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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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What do you want to ask Fluge and Mella?

Discussion in 'Rituximab: News and Research' started by Maria Gjerpe, Mar 10, 2013.

  1. Ben Cook

    Ben Cook

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    Sydney, Australia
    Hello there fellow Rituxan's, I am Ben. I don't typically participate in forums such as this, though often read and follow and thought maybe it was time I answered a question I had some understanding of as the Dr in question is presently treating me. I have recently completed an initial 2 week thumping of Rituxan/Rituximab under Dr Kogelnik's care at the OMI. He has discussed with me his rationale for using Valcyte in combination with Rituxan which I have only a very basic understanding of in truth. In the simplest of descriptive/layman's terms my interpretation of what he was saying was that Valcyte used in very high doses to reduce the chances of a very aggressive Immune response is utilised in an effort to prevent re-infection of newly formed B cells once immuno-compromised B-Cells are eliminated by Rituxan, and as such is provided for some 15 months in combination with Rituxan treatment in an effort to give these B Cell time to function in a none Immuno-compromised manner. Theory is along the lines of -> once the Immune system is re-booted for lack of a more appropriate empirical term/metaphor by Rituxan, the Valcyte is there to give the B-Cells an opportunity to function without being Immuno-compromised for a sustained period so that NK Cells are able learn to recognise viral threats and are effectively able to perform their role accordingly. My understanding, which is clearly very limited, was that he is very much focused on normal NK cell re-activation. In my case, not only were my NK cell numbers low, but most alarmingly in his view was the almost dormant like state of my NK cells when prompted to respond to viruses that would in healthy subjects elucidate a very aggressive NK cell response. There is a complex hypothesis which he postulates may explain why this is occurring but cannot be sure. So by tracking patient Immune profiles with defective NK cell responses and what he deems to be key viral indicators, he is attempting to assess best practice Immune responses. In short he is hoping that Valcyte will allow Rituxan to do its job in those that respond favourably and sustain that benefit for an indefinite period of time. Apparently there aren't many of the Norwegian Rituxan patients that have had sustained benefit and it is this reason he hopes Valcyte may extend this by a matter of months, years, potentially indefinitely. I would add that what he covers in our informal discussions and that which my broken body and mind am are able to take in is likely open to error and misinterpretation. Anyway, I think these are the key things he is looking for in developing a pathology based Immune profiling criterium, (software) which he is working on privately to further test and assess profile outcomes with either Rituxan, Valcyte or a combination of both. Its all guess work and he doesn't for a moment pretend otherwise. Good luck. Ben from Australia
     
    NK17, froufox, RUkiddingME and 5 others like this.
  2. Captain-Ger

    Captain-Ger

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