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Rituximab, a Possible XMRV Treatment?

Discussion in 'XMRV Testing, Treatment and Transmission' started by Marco, Dec 8, 2009.

  1. Advocate

    Advocate Senior Member

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    I LOVE coconut oil. Sometimes I take the lid off just to inhale. I especially like it on kale, collards, lima beans, and rice. Maybe with some ginger root, lemon, garlic.
  2. julius

    julius Watchoo lookin' at?

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    Advocate,

    I'm not sure if cooking breaks down the acids. I've read that it doesn't, but it seems to me that since only 'virgin' oil has the active lauric acid that cooking may affect it. Not sure though.
    I love the smell of it too. My wife is Thai and uses a lot of coconut milk in her cooking, which is the main reason I married her :Retro smile:

    CFS Since,

    Lauric acid is found in only a few sources in nature. One of them is human breast milk (and several other mammals). Breast milk is known to support the underdeveloped immune systems of newborns. So, and this is just conjecture, I think it is worth a try. Especially since it is so cheap and has no negative effects. I tried pure virgin oil for a while, but only for a a week or so. I really couldn't get it down after that...and I can take some really horrible tasting stuff.

    One study shows that it prevents transmission of SIV in monkeys. http://www.nature.com/nature/journal/v458/n7241/full/nature07831.html

    Here's another site with lots of info,
    http://www.aids.org/atn/a-033-03.html


    I also just read this http://www.wellnessresources.com/products/monolaurin.php,

    Monolaurin vs. Coconut Oil: The Quality Difference: Coconut oil is a natural source of lauric acid. However, in coconut oil the lauric acid is contained within triglycerides that do not bind to cell membranes and are not biologically active for natural immune support. Breaking down the triglycerides of coconut oil into something useful happens only in tiny amounts, if at all, making coconut oil an inferior comparison to the highly biologically active monolaurin.

    It's a commercial site, so take it for what it is.

    I want to try the monolaurin capsules, but I'm over my supplement budget for a while. This one is kind of interesting, it also contains inosine.
    http://www.heranswer.com/monolaurin.asp
  3. cfs since 1998

    cfs since 1998 *****

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    I think there is more to the picture when you consume breast milk vs. taking a monolaurin supplement. The breast milk probably contains other ingredients that help the lauric acid get into your bloodstream.

    This is a transmission study though and I'm not sure it's relevant for someone who's already infected. I am not even sure they administred it orally, but I don't have full text access to find out.

    They did a trial of monolaurin and coconut oil on HIV/AIDS patients. Some groups received a high or low dose of monolaurin and some received a high or low dose of coconut oil. None of the results were statistically significant. Some of the patients went into late stage AIDS and died during the trial, I think.

    Even if it does work, inactivating infectious virions by dissolving the lipid membrane is probably not a mechanism of action that will work well for XMRV since it doesn't replicate a lot. We've seen how hard it is just to detect it by PCR. Even then, the short duration of time that it takes for a virion to come out of once cell and infect another cell is not very long, the concentration of lauric acid would have to be pretty high I would thing, and logically I'm not even sure if it is possible to get the concentration high.

    I hope I don't sound argumentative, I just want to make sure we all know what evidence there is for and against and what evidence there is not.
  4. Advocate

    Advocate Senior Member

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    Julius, right now I'm using Nutiva organic extra virgin. I don't exactly cook with it. I put it on the warmed food, and let it melt.

    Here's what Vincent Racaniello had to say about it in his blog on October 15, 2009:
    =========================

  5. julius

    julius Watchoo lookin' at?

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    Advocate,

    I didn't realise you were actually using it. I though you meant you cooked with regular coconut oil. Have you noticed any effects. One thing I did notice the short time I tried it was that I would feel really warm and my heart rate would increase slightly. I assume that's just to do with the energy released from the fats, and not an antiviral thing.

    Oh, BTW check out the link from my earlier post if you haven't yet. They suggest that the raw oil is not very effective. But again, who knows. They are trying to sell you something so they will say what they want.


    CFS Since,

    No worries. The main reason I post on this forum is to have good discussions like this. Actually, I tend to post a lot on threads both you guys are on because I like what you have to say (I assume you are guys, maybe gals?).

    About the breast milk, I realize there is a lot more to it than that. These are just thoughts I'm throwing around, because there really isn't any good research on it. The fact it is in breast milk, and breast milk has a lot of 'immune supporters' is a point for consideration. That's all I was saying there.

    Same thing for the transmission study. It points in the direction of effectiveness against viruses. I realise it's not proof of anything. And I was wondering about how they administered it too. I hoped maybe someone had access to the whole article. Have you ever heard about it being used intravenously?

    I don't think I agree with your point about the low replication rate. The problem with low replication is that methods which address the replication process, ie pretty much any antiviral currently available, are going to work too slowly if at all. In this case you would want something that would attack the virus directly. I don't know of any other way than those two methods.

    I guess what I'm saying is these are a few points that make it interesting. And considering the low cost and relative safety....it's worth a shot.
  6. julius

    julius Watchoo lookin' at?

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  7. perovyscus

    perovyscus

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    I noticed no one has mentioned the inclusion of methotrexate throughout the study. Just thought I'd indicate that.
  8. Navid

    Navid Senior Member

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    any more recent news about this and the wider trial?

    fairlight are you in the US? and have the oppty to try this?

    tx, lisa
  9. redo

    redo Senior Member

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    There is a PML risk, but it's not 3%. It's much less.
  10. redo

    redo Senior Member

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    I found a statement from the company that makes the medicine about PML risk in RA patients:
    "The overall reporting incidence of PML in patients with rheumatoid arthritis receiving Rituxan is rare (3 reports in approximately 100,000 rheumatoid arthritis patients thathave been exposed)."
    It's not said that we should take everything which comes from the producer for good fish. But even if it was a hundred times as big of a risk, I would think it would be worth it...

    http://www.fda.gov/downloads/Safety...tyAlertsforHumanMedicalProducts/UCM187792.pdf
  11. Overstressed

    Overstressed Senior Member

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    If that's what Rituximab is doing, wouldn't it be correct to say that these cells are over-stimulated with us ?

    OS.
  12. cfs since 1998

    cfs since 1998 *****

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    Not necessarily, but that is one possibility. The CFS/rituximab authors proposed two hypotheses to explain their findings (and keep in mind this paper was published in June 2009):

    1) auto-antibodies produced by B-cells, or
    2) an ongoing infection with a virus that infects B-cells. (no particular virus was named)
  13. perovyscus

    perovyscus

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    The drug is going into full scale clinical trials for CFS in Norway.
  14. cfs since 1998

    cfs since 1998 *****

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    Can you expand on that or give a source? They completed a double blind trial in 30 patients very recently, and it is not published yet. Is that what you mean by full scale, or do you mean they are doing another one with hundred(s) (it would be a 3rd study after the 3-patient study first and the 30-patient study second)? If that is true, then the 30-patient trial must have been good.
  15. Daffodil

    Daffodil Senior Member

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    if you kill the B cells with the virus in it, dont you have to give antiretrovirals right away so new cells wont be infected? the virus will still be there.
  16. Daffodil

    Daffodil Senior Member

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    isnt PML caused by the JC virus?
  17. cfs since 1998

    cfs since 1998 *****

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    Yes I would think so. The three patients from the first trial had remissions of between 2 and 9 months each, and a cycle of rituximab infusion, remission, and relapse was seen. The 30-patient double blind study hasn't been published yet. The authors do not know why the drug worked, killing B-cells infected with virus is one explanation, but a reduction in auto-antibodies is another. I hope it's the first explanation. If it's the second--only alleviating symptoms due to antibodies--then the drug really isn't addressing the root cause.
  18. Daffodil

    Daffodil Senior Member

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    i know that some with CFS have high ANA but not most. i never did myself. i would think the drug is killing the infected B cell population. i notice that the NIH trial is going to be giving maintenance rituximab infusions. this is so odd. i wish the ARV's would just work. i dont quite understand why they dont.

    rituximab is like $10 000 per treatment or something. we will not be able to get it in canada for a long time, i am sure.

    -S
  19. Daffodil

    Daffodil Senior Member

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    wasnt the NIH rituximab trial idea started before they acknowledged XMRV in CFS?

    i suspect that when the WPI talks about translating a cancer drug to use in CFS, they might be talking about a drug that recognizes the env protein on the surface(?) of the infected cell and kills that cell..?

    i hope the first WPI trial won't involve rituximab. they are probably tinkering with velcade.

    anyway...i am probably not even making sense. my brain is about to explode.

    i think the immune markers dr. mikovits speaks about - to measure treatment progress - might be cytokines...TGF beta, MIP-1 alpha, etc. thats my guess.

    so this is much the same as HTLV-1 neuro-immune disease, which does not really respond to AZT...you need a drug to kill the cells with the provirus already in it...by recognizing whats on the surface of those cells....?

    imma shut up lol

    -S
  20. alice1

    alice1 Senior Member

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    i have folicular lymphoma and rituximab would be the choice of drugs should my lymphoma become an issue.it's very indolent so there's no need for me to take it at present.i did talk with dr klimas about this and we agreed it 's a possibility down the road.i also spoke with my oncologist just this past monday and he said that this med wipes out the b cells which is infected with ebv and or xmrv and the lymphoma.it does not kill fast growing cells which is why there is no hair loss.if the other chemo is added then you would lose you hair but not rituximab on it's own.
    as for nausia there are great drugs to prevent that.at this point it seems there would have to be some regular periods of infusions or even better a pill form regarding ebv/xmrv because of the return of symptoms as started in the trial they did in norway.perhaps they're working on a dosage that wouldn't be as harsh for an ongoing treatment which seems would be needed at this point and another protocal to keep the system healthy while riding the b cells.that would be amazing.
    sue we absolutely have it here in canada.

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