Are reactivation of viruses with M.E. contagious?

Discussion in 'Fibromyalgia Main Forum' started by lela7, Aug 10, 2008.

  1. lela7

    lela7 New Member

    Would anyone have any information on whether the reactivation of viruses with M.E. are contagious when they reactivate e.g. Cytomegalovirus,EBV, mononucleosis, etc?

    I can't seem to find any info on this.

    Please help!

  2. kbak

    kbak Member

    There are highly divided opinions on this. Just from what I've read it seems like the researcher docs that have seen hundreds of patients have come down with the illness, altho some haven't.

    People that you mingle with on a daily basis I don't think it's a problem. I think it could be possible with certain family member's that might be suseptable. It seems to be more likely when your dealing with a high concentration of sick people on a daily basis like Dr. Cheney was.

    My husband is not affected but my daughter is. Your going to have a hard time getting proof positive answers because no one has any proof, just opinions.

  3. lela7

    lela7 New Member

    Thanks for taking the time to reply kbak, much appreciated.

    In your reply were you talking about your daughter possibly having got ME from you or the virus/viruses from you when they were reactivated in you?

    Kind Regards
  4. kbak

    kbak Member

    Hi Lela,

    I don't think you'll find it that unusual that more than one family member is sick in a family. My daughter came down with a terrible case of mono her senior yr. of high school. She was out of school 6 wks.

    I think it set her up to be susceptible to my M.E. There's not a whole lot you can do about it. You can't not live with your family. This does not occur in all families tho.

    I do stay completely away from new borns. Even if there's no risk I'm not chancing it. I don't think we're infecting everyone we meet! Like I said it isn't proven one way or the other right now.

    Take care,
  5. simonedb

    simonedb Member

    book reported that often saw more than one family member with it.
    also seemed to be a high correlation of like twa flight attendents or other airline people that got it and a bunch of people in an orchestra got it who travelled together.
    I have not been aware of anyone I dated over the years ever getting something similar to what I have but then I am not 100% sure what it is I have.........
    [This Message was Edited on 08/17/2008]
  6. ladybugmandy

    ladybugmandy Member

    hello. i have been trying to figure this one out, too.

    there are so many reports of more than one family member having CFS and clusters of CFS.

    on the other hand, mine was triggered by EBV and this is a very common virus that most people have been exposed to.

    i have dated 2 men since i got CFS over 15 years ago and neither of them showed any symptoms of illness.

    perhaps people with more than one case in the family should check for mold/allergens/air quality, etc.?

    maybe it's a herpes virus that has not yet been identified (apparently, there are hundreds....and herpes viruses often travel together from host to host).

    perhaps it's the HHV6 A variant, which is less common.

    dr. cheney found a new virus...a combination of a herpes virus and a retrovirus in some brain autopsies...but this wasn't duplicated.

    maybe it's a animal virus....maybe parainfluenza-5?

    maybe its even a bacteria!

    perhaps CFS is caused by one of many causes or a combination!

    who knows.....

    [This Message was Edited on 08/17/2008]
  7. lela7

    lela7 New Member


    Thankyou everyone for replying. I guess I have somehow not made myself very clear, sorry about that.

    I do not mean ME as a virus you catch or being contagious.

    I am talking about how people who have ME are known to have viruses they have had in the past reactivate, some which one usually only has once in a lifetime because you become immune to them eg. cytomegalovirus. But with people who have ME they can find through blood tests that these viruses have reactivated.

    You know those well known recurring I feel like I have a virus running around in me feelings that sometimes doesn't go away for months on end or is there part of the day then suddenly gone then comes back again. Maybe you don't relate that experience to a reactivation of a virus to whatever degree as being part of having ME but I do.

    So my question is: with a reactivation of cytomegalovirus, EBV, and/or mononucleosis etc. in your system would those viruses be contagious in their reactivated state as opposed to having caught them originally from someone else and can anyone direct me to research or personal experience regarding this please.

    Hope that's a bit clearer. Can't expect too much from a ME brain, I'm sure most of you can relate,lol.

    Kind Regards
  8. ladybugmandy

    ladybugmandy Member

    herpes viruses are shed on and off throughout our lives, sometimes infecting other people.

    they are reactivated more often in people with weak immune systems so i suppose it would follow that they are shed more often in people with CFS.

    usually, it doesn't matter, since most people have already been exposed.

    i think i read that husbands and wives each usually has the EBV strain that the other carries.

  9. simonedb

    simonedb Member

    I think I know what you mean lela, I was just sayin' in rounbabout way I dunno fer sure and I dont think anyone else does either

    but that makes sense what was said about the herpes virus, I wouldnt be surprised if its the same with whatever is going on with m.e. in people, just like with herpes, even if someone doesnt have apparent sore, they could potentially infect someone else, there is viral shedding when one looks healthy
    but thats what is interesting that none of my partners have gotten this that I know of from me, but if I do have say hhv 6 which i probably do I spose as I had recurring mono as a teen before i got cfids or whatever it is that is holding me back all these years, it is also possible that i passed on something to partners and its dormant in them and they just didnt get sick, sort of like the difference between fullblown aids and having HIV, its not necessarily the same experience

    hmmmm, sorta scary in a way, no wonder the govmt and ins co.s don't want to clarify it...........
  10. kbak

    kbak Member


    There are several good labs that can test for the reactivation of viruses like HHV-6, CMV, and EPB. This is a chart of what's available for testing.

    This should give you a good idea.

  11. simonedb

    simonedb Member

    so say the virus shows up as reactivated, its contagious then?
    I am curious, how does a test look different, I just know of the general tests that show whetehr one has antibodies, what does a test with reactivation show?

    Could you explain how that works say in herpes 1 and 2, I thought once someone was exposed there are always antibodies and that the majority of the population would probably show antibodies but doesnt mean they are all contagious and that is why sometimes doctors don't like to test for it because the tests arent that meaningful-this is what a top university doc told me but she was no expert on cfs.

    when someone I dated had herpes (1 or 2) I was trying to decide what to do and a couple of physicians said that one could never be assured of safe sex with someone who has occasional breakouts of herpes 1 or 2, even with protection, even when its not apparently active.

    And I know Dr Cheney wasnt testing for viruses as much because the fact that someone has antibodies doesnt mean that it would necessarily make sense to treat for it now.
    My impression was that the medical community was still pretty divided on how to approach this, not a consensus and a lot more to learn about viruses.
    But no doubt my m.e. brain obfuscates things more so please do explain if there is something I am not getting here.

    [This Message was Edited on 08/18/2008]
  12. ladybugmandy

    ladybugmandy Member

    fact is, antobodies tell us very little. according to dr. lerner, they are "useless".

    all antibodies really tell us is if we were exposed already. if they are very high, they will certainly suggest active infection but if they are very low, it does not rule out active infection.

    if someone was exposed to herpes type 2, they carry the virus but you will not know if they have had genital sores in the past (unless they tell you, of course). they can still shed the virus from time to time.

    if they are on valtrex, their shedding decreases but does not stop.

    how likely infection from shedding is not clear but certainly can happen.

    if a herpes virus such as EBV is active, perhaps they can infect you but perhaps not...probably they are shedding it in saliva. people don't generally worry about this because for most people, it does not cause illness.

  13. Forebearance

    Forebearance Member

    That is a very good question, Lela. I wonder about that too.

    All I can say is, I don't donate blood. And I don't go around kissing a lot of people or sharing drinking glasses, etc. Just being on the safe side.

  14. alangan1

    alangan1 New Member

    I have had CFS for years and also have had the EBV. The past couple years I have been plagued with unrelenting cold sores. These are constant, one heals another pops up on the other side of my mouth. One was so big on the inside of my lip, it looked like a fat-lip. They have even gone down the chin and just grown into lesions on the skin. I am taking the anti-viral med now, the blue one (valtrex). BUT, I am scared because they have been so unrelenting, I feel weak. Can I trasmit these to my healthy young adult child or others? I would be very pset if If I ruined my sons life by giving him one of my virus.I also worry that people will think I have the sexual herpes because of this and I dont.
  15. SpecialK82

    SpecialK82 New Member

    Sue - I didn't realize dr. lerner said that antibodies were "useless". I'm totally confused on this issue. Can you explain what a titer is exactly. For instance 1:540 - is it a ratio, or a range??

    Are there studies of healthy people and what their EBV titers are? Is it possible that healthy people have high titers but they have no sypmtoms of illness?

    In other words, if that is true, does the fact that we have high titers mean nothing if that is not what determines if we are sick?

  16. lela7

    lela7 New Member

    After having had EBV and Ross River Virus test show antibodies for these conditions prior to developing ME I later found that after having tests for these same viruses after diagnosis of ME I no longer had the antibodies.

    Sorry to hear about your severe coldsore condition
    alangan 1. Coldsores are so prevalent your son could catch them from anyone anytime so no point in blaming yourself if he gets them.

    There is a benifit believe it or not to having them and that is if he comes in contact with someone with genital herpes he may not suffer from genital herpes as this is quite often what happens when someone initally has the herpes simplex virus(coldsores).

    At a guess I'd say your coldsores are so severe due to you weakened immune system from ME and your son may not react to them in such a severe manner if he did get them from anyone.

    THANKYOU FOREBEARANCE. I also take the same precautions.

    Thankyou everyone for you interesting replies.

    Wishing you all well.

    Kind Regards
  17. kbak

    kbak Member

    I am so not an expert! I copied this and maybe this will help.


    Herpes Virus Reactivation and Recurrent Infection

    Herpes viruses may become reactivated and travel from the nerve center (neuron) down the nerve cell to epithelial cells at the initial site of infection. A number of conditions or stimuli can reactivate the virus resulting in recurrent infection.

    The severity of symptoms during recurrent infection vary greatly, influenced by the strength and numbers of replicating virus on one side and the ability of the immune system to prevent viral infection from spreading.

    A number of factors can affect reactivation:

    Ultraviolet light (including sunshine)
    Suppression of the immune system
    Trauma to latently infected nerve cells
    Pneumococcal pneumonia
    Symptoms may not always be present during recurrent infection: more severe initial infection is associated with more frequent and severe recurrent infection. People with recurrent infection can shed virus and be infectious to others regardless of whether or not they have symptoms.

    HHV-6, CMV, and EPB are all herpes viruses.

    This site is very good for understanding these viruses better. They explain why certain tests are better than others for detecting these viruses. It really isn't looking at antibodies but more viral load.

    As I understand it even that changes, so you can have a high viral load at one point and virtually nothing at another point, but your still sick.

    Boy if anyone can do a better job with this please jump in.
    You are argueing what so many docs who are not into complex viruses argue, that just because you test positve for a virus it doesn't mean you have it. True. That's why the percise testing. Elisa, PCR, Western Blot, ect. is so important.

    No one can tell you if you are contagious to other's with HHV-6, or CMV, ect for sure because no one has proof positive. Dr. Cheyney does believe HHV-6 is contagious, other's don't.

    I don't know if this helps or makes things worse:)

    Take Care,
  18. alangan1

    alangan1 New Member

    I appreciate the clinical data here, thank you. It seems many are more informed on these issues than the health care providers. No surprise to me.
  19. alangan1

    alangan1 New Member

    My significant other works in a hospital. Requiresments are that employees all are tested for Tb. The test came back positive, no doubt from patient contact, they were not concerned at all, clearly no TB is present either. Is tis something i should be freaked out about??

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