• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. H

    Has anyone gotten their insurance to pay for Rituximab?

    If YES - how did you do it? Or if NO - and you think your info would be helpful, please share. THX!
  2. H

    Did anyone use CellTrend to make a treatmet decision on Rituxan & did insurance pay?

    Mine was only positive for 1 :-( My research shows it is very difficult to get insurance to pay for a $$$ drug used off label, like Rituxan would be for CFS. I am also on IVIG every 3 wks - did going to high dose help you at all?
  3. H

    Did anyone use CellTrend to make a treatmet decision on Rituxan & did insurance pay?

    I am a patient of Dr. Kaufman at Open Medicine in Mtn View. I saw him today & took the CellTrend test. Any info would be great - esp on getting Rituxan approved by insurance for an off label use! All the best for the holiday season & New Year! THX
  4. H

    My current list of meds & supplements for CF & Bartonella - would love to see others

    Levothyroxine 112 MCG - once daily Cytomel 25 MCG - twice daily Niagen - once daily Hyrdocortisone 20 MG before breakfast, 5 MG with lunch Lumbrokinase 40 MG - once daily NAC 600 MG - twice daily Clarithromycin 500 MG - twice daily Valcyte 900 MG - twice daily Rifampin 300 MG - twice daily CoQ10...
  5. H

    Physical Therapy - has it helped anyone?

    All, thanks for the comments! I was thinking about something along the lines as someone helping me stretch, def not cardio. I really enjoyed yin yoga, but I can not afford the private sessions anymore (as this illness drags on), so I was hoping to find something to help with my flexability &...
  6. H

    Does anyone have a provider code for Klaire?

    The nutritionist (Katie) at my doctor's office (Dr. Kaufman at Open Medical Institute) recommends Klaire Theralac, but do not have a relationship with Klaire. I am hoping to get the code so I can get this probiotic - thanks! Authorized Patients: Please register for full access. To register...
  7. H

    Physical Therapy - has it helped anyone?

    I wanted to see if physical therapy (in conjunction with other treatment) has helped anyone with CF/ME? If so, what did you do? I would love to find something that helped & my insurance would cover. THX! I am just shy of 39 and had CF/ME for 2.5 long years. I have been a patient at the Open...
  8. H

    Does anyone know of a CF/ME support group in the San Francisco Bay Area?

    HI there - I would love to join a CF/ME support group but don't know of any in my area (San Francisco Bay Area), can this group please help me? This disease is very isolating and I think it would be helpful to connect. I am just shy of 39 and had CF/ME for 2.5 long years. I have been a...