO!     That's the pics Im lookin for!  Thankee
Ringy, the dogs THINK you lost your mind?  (insert little cutesy icon of Ringy in front of puter with tears rolling, 3 dogs howling with bubbles coming outta their heads "she lost it long ago, we just howl and bark and dance around like this is funny stuff! cuz God didnt give us no tear ducts!")  hahahaha roflmbo. I am gonna send ya a pic email of my dog diggin in the couch, lookin for them nasty aliens!  They gave her hep c too..hahahaha, omg.

here's that link someone was looking for about Combo Survival Guide:   http://www.hepcsurvivalguide.org/comboguide.htm  

Oh, btw, Whacky said she could only post at work so we wont be hearing from her til Monday.

Gotta sign off, got about 8 windows open, the aliens might crawl in...KIDDIN  

[ringading]

HOOOOO HOOOO OH MAN O MAN, HAVING US SOME FUN NOW.....OHC...HOW DID YOU KNOW??.........



p.s......WACKYS A CHICK???...opps....

[DoubleDose]

I agree that the HCV would eventually infect the blood and liver.
The only question is how long would it take?  Could it take a decade or more to finally cross the barriers into the blood system?  We all have read of those who are serum negative after treatment, for years, but end up being HCV positive on liver biopsy!  What is THAT about.  Could the same thing be going on in other organs...mucous membranes, eyes,  sexual organs???? without actually crossing into the blood????

I am not claiming that this is the case, only that I have seen some pretty strange, coincidental symptoms in close family members, who have tested HCV negative.  

They have shown replicating HCV RNA in several research studies to exist in saliva, lymphocytes, and salivary glands, etc.

This issue needs to be considered and carefully researched!!!

[cindee]

i haven't noticed any symptoms in my family. the thing is to be very careful with any bleeding. but then again ....and this might sound gross..my friend has hep c as well, in her first visit for how to give shots, and (dang i can't think)anyway her consultant asked if she and her husband had ...i hate to say this, bloody sex and they did, she was told this would be okay...i really didn't understand that. if i am cooking and cut my finger i stop and turn it over to my husband. i have been extemely cautious changing toothbrushes, putting my razor where nobody else can use it, no one using my hairbrush or manicure tools. my husband did stop drinking. he didn't want to have to worry about damaging his liver. best wishes and i hope this is what you were looking for. i am 2months post tx. and have been SVR all the way. after i am done and get my last report in may, i am going to have my GP check my husband to see if anything is going on with him. i am still having some probs, depression, fatique, muscle aches, but sure this will get better in the next months to come. prayers to all, Cindee

[DebbieDo]

Hi there........You are just a couple of days ahead of me on TX.....I do #3 on Monday..........You sound like you are doing pretty good.  I think I am too.......would be nice to have a shot buddy.  I'm 1b, mild fibrous, VL 5.9, Pegasys/Riba, have had Hep C for 35 yrs......Im 52 and live in beautiful sunny Ca......I felt good today, i went shopping for much needed unmentionables  :)~   I have this heaviness in my legs, but i did it, phew, i sure walked alot today........i felt good ...Love all your cute stuff, it's so amazing what we are able to do on the computer.  Thanks for all you give to the board.  Deb  :)

[Sioux]

I'm F/44 1a, Fibrosis, vl 10 mil at start of tx and <5 at 12 weeks, I am now on week 41 of 48. alot of my hair fell out, but the weird thing is my eyelashes got longer. That's one of the good things about this, I don't know if they will stay that way or not.

[Showboat]

Yes, I am the same as sioux, I lost ALOT of hair....but my eyelashes GREW too........my friends keep asking if I am wearing false eyelashes....(thank goodness for hats, scarves and wigs...)

[Showboat]

Oh, yeah.......I have heard that tx does affect an earlier menopause....all I know is that (excuse my frankness) the damn has broken....you may experience heavier, and perhaps, more painful cramping while on tx....I am...what say, you other gals?

[Sioux]

Ditto, the monthly thing has changed. I will be having some of it removed in the next year

[Ambush]

I've only had two periods in the eight months I've been on tx.  Both were heavy with BAD cramping.  No more hot flashes that I was having a bad time with, though, so there are good things :)  Instead of HOT all the time, now I'm COLD all the time.  Much prefer cold!!!!
ambush :)

[Eyedeas]

I Zigmund Fraud, have taken zee zymtoms you discussed, compared it to perzonal exzperienze und have extrapolated my own theory.  This conzumed nearly every minibyte of brain power awfederzane, zorry, I ment awfvailable.

vhat ve haff here iz "familial sernindipitous sympathetic cobehaviour", or in laymanz termz, zey are COPYCATZ!  Zey are zymply trying to take zee attenzion away from us and get some attenzion for zemthelves, pathetic!

You zee zymilar tings all ze time as couples tend to take on zymilar mannerisms, habits, speech patterns and even voices start to sound alike. But, I ztill tink zey are COPYCATZ!

Psycho-anal-iticaly yours,

Sig

[DoubleDose]

I appreciate the responses to the question.....even the goofy, sarcastic ones.  We all like a good laugh!  We can forward the replies to the numerous research docs, scientists, and universities that are currently conducting highly amplified HCV RNA tests on various organ tissues to determine if they are indeed reservoirs for the virus, and whether the virus is replicating actively in those tissues (outside of the blood and liver).  There is a lot of active research in progress to explore what is a pretty unknown area to date.  

We all need some mindless entertainment periodically, and I'm sure they do too!  Thanks for turning on the brain fog 'horsepower' to generate some quality response!

[oldhippiechick67]

Now ya made me feel guilty for being sarcastic!  Really what I think is that the government is holding back info on how dangerous and widespread this hepatitis stuff is, they dont want to cause a PANIC!  The VA isnt taking care of all the soldiers that caught it from being in the service, the feds arent admitting prisioners caught it in prisons.  The pass the buck routine.  
The family members who have symptoms?  Could be dude, we just dont know enough.  Hoping for a better cheaper cure soon.
OHC

[DebbieDo]

Thanks for your reply.  I get tired of sitting here all the time.  I do have energy.  I work a mild caseload. Its all been tolerable thus far.  I do rest, believe me.  My GI said do whatever i felt like doing. I didnt overdo yesterday just the heaviness of my legs that i didnt have before. I, too, get the worst sides for a couple of days after my shot. My work on Tues and Wed is sooooooo easy......that is why i decided to do my shot on Mon......so i can have the weekends feeling better.....
I'm also a 1b......have you registered at the Old Hippie Chicks site on Yahoo?? There she has a list of all of us on TX and info.  You should check it out...I dont have the web info at the moment........but if you need it i can retrieve it for ya so you can sign up.......its pretty interesting, she has put in alot of work their for all of us to view.  She's a very special lady  :)
I will post on Tues and let you know how things went after my shot. Thanks for caring.......Deb

[DoubleDose]

Thanks for your reply.  Your comments regarding the antibody test for HCV are exactly what I have focused on in my attempt to avoid concerns about extra-hepatic/serum transmission.  I also surmise the same, but am not fully 100% on that being slam dunk end of issue.  

Recent research articles that I have reviewed (I will find and provide a lnk for you) have surfaced some similar concerns.  A study of spouses and family members of HCV pos. individuals showed a group of apparently HCV negative (on testing) cohabitants, with well defined CD-4 anti-HCV responses on examination. It did not make clear whether these tests were conducted on serum only specimens (which would validate your commentary) or on tissue, saliva, leukocyte samples.  The subject of the article was 'Intra-Familial Transmission of HCV'.
They came away with conclusiont that called for further study of these family members, possibly regarding vaccine development possibilities, or just to clearly understand the phenomena observed.

The other recent article was in the format of a debate, with two points of view featured from leading researchers:  Those that feel they have observed, and documented extra-hepatic, and extra-serum transmission, and the other group, that also have biological study results to refute non-blood, non-liver replication.

I only surfaced this issue to::  1:  ease my mind.  2: see if my observations are unique, thus non-HCV based.  3: see if anyone else has had similar concerns.  

Thanks for your good follow-up, and rational reply.  It is very welcomed.  My particular issue could also relate to some other chronic viral syndrome (herpes related, CMV,  EB, etc) which could account for a presentation of similar symptoms,  or could be entirely coincidental.  If these concerns and observations had not gone on for many years, I would probably have not paid them any mind at all.
I feel more comfortable after your post, and it mirrors what my doc says.

[willing]

Hi, given how little we know about mainstream, blood-based, transmission there's not likely to be  conclusive refutation of what you're suggesting any time soon. However consider the steps involved : hcv-contaminated body fluid, say tears or sweat, somehow crosses various epithelial layers amd hcv manges to infect host cells that enable replication. Infection then proceeds at a rate high enough to trigger pathologies that result in observable symptoms but not high enough to trigger any detectable HCV antibody or HCV serum RNA. The absence of HCV antibody pretty much shoots this theory down in IMHO: yes we know of many infection where no  HCV RNA is detectable in blood but as far as I know active infection is always accompanied by anti-HCV.

[BobK]

Whoa there!!  Everyone get a grip for a moment!  

Quote" I have noticed a variety of chronic symptoms including gastro-intestinal problems, dry eyes, throat clearing and chronic sinus congestion, memory problems, abnormal fatigue, facial rashes, etc. in family members and partners, from over the many years.
Many symptoms mimic the HCV related symptoms I have become accustomed to for decades."  endquote

Gi problems...take a look at the aisle in the supermarket dealing with laxatives, fiber supplements..ect  there are scads of products out there to deal with this VERY COMMON PROBLEM....most of these symptoms are related to diet composition rather than any disease state.

Dry eyes...again look at the numbmer of products on the market to deal with this VERY COMMON PROBLEM.  

Throat clearing and chronic sinus congestions....maybe living in a very dry enviroment...like inside modern homes is more to blame for this than anything else.  

Facial rashes...again this is a VERY COMMON PROBLEM related to being a human being.

These symptoms are so generalized you could say that EVERYONE at one point or another in their lives will experience these.  Everyone does not have HCV.  Perhaps the biggest mistake is to atribute symptoms to HCV when they are actually not HCV related.

I think your letting your allowing your imagination to get the best of you...relax!  

REgards,
BobK

[jonihs]

i don't have the monthly problem(hysterectomy) but I've noticed that the first 3 or four days after my injection. then I start feeling sick and headaches the last days. I' on 7 /24 and still no hair loss or body aches. Makes me feel like I'm doing something wrong.        joni