Jump to content
ACN Latitudes Forums

Eliself

Members
  • Posts

    32
  • Joined

  • Last visited

  • Days Won

    1

Reputation Activity

  1. Like
    Eliself reacted to wisdom_seeker in CellTrend, Vibrant Wellness or other AE auto-antibody tests?   
    Has anyone done CellTrend testing for auto-antibodies?  This test was developed for POTS and ME/CFS,  but surprisingly my son tested high positive for over half the 11 auto-antibodies in the panel. 
    I'm treating this as very meaningful for likely AE.  But would our insurance agree and pay for IVIG or PEX, based on a research test from Germany?

    Still it's enough for us to want to get serious about getting evidence to justify IVIG or PEX  (both to us, DS20 himself, and insurance companies). 
    However, years ago we'd spent $$$ for the Cunningham panel and insurance completely discounted that.  So I'd like to know what other autoantibodies DS has, but I'd also like it to be meaningful to insurance companies.   
    What have you found useful?
    Candidates I know are:
    Vibrant Wellness' Neural Zoomer Plus Moleculera labs' Cunningham Panel   (much better for PANDAS than PANS) Cyrex Labs CellTrend' GmBH's CellTrend Mayo Clinic's ENS2 Labcorps Quest The only ones that are FDA-certified (?) and reimbursable in the US (as opposed to "research tests") are the last three -- the Mayo clinic's  classical autoantibody panel (largely for cancer) and the very limited ones from Labcorps and Quest 
    I care about getting info that's useful to us and to insurance companies.  So if one of the first 4 was useful for anyone appealing for IVIG rejection, I'd love to hear that.
  2. Like
    Eliself reacted to jan251 in Update, getting worse   
    I'm not sure, but maybe try this group https://www.facebook.com/groups/129017327268769/
  3. Like
    Eliself reacted to MissionMama in Take a little break....and give some (fun) feedback   
    I knew it!! It is just miraculous that people can feel her words!
     
    For anyone that has liked it, and has become hooked (yep, you ibcdwc!) make sure to sign up on the blog post itself for notifications. When an alert for a new post hits my inbox it feels like Christmas! I will also come "here" and post an alert...
     
    Thank you so much to each of you for taking the time to read it - and to give feedback. I know it breathes life into her plight to share her experience with others. It is also good therapy and inspiration - for all of us!
     
    Kristi
  4. Like
    Eliself got a reaction from MissionMama in Take a little break....and give some (fun) feedback   
    I love it! Tell her to write more
  5. Like
    Eliself got a reaction from MissionMama in Take a little break....and give some (fun) feedback   
    Wow. I am blown away. Only a few paragraphs in and this already reads. Exactly. How. My. Story. Went. This is what I have lived these past five years. Thank you for sharing!!!
×
×
  • Create New...