August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Open medicine institute & rituximab questions...

Discussion in 'ME/CFS Doctors' started by Mesurfer, Apr 29, 2016.

  1. Mesurfer


    Background: I am 39 yrs old, sick with M.E. for 16 yrs. I live with and am semi-dependent on my 75 yr old parents as caregivers. Everyday I feel like I have combination of a hangover / flu / jet lag, and these symptoms are exponentially intensified when I induce PEM from even the most mild activities. Sometimes my concentration is down to only a few minutes. I feel like my life is slowly becoming unmanigable and as my parents are getting older, I'm feeling the pressure that i need to do something soon because every year I am becoming more disabled. I fear I may be headed toward becoming bedbound or in some sort of nursing home. I'm starting to feal the urgency of needing to act before it's too late to recover.

    A couple of questions:

    1) I called the OMI and spoke to the receptionist. She said Andreas kogelnick was not taking new patients but two other Drs would be able to see me (Dr belecheta & dr Kaufman). Is Andreas kogelnick the only dr who prescribes Rituxan or might the other Drs prescribe it as Well? Do the OMI Drs prescribe rituximab often or just in a few very rare cases?

    2) Are any other Drs prescribing rituximab in the U.S. (Preferably on the east coast)

    3) I understand an ANA blood test might be a possible indicator of a potential responder. Are there any other blood tests that might say if I'm a candidate for rituximab?

    Thanks in advance for any replys.
    perrier, ErdemX, rosie26 and 4 others like this.
  2. perrier

    perrier Senior Member

    Dear Mesurfer
    I completely understand your situation. My daughter is severely ill too. And if I die, there is no one to take over. She is even contemplating assisted suicide, as a result.

    I don't understand why the researchers aren't moving more swiftly.

    We too are thinking of omi.

    But on another thread there were some troubling indications.

    I asked for more info.

    I think RTX should probably be done with doctors connected to a hospital.
    Billt and Mesurfer like this.

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