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GOOD things happening!! Am I a responder???

Discussion in 'Rituximab: News and Research' started by Jacque, Aug 27, 2012.

  1. Jacque

    Jacque Senior Member

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    Terrible brain fog... not much change there as of yet...and all of my symptoms came crashing back yesterday :(
  2. Jacque

    Jacque Senior Member

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    No ... he does not test for those that I am aware of... Dr K is an Immunologist ? Or something in that arena... He is brilliant when it comes to the Immune system...so I have complete TRUST in him in that regard. I will let you know if he tests for those things on my upcoming visit in Oct.
  3. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Hi, Jacque. My total guess is that you have enough of the RTX in you for months in the future so that it will keep killing new B cells as they are manufactured. But if you do have greatly increased numbers of NK cells, then yes they might be making you feel bad. (I can't wait to hear the results on NK numbers when you get them :)

    There's also the usual possibility that you crashed just from living it up for a few days straight. So, if you had to choose over again, would you have done those good 5 days the same? Or backed off and taken it easier? It's just a question from curiosity. I think if I were in your shoes, I would have done it just exactly how you did :) It was worth the price.

    That would tend to say that your B Cells and the antibodies they were making were keeping your latent HSV in check. Please keep us posted on that also. Good luck on your continued pioneering :)


    [Edit: OOPS, I have to correct myself. Your anti-HSV antibodies should still be circulating, and your plasma cells that make those antibodies should also still be around. When B cells turn into the antibody-manufacturing plasma cells, they lose the part (CD20) on their surface that allows the RTX to kill them - so they shouldn't get killed. So the flareup of your HSV might be from some lack of signalling that the now deceased B cells used to be sending out.]
  4. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    IIRC, Kogelnik is an Infectious Disease doc. Kati "bikechick" had her NK cell numbers posted on her blog; but come to think of it, she doesn't say if Kogelnik ordered that blood test of if some other doc did.
  5. Jacque

    Jacque Senior Member

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    Good Grief...how do you KNOW all of this... are you in the medical profession???
  6. IreneF

    IreneF Senior Member

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    Dr. Kogelnik orders the NK function test.
  7. Jacque

    Jacque Senior Member

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    He did not order any further blood work for me... He looked at my older blood work and he said it told him everything he needed to know... Mainly looking for LOW NK and HIGH Viral titres... Yes he is an Infectious Disease doc but it also says something else about immunology in his shingle... Something about Genome as well. I will pay more attention when I go in Oct.
  8. Jacque

    Jacque Senior Member

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    So Irene did your NK cells shoot up?? Just curious....
  9. alex3619

    alex3619 Senior Member

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    There is another possibility, related to elevated NK cells. Its known that there are alterations of T cell numbers in the CNS due to Rituximab. I do not think they die, I think they migrate due to lack of signals from the B cells that are missing. As a result gamma delta T cells can migrate out of the CNS. These cells have an immune suppressing as well as a pathogen targeting role. Its possible that if they migrate then the remaining immune cells, which includes NK cells, might become more active. If so, then as B cell numbers restore, or the gamma delta T cells migrate back, this problem will reverse itself. Bye, Alex
  10. Jacque

    Jacque Senior Member

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    Between you Alex and Sherlock...who needs a doctor... you two know more than most physicians about any of this... How do you retain it all... Your brains are obviously still VERY much intact... I am jealous....
    Thanks for info!!!
    Jac
  11. IreneF

    IreneF Senior Member

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    I don't know, we haven't talked about that. I'm not going back until December for my next infusion. I feel that the numbers are interesting but much less important than my overall condition. I don't think anyone knows whether higher NK functioning predicts improvement. We're the guinea pigs.
  12. Jacque

    Jacque Senior Member

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    Well it wasn't "my" idea of living it up...Im still not able to go honkey tonkin.... I just got out of my prison of a house each day... how pathetic!!! Where I do go wrong...is when I feel the "slightest" bit good I tend to do as much as I can, as fast as I can...before I crash again...Are you that way? I don't think that is something I could ever change...I have been living that way for 35 stinkin years... Would I do it all over... I don't know because it was sure depressingseeing how live is still goin on OUT THERE...and see what I am missing out on... :cry: Don't think the return of symptoms had anything to do with my outings... but who the hell knows...:(
  13. Jacque

    Jacque Senior Member

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    Oh I assumed that he had taken blood work around your 3rd infusion? Cant remember how many you have had...please forgive me... Are you still feelin suckey? Man it is rough to go out there and feel the pulse of life only to have to go back home. But at least I have a roof over my head and a couch to lay on... I know that Dr. K always talks about putting markers in the sand and seeing if they move...and I know he is referring to NK's and Virals... and I am sure many other things. Yes we are the guinea pigs... oink oink... oh wait they don't say that do they... hmmm I don't know what a Guinea Pig says... except... THIS SUCKS.....
  14. peggy-sue

    peggy-sue

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    Guinea pigs chirrup.:)
    I'm so sorry you're not "bouncing" any more and are feeling so bad now..... I do really, really hope that further treatment will help and for lots longer, in the future.:hug:
  15. alex3619

    alex3619 Senior Member

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    Hi Jac, no, my brain is fubar, but I have been involved in the science for 19 years, and did do a biochem degree (with great difficulty, I almost dropped out in the final year due to exhaustion). Exerience counts. Bye, Alex
  16. L'engle

    L'engle moderate ME

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    Sorry to hear. I hope the improvement returns!
  17. Jacque

    Jacque Senior Member

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    Hi Sherlock,
    No I have not seen any change in sleep patterns etc... (still can't go to sleep till 4am and get around noon) HATE THAT...No I did report all of this to Dr. K...but am keeping a good journal. The only thing that really improved is I went from saying NO...to doing anything to saying YES... When I said I drank alcohol it was ONE drink...grrrr ... I'd give anything to be able to party a little ever now and then...and even go dancin... What a novel idea???

    I am certain I have Lyme as anytime I take any type of anti bacterial whether it be abx or natural i go to a VERY VERY BAD place... my brain burns in addition to every square inch of my body...and yes my pain is in entire spine down to coxxyx...but take majority of pain med due to neck on FIRE... When I take a Lyme killer or do a RIFE treatment my entire skeleton is on FIRE... The herxheimer is intolerable...and I have read that in some people that when they treat their Lyme it activated the XMRV virus...which I prob have. I know something is activated...cuz what I experience is not just an increase in symptoms... It is suicidal kinda of stuff.... :(

    Why can I not get to sleep until 4am...no matter what time I go to bed? ugh...

    I have also gained 6 lbs since starting the Rituxan... Just wanna eat everything... You know SEE food diet... some really STRONG cravings...

    I have noticed since the Rituxan I am having INSANE hot flashes or sweats...it is AWFUL...havin one right now....ugh haven't checked my temp...but need to do that... haven't taken temp...should do that... I was thinkin these were hot flashes... but I'm thinkin not... prob immune related?

    Ok...that was a BAD one... now I feel all sweaty and gross... gonna go shower... Sherlock you are amazing...appreciate you... I wish you were seeing Kogelnick so we could share experiences...
  18. Jacque

    Jacque Senior Member

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    Irene...have you noticed INSANE hot flashes/sweats? whew...don't know if this is menopause or my immune system...so much fun being a WOMAN...:cautious:
  19. Jacque

    Jacque Senior Member

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    You are killin me... I call this FUBAR disease to all of my friends.... Or Cluster F disease!!! I am sorry your brain is as bad as mine... Brilliant people reduced to desperate individuals... just wanting to LIVE... Your degree explains your understanding of all of this... I just hear 60% of peeps with ME are gettin better and say hook me up... pathetic...
    Also Irene...the whales are here in Calif...and headin YOUR way.... I live by Pismo Beach... I heard they are gone now and headed North...so go get on one of those whale watchin boats...bc it is MAGICAL!!!!!
    L'engle likes this.
  20. IreneF

    IreneF Senior Member

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    Except for my positive experience in July I haven't noticed any changes. I try not to pay attention to every little thing, otherwise I'm afraid the wait will feel infinite.

    I had the whole hot flash experience a few years ago, over with that. I do often feel a tad feverish but that is nothing new.

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