Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Retroviral Infection of B Cells in ME/CFS Patients (DeFreitas) Use of Rituximab???

Discussion in 'Rituximab: News and Research' started by Knockknock, Mar 5, 2017.

  1. Knockknock

    Knockknock

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    This thread was split from the following thread.

    Did anybody here ever read Dr Elaine Defreitas Study ??
    What she propoused and warned the NIH??
    She said that the retrovirus that she found in Me/cfs patients can also infect B cells, and further more troubling also the mitocondrias.. we see both issues with ME/CFS, this may explain the action if Rituximab,
    But also the use of antiretrovirals.
     
    Last edited by a moderator: Mar 8, 2017
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  2. ClaireKnowles

    ClaireKnowles

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    I'm curious about the time lag. I was under the impression that many people who ultimately responded to Rituxan in the Fluge and Mella studies worsened first, then improved months later. They had mentioned that it could take 6 months for the offending autoantibodies to be cleared. One would think that if Rituxan affected ME by allowing virus clearance, that responders wouldn't necessarily get worse, only to improve 6 months later? Also, I asked my MD about Raltegravir as I know it has helped some MS patients; a few of his patients had tried it without success, but that's of course a small sample size.
     
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  3. Knockknock

    Knockknock

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    Its really hard to understand,
    But this is just my theory, im a believer for many many reasons that Me/cfs come from an infectious pathogen, from a retrovirus.
    Late studies show that valacyclovir reduce viral load in hiv, this may explain why it work in many cfs patients, as well as valcyte tharlt its a more potent antiviral.
    Late studies also show raltegravir as a potent antiviral blocking replication in most of herpes viruses.
    Also if Rituxam knock down D cells or any virus or retrovirus in it,
    Maybe cause the die of effect herx.
    Beside it may afect the other part of your immune system to.
     
    Last edited: Mar 6, 2017
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  4. JES

    JES Senior Member

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    You are right, it doesn't make sense that the response would come after that long a delay if it was due to viruses. The few patients I read that had an active EBV infection were cured within days after rituximab infusion, presumably due to clearance of EBV infected B-cells, but same doesn't seem to happen with ME/CFS patients.
     
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  5. ClaireKnowles

    ClaireKnowles

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    Maybe... I took Valtrex and Famvir for a year and it did nothing for my ME, although it possibly helped my high HS1 and VZV titers. It's not effective against HH6, EBV, or CMV. Valcyte is, though (although I know a number of patients who didn't respond to that either, even though it brought down their HH6 titers). I had a lot better luck with IV abx. So, hard to know if there's a virus involved- could be many other stealth microbes as well, perhaps different bugs in different people. Most of the ME docs seem to agree on a NKC deficiency "profile" much like a AIDS (killer T deficiency) "profile", as different microbes seem to be involved in the two illnesses. For example, I test "high" positive for bartonella antibodies, but test "normal" positive for toxoplasmosis antibodies, and I used to do feral cat rescue and have been exposed to both of these germs. But, poor NKC function seems to be associated with bartonella and not toxoplasmosis. Time will tell I suppose! :)
     
    Last edited: Mar 6, 2017
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  6. Knockknock

    Knockknock

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    Correcting my prev post i mean B cells.
    Valtrex some how seem to work in Hsv-1-2 ,vzv, ebv,
    Depends on the level of the infection.
    As i mentioned before early studies said valtrex didnt work for hiv, late studies demostrated that reduce virala load.
    I agree % with you ME/CFS its none specific to one particular virus, its multisystemic disease much like AIDS( hiv) deficient immune system low nk cell.
    Me/cfs has almost all symtoms and immune disfuntions of an Aids person,,neurological,cardiovascular, low to no immunity, the diference is in most of us we dont die so quick like and AIDS person becouse we dont have Hiv,
    I spoke to a world class virology, he believe that AIDS is the result of two retroviruses the one we have + hiv the result of the two leave you with zero immunity..
    This allow all herpes viruses inside you to reactivate full blown+ other co imfections that mutate your genes your dna,your antiviral Rnase L, thats why hiv kill you faster, becouse hiv replicate uncheck like it happen to us with herpes viruses and other pathogens.
    In people with only hiv it could be control by retrovirlas , antivirals.
    In our case we have the one that its more dependant on hormones ( this explain why in neuro immune illness are woman 70-80%) many times couples passed to each other but after years, only when virla load is high and have reactivated viruses, in alot of cases there is no co infeactions and only woman develope the illness, co infections accelerate since is a retrovirus of slow replication( but when it replicate depending on co infections can enter T cells, B cells,"""mitchocondria"""
    In Hiv happens very similar with the diference that hiv dont cause me/cfs even though some hiv people have some type of cfs do to other factors.
    Even our gut bacteria is bad, as the result of low immunity, bacteria is directly involved in our metabolism, energy production and most of our body funtions.
    Having bad bactria result in many disfuntions including immune disfuntion,, its i casacde one thing lead to another.
     
    Last edited: Mar 29, 2017

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