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Dr. Judy Mikovits IACFS/ME Newsletter Apr 2010 Q & A

Discussion in 'XMRV Research and Replication Studies' started by shrewsbury, Apr 21, 2010.

  1. serenity

    serenity Senior Member

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    Austin
    i understand Koan, i never know how to answer "where does it hurt" because i spend my life denying the pain. how am i supposed to explain to others what i have to try to ignore myself just to go on?
    anyway, i feel the same way - what struck me was inflammation. i have chronic inflammation from by back injury due to my car wreck - the thing i trace back as my cause. & if someone were sick would they not have inflammation too? maybe i'm wrong but to me it makes sense then that some of us trace our illness start to an infection & some to an accident? yes? (& even some others to a stressful event, which is explained by the Cortisol.) it all just made so much sense! suddenly the pieces all came together for me!
  2. Koan

    Koan Be the change.

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    Me too. There is nothing that doesn't fit. That is stunning after all these years. It was so strange to be a text book case, as we both are in our own ways, and yet be disbelieved by mainstream medicine. That simply made no damn sense!

    Now... well, now... I can barely comprehend it.
  3. serenity

    serenity Senior Member

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    Austin
    it was enough for me, i filled out my form to be part of WPI testing. i'd been holding off but now i'm sure i'll do it if they call.
  4. natasa778

    natasa778 Senior Member

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    Yes, both in brain and CSF
  5. JillBohr

    JillBohr Senior Member

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    Thank you natasa. I just emailed you for this specific question. I do not know what I would do without you.
  6. JillBohr

    JillBohr Senior Member

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    Oh wait, so.... is it increased or decreased?
  7. V99

    V99 *****

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    Could not agree more. It fits like lava in a volcano. (topical)
  8. spindrift

    spindrift Plays With Voodoo Dollies

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    Judy sooooooooo rocks!!!:victory:

    Just got back from my doc to find this post. I asked him to draw blood for the VIP
    test; he had not heard of XMRV and gave me a skeptical look.
    I told him everyone has to trust something and I trust this testing.
    He smiled and had a nurse draw the blood for me. Love that man!
  9. dannybex

    dannybex Senior Member

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    hate to be a danny-downer...

    ...but...if it's possible to transmit XMRV by saliva, and other more casual means, then why aren't more people infected?

    And this:

    "Q: If XMRV is present but inactive, are there any suggestions as to what could be a trigger for (re)-activation?

    A: Estrogens, Androgens, Cortisol (stress) and inflammation."

    Don't those four triggers exist in the vast majority of the population? Again, wouldn't a lot more people be infected and show symptoms? :confused:

    Hopefully someone smarter than I (which means 99.9% of you) can answer these questions.

    thanks in advance,

    d.
  10. Dreambirdie

    Dreambirdie work in progress

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    Hey me too Dan, I have the same questions.

    I have "exchanged saliva" with a quite a number of people since became ill about 30 years ago, and NONE of them has ever come down with CFS. Why not? I'm still in touch with most of my ex's, and they have not gotten sick at all. Several of them (except for the lazy Bavarian guitar player) have had A LOT OF STRESS in their lives, and I think at least 2 had some androgen issues--(at least judging by their rather unpredictably bad tempers). So why didn't they get sick? What's up with that?

    And my current partner of 11 years, with whom I have been regularly been exchanging saliva all this time, has not gotten sick either.

    And what about other people I've had friendly kisses on the mouth with, and shared drinks with, and bites of food, etc... I've not seen ANY of my friends and family getting ill with CFS.

    My thought is that immunity is a big factor. Some people have STRONG immune systems, and others (like us) just don't.
    What other explanations are there?
  11. Otis

    Otis Señor Mumbler

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    My brain is toast.

    I'm not clear on the answer here. Is she saying that overlapping conditions have a 35% hit rate - without a CFS Dx - so for example Fibromyalgia or MCS alone? It's hard to put that in context of the CCC criteria. If the CCC criteria ARE met, it would seem that 35% is low unless an overlapping disease somehow takes down the hit rate. :confused::confused::confused:

    God bless Dr. M. but I do find her statements hard to interpret at times.

    Otis
  12. Otis

    Otis Señor Mumbler

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    Dreambirdie,

    I had some of the same thoughts, except for the bit about the lazy Bavarian guitar player. ;)

    The thing that's hard to explain without casual transmission is the outbreaks but in general I agree that compromised immune systems must let XMRV get hold.

    Otis
  13. Koan

    Koan Be the change.

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    She didn't say that it was transmitted so casually, simply that it was theoretically possible. We don't know how it's transmitted.

    The triggers, I think, relate more to what triggers replication of the virus in someone already infected and has little to nothing to do with who "catches" it. Not everyone has the same levels of hormones, perhaps the 4% who don't become ill have very low androgens.

    I have no brain right now but I don't see a problem with this.
  14. serenity

    serenity Senior Member

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    Austin
    yeh i interpreted it more like Koan, she wasn't saying what would make someone succeptible (sp?) to catching it, but what might trigger it to get ya' if you already had it. of course, i have no idea what i'm talkin about at all & the questions ya'll raise are completely valid. maybe that was too easy, maybe i want it to make sense too badly.
    i am starting to think in terms of "if i ever beat this" rather than "i just have to live with it forever" & that is a very heady feeling. i want it very much & am well aware that can taint my thinking, tho i try to just listen to what ya'll have to say & wait... but to me, it was an ah ha moment - as to why the set of people who seem to get whatever we have seem to have it.
  15. dannybex

    dannybex Senior Member

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    I tend to agree DB...and regarding the immune system, that's perhaps where other triggers may come in -- things that disrupt immune function (in some people anyway) or mess with the thyroid, liver or kidneys -- like environmental stressors (pesticides, solvents, heavy metals), and perhaps methylation issues, genetics, etc -- I dunno...just a sick layman's guess.

    :confused:
  16. dannybex

    dannybex Senior Member

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    Yes -- thanks Koan for the clarification.

    Danib -- cool name btw(!) -- :Retro smile: I try to keep in mind that people have actually recovered, even though it's very rare -- and I know a few from my local support group who have. That keeps me going even though there have been many, many times when I've just wanted to end it. I found an email last night from 2006 where I was telling someone I was giving up...didn't think I would last another month or two...and here we are 4 years later.

    My favorite quote is from Dr. Klimas when she was asked if remission was possible, replied:

    Absolutely! And complete resolution! It happens, but not often enough to make promises. I get the best hugs on airplanes and other public places when I bump into patients now healthy and happy.

    So don't give up hope! We're all in this together......
  17. Summer

    Summer Senior Member

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    From the beginning they have said that only 10% have the predisposition to be infected. 90% will be exposed but clear the virus. It's in the media links very early articles. Dan Peterson may have been the source of that. It's been awhile.
  18. serenity

    serenity Senior Member

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    Austin
    haha, thanks Dannybex - what did she say in there somewher that she thinks 85% recovery is likely for everyone if this all pans out! i'll take it !!! :)
  19. gracenote

    gracenote All shall be well . . .

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    Here's a quote from the Q & A. (May clarify or not.)

  20. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Ok, first of all, I think it is showing up very little in the blood, even if person has it in their cells. Someone correct me if I am wrong. Plus, it seems to be actively replicating with these triggers, which leads one to think there are times it isn't. That would mean it isn't floating around in blood when it is not actively replicating?

    If not in blood, or scarce in blood, likely it is not in saliva. Not saying it can't be there, just that just because you have the virus doesn't mean it is in your saliva all the time.

    Additionally, many of those people that you exchanged your saliva with may come down with CFS, just not yet. Remember, the illness is more common in women. Yet, retroviruses do not have different infectious rates according to gender. So that means a lot of men have it but don't get sick. And, most of the people women exchange their saliva with are men. LOL (Although this is changing) So, it is understandable that your marriage mate will have the virus and not have the illness. The rate of getting the disease is different in men and women, even given men and women experience stress. Remember also, women are more likely to get it at 35-50. So, this leads to some hormonal factor being thought of as playing important role, beyond cortisol and other infection. Is progesterone more of a trigger than the others? Are they equal in their triggering replication effect?

    Also, the indications are that some people have it, show neurological symptoms, but don't have the fatigue or immune system problems. As mentioned, could this be because women's immune system is different. Could it be genetic differences? Could it be what part of the body the virus does most damage, different in different people depending on where it finds root? How many of the people we exchanged our saliva with are suffering from other illnesses, possibly caused by this virus, even though they don't have CFS?

    And, I know I don't have many who agree with me, but I think the virus is more prevalent in healthy people than 3.7%. It is so hard to find on tests they have been using so far. And I would think it would be even harder to find in healthy people whose bodies have it under control.

    A flashback has occurred: My band director fussing during my junior high days because we were "sucking face". I have to say, I certainly did my share.

    I looked for youtubes of people kissing. I found a lot. But for some reason, they don't seem funny. They actually seem gross. So I will keep them to myself.

    Kissing will never be the same for me.

    Tina

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