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Avatar universal

Is anyone concerned about family transmission issues? or occult transmission?

This may be an 'off the wall' question for many on the forum, and yes I know that some of you have heard similar questions from me in the past, but I am more curious than ever if anyone is seeing any familiar symptoms in close relations, family members, intimate partners, etc.  I am addressing those who have lived with HCV in the same household with other family members for ten or more years.  

I am aware that there is a research study being done by a prominent hepatologist to explore these issues.  They will be testing tissues, fluids, and other cell structures in HCV negative family members, to determine if there is any indication of some other form of infection.  I have been concerned for more than a few years that there may be another 'mode' of infection that may take place through casual, or intimate contact, and which does not produce the typical blood/liver infection nor does it produce a positive result on HCV blood antibody testing.

Curious symptoms might include things like:

*  Unexplained dry eye, and salivary irritations.
*  Chronic fatigue and unrefreshed sleep, becoming worse over    the years.
*  Abnormal forgetfulness and noticable short term memory problems.
*  Arthritic pains that did not exist in the past, in areas like neck, shoulders, hips, and ribs.
*  A reddish flat rash that occurs on the face around the eyes, and comes and goes for no reason.
*  A chronic sort of allergic state, with inflamed sinuses and throat, and daily throat clearing, year round.
*  New gastric and bowel issues.


Comments Appreciated!

DoubleDose
41 Responses
Avatar universal
My dx was in 2005, but its clear that the original infection was around 30 years prior [acute hepatitis, but we now know I've never had A or B.

My wife was tested immediately after my dx came in. She was clear. Its just one data point, but I don't think HCV is as easy to transmit as some might think.
Avatar universal
no, I am not concerned on any subliminal mode of transmission of hcv, or whether it is staying in the sinus tissue, for example, as opposed to the liver tissue. because even if it is, other health issues exhibit the same symptoms and those conditons are just  as not deadly or debilitating as non liver infection of hcv would be, if it existed. those things are manageable and not incapacitating, I need to focus my energy in more pressing issues, like going to college and paying for it, for my youngest one.
She has had allergies, and asthma like condition since she was a toddler, there is a familial hx of it, so I can't assign blame to hcv, but even if IT was to be blame, the condition is treatable and localized, in an area where no cirrhosis or cancer can occur, so why worry? To me, there are more tangible issues to focus on, day in and day out. focusing on abstract threats, wastes too much of my energy and brings no reward.
the moment there are 20 studies stating that there is something to be worried about, I will give it some thought.
92903 tn?1309904711
Spousal gastric bowels issues? Don't all married men put up with that? I thought morning grunting followed by a firehose sound was just to be expected like lipstick prints on the coffee mugs.

Kidding aside... no family issue here. Not of the type your asking...
Avatar universal
First wife 15 years and second 15 years and neither contracted HepC.  They get crazier than h!ll putting up with me but no virus.  I have to think, at least with my first wife when I had no idea about the virus, that it is pretty tough to transmit this thing without some serious blood to blood transport.  I dont worry bout it at all ....but now that I am clear of the virus I do feel better about my contact with my wife...guess I worried about it a bit actually.
Avatar universal
Have had hep-c 30yrs been married 25yrs no protection had two children none of them ever contracted hep-c
166496 tn?1236182312
I have know for 5-1/2 years.  No treatment at this time but scheduled appts to get started ASAP if recommended.  Recently divorced and 11 year old boy.  I was married for 11 years.  Unprotected sex the entire marriage.  Ex is negative and son is also negative.  Decided not to have any more children due to risk factor of passing it on (peronal decision).  I know there is a slim risk of passing on during childbirth but there still is a risk.
Avatar universal
No issues in my household. There are only two of us and Karen is healthier than anyone has a right to be - thankfully. Mike
Avatar universal
i have been married 32 years and my wife still gives blood.
Avatar universal
DoubleDose,,I totally believe in my heart of hearts that virus is a little bit more contagious than what doctors think. This whole occult thing to me
Avatar universal
hit and sent above in by accident...okay the occult thing at the end where the virus is undetect. in blood,,,,,why couldn't that also happen onset of virus,,meaning the virus enters blood stream and lives in the liver,undetectectable in blood until it starts to replicate due to some jolt to the immune system, whether it is stress,such as divorce or close death, other sickness in body etc. So what i am trying to say is Occult in onset, virus explodes into bloodstream after the immune jolt,,,get tx,,svr,,occult again, then if an immune jolt, whether mental trama or something physical such as alcohol etc, its raises its head again, and replicates and shows up in blood, IMO

This is why i too worry about family members. its trasnmission, I believe is more that blood to blood. other virus such as EBV can be caught through saliva, why not this virus,,,if other virus can??or is it because this one is just undetectable for such a long period of time?

Rambled on,,but as far as your question with family members..my husband has constant post nasal drip lately, over 2 years or so and chronic cough, my mother lives with us and has a problem with dry eyes, bad problem with that.
Avatar universal
I have lived with my wife for 17 years, my daughter is 13. I was infected for 8 years before I met her. We shared a mechanical tooth brush. I was a rock climber and more than once came home with abrasions on my hands and legs. Neither have tested positive.
Avatar universal
The reason you see "familial" HCV in Egypt, is because the govt. there did a massive campaign to eradicate schistosomiasis which spread HCV widely amongst families. In that particular country and instance they see this because the parents unknowingly passed the virus on through m ultiple use of needles.
It is needless worry for anyone to be overly concerned with this happening without a similar multiple use of needles  scenario.
here is a study about it
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=139974

"Hepatitis C virus (HCV) infection and schistosomiasis are major public health problems in the Nile Delta of Egypt. To control schistosomiasis, mass treatment campaigns using tartar emetic injections were conducted in the 1960s through 1980s. Evidence suggests that inadequately sterilized needles used in these campaigns contributed to the transmission of HCV in the region. To corroborate this evidence, this study evaluates whether HCV infections clustered within houses in which household members had received parenteral treatment for schistosomiasis."
Avatar universal
Curious symptoms might include things like:

* Unexplained dry eye, and salivary irritations.
* Chronic fatigue and unrefreshed sleep, becoming worse over the years.
* Abnormal forgetfulness and noticable short term memory problems.
* Arthritic pains that did not exist in the past, in areas like neck, shoulders, hips, and ribs.
* A reddish flat rash that occurs on the face around the eyes, and comes and goes for no reason.
* A chronic sort of allergic state, with inflamed sinuses and throat, and daily throat clearing, year round.
* New gastric and bowel issues.
--------------
Interesting topic but the symptons listed are very common in the general population and I don't think folks should be unduly alarmed if they see some (or even most) of them within their own family.

I've heard all these complaints from friends and have also read/heard about them discussed frequently in the popular media and not terms of Hep C. How many commercials on TV for example talk about getting "a good nights sleep"; and as to "arthritic pains", just about everyone over 40 seems to start having them.

-- Jim
Avatar universal
My xhusband has hepC and has since the early 80s - I have it but don't think I got it from him.  I WISH he would get a geno test so I could see because if he is a 1A and 1B like me...what are the chances.

But neither of my kids have it and my daughter used to use my razors all of the time. Boy you LEARNN with this disease don't you>?
Avatar universal
Hey everybody, thanks for the detailed responses.  I would like to clarify one thing though:

I am not talking about family members testing positive for HCV...to the contrary..I am specifically focusing on family members who are NEGATIVE for the virus.  Sort of similar to what MyOwn wrote above.  An occult transmission, through tissue contact, or fluids, etc. which is just that: OCCULT, lies dormant in the body, in-check, until there is an immune system dysfunction, or maybe never appearing as a full blown blood/liver HCV infection.

This is what is being researched currently by a top hepatologist: looking at HCV negative family members to determine if they have a 'dormant' infection in various tissues or organs...without any signs on HCV blood testing!

There would also be accompanying symptoms with this sort of infection, and I think that these reported family member symptoms are what is prompting the study.  I have observed quite a few symptoms in close contacts that are very 'atypical' to everyone else that is not a close relation.  The symptoms are very obvious, chronic, and unexplained on medical examination....and they mimic many HCV related symptoms......and, Oh yes, they all test negative for the virus on blood testing.

Now, if they are finding replicating virus in sexual fluids, salivary tissues, saliva, lymphatic system...then what is to stop the virus from moving from one person to another, in these tissues only, when there is intimate contact?  Maybe it does not produce a 'blood infection' and is just held in-check by the immune system....similar to the SVR's who also may now harbor a 'dormant' virus, according to most of the recent research!

I just wanted to clarify just what I am trying to explain.

DoubleDose
Avatar universal
Do you have more specifics on who is running the trial/study/research and exactly what protocols they are following?
For example, are they using a control group comprised of families where no one tests postive for HCV.

Good to see you back posting (and alarming :) ) everyone. LOL.

-- Jim
Avatar universal
I'd be curious to read what this hepatologist has to say if you have any sites to point to. Glad this doctor is looking inot this.
Avatar universal
The stress of living with a family member with a chronic illness is enough to cause most of these symptoms, not to mention normal allergies, and environmental conditions.

HCV sucks big time, and I think there's a tendency to try and blame it for everything that happpens to us and ours.  There are a lot of other health issues facing families.  

Kim
Avatar universal
* Unexplained dry eye, and salivary irritations.
* Chronic fatigue and unrefreshed sleep, becoming worse over the years.
* Abnormal forgetfulness and noticable short term memory problems.
* Arthritic pains that did not exist in the past, in areas like neck, shoulders, hips, and ribs.
* A reddish flat rash that occurs on the face around the eyes, and comes and goes for no reason.
* A chronic sort of allergic state, with inflamed sinuses and throat, and daily throat clearing, year round.
* New gastric and bowel issues.

These complaints could be attributed to an enormous variety of causes.

If your family is experiencing these symptoms, I'd have your houe checked for mold. Homes with a mold problem can cause these symptoms. To attribute them to HCV when not one family member tests positive for HCV seems highly unlikely.

Household mold on the other hand could be a possibility. There are progessional inspectors who can ascertain if your home is contaminated with molds.
Avatar universal
mike posted a research article about occult & persistant viral presence after SVR...very scary...they found replicating virus in 80%+  patients (mike correct me if i'm wrong) and basically conceded that virus remains within us after successful TRX !!.....their methodology is beyond my comprehension/education...basically cultured samples and produced measurable population levels...bottomline? : it lurks,lingers and can raise it's uglyhead given opportunity ...... Sooo,yes ..i am concerned about occult virus...far less so with transmission
Avatar universal
I'm concerned of course, presumably anyone with HCV would be unless they strove to lead a hermits existence.

It's a good question but another equally good would be would be; how likely is it?

It might be useful to qualify the answer; if it were possible and likely in 100% of those that live with us..... then we should all get very nervous.  Of course....... IF that we true we would have already seen many many unexplained cases of HCV.

If the "what if" occult transmission scenario includes that the people never develop symptoms, antibodies, or HCV..... it just seems to be one more thing to worry about.  

When I think how long I have had the virus...and all the people that I have had various forms of contact with that I could have infected but that have not become infected even after decades I think that you can infer that the virus is not easily transmitted.  I believe epidemiologists have had the means of determining and proving this.  If it were very possible we would simply see a higher infection rate.  

I agree with you that science has shown that some HCV can remain even after one achieves SVR.  I would think this might be a more likely area to look for the virus regenerating itself.  So far however the stats on that suggest that less than 1% lose their SVR; even that might be due to the less sensitive PCR's available a few years back.

It may be true that it is scientifically possible.  It might also be true that what you are talking about occurs in a statistically insignificant number of people, otherwise it would have been detected.....and proven by now instead of being discussed as a theory.

Of course...all bets are off if there a scientific conspiracy of secrecy......  : )

A great question, and just my opinion.....

Best wishes,
Willy (whose kids also test clear of the virus)
Avatar universal
C28  . Married 27 years and wife is negative. My thoughts are her chronic nagging keeps the HCV away. JMHO

LOL, and you're hoping to make 28?  Your odds might be greatly enhanced if you keep here from reading this forum <G>
Avatar universal
I will get study details for you.  I have been in touch with the group running the study, but have not communicated directly with the chief doc yet.  I would like to learn more about the study parameters, and how far and wide they will be looking.  Also, to what extent they will biopsy and PCR test the various tissues and fluids, etc.  Although it would be nice to see test results also from households without anyone positive for HCV, as a sort of control group, I do not think that it will be necessary as a first step.  All they need to find in this study is evidence of active, and replicating HCV in the family members' fluids and tissues.  That alone will be a major revelation itself, if that is the outcome of the study.  Of course, I hope they find NOTHING of the sort.  But at this point, I would not place any bets on that happening.  I am more and more convinced that something may be happening, under the radar, as far as 'occult' transmission, and another, different 'mode' of infection.

Let's first see if they find the virus, then consider studying the general population, as a control.  Who knows, there might be some revelations in that study as well! I am just happy that they are finally exploring this issue scientifically, since it has been a real concern for me over the recent years.

I hope you are well.

DoubleDose
Avatar universal
Thanks for the information. As you know, some question the accuracy/validity of the new testing process itself in regards to at least persistent virus. Having a control would certainly go a long ways in addressing this problem. Willing, I believe, posted that AASLD study abstract # LB9 suggests that the absence of post SVR virus in all compartments studied including PBMCs and Liver tissue with the exception of just a few cases. Then, of course, other studies, using different amplification/centrifugal techniques suggest the virus is quite common in these same compartments.

Be well,

-- Jim
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