Neck Problems and HCV..

[DoubleDose]

One of the major symptoms that I experienced over the years with HCV was a frequently stiff and painful neck.  Sometimes the pain was on the right, sometimes on the left, and during some periods was extremely severe and needed physical therapy in order for me to function.  After tx my neck problems have been less frequent and less intense.

What I have noticed over the past five years though is that my spouse and three children, all living in different areas (two are grown and in careers) also frequently experience 'stiff neck', and it seems to be every three or four months for all of them.  This is in addition to frequent spells of fatigue and gastric issues in each of them as well.  Symptoms all very similar to my prior history of symptoms from HCV.  All of my family has tested negative on HCV antibody tests, but I still get a very 'creepy' feeling when I see or hear about their frequent symptoms.  Oh, they also have a frequent eye irritation, sort of dryness and foreign body feeling many times, that causes them to rub or pull on their eyelids .  Of course, I have lived with that symptom for almost thirty years.

Anyone else experience neck problems and attribute this problem to their HCV, or prior HCV infection?

Do any members see any symptoms in spouses, family members, or intimate partners that strike them as similar to their own HCV symptoms?

I get concerned when I see loved ones develop problems that I correlate very highly with HCV, from my own experience.  Maybe its not related, I know of only one thing that causes all these symptoms.

DoubleDose

[way]

I haven't noticed any symptoms in family but as for HCV moving around to different organs maybe it is trying to hide from the interferon when we TX???

[cuteus]

I have to confess that although I might roll my eyes each time you post these thoughts, I find them an essential part of the hcv thought process, and would not have it any other way. You know I always tend to offer alternates on almost every issue. carry on, (I know you will anyway) ;-}

with me, my daughter has perennial allergic rhinitis and other environmental allergies, they can cause what you attribute to hcv, but I can't relate that to hcv in her case because all symptoms have been described for her condition and match them exactly, except for the cough she used to get. She also got better with allergy medications and passing time. So, it would not be easy to attribute her symptoms to hcv.
And take into account that if I was infected at labor, she was breastfed, (thus maybe exposed to hcv that way) for over 4 yrs.  During that time her allergy symptoms were actually better controlled. After stopping the nursing, symptoms worsened. So, if hcv was present in milk, whatever is in breastmilk that protects babies, kept the allergies somewhat at bay and maybe hcv? trying to research this connection will take a lot of familial history documentation, environmental exposure documentation, etc, and things attributable to inherited conditions, discounted. Lot of work, it seems, and what do they do with the information if non serum transmission is proven? I can see how they might avoid us like the plague...

[GrandOak]

Are they doing it via the pod transmission method in order to survive the vaccum of space?

Perhaps HCV is a seasoning for them and we are being prepared for harvesting. (Hey mom can I get some GrandOak on my Wookie burger please?)

[Morgaina]

Although I do like the aliens from space theory, (ever hear of the Raelians and their cloning?) I dated one of them before I was aware of his blind beliefs. Good looking body builder but nutty as a friut bar. Anyway, my kids had all their difficulties way before I even knew of my hepc. They were having bone pain but I only had come and go joint pain.oldest had the come and go kidney infection that pretty well destroyed her kidney, they wanted to remove it but it regenerated within 5 yrs. All unusual phenomenon and there's so much more. My mom is classic hepc with no positive test. Seems there are no answers but so damn many questions. I'm loving it that we can at least look and admit that its a strange phenomena......D

[way]

I think the aliens from space are the ones.

[GrandOak]

Seems to me that like having to be our own advocates with the medical community we may need to become more vocal activists to raise public awareness of a disease which the CDC recognizes as reaching epidemic proportions, although the infection rate numbers of 1.6% they claim seems to fall short of what many other's are observing as being closer to 4%.

see:

http://www.cdc.gov/ncidod/diseases/hepatitis/c/fact.htm

or

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11950818&dopt=Abstract

[DoubleDose]

Funny you should mention the perennial rhinitis....my son has it, and has for about six yesrs now.  It seems to persist through any type of allergy medication, antibiotic, etc. and all seasons, any location in the country, when we travel.  My wife has develop a similar form of perennial rhinitis.  The sinus inflammation, and constant throat clearing is not similar to anything we see in other people around us regularly.  Now I must say that my earliest symptoms, in my early twenties, were also along these lines...sinus problems year round, throat inflammation, post nasal drip, and irritated dry eyes.  

I have long suspected that the HCV MIGHT  (and I am saying 'might') inhabit soft tissues like sinus, salivary glands, throat, gastric lining, sexual organs, etc.  When I read research studies that seem to indicate a similar finding of HCV+ in salivary tissues, gastric mucosa, etc. etc. I always become more alarmed and convinced that this is the case.  I truly HOPE NOT, but being honest, and realistic, I believe it to be so, more than I do not believe it.  I do not know why the researchers never seem to connect the dots from all the studies, and look a little more closely at all this stuff.

Maybe there are reasons that in the past thirty years the allergy rates have skyrocketed in the US, as well as dry eye problems, diabetes, etc.  There just might be some connections to HCV....another sort of HCV infection, not in the bloodstream.  Maybe there can be isolated, organ specific HCV infection in some people, that remains very low level, and causes seemingly 'common' problems.  These are my thoughts.  Have to voice them.

Again, ALL above is my personal opinion and open questions about HCV.  I appreciate your open minded attitude as voiced above.

DoubleDose

[Kalio1]

All the symptoms you describe can be caused by air pollution also, which is a far more likely reason that some hidden nondetecable HCV in my opinion. Stress and enviornmental pollutants are extremely common.
Stress causes neck pain, most people of all ages have some life stress.
These various symptoms are far too broad and general to make a connection to HCV in people that do not even have or have ever had HCV. You don't "catch" HV that way any more than you "catch" cancer that way.
Aliens from space could be injecting people with unknown substances and causing these symptoms too but it is highly unlikely as is the idea that HCV is infecting those around us thru osmosis and causing symptoms even though they have never had one scintilla of virus detected in their bodies.

[DoubleDose]

It could be sympathy issues...but...two of my kids have grown up never knowing I had HCV, nor did the tx.  I hid it very well, and never discussed symptoms around them.  My wife's problems slowly developed over the years, and continue to increase while some of my old sx have faded away.  A prior 'flame' that I had lived with twenty years ago seemed to be having similar problems when I ran into her for the first time in many years.  This relationship was many years before I was aware that I had HCV.  The symptoms: fatigue, dry and inflamed eyes, chronic throat clearing, year-round sinus inflammation, and stiff neck problems.
Funny stuff, sounded very familiar.  

I think there are probably many more families out there with similar issues developing, but are either not noticing it, or have been told that transmission is absolutely impossible without blood to blood contact, and a positive antibody test.  Well, from the 'occult' HCV cases, we already know you do not have to show positive on the antibody test to have HCV....nor do you need to have a detectable PCR!  There may be much more to this virus than we now know, and lots of little research findings keep pointing in that direction.

I know it is scary stuff, and not at all mainstream thought on HCV, but SOMEBODY has to address these questions...especially when we see very curious things going on every day in our families.  My question is:  what the heck is it all about, and why does the medical community not feel more motivated to find out???  Many of them assume they already know all the answers.....  Now I don't know any doctors that think like that....do you???  Nah....

DoubleDose

[way]

You're right could be a sympathy pain. And I just woke up this morn to discover swollem lymph gland under my are. They were just talking about this yesterday too.
Am I that susecptable to suggestion or is this an immune trigger.

[cuteus]

along the same lines, we have to discard the 'sympathy' symptoms in some of the cases also. ever heard of the husband having the exact symptoms his pregnant wife is having? If someone was constantly reminding you to pay attention to any odd symptoms you might feel, while at the same time describing his or hers, a subliminal message might be creeping in?
So many conditions and environmental factors do share the same symptoms, they are immune reactions to triggers. It seems hard to do a physical study on this, unless they can PCR every fluid and tissue involved. It would seem that only a study of reported symptoms might be possible. It would be interesting to see what PCRs of other tissues and fluids would show. I would be interested in doing one, even. But once they show negative, we are back to square one.

[beamishboy]

gulf syndrome is suspected result of exposure to dust particles of depleted uranium ammo-'hot' armor piercing weaponry used extensively in the first and present war..also  deployed military personel were innoculated for anthrax and this has potential sx's according to some researchers(some women of childbearing age refused,were initially charged then were discharged without penalty-i live near Ft. Drum-Army 5th mountain division)...And many people subjected to the stress,danger & trauma of warfare have adverse psychological reaction-War is Hell!!
I have incredible neck & shoulder pain-tight,acheing muscles and creaky ,grinding while i loosen it up-that helps as does topical ointments,hot showers,massage,stretching exercises and movement....trx is most definately a pain inthe neck!....My doc prescribed 200 mg of SULIDAc generic version of CLINORIL a non-narcotic anti-inflammatory;supposed to be esp effective for shoulder& neck pain?? ..just filled script today & i have hesitated to use,like i need another pill to swallow or another ingredient in my toxic brew...Anyone have any experience with this medication?

[Mister beagle bailey]

I also don't trust the gov, etc. Also agent orange was from the war in Nam.  However, there is an illness from the gulf war but I don't remember what they called it.

Beagle

[way]

Wow my neck (and shoulders)is sore too.

What some of you are talking about sounds a lot like "gulf war syndrome" Wasn't that supposed to be from agent orange yet their families were catching it too after they came home.

Maybe they are expermenting on us, putting a little something in our interferon.

With all the controversy about how HIV got started it's not that much of a stretch (for me). And also consider stigma (IVDU) that goes with HCV unfortunately is not that much different from HIV.

Sorry. I'll apoligize in advance to any one who is offended by this line of thinking. But I am a conspiracy theorist and I don't trust the government,AMA or insurance companies to not be in bed together...

[DoubleDose]

For starters I think we need to keep discussing this issue with our HCV doctors, even though they tend to give the matter little credibility.  Maybe finally they will hear enough accounts of familial symptoms, and push to get more research done.  I also am preparing to send very detailed summaries to the leading HCV researchers describing what I am seeing, and what I have surmised.  Somebody in the research world needs to be exploring these problems, and doing some wide-ranging studies on close family members in HCV infected households.  The closest study that I have seen was about two years ago, and they found a 'curious' cellular immune response to HCV in a number of family members tested.  They found these members to be negative on blood HCV antibody testing, and I believe negative on PCR testing, but again, they found a cellular level anti-HCV response, whatever that might imply.  They were puzzled by the findings, and made note of this response, saying they did not understand what the implications might be.  I have heard no more on this subject since reading that study.

You MIGHT think that a finding of this significance, especially if they bothered to interview the family members and maybe find symptoms similar to HCV, would be cause for alarm, and provoke huge interest in figuring out what it means.  I guess not though.   Oh well.  Just a liver virus...you know the drill.

By the way. PLEASE do describe in more detail what you have seen in your family that made you suspicious, and how long these symptoms have been apparent.  Any progression in any of your family members' symptoms?  I would really like to hear more about your observations.

When I have brought this subject up on the forum in the past, I usually receive a chorus of 'pooh- poohs' from a bunch of members, saying that familial transmission is not possible, and I am probably reading way too much into what I am seeing.  I really do not think so!

Thanks for your comments!

DoubleDose

[DoubleDose]

And another symptom that I just remembered is TINNITUS!  I have had it for decades, since early HCV....now my wife has the same and it seems to be loud, and constant.  Another is the development of thin, dry skin on arms and legs.....kind of a 'paper-like' texture in some ways.....seems much more fragile, and just thin.

[Morgaina]

I just put a good effort into reading the article you posted. My poor, addled, recuperating brain got the jist  but not all the facts. It seems there is a researched awareness of hepc actually living and reproducing in different organs and tissue, what the heck has to be done to spur research. We could send a few family histories , if that doesn't tweak their interest they don't want it tweaked....D

[Mister beagle bailey]

You have made a very good point, many of the symptoms you describe I have and have also seen them in my kids and wife yet they teasted neg. to the virus.
Now the question is, how and what do we do?

Beagle

[NYgirl]

My doctor said not to use it because it changed your blood chemistry and we didn't want to do that while we were indeed trying to change it with meds.

I honestly don't think it makes a bit of a difference - if you have to take something you have to take something...as long as you aren't taking it CONSTANTLY (ie: inside pain pills like 2x every 4 hours then it gets to be way too much).

People always forget that there IS tylenol/ibuprofen inside medications when they take them like that is when it is dangerous to your liver.

I think taking 2 every once in a while is a whole different story.

But it's hard to make my BRAIN say it to my heart as I reach for the tyelnol. Ahhhh I LOVE advil.

[DoubleDose]

Oh I agree, each of these sx alone are somewhat common.  But if your still young and active KIDS had a full range of symptoms almost identical to the HCV profile (unexplained fatigue, neck and joint pains on a regular basis, digestive complaints, mood issues, dry eye and salivary irritations, sleep disturbances, and more!), would you still be inclined to believe that the whole set of sx were common to other people in their teens and twenties???

I would doubt it very much.  An occasional neck ache is one thing....but a syndrome of unusual symptoms occurring chronically over time, is another thing altogether.  Especially if they mimic your own experiences from HCV!

DoubleDose

[DoubleDose]

Your mother seems like a textbook example of HCV extrahepatic conditions.  My mother had similar afflictions for several decades before she died from a series of strokes, and finally a cerebral hemorrhage.  She died before tests were able to identify HCV.  Also, she had elevated LFT's over the final years.

Your children also seem to have odd symptoms, as do mine, and it indeed raises lots of questions about the virus that are not on the 'radar screen' for the mainstream medical community.  Until they start to suspect other modes of transmission, and more importantly, until they become aware of the potential for other MODES of infection, I fear we are all just whistling in the dark...alone...without any support.

I become more convinced every year that there are infections taking place that are not showing up in the blood, may have no anti-HCV markers at present, and are causing a range of 'extrahepatic' symptoms in some of the close contacts of HCV infected or previously HCV infected individuals.

It is just too 'far out' for me to assume that all these similar symptoms that I see regularly, in close relations, which have developed slowly over the past ten years or so, are just a big coincidence!  The fact that they test negative for HCV gives me less and less assurance about anything as time goes on.

I also believe the medical community for the most part has been very slow, conservative, and insular as far as really exploring what the ramifications of this virus involve.  They make pronouncements regularly about the virus that are subsequently shown to be not so accurate, then they change their position ever so slightly...one little, painstaking step at a time.

Where are the really curious, inquisitive scientists that want to fully explore the realities and all the modalities of this virus????  I fear that there may be much more of this virus 'out there' than anyone believes.

Other opinions, observations, questions, etc. are invited!!!!

[Alady1620]

I dunno.  I think that the symptoms associated with hep c are also conditions of many other diseases.  These are common problems.  I wish I had a dollar for every time somebody told me their neck was sore.  LOL

Since you said that your family has tested negative on the antibody test, I don't see a correlation.

[Morgaina]

I mentioned female side of family has immune system problems. Well, my mother has psyc problems, fybromyalgia(they think), sjograns syndrom)(eww,sp)(they think), was tested for lupus, degenerating back for reasons they cant understand, nueropathy problems and arthritis. My oldest daughter has been told she has fybrmyalgia, suffered severe infections in her kidney  that would appear and dissapear in hours(er thought I was a lunatic after multiple visits)but they finally caught it and cleared the infection, her kidney grew back to normal size which they believed was immpossible. She had a terrible time with bone pain (heard growing pains too often). She has helped herself through all our zillion conversations through a couple short spells with paxil, a very healthy diet and drinking up to 4litres of water a day(what she finds most impotant)Has hit a middle mangement position with lots of stress so must watch water and diet constantly and is going to use paxil again for a year. youngest daughter has asthma, bone pain, gets a strange flu that leaves her sleeping and almost unable to get really concious for a couple days, always sleeps much more than anyone I know. Just graduated from gr.12, working full time doing manual labor and I'm watching with fingers crossed. We have all been tested (I'm only positive) and the girls continue to have regular tests. We have doctored to death and have never just sat down and become sick but I dont think I can take one more of those looks from the doctor. My own history is even more flowery but this is long already, I've have thought along the lines you are thinking for a very long time!! Maybe sometime we'll see some real data, but it would be helpful if someone would listen. Cant collect data if the problem is not real!!.........Diane

[GrandOak]

Problem with Tylenol is that it's harder on the liver.

My doc said OK for tx in small doses cause it counteracts flu like symptoms.  But to use Ibuprofen or aspirin for aches, pains, and headaches on a regular basis.