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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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    Really? That many people have had this experience?? I had NO idea and had NO idea that most even know what Chiari is? Have a lot of people here been told they had Chiari? I could have lived the REST of my life without knowing I had it and been just fine... Sad thing is my son has it too and did have the Chiari Decompression and is a little better but not much... So if if this is common I will surely do that... Great to hear from you...
    GcMAF Australia likes this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    It has been a pretty common finding amongst this patient group (no idea what per cent) and there was a "treatment fashion" a few years ago to recommend corrective surgery. A lot of people had bad results. I knew one of them personally--she just had intractable pain.

    So, your story could help others assess the risks of this surgery. I think there are lots of surgeons willing to do it but only a handful who can do it well--or to correctly evaluate who could really benefit.

    Sushi
  3. Jacque

    Jacque Senior Member

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    Ok...I better do it then...cuz it is the biggest mistake I have evvvver made....looking back... Will do it tonite.
  4. Jacque

    Jacque Senior Member

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    Just posted it. ... Hopefully it will help someone not end up like I have... Thanks for suggestion... How are you doing???
  5. Marylib

    Marylib Senior Member

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    Well, Jacque, you have me beat. Lately it is to sleep at five am and get up at 2 pm! We are like vampires...:)
  6. Jacque

    Jacque Senior Member

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    Oh and forgot to mention...because it just dawned on me....that in the last 2 weeks I have not had the irritable bladder I have been dealing with for about 6 mo now. There were nights where I literally was up 7-8 times...but the average was 4. I am now up once...and that is bc I don't stop drinking water at night. Doing the "deed" is no longer painful... ;) as well.

    What I found really interesting is that after my 1st infusion of Rituxan my bladder/urethra got really angry... After my 2nd I felt like I had a full blown bladder infection...I could hardly sleep ... up all night... Dr. Kogelnik called me in something for the infection.. I picked it up but hesitated taking it cuz Antibiotics ALWAYS cause a severe herx reaction from the Lyme. I held off for a few days and it is now GONE for now.

    So this bladder issue was obviously connected to the infections of B Cells in some way? Just thought I'd share, for some of you who have bladder issues.

    Fight on STRONG Warriors!!
  7. Jacque

    Jacque Senior Member

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    Soooo what is up with that??? Why are we vampiras?? And why the needed 9-10 hours of sleep... People say just retrain your body and go to bed a little earlier each night...They just don't GET IT... lucky for them...
    Wow..5 that is late.. I would say lets exchange phone #'s but you are New Zealand...so that prob wouldn't work out too well.. lol We need to figure this out...o_O
  8. GcMAF Australia

    GcMAF Australia Senior Member

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    There are a lot of problems with many types of surgery. I know people who have had trouble with other surgeries.
    i would be very careful before getting any surgery.
  9. Roy S

    Roy S former DC ME/CFS lobbyist

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    Jacque,
    I'm very interested in rituximab and appreciate your account of your experience. However, after 42 years of illness my brain has problems with cognitive overload and I think that applies to other patients too. You've already got half a dozen threads about it and it's exceptionally difficult to try to follow more than one over time. It would be much easier if you would ask the moderators to combine them into one chronological account as many others have done with their treatment experiences.
    As an alternative you could also start a new thread with your experience up to now and go from there.
    There were extensive articles about the Norwegian rituximab patients after the larger study was published that are no longer online. Bummer.
  10. lnester7

    lnester7 Seven

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    Or you can do a blog here.
    Little Bluestem likes this.
  11. Jacque

    Jacque Senior Member

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    I completely understand...and this site confuses me on top of all of it...for some reason.. I should probably just start my own blog as a few others have..just haven't gotten around to doing that... Let me work on that ok...
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    If you do decide to start a blog, more people will see it if you put links to it in a thread--like a main thread about your Ritux treatment. I suspect most members don't look at blogs very often since they don't appear in the "what's new," which is what guides many of us in our forum reading.

    Sushi
  13. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    My guess is that a blog would be seen a lot less. However, I'd suggest just one single blog article that shows a timeline -- days of Tx, plus starts and stops of zooming and crashing. And any blood tests showing NKs, etc.

    Otherwise, it might be just too much of a burden. Posting here should be an adventure not a job :)
  14. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Hi, Roy. Do you mean patient accounts or interviews rather than just summary statistics? Do you remember on which websites? I can try hunting them down.
  15. Hip

    Hip Senior Member

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    Very interesting that your irritable bladder has more-or-less disappeared following rituximab treatment. As you say, it does suggest that irritable bladder may have a similar B-cell / autoantibody etiology.

    Interstitial cystitis (IC), which is related to irritable bladder (IB), is a known co-morbid condition of ME/CFS, being statistically associated with ME/CFS. I have often speculated that these bladder problems may have a similar pathophysiology to ME/CFS. This is why I think if you already have IC or IB, it may predispose you to getting ME/CFS. Irritable bowel syndrome (IBS) is another condition that is co-morbid with ME/CFS, and so having IBS probably also predisposes you to ME/CFS.

    I myself had both irritable bladder and Irritable bowel syndrome before I developed ME/CFS from a viral infection, and my guess is that if I did not have IB and IBS beforehand, I would not have come down with ME/CFS.

    All these conditions of IC, IB, IBS and ME/CFS may well have a similar pathophysiology, probably involving the production of damaging autoantibodies, and so an individual suffering from several of these conditions together may get more ill more because these similar conditions "gang up" together to worsen each other.

    (In this thread, I speculated that autoantibodies to muscarinic acetylcholine receptors might underpin ME/CFS, IC and IBS. If there is any mileage in this speculation, certainly rituximab would reduce these damaging autoantibodies, and then alleviate these conditions).
  16. Jacque

    Jacque Senior Member

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    Sherlock you are killin me ... the zooming and the crashing!!!.. I don't know how hard it is to start a blog but will look into it... I will not be posting here but abt every 2 weeks unless I have something really exciting...
    Love, Zoomey:p
  17. Jacque

    Jacque Senior Member

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    Interesting thoughts...on the preexisting things making one more prone to ME/CFS... I didn't have ANY of it... I was a healthy kid...rambunktious? tomboy and got a tick in my ear, was in there so long I couldn't hear out of that ear, and about that time got a horrible flu...and have been miserable since. I am sure if I would have gone to a Urologist I would have been told I had IC...I just didn't want ONE more "label"... Doc K thinks I have IC... Guess that is why many call this CLUSTER F*** DISEASE... Everything is involved it seems...:thumbdown:
  18. Roy S

    Roy S former DC ME/CFS lobbyist

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    This is from one of the articles in the following dead link about one of the first successful Norwegian rituximab patients. She's talking about watching a movie that changed her plans about just going back to school. I think she got sick at age 16 like I did.
     
    At its worst, Elene (26) could easily sleep 18 hours a day. Now she is bursting with energy. "There’s a scene where the main character is skiing in his underpants in glittering sunlight and singing at the top of his voice. I then realised I wasn’t ready for any studies quite yet," she laughs.
     
    http://bergento.no/2011/10/medical-breakthrough-in-cfs-treatment/
     

    There are also links to contemporaneous articles here:
     
    http://www.research1st.com/2011/10/23/media-blitz/
  19. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Here's the first one about Elene: http://bergento.no/?page_id=3242&preview=true
    She says she had no response for 6 months then "when both she and the researchers were beginning to loose courage, something suddenly happened. And it happened fast." Very different from Jacque's quick onset of effects.

    Then relapse after 4 months, then durable remission for years with maintenance infusions.
  20. nanonug

    nanonug Senior Member

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    Interstitial cystitis is a mast cell disorder. If it is true that ME/CFS is also a mast cell disorder as I am convinced that it is (see my post here), then the relationship between IC and ME/CFS is easy to understand.
    Jacque likes this.

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