If XMRV is the cause why do people get it after mono and other bugs?

Discussion in 'Fibromyalgia Main Forum' started by woozyman, Jan 23, 2010.

  1. woozyman

    woozyman New Member

    If Xmrv is the cause of cfs/ME then why do people get it after having mono (glandular fever) and other bugs? And how does ME happen in epidemics then if it isnt transmitted through the air?
  2. spacee

    spacee Member

    I will relate to my son having asthma. He was born with a genetic dna towards asthma. Then when he was 3 yo, while in a heavily trees area on vacation, it triggered the asthma. He has had it to some degree every since.

    At least two CFS researchers that I am aware of think that the virus from the mouse became a part of some humans dna in the last 100 years. That is XMRV. There different triggers with EBV being one of them, other stressors to the immune system being others. It triggers the XMRV to react and the CFS symptoms erupt.

    Now, the part about the outbreaks is interesting and if all these people carry xmrv in their dna, then then xmrv is really widespread. But I am NOT saying it is widespread. Nor or the docs I am quoting.

    Let's just say, it seems there is still a lot to be figured out yet.

  3. TeaBisqit

    TeaBisqit Member

    I've always said this disease works with whatever is already floating in your system. I think if XMRV is it, it's probably dormant until you get another infection that wakes it up. I'm not really sure, but it kind of makes sense.

    I believe it was in vaccines and I don't think anyone will ever convince me otherwise. I think the vaccines open a backdoor for you to later get this in life and then if the conditions are right and the right pathogen gets in, it lets it out.
  4. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    That question about why outbreaks if not passed through air would have been a good one for Mikovitz.

    I have wondered the same thing. I suspect it is more easily transmitted. In fact, it might be much more common in healthy controls, but since it is harder to find when dormant, then maybe it isn't being detected in them. And we would expect the virus to more active in sick people and more likely to be dormant in healthy people.

  5. AuntTammie

    AuntTammie New Member

    environmental causes have been suspected for awhile as possibly contributing (pesticides and other chemicals, for exp)....if they served as one trigger to activate XMRV (& if XMRV is a cause) that would explain how an outbreak could happen without XMRV being airborne
  6. pagoda

    pagoda New Member

    I asked my doc, Eugene Shippen in Shillington PA, a very similar question i.e.--why CFS after having Lyme? This was in 1997--

    His simple explanation--"The Lyme has the effect of a buckshot pattern over your body and affects 'weaker areas'."

    I realize that this is vastly understated but has seemed to hit the nail on the head for me. As I addressed symptoms, many improved. At this point I vary betweeen 85-92% but can do myself in with too much activity, varying too much from my routine, etc.

    I haven't discussed this too much w/him lately. At my last appt. I did mention I had found this board and learned about some of the research, etc. He is currently part of a group that shares info on CFS/Fibro--
  7. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I am thinking, again, that CFS is an immune system dysfunction that is caused by XMRV, along with a factor that activates the virus. I also think other infections do stimulate XMRV replication. I wonder if the type of co-infection may determine whether they spiral into the immune system dysfunction of chronic high cytokines and low T Cells and NK Cells.

    Say we have 10% of "healthy" people positive for XMRV. (I suspect that more healthy people have it, but it isn't active when tested, so it is even harder to find than it is when active, as study showed in study.) These people might have mild neurological symptoms that are just considered personality types instead of illness. Maybe they are a little more like the absent minded professor. They are in sympathetic mode (of autonomic nervous system) overdrive, so they are go getters. Their immune system is battling the XMRV, but it basically keeping it in check. This would be similar to HIV positive people who show no symptoms. Difference is in HIV continues to replicate until the immune system loses the battle and symptoms start.

    So these "healthy" people who are XMRV positive, imagine some infection passes through an area. And many women, who already have progesterone keeping the virus active, now have something else turning on the virus. Maybe a cold won't be enough. But maybe the flu, or mono or another severe infection comes through. Or maybe it is multiple infections in the area, one after another. So the XMRV doesn't go back to dormant stage because of all the factors turning it on. Or say some of the men, who are keeping their bodies flooded with cortisol, suddenly get an infection that is passing through the area. Or, as someone else mentioned, there is an environmental factor. The combination that is needed to push someone into the chronic immune system dysfunction loop of CFS, may be specific to geographic areas.

    In this case, it isn't because XMRV is passed through the air, but the other factors such as other infections or environmental make that 10% come down with CFS. Whereas other geographic areas don't have those other factors, such as series of viruses or environmental factors. So, they are still happily living their life without illness. So maybe the rate of XMRV infection is the same, basically, no matter geography, but the rate of CFS becomes higher in certain areas at certain times when the triggers come together in a perfect storm scenario.

  8. Meg1710

    Meg1710 New Member

    Hi luminescentfeeling!

    I was interested when you said that you have been tested and confirmed as having the XMRV retrovirus....and you are in the UK. How did you go about getting the testing done? Were you fairly convinced that you must have fit that ME/XMRV demographic? How did you feel when you got the result - blown away I bet?

    Would love to know more!

    [This Message was Edited on 01/25/2010]
  9. fight4acure

    fight4acure Member

    Hey! I will try to answer this question the best I can, but I know it is more of a statement you are making.

    Dr. Kerr in Europe is going to investigate this. Yes, epidemics are right. My post mentioned the same thing a month ago, when I first found out about XMRV. It doesn't make sense.

    But, If you look at the research threads I have, you will see, on the first research thread that there is a doctor, Dr. Johnson, in Indiana, who did a study on FMS and some of them had CFS as well, and they all had signs of viruses at high levels attacking their body/systems, so-to-speak.

    Maybe something is contageous in one way, and maybe the XMRV takes a piggy back ride on all of these other illnesses, viruses, etc. just like AIDS takes a piggy back ride on illnesses like ... I forgot the illness... hold on, I'm thinking... its gotten by a bite from a mosquito, and is wide-spread in Africa. Why can't I think of it?

    Sorry I'm not much help... lol

    Fight :)
  10. fight4acure

    fight4acure Member

    10%??? of healthy people??? I heard it was more like around 4%, not 10. Has it changed???

    Fight :)
  11. AuntTammie

    AuntTammie New Member

    were you trying to think of malaria?

    also, it WAS 3.7% of the healthy controls....I think that Tina was just speculating on the possibility that there are more than we know of so far
  12. fight4acure

    fight4acure Member

    When I was relaxing and watching the news, I come up with the "Malaria" word, finally!!!!

    Fric*en Fibro-Fog!!!! Of course my stupid doctor says my memory problems are stress related, lol, and he's the one who causes me much stress, lol.

    Fight :)

    Thank you![This Message was Edited on 01/25/2010]
  13. fight4acure

    fight4acure Member

    Please find that study for me as I would really like to add it to the list of research studies that I share on here with everyone, and it keeps it organized for me and everyone who wants to see it.


    Fight ;)
  14. ladybugmandy

    ladybugmandy Member

    i now think that XMRV is transmitted just like EBV and causes symptoms very much like EBV and maybe it wakes up EBV in your body so the blood tests say you have EBV...when its really primary XMRV infection.

    i know that might be far fetched but nothing else makes senses to me if, as mikovitz said, xmrv does not in fact "piggyback" onto another herpes virus.

    i just cannot believe i carried XMRV all along. it doesn't fit with my family history at all and doesnt fit with so many people i have met.

    maybe its transmitted by saliva only in the acute phase, afterwhich it can be transmitted through sex and blood.

    thats my personal opinion
  15. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Yes, sorry. I was speculating.

    I figure if WPI is saying they are showing false negatives among CFS patients, who are more likely too have an active XMRV, then the false negatives are more likely in healthy people whose body is keeping XMRV dormant.

  16. Meg1710

    Meg1710 New Member

    Thanks luminescentfeeling!

    The truth eventually WILL WIN and even the UK will not be able to ignore the overwhelming scientific evidence on XMRV should it be validated in further studies. Intellectual integrity will simply not allow it.

    I'm sure many doctors are very scared of losing face - especially the ones like the psychiatrist that you mentioned who are hard-nosed advocates of the psychiatric model, CBT etc. I guess in the face of overwhelming evidence some idiots will still deny the truth, which is what some did with the HIV/AIDS connection.

    Even as a relative layman and a relative newcomer to ME/FMS, I perceive that so much has pointed in this direction over the years. I simply don't know why doctors can't 'see' it. We called this condition a post-viral syndrome for a long time, and there has been suspicions of a viral cause for many years. It does 'appear' that they might be onto something with the XMRV findings.

    It must be so validating for you to have at least reached that first step! You can be smug in that respect! Do you know how many of the group tested from the UK came back with positive results?

    ......spoken very quietly......My only intense fear is that the figures are being rigged and falsely positive results are being churned out to back up the theory. I certainly DON'T WANT this to be the case but you know how it happens from time to time and I suppose we hold our breath until there are more widespread and independent findings of similar results. In the meantime I say YAY fantastic findings, but I musn't get too carried away!

    Meg[This Message was Edited on 01/27/2010]
  17. fight4acure

    fight4acure Member

    You may be right about the saving face deal with the doctors, because now my doc is prescribing me more anti-depressants, rather than a good anti-viral med, and he's acting like he doesn't know what to do for me, or doesn't want me as his patient no more. He no longer cares to hear about my symptoms, and not even my bad reactions to my anti-depressants.

    Anyway, I'm going to find a better doctor. One more compassionate and more intelligent about my illness.

    You know what else? My grandfather died of prostrate cancer. It could have passed on throughout the generations, because there's at least 6 of us with severe pain, and FMS/CFS/Lyme disease symptoms, and/or diagnoses. The men in the family aren't dx with FMS or CFS, but possible Lyme disease. So I'm thinking this was passed on throughout my family, and only activated in a handful of us so far... could be more, as my dad's side of my family doesn't talk about health problems much, nor do I see them often enough to find out.

    Fight ;)

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