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Which treatments should researchers test

Discussion in 'XMRV Research and Replication Studies' started by Andrew, Apr 14, 2010.

  1. Andrew

    Andrew Senior Member

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    People are concerned about the effects of anti-retrovirals. There are also threads here speculating about natural remedies and/or things like LDN, which seem to be milder on the system.

    Now, suppose we were asked to suggest some substances to test next. What would these drugs or natural remedies be, and why. And BTW, I don't see this scenario as beyond possibility, as long as we can offer a reason for each one we want tested.
  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Andrew, I notice you have posted about concern over retrovirals in another thread. The problem is possibly causing autoimmune disease in the link you posted.

    Given XMRV is at the base of this, anti-retrovirals will have to be part of the picture. I thought of this the other day. I think a circle is created that the body can not recover from on its own. This circle includes cytokines, other viruses we carry, cortisol or androgens, natural killers, etc. But the circle seems to be kept going by the virus replicating, off and on. All the other parts of the circle are natural body processes.

    Now maybe we can take something else to calm the inflammatory signals before we start antiretrovirals. Or maybe take it simultaneously to reduce pushing it into autoimmune state.

    Otherwise, antivirals for other infections, boosting healthy NK Cells, leveling out androgens, and cortisol. But you won't be able to use these alone to prevent XMRV replication. Maybe hinder cytokines, but those are needed as part of a healthy immune system. The key will be to keep this virus from replicating, that is attacking it at the first cause, (assuming WPI science is correct).

    This will require a similar approach to AIDS.

    Tina
  3. Andrew

    Andrew Senior Member

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    Tina, take a look at the list of drugs they tested to deal with XMRV. It includes things like aspirin and DHEA. If Singh thinks that things other than AIDS drugs are worth testing, I see no reason why we can't explore this too. And this might be our golden opportunity to present someone with a list for testing, assuming a list is developed here.
  4. ukxmrv

    ukxmrv Senior Member

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    Any idea why DHEA was included in that list?
  5. serenity

    serenity Senior Member

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    ok i'm gonna ask the question i've been holding off asking - if this needs it own thread someone let me know ... i haven't asked yet because i wasn't sure it was time (it's looking to me like it is now) & because i was afraid to look stupid, & because i may not like the answer... but can ya'll please tell me what taking antri-retro-virals or whatever you call them looks like? i know nothing about it. i mean, is it pills or an IV? is it a one time thing or a forever thing. really, talk to me like someone who knows nothing about them cuz i really don't. thanks :)
  6. Robin

    Robin Guest

    As my math teacher used to say, there are no stupid questions!

    If they work in XMRV like the work in HIV, then you would probably hve to take pills forever. However it's possible that they may not:

    Antiretrovirals were developed to treat HIV.

    Antiretrovirals work by suppressing replication of HIV. HIV replicates by inserting itself into cells and using them to make copies of itself. It does this very quickly! It can take as little as 2 days for an HIV virus to make more of itself. HIV integrates into immune cells and it kills people when the amount of infection or "viral load" is so high that the immune system is too overwhelmed to do its job, and the body gets overwhelmed with infections that a healthy person could easily keep in check. With me so far?

    Anitretrovirals block HIV from replicating. So, people with HIV who take antiretrovirals are protected from being overwhelmed by the virus. However, HIV stays in the body so people have to take the drugs forever, or HIV will start replicating again. Initially the early antiretrovirals were very toxic and patients had to take a lot of them, but, newer drugs come out all the time that have less side effects and they stuff a bunch stuff into one or two pills (or powders, or liquids) so that the dosing regimen isn't so dramatic.

    Assuming that XMRV causes CFS (thought we don't know yet), we really don't know if antiretrovirals will work. They might. XMRV is a different kind of retrovirus than HIV. It doesn't replicate nearly as much, and we don't know if the replication process causes the immune dysfunction that causes symptoms (like HIV). There may be some other processes going on that need to be corrected. So, theoretically, it's possible that antiretrovirals that suppress XMRV replication will do nothing for our symptoms.

    It's interesting to note that illnesses caused by HTLV, another retrovirus, are not treated with antiretrovirals.

    So, it's very premature right now to speculate!
  7. serenity

    serenity Senior Member

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    thank you Robin. right, the reason i was holding off on the question for awhile - it didn't seem time, but to me... the question of if about XMRV is just about over. so the next question in my head is obviously treatment. i was gettin most of the "we aren't sure what will work yet" but retrovirals seem possible so i wanted to know what they are. ok, so they are pills (powders or liquids). something you take at home. you may have to take them forever but at least you aren't going to a doc for IV treatment every week or whatever. ok. thank you, that is good to know.
    (love your profile pic by the way!) :)
  8. Michael Dessin

    Michael Dessin Senior Member

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    "Given XMRV is at the base of this, anti-retrovirals will have to be part of the picture"

    Whys that?

    In addition, HIV drugs have been tested on CFS patients over a decade ago, with no results.
  9. Doogle

    Doogle Senior Member

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    Would you please give specifics? Who, where, and when along with publicly accessible confirmation. Thanks.
  10. ukxmrv

    ukxmrv Senior Member

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    We don't know the XMRV status of any CFS patients tested previous plus other HIV drugs have been developed / now used as a cocktail.
  11. Robin

    Robin Guest

    No problem, danib!

    I'd like to know, too! Were they clinical trials or a physician experimenting off-label?

    Antiretrovirals could treat XMRV very effectively; we just don't enough at this point to put a lot of hope into them or rule them out. The fact that they're being looked into is intriguing.

    HIV treatment also includes immunotherapy; therapeutic vaccines are being developed too. There might be a role for all of these approaches.
  12. Adam

    Adam *****

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    Thanks Robin. For the lay-eejit like me that was a nice step-by-easy step guide.:Retro smile:

    I'm with Danib on the new avatar BTW.

    One question though; do you really wear heels that high to walk the dog? :innocent1:
  13. serenity

    serenity Senior Member

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    haha! Adam, i used to wear heels that high to do everything! i can't anymore sadly, but when i could i did! :)
  14. Michael Dessin

    Michael Dessin Senior Member

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    None of the anti-retroviral/CFS research is on-line anymore, as far as I can find but I only looked for two minutes.

    "HIV treatment also includes immunotherapy; therapeutic vaccines are being developed too. There might be a role for all of these approaches."

    agree
  15. Rrrr

    Rrrr Senior Member

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    answering the original question of this tread: what treatment should be explored for xmrv, i'd say Peptide T and other Peptides. There is a whole thread on that in this forum. Very interesting stuff.
  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    We already have test showing anti-HIV drugs hinder XMRV replication.

    We also have study showing the virus is infectious, going into health cells and producing more virus.

    It causes illness in mice.

    I asked in chat room if maybe we might end up in anti-retrovirals until the virus is brought down to low level. If maybe since it goes dormant, we might only take the meds when we have evidence it has flared up again. Remember, many CFSers improve and a small percentage go into remission. We don't progressively get worse until we die in contrast to HIV patients (untreated).

    But it was pointed out to me that as long as the virus is in us, starting and stopping anti-retroviruses may cause the virus to develop immunity to the treatment. So likely, we would be on it continuously.

    Tina
  17. Michael Dessin

    Michael Dessin Senior Member

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    Many do progress until they die. but whos recording anyway.
  18. dannybex

    dannybex Senior Member

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    Do we know for certain that XMRV is "at the base of this"? I don't think even Mikovits has gone that far. :confused:

    I like to quote Dr. Nancy Klimas, when asked if recovery or remission is possible (from 2008):

    "Q: Doctor, do you believe in remission of the illness?

    Dr. Klimas: 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. "
  19. julius

    julius Watchoo lookin' at?

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    -peptides

    -5α-reductase inhibitors (finasteride and dutasteride) (+saw palmetto for natural version)

    -mushrooms (reishi, AHCC, and many others)

    -Ampligen
  20. Robin

    Robin Guest

    I would if I could walk the dog, Adam. And I'd wear a voluminous bell skirt too!

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