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We need a LIST OF TREATMENT OPTIONS to send to Judy Mikovits

Discussion in 'XMRV Testing, Treatment and Transmission' started by Rrrr, May 31, 2010.

  1. Rrrr

    Rrrr Senior Member

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    Judy Mikovits, in an email to me, said that at this time she welcomes hearing thoughts about treatment options to consider. So I'd like to come up with, on this thread, a clean, uncluttered list of treatment options, meds and natural approaches, for XMRV. Let's try to come up with 25 of the top treatment options to send to her.

    [edited: PLEASE NOTE: WPI doesn't "need" our help. Judy did not ask for our help. i told her i had a treatment idea and she said she welcomed it. i gave her mine (spironolactone) and to my shock she said it was a good idea and she wanted to test it in the lab. and then said she welcomes all treatment ideas at this time. i'm sure they have more than enough of their own. but input from expert patients like us can only help expand the pool of ideas!]

    [edited: And to clarify further: Judy Mikovits did not ask me to post a request for treatment ideas online. she simply said she is open to hearing about treatment ideas. it does not mean she is out of her own treatment ideas, it just means she is open to hearing our thoughts too. so instead of me just sending her my 5 or so ideas, i thought why not ask this amazing list of well-researched patients for their ideas, too?!]

    I will start it:

    1. Spironolactone (it inhibits androgens, and androgens turn on XMRV). Judy said when she gets a few days in the lab, she'd like to design and test this drug on XMRV.

    others?
     
  2. Frickly

    Frickly Senior Member

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    Did she say treatment options for ME/CFS or XMRV. I don't know how to treat XMRV, I am hoping WPI will tell me that.

    If she meant treatment options for ME/CFS, well, I highly recomment Glutathione/ATP injections, blood test and long term antibiotic treatment for mycoplasmal infections, Glycyron Plus, derived from black licorice, used as an antiviral treatment for, in my case, Chronic EBV.
     
  3. julius

    julius Watchoo lookin' at?

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    Rrrr,

    I have been very curious about 5-alpha-reductase inhibitors;

    finasteride (Proscar, Propecia)
    dutasteride (Avodart)
    turosteride
    bexlosteride
    izonsteride


    In one study (please don't ask me to find the link) they were shown to decrease XMRV replication 3-fold by reducing levels of DHT (dihydrotestosterone).

    Saw Palmetto is a natural alternative. I have been taking saw palmetto for about two months now with some promising results.
     
  4. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    Reduce oxidative stress and inflammation, and support the immune system, by decreasing exposures to toxic mold.

    This will give other treatments more of a chance to work, and may even allow the virus to be brought under control without any further interventions.

    Lisa
     
  5. cfs since 1998

    cfs since 1998 *****

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  6. dsdmom

    dsdmom Senior Member

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    Although I think it is wonderful that Judy wants our input, I guess I'm a bit confused. Shouldn't the WPI have enough knowledge about this sort of thing - they are the scientists after all. Why are they needing our help on this? Am I alone in thinking this?
     
  7. Kati

    Kati Patient in training

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    Dsdmom, I think it's all good. It's scientists and the expert patients getting together and brainstorming together. While big pharma is working on meds, perhaps some patients would like other things tried that scientists have not thought about?
     
  8. dsdmom

    dsdmom Senior Member

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    Kati if that's the case, I think that's great they want to hear about things other than mainstream drugs. I guess I just feel that they should already know which drugs to try....so I wasn't sure if Judy meant she wanted a list of antiretrovirals (which she should be familiar with) or other things.
     
  9. Navid

    Navid Senior Member

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  10. Navid

    Navid Senior Member

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    cheney's stem cells in panama and costa rica


    ampligen
     
  11. acer2000

    acer2000 Senior Member

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    Yes, I agree GC-MAF.

    Immunotherapy of HIV-infected patients with Gc protein-derived macrophage activating factor (GcMAF). J Med Virol. 2009 Jan;81(1):16-26 Abstract

    "After less than 18 weekly administrations of 100 ng GcMAF for nonanemic patients, they exhibited low serum Nagalase activities equivalent to healthy controls, indicating eradication of HIV-infection, which was also confirmed by no infectious center formation by provirus inducing agent-treated patient PBMCs. No recurrence occurred and their healthy CD + cell counts were maintained for 7 years."

    Who knows if they actually "eradicated" it on those patients, but it sure seems like something someone should look into.

    http://www.thedcasite.com/Yamamoto_file/Yamamoto.html

    Also, Bavituximab

    http://en.wikipedia.org/wiki/Bavituximab

    Both have been tested against HIV and show promise. GcMAF has been claimed to make HIV go "undetectable" for indefinite periods of time. Both also show activity against various types of cancers (Prostate among them). Bavituximab showed activity against MLV and FLV. They are both immune modulators.
     
  12. cfs since 1998

    cfs since 1998 *****

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    If we're talking about a drug that is immune mediated or hormone mediated, how would she test that short of a human trial or animal model? I thought she was talking about in vitro tests. :confused:
     
  13. garcia

    garcia Aristocrat Extraordinaire

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    With regard to this thread here:
    Disintegration of retroviruses by metal chelating agents

    I'd like to see Dr Judy trial the use of chelating agents against XMRV, in particular Lipoic Acid & DMPS. Before I knew about XMRV, I nearly cured my ME by following the Cutler chelation protocol (lipoic acid). To date it's been the only treatment which has even come close to a cure, and I've tried many, many things.

    Also XMRV may be involved in autism in some way and chelation is consistently rated as one of the best treatments by the parents of autistic kids.
     
  14. leaves

    leaves Senior Member

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    Yes I agree, I think this is related to my sulphur problems
     
  15. Rita

    Rita Senior Member

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  16. Jill

    Jill

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    I think they should try to see if Immunovir does something to XMRV or is its effect on maybe on only co-pathogens. For me it makes my glands swell and I gfeel even more like I have glandular fever (EBV). So , it action... is it good or bad?
    Also I've noticed that Flaygl (anti giardia drug) actually helped - but I didn't have giardia - so it must have been another mode of action. I know others who find this also. I think Peter Snows Tapanui flu guys, didn't have giardia, I think they had something else which he inadvertantly treated and their immune systems were helped.
     
  17. HopingSince88

    HopingSince88 Senior Member

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    If WPI is looking for suggestions for testing against XMRV, I would think folks that have tested + for this rv would be of most interest to them in terms of what they have tried and what seemed to have a benefit and what did not.
     
  18. gu3vara

    gu3vara Senior Member

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  19. Rrrr

    Rrrr Senior Member

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    hi fricky,

    sorry, i should have been clearer: judy was talking about xmrv only.

    rrrr
     
  20. Rrrr

    Rrrr Senior Member

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    they don't "need" our help. she did not ask for our help. i told her i had a treatment idea and she said she welcomed it. i gave her mine (spironolactone) and to my shock she said it was a good idea and she wanted to test it in the lab. and then said she welcomes all treatment ideas at this time. i'm sure they have more than enough of their own. but input from expert patients like us can only help expand the pool of ideas!
     

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