Psychological implications of having a retrovirus

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Nov 26, 2009.

  1. ladybugmandy

    ladybugmandy Member

    i know that we are all interested in and focused on treating this virus now and feeling better...but i wonder...if we do feel a lot better one day, how will we then deal with the psychological implications of having a retrovirus? how will this affect our social lives and self esteem?

    we do not have the resources people with HIV do, to deal with all of this!

    perhaps i am more concerned about this because i am still single and without children...

    i am counting on others with CFS to be my friends...because i really don't know if i will have many people in "real life" who would be comfortable being around me, given that it was probably passed in saliva and there is no vaccine.

    i already think it suspicious that a few friends have stopped asking to meet me!

  2. quanked

    quanked Member

    Need to work this out now. Actually, I do not see it as that big of an issue for me unless I want to make it one. HIV coming on the seen has already done a lot of the work. Once it is known how contagious XMRV is and the methods of passing this xmrv (if this turns out to be the cause) as well as the prevalence of this retrovirus, money will become available as the public begins to panic--when they get it that we cfids people are, after all, truly sick and that it is not in our "heads" and that it is contagious. It is terrible to think that it will be the contagious part of this disease that will bring some funding--not our need or suffering.

    The nastiness that was attached to HIV is not attached to XMRV. There will not be groups of self-righteous people screaming about the victims of xmrv getting their proper punishment while they try to prevent research, funding, help and so forth (because some believed that HIV was only about homosexuals being infected) as they did with HIV.

    There will always be those who over react. So be it.

    I have been around too long to allow having a virus, retro or otherwise, impact my sense of who I am. If I have this XMRV it is due to nothing I have done. My inability to get well has impacted my self-esteem though. In many ways I have been able to overcome most obstacles that have come my way in life. Cfids left no room for negotiations, compromise, or any chance to find my way back to me and what I thought of me. Until now, I came to feel conquered by cfids. I now have a hope that I may find my way back to the land of the living.

    Friends will come. I hope that, if recovery does come, that some of those friends will be those who have found a way out of this non-life like existence. No non-cfids person could ever understand what it is like.

    I still meet people, once in a great while, who want to become my friends. Sadly, I withdraw because I know that I cannot follow through.

    You have many supporters here and from what I have read there are some here who seem to know you and like you a lot. If you are pretty much who you seem to be here then I think you will not have problems attracting and keeping friends.

    Will there be some who fear catching the RV from you? Perhaps, but not everyone will be that way. Given what you will have survived if you find recovery I doubt that encountering a few overly fearful individuals is going to bring you to your knees.

    If nothing else, this disease can toughen one up. Cfids is not for wimps!
  3. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    All depends on how it is transmitted, which we don't know yet.

    But I know a woman who has HIV and found someone, got married and has a great life. Her husband did not and still does not have HIV.

  4. sascha

    sascha Member

    doesn't it seem as though IF cfids were passed on to others through saliva, many many more people would have come down with it- i mean family, people in close proximity? yet that seems to have occurred at a very low rate.

    so IF XMRV is the cause, and IF we find out we have it, seems as though method of transmission would most likely be through blood...? i'm just speculating. it seems as though sexual transmission likewise hasn't been high- i haven't heard of one spouse/partner passing on cfids to the other. a couple of cases maybe- but maybe it's under-reported. my impressions are just that- nothing more.

    i know we must wait to get the hard data. this is especially tough situation for young people with cfids. i'm not young (67); have been afflicted with rotating cfids symptoms for nine years.

    2010 will be bringing information we all want and need. best, Sascha
  5. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    As with everything else with this illness, there are contradictions in the evidence of how it might be transmitted.

    There have been clusters of people who are not sharing blood. In school, in hospitals, etc.

    But for marriage mates to both have the disease is obviously less than 50%.

    In my view, this means that there must be another factor. Some possibilities:

    Genetic weakness
    Central nervous system weakness
    Another virus (latent or new)
    Whether XMRV is in an active state when the possibility of transmission occurs

    Or, maybe a combination of the above must occur before someone comes down with CFS.

    The clinicians who early on started doing their own research found problems in the immune system of marriage mates and others who have close contact with CFS patients, although they did not come down with the illness. Could they have XMRV but not have the other factor (see above) that is needed to come down with the illness?

    We will have to wait and see.

    I have a feeling that this virus is unique in that it doesn't just infect and become active and float around in the blood just waiting to get to another person, the way HIV and flu and other viruses do. I have a feeling this virus is active and then goes dormant and then can become active again. Then at its active state, it can pass on to others, by whatever transmission method it can. Then, it may go into the new person and become dormant and not make the person sick and not be in the blood (but in the immune system cells) and not be transmissable from that person to another.

    I think this might explain why some of us have good days and bad days. The virus is going active, being brought into dormancy, and then we do something or something is done to us and it is active again.

    [This Message was Edited on 11/27/2009]
  6. ladybugmandy

    ladybugmandy Member

    what if we are single? who will marry us?
  7. quanked

    quanked Member

    people with HIV and genital herpes, and genital warts meet others that want to marry them. It does happen. How often I do not know. I do not think that it is rare. Women with HIV give birth to babies (c-section I believe).

    Not enough is known yet to draw any conclusions beyond what we now know--something about what we have (CFIDS) is contagious. That is it. We do not know what makes it contagious. I live with my husband, son and during the summer my granddaughter lives here. I had 2 young nieces living with me for several months this year. As far as I can tell not one of these family members have CFIDS.

    I do not think that you need to worry much about whether or not you will find someone who will want to marry you with your diesease. This will be especially true when treatments come along that will improve your level of functioning and you are up to the task of seeking a lifelong mate : )

  8. ladybugmandy

    ladybugmandy Member

    that's the LAST thing i should be worrying about when i am still bedbound! lol

    anyway, they will have a vaccine in a few years i am sure.

    i am glad no one else in your family is ill:)
  9. TigerLilea

    TigerLilea Active Member

    They still haven't been able to produce a vaccine for HIV, so I don't know that a vaccine for XMRV is going to happen anytime soon either.
    [This Message was Edited on 11/28/2009]
  10. therealmadscientist

    therealmadscientist New Member

    Most viruses and non-normal bacteria don't survive long in the inhospitable mouth environment. One look in a microscope at at the "jungle flora" of normal saliva is enough to cause hesitation at any kissing at all, but turns out that that saliva is pretty "safe". Cheers, mr bill.
  11. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Dr. Coffin said the vaccine will be simple for same reason.

    Now, as for saliva, well, it is interesting that animals actually lick wounds.

  12. RunningAntelope

    RunningAntelope New Member

    "In my view, this means that there must be another factor. Some possibilities:

    Genetic weakness
    Central nervous system weakness
    Another virus (latent or new)
    Whether XMRV is in an active state when the possibility of transmission occurs

    Or, maybe a combination of the above must occur before someone comes down with CFS.

    The clinicians who early on started doing their own research found problems in the immune system of marriage mates and others who have close contact with CFS patients, although they did not come down with the illness. Could they have XMRV but not have the other factor (see above) that is needed to come down with the illness?"

    Tina, I believe you have made some great points. I, too, believe this virus, when first "actively replicating" in a new host, to be highly infectious, though the modes of transmission remain unclear. I believe I gave this to my now wife via intimate contact, but she did NOT contract it until she was under severe duress studying for the Bar exam. I, myself, was at a major life "transition" point when I first came down with that flu that would never leave. However, it was obvious to me, particularly in hindsight, both because of my studies in microbiology/virology and my general obaservations, that this was something akin to a retrovirus -- strange that it did so much damage so early in the course of the illness as compared to, say, HIV e.g. This was not psychological/depressive illness. "It was the virus, stupid."

    I also have a sister with CFIDS/Fibromyalgia and a brother who, while not classically diagnosed with CFIDS by Dr. Cheney, shows obvious signs, both clinically and on echo, of having a "fatiguing-type" illness. I tell him he has the CF part of CFIDS, and Dr. Cheney said he was probably able to operate within "narrow boundaries," which is precisely the case. But, even though he was toxic to oxygen, had an abnormally slow relaxation time during which his heart fills with blood (diastole), and showed severe gut/liver problems, his heart was normal and he had not reversed his HPA axis, nor was his immune system dysregulated (and he never did have that "flu"). What's interesting is that I have had very limited contact with my sister, but I lived in close proximity with my brother, sharing a bathroom when I was sick (another roommate never contracted the illness).

    My wife has always said that one needs to have both severe stress and exposure to the pathogen to contract the illness, and she may be right. I also believe there are some genotypic susceptibilities involved here. My mother, who has always been resilient, remains in perfect health, whereas my father contracted an atypical, idiopathic meningitis that almost took his life and eyesight at the age of 66 (I believe it to be XMRV) and now has colon cancer at age 75.

    In short, there are likely several factors in play, but I have absolutely NO DOUBT that this illness is propagated by a retrovirus, that may cyclically go in and out of dormancy or remain latent in the DNA, but coding for proteins at a low level that present themselves on the outer cellular membrane, keeping the immune system hypervigilant. Perhaps that explains the good day/bad day scenario. I do believe that this virus is highly infective when it is acutely replicating, but not so when it is put into latency over time. That's merely my opinion. Neither my brother or my sister's spouses have illness, as of yet, nor do my young daughters.

    The question remains, are anti-retrovirals useful post-acute phase, or, do they only have utility once one first contracts the illness, and are immunomodulators/stem cell treatments/neuro-potentiating treatments more effective once the disease process has progressed and done its "damage?" I use natural, but proven, forms of both, FWIW (antivirals/immunomodulators).

    Here's wishing rapid scientific progress and better health in the new year for everyone. I have asked all of my family to donate to CFIDS research as a Christmas present, and may I suggest you all do the same. Thank you, Bill.

    [This Message was Edited on 11/28/2009]
    [This Message was Edited on 11/28/2009]
    [This Message was Edited on 11/28/2009]
  13. ladybugmandy

    ladybugmandy Member

    i believe that it will be found that transmission through saliva is possible but only if the body has an active herpes viral infection (or least some acute infection). as dr. peterson said, he thinks XMRV is piggy backing onto a herpes virus like epstein barr.

    too many people have gotten this through saliva for that to not be a route of transmission. i am not buying that all these people already had a rare virus like XMRV dormant inside them. thats ridiculous!

    obviously, blood and semen/vaginal secetions will probably also be a transmission route.
  14. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I think you and I ought to start our own research team. I concur with your comments. I don't think antivirals will have much of an effect when it is dormant. Remember, Coffin said that this virus does not replicate a lot, which is why it its offspring is almost the same as ancestors. I think this also reflects that it goes into a dormant stage, or latent stage. But the damage is done.

    And some studies are showing that Ampligen works for some and not for others. I think the key is how far along in the disease process are you.

    I know this is controversial, but Teitelbaum docs say a fuse is blown and the damage is done after a downward spiral. You can solve the initial cause, but the damage is still there and can keep the person down because the systems are all interrelated. While his "stress and central nervous system" as the cause is seriously being questioned, I think evidence does point to the illness caused, possibly by XMRV, as being a cascading result. That's where the other factors come in.

    So caught early, maybe the amount of damage can be reduced making prognosis much more promising from antivirals.

    As for the rest of us, well, we will need more. What more? I don't know.

    I know I am discouraged at all this knowledge in all these other places and I live in the outskirts of Birmingham Alabama with UAB, a research hospital that is at the forefront of HIV research. But when I call UAB for a physician referral, I am told to go to their rheumatologists.... Yet, I know CFS is not a rheumatological disease. It is neurological, immune system and infectious disease. We don't have a support group and we are the biggest city in the state.


  15. ladybugmandy

    ladybugmandy Member

    tina..even people with untreated HIV, who are on death's door with AIDS, have recovered on antivirals. it will take over a year of treatment i am sure, to feel benefits from antivirals...but i think it can happen.

    i am sure there is damage from long-term inflammation and infection, but i am not sure it will be that severe in terms of holding us back too much.

    perhaps it will take a few years off our lives in the end...?

  16. RunningAntelope

    RunningAntelope New Member

    Yes, but the difference between lenti and gamma-retroviruses is significant and probably has repercussions with regard to treatment outcomes. It is entirely possible that XMRV, if solidified as causal, does "piggyback" in on some other carrier (Cheney has for YEARS pointed out the peculiarity of the different length of strains of HHV6a, a virus which, quite unlike HHV6b which is ubiquitous and causes roseola in infants, is itself hard to acquire and yet was first "cultured" in an AIDS patient).

    Will it be possible to "tease" the virus out of hiding and at least put it into a permanent state of dormancy via immunomodulating/anti-viral approaches, or will some brain and organ "repair" be required as well? All of these questions are presuming that we have found a causative and not correlative agent, and are in need of answering.

    As I said, while I never went the "hard-core" antiviral route, I do take proven natural anti-virals (for which I've provided research corroboration on here before) as well as immunomodulators per my doctor's protocol (he never gave up on the idea that a pathogen, probably a retrovirus or something similar is behind this and responsible for shifting the cellular redox state). The good news is that if less toxic synthetic drugs can be found to be effective, this is a slowly mutating virus.
  17. victoria

    victoria New Member

    Some people will never understand no matter what the info turns out to be. About 8 years ago I ran into someone who i thought was a friend; she asked why she hadn't seen me around, told her I had CFIDS, she literally backed up 10 feet, turned right and walked away.

    I strongly believe there will be sites online where you can find people who are educated, no matter what the cause(s) of CF/FM/ME etc end up being for each individual ... and are willing to accept certain things. Just as there are now.

    all the best,

  18. ladybugmandy

    ladybugmandy Member

    wow. what a c-----

    we've suffered so long, i really don't think we will care what anyone thinks because we will be so happy to be well.

    i would be happy enough if all of my friends were ex-CFS patients lol
  19. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    And, many say we don't look sick now. When we are well, we will look even better. Why should it even come up unless we are dating someone?

  20. slammed

    slammed Member

    there is no doubt it exists re CFS/ME. there isn't a huge number of Hollywood actor-type people who have come out and said they have it. why not? because they will be ostracized in their work and their community. sure as heck nobody wants to be a spokesperson for us.

    it's contagious and that scares people, and puts some kind of stigma on us. of course this makes no sense, because it is not as if we chose to get this damn disease willingly ; also, we would walk on fire to avoid giving it to someone else. nobody lives in a bubble and life comes with risks and no guarantees.

    sue, i admire you for telling it like it is. many people want to say these things (and i have said it for years about CFS being contagious), but folks haven't been too open to receive that opinion. so i stopped saying it ; didn't want to be the one to start a panic and to infer that the blood supply was at risk. it is so logical that this is true.

    time to gently bring forward the simple truth. unless you are the CDC: for them , it is time to announce it loudly.