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PLEASE PLEASE can someone summarize last nights meeting!!!!!!!!!!!!!

Discussion in 'General ME/CFS News' started by coxy, Jan 23, 2010.

  1. coxy

    coxy Senior Member

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    hi, i wasn't able to stay up last night to listen, but really want to know of any info that came out of it that was something new and useful to us i.e did she recommend any supplements, what's happening next etc. i know i'm not the only one who's desperate for a sum up.
  2. garcia

    garcia Aristocrat Extraordinaire

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    Dr Yes posted this excellent summary in the main thread on the talk:

  3. Sing

    Sing Senior Member

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    I was thrilled, delighted, inspired by Dr. Judy's communication. We are really fortunate to have such a scientific leader and great communicator now working, in effect, on our behalf.

    I noted some additional points in the Q&A section. She said that they have learned so far that what turns up the retroviral activitiy is inflammatioon and hormones, particularly progesterone. They need to study this further--the effects of all the hormones. Also that we are under a lot of oxidative stress, so whatever can turn that down, can also be helpful. She mentioned glutathione here, I believe. ( I'm sure that this will all come out clearly later.)

    She seemed very focussed on the study of transmission.

    She also said it is very possible to have XMRV but not be sick (yet)--however, to be able to transmit it anyway.

    She seemed to rule out the possibility that what we really have is Lyme, or those other bacterial and viral infections, as prime cause. The XMRV would be the primary cause for interfering with the immune system, then allowing those infections to be expressed so strongly and chronically. If we could treat the XMRV, either our own immune systems would check those infections or treatment for those infections, in combination with our better immune function, would then become successful--Thatwas the idea I heard.

    The XMRV interferes with gene expressions right off the bat. What form of genes get expressed, in other words. It gradually becomes part of the DNA of all parts and systems of the body, over time, as it is able to replicate.

    She spoke about gradual onset being just as possible as sudden, given what they know about how XMRV works.

    She said that those who test positive now/soon can become part of clinical trials, being studied and treated (in some fashion) for free. The implication was to encourage more of us to jump on board!

    But I want to wait for a certified test--

    Sing
  4. Dreambirdie

    Dreambirdie work in progress

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    Okay, so this is a bit confusing, because PROGESTERONE is known to be helpful at DIMINISHING INFLAMMATION. :confused:

    And... recent studies have found it to aid in brain repair after serious brain injury. http://www.lef.org/magazine/mag2009...May-Improve-Outcomes-From-Brain-Injury_01.htm

    In my case, progesterone has been really helpful, as it acts like a natural sedative, easing a lot of the hyper/wired/tired energy that I have due to all the heavy metals in my system. Whereas cortisol (hydrocortisone) has been the ABSOLUTE kiss of death. :eek:

    I think more research has to be done on this, and individual differences accounted for.
  5. muffin

    muffin Senior Member

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    PROGESTERONE is known to be helpful at DIMINISHING INFLAMMATION. Progesterone is also known to help with pain and I have used it on the back of my neck/shoulders to calm pain down. My internist cites several studies that show Progesterone does in fact help with pain. He thinks that because I am putting the cream so close to my spine/brain it is getting in and helping with pain. NOTE: be careful with female hormones though. As usual, there is good and bad and that goes with Progesterone as well.
    And yes, when I first used Progesterone cream it DID help calm my brain down and act as a mild sedative. But we are all different. Just be careful with all those female hormones - I am paying for playing with them now. My surgery two days ago was probably caused by using way too much Progesterone for pain/inflamm/sleep (I bathed in it - if a little is good, a lot is better is NOT correct and I don't seem to remember that). Go easy. Be careful.
  6. flybro

    flybro Senior Member

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    I find prednisone really helps me.

    The contraceptive pill, and HRT other hormone helpers, send me psycho. Both my daughters have awful problems with hormones. My eldest can't take contraception, and my youngest tried tablets to hold of her periods for a couple of days and it sent her into a crying neurotic wasteland for 24 hours.
  7. fds66

    fds66 Senior Member

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    I am waiting to hear more information about hormones because I found that my symptoms improved while I was pregnant. Also had no problems with contraceptive pills either.
  8. starryeyes

    starryeyes Senior Member

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    I use Progesterone cream at times and I've noticed it either calms me or does nothing and I consider myself to be either part of the Tahoe cohort or just like them so I bet I have XMRV. Whether they can find it or not in me. ;)

    Something about this information she's giving seems wrong to me. But what if the long-term effects of Progesterone is that it exacerbates replication of XMRV? Maybe it doesn't cause an immediate, noticeable effect when a retrovirus starts replicating more.
  9. KC22

    KC22 Senior Member

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    I was really surprised to hear her talk about progesterone. I use it daily and have for about 8 years. I swear by it.... I used to have migraines all of the time and now I rarely have one.

    I use bioidentical progesterone cream.. Do you think there would be a difference in that and pill form?? I cut my morning dose down a little and see what happens.
  10. Kathi

    Kathi Senior Member

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    There is definitely a difference between the pill and the bio identical progesterone. The bio identical works. The pill gets very little progesterone into your system. I also used progesterone cream in the early 2000's. It helped my CFS. I most likely would have fell into the illness sooner. But I may have gotten too much and it then accelerated my illness along with chemical exposure to Sikkens stains that I applied to my deck. I can't say for sure, but I know the progesterone cream got my cycles regulated after 25 years of only having 6 periods a year. After that, they were like clockwork. I lost weight, slept better and it kept water weight down too. There isn't anything I can say negative about progesterone cream other than you must be careful not to get too much because it stays in your fat. It can take 2 years to work itself out.
  11. Lynn

    Lynn Senior Member

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    It is very interesting to hear all of you talk about progesterone. I have tried it three times in very small doses (both pill and cream) and had adverse reactions every time. I felt like I was back to the worst days of my illness with high levels of pain and fatigue It also felt like I was experiencing severe PMS with heightened levels of anger and anxiety. The symptoms were very dramatic. My husband asked me never to take progesterone again. When I stopped the drug the additional symptoms went away within a few days.

    I haven't been tested for XMRV yet, but when Dr. Mikovits first talked about progesterone and it's impact on XMRV, it rang very true for me. When I talked to my Doctor about it, he said that progesterone is a pre-cursor for cortisol.

    Lynn
  12. Mark

    Mark Acting CEO

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    Back in October (I think in the original study, or in the CFSAC session) the WPI said they had found XMRV was encouraged to replicate by:
    (a) inflammatory cytokines - (one of?) the body's anti-inflammatories
    (b) cortisol - stress-related
    (c) hormones

    When you take an anti-inflammatory, you deal with the inflammation so the body can stop producing those natural cytokines. So long as your anti-inflammatory doesn't also encourage XMRV to replicate, all is well...

    Same would go for cortisol I would guess - if you top up to the right amount you relieve your bodies stressed cortisol production, but if you topped it up above a certain limit, maybe the overflow (or certain types of cortisol top up) could then trigger XMRV itself - that would cause confusing results.
  13. muffin

    muffin Senior Member

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    NOW I am so confused by the Progesterone discussion. I don't get the progesterone to cortisol thing either. Progesterone cream did help me, but as I have said, it also caused a build up in the endo tissue (sorry men) that had to be removed. I did put way too much on and did not take breaks from it though. So, it staying in the fat for two years sounds about right I guess. We will have to wait for more studies on Progesterone as they are looking into it more now. I think there were studies done in Israel that my doctor cited as a means for pain reduction. Just be careful with those darn female hormones - that's all I know - and I just spent a day at the hospital after playing games with them. Be careful!!!
  14. Sing

    Sing Senior Member

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    Re: hormones, I think the idea is that a HIGH level of cortisol or progesterone can upregulate the XMRV because of how high levels of those hormones turn down the immune system. In pregnancy, progesterone is very high which keeps the mother's immune system turned down enough for her to tolerate the fetus. After birth, if a mother nurses frequently her progesterone stays high enough then to suppress ovulation. This is the usefulness of that level of progesterone in birth control pills. As for high cortisol, this would be typical in a state of severe stress, danger, etc. in which the body's priorities have to shift rapidly out of the routine dusting and vacuuming of immune functioning to SURVIVAL (as in stop the bleeding and claw your way out of the collapsed building).

    My interpretation of what I have read is that more modest, balanced levels of the hormone regulators might not be a problem. It is all a matter of what throws someone's body for a loop. Dr. Judy said at one point that some people respond almost immediately to fluctuations in these hormones--i.e., go into the ME/CFS symptom picture, implying an activation of the XMRV. For example, I do very badly on progesterone--the amount in some birth control pills when I was in my early 30's or the amount in a typical HRT regimen around menopause was enough to make me feel like jumping off a bridge! My health declined with motherhood and nursing so much that I would not have been able to take care of a second child. Whereas, now years later, a low dose of cortisol helps balance my energy, improves well being, dispels the otherwise daily sore throat and malaise.

    However, my symptoms shouldn't be taken as indicative of what is right, any more than anyone else's should be--for another. My bet is that what helps someone feel better, more balanced and normal, is probably NOT causing a lot of XMRV activity. Makes sense?

    Sing
  15. Hope123

    Hope123 Senior Member

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    1. Pregnancy effects on CFS vary according to this article. Also, the immune system is dampened during preganancy so in some autoimmune diseases, pregnancy leads to
    a temporary remission or lessened symptoms.

    http://njcfsa.org/factsheetpregn2009.pdf

    2. Absorption of progesterone cream into the body may be different from a pill form - lower in some cases, higher in others. Also it might depend on an individual's baseline level of progesterone prior to adding more progesterone - e.g. if you're low to begin with, maybe there's less of an effect? Or perhaps XMRV needs a particular threshold to activate? All speculation, WPI has its work cut it for this.
  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    first, I think viruses and vaccines, Mikovitz said on T.V. program, can trigger XMRV replication. So add that to the list.

    Secondly, I find it interesting that some CFS people will show low cortisol and low progesterone. And they are very sick at the time, even though their levels of these XMRV triggers are low, such that they were prescribed replacement.

    Thirdly, someone in another thread said maybe the body reduces the cortisol in defense, since the body figures out that it causes the damaging virus to grow. Now since progesterone also activates virus replication, then a theory could be made the reason we are lower in progesterone is because the body is reducing the level so as to keep the virus from replicating. I don't agree with this theory. But these points do fit.

    Fourthly, I find it interesting that the two hormones that activate XMRV replication are hormones that vary greatly in a healthy person? We women know that progesterone can go up or down based on time of the month, and many other factors. Cortisol is not normally tested through blood because it can vary so greatly in healthy people that a blood test at any given time would not be able to find an abnormality. And, of course, stress can raise cortisol levels. I find it curious these two highly variable hormones are associated with XMRV.

    Fifthly, maybe, as I said before on another thread, we need cortisol and progesterone replacement because even though high levels activate the virus, the immune system has been damaged, causing a cascading series of multiple system abnormalities, that we then can't produce these hormones normally. In that case, it is not a survival technique of the body, but it is a continuous loop that we can't recover from. We get cortisol higher, virus replicates, damages immune system and HPA axis, and cortisol goes down. Body starts to recover, and then progesterone starts the virus again, immune system damaged, HPA damaged and cortisol is low. And it is an unending circle.

    Tina
  17. ukxmrv

    ukxmrv Senior Member

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    Tina,

    In the UK PWCFS can be sent to Endocrinologists and have blood cortisol tests and also things like the short synacten tests. PWCFS in the USA and the UK have been tested for cortisol and it's usually low.

    If cortisol is every high it's not being picked up. The only high cortisol was found in Dr Wessely's patients (the same one's that may have been used for the "we don't have XMRV in the UK research).

    That does tend to argue against it being a loop but maybe a permanent "suppression" instead. We don't know. Maybe it is a permanent "unavailability instead". Dr Mikovits said something the other night about "x" being used by the virus and maybe using it all up? I'm XMRV+ with low cortisol, low cholesterol and low progesterone.

    Just thinking out loud here and trying to tie it in with the few things I have had tested
  18. Dreambirdie

    Dreambirdie work in progress

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    Everyone's input here just re-confirms for me how complex, and confusing this illness is. There are SO MANY variables, due to the fact that CFS affects SO MANY systems of the body. And the profile of its impact can differ greatly from one person to the next. I can't even count how many times I've found something that worked really well for me, in alleviating certain symptoms, and worked horribly for another PWC.

    I think it will take a LOT longer before the details of XMRV's impact are figured out. We are still in the embryonic phase of the research. In the meantime, it's going to be trial and error (as usual) to find what works best for each of us.
  19. dannybex

    dannybex Senior Member

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    It can often be high in the early stages, and then decrease as the years go by. :(

    d.
  20. dannybex

    dannybex Senior Member

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    WELL SAID McDreamie. :)

    I would just add that there are different causes (or triggers) and combinations of causes/triggers for each of us as well...hence the difficulty in diagnosing, treating and ultimately recovering...

    d.

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