Open medicine institute & rituximab questions...

[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]

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.