Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Rituximab Discussion

Discussion in 'Rituximab: News and Research' started by Bob, Jun 17, 2012.

  1. IreneF

    IreneF Senior Member

    San Francisco
    The response to Rituxan is supposed to take six to nine months. I don't think any of us are there yet.

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  2. dsdmom

    dsdmom Senior Member

    So today I spoke w/ my pcp from out of state and she was upset that the dr last night had not done any testing for hsv - either via swab or blood work. So today I went back and had the sore swabbed and blood work done. Will see what comes back in the blood work tomorrow.

    I'm not sure this is hsv...not sure what it is. Do any of you have burning skin? The skin on the tops of my hands and feet and face/neck is burning. No rash - I check like every 10 seconds. I'm also having mouth discomfort. Don't want to finish my valtrex because it is making me feel HORRIBLE, like living in a fog, extremely depressed and more tachy etc...
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  3. SOC

    SOC Senior Member

    Are you sure it's the Valtrex making you feel bad and not these reactivating viruses? The Valtrex should help with the viruses ... and keep them from spreading, so I'd think carefully about stopping it without consulting the doc. Maybe reducing the dose would help some....?
  4. Jacque

    Jacque Senior Member

    USA - California
    HSV1 and HSV2 are two of the primary tests that Dr. Kogelnik tests for... so I too was shocked you had not been tested.
    Could you be having an INSANE YEAST DIE OFF??? If it affecting your mouth and skin??? Just a thought. I am so sorry you are going through this... and also shocked that you are feeling so bad from the Valtrex...that is usually an easy drug to tolerate... I know I take it all the time and have never experienced those symptoms.... hmmmmm So a reactivation of the viruses... as SOC says or maybe that coupled with Yeast die off... or you are just having an allergic reaction to the drug or something.... Have you changed any personal care products recently... lotion, bath...toothpaste?? GOOD LUCK...
  5. Whit

    Whit Senior Member

    Bay Area
    Ahh ok I guess I'm bad at adding up weeks. :)
  6. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

    Czechosherlockia, USA
    As a comparison, use in blood cancers has typically been every week for 4 weeks, with maybe 8 weeks given in the first round. You have to wait a week in order for the patient to build back their supply of complement. Once the RTX antibodies bind to a B cell, they can attract complement molecules which are part of the innate immune system. These complement molecules of various kinds can then form a Membrane Attack Complex which makes a hole in the target cell's membrane. It's not too different from slowly letting the air out of a balloon, and the target cell dies.That's one of the three ways of cell killing thought to occur.

    The contents of the B cells are being spilled into the circulatory system, including inflammatory chemicals which stimulate even more inflammatory chemicals. That's why people are typically given antihistamines, tylenol and corticosteriods beforehand.

    The first infusion of RTX is used up the fastest, since all the original target cells are still there. Then the second infusion is given not long after, to build the levels of RTX back up - but since the number of target cells is already greatly reduced, the RTX isn't used up so fast the second time around and replenishing isn't needed so soon after the second infusion.

    The timing of the third dose for CFS then probably involves more than a little guesswork, aimed at when any docs running a trial think the RTX has been depleted. Antibodies can last for months, they're not alive and they're just floating around. I'd guess that they eventually get damaged by oxidation or nitration, and/or damaged and possibly crosslinked by glycation from blood sugars.

    IIRC, there are ~25,000 CD20 molecules on a typical B cell, which are the molecules that the RTX binds to. It's said that a B cell can get fairly well coated or opsonized with the antibodies - it's not just one antibody resulting in the killing of a B cell.
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  7. Jacque

    Jacque Senior Member

    USA - California are making my bwain hert!!! I kinda understand what this is saying... I never heard of B cells until all of this...and thought I had heard of most things regarding the immune system. We can put a man on the moon and a stupid ass craft on Mars...but we can't figure this out... and now I know WHY!!!! Thank YOU....

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