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    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Billt

    DR. Heyman

    I couldn't find anything bad on him and has video's are very interesting. Sounds very knowledgeable in several areas. But just looked a little to good to be true . I was hoping some on PR would have had some experience with him. Always looking for another approach to get son better...
  2. Billt

    DR. Heyman

    Anyone heard of or have any experience with Dr. Andrew Heyman. Has lots of you tube info on mold, cfs/me, etc Thanks
  3. Billt

    Any doctors in Louisiana that will prescribe high dose antivirals?

    Sorry no one has responded but no drs that have found here. I'm in the New Orleans area
  4. Billt

    Incredible improvements with Helminthic Therapy

    I am following this thread for my son . Have not done any of the treatments but I am very interested in this
  5. Billt

    Log: MCAS with Primary Immunodeficiency

    So much knowledge you guys have !!!! Thanks for sharing .
  6. Billt

    Anyone Else get ill after exposure to sunlight - not just the heat

    My son went from being able to work in the sun all day to can't go in the sun for more than a minute or two at a time. Severe burning and over heating of his body if sun shines on him too long. Doesn't get sick just hyper sensitive to temp change
  7. Billt

    Sun sensitivity

    L'engle. do you also get flush feeling ? My son get"s very hot internally, from just small about of sunlight or heat. he doesn't regulate temp well at all
  8. Billt

    Sun sensitivity

    My son has a different type of sun reaction. Can only be in the sun for a minute or 2. His skin is super sensitive. and gets like a bad sun burn if he is out in the sun for more than a few minutes. Even sun through a window will do this. His whole body seems hyper-sensitive.
  9. Billt

    Anyone been to UAB or know someone that has? (Jared Younger)

    I tried several times with them . always told they would get back with me. i don't think there was anything out of the ordinary, maybe that's why I never got anything. But do think they are trying and doing valuable work. We need all the research we can get. My son continues to decline with...
  10. Billt

    Anyone been to UAB or know someone that has? (Jared Younger)

    I took my son there for a scan. They were super nice and believe they are really trying to find answers. However after repeated attempts to get any results they never contacted me back like they said they would. That was awhile back so maybe things are different now
  11. Billt

    From Bedbound to Fit and Able in 14 Days: Effects of the Amazonian Medicine Kambo on a CFS Patient

    Anybody else try this Kambo ?
  12. Billt

    New EBV drugs in the pipeline!

    Great news !! fingers crossed it wont take years !!!! thanks for info
  13. Billt

    How long does a skin punch biopsy for small fiber neuropathy take to return?

    not sure how long but my son is waiting to have this done. His hands and feet burn and get very very red as well
  14. Billt

    Skin under eyes sensitive, slightly puffy and blue, & glasses feel heavy/uncomforable

    Thanks for all the ideas. We have tried the pads for his nose. Also tried very light weight behind the ears on glasses to lift the glasses off the nose.. Most of the time he just try's to leave his glasses off
  15. Billt

    Acupuncture

    My son has been doing this for awhile maybe 6-8 months. He thinks it may give him slight temp relief. I don't see any diffenence
  16. Billt

    Skin under eyes sensitive, slightly puffy and blue, & glasses feel heavy/uncomforable

    My son has the exact same issue. We have tired several different glasses but they just hurt him. even if he leaves them on a short time he gets deep indention's in his skin. Very painful. And yes, it is like his kin has thinned. Sun burns him if he is just in it a short time. He has also...
  17. Billt

    KDM: scig for inflammation

    keep us posted !!!
  18. Billt

    Anyone else have a massive improvement from Tyrosine?

    Wheww some smart people on here.. Wealth of info. I will try to understand. For my simple mind, seems you can't have to much of one thing. must have balance. Great thread !!!
  19. Billt

    Anyone else have a massive improvement from Tyrosine?

    Worth a try and would know pretty quick
  20. Billt

    Anyone else have a massive improvement from Tyrosine?

    Sorry brain fog and fatigue .. Have not found anything to improve this
  21. Billt

    Anyone else have a massive improvement from Tyrosine?

    These are the 2 Huge factors in my sons health. Would be great if this could help
  22. Billt

    Anyone else have a massive improvement from Tyrosine?

    Never tried it . But sounds like it is working for you
  23. Billt

    Everything No One Ever Told Me When I Got On Disability (SSI & SSDI)

    No worries, It is a process .. We'll get there and I'll let you know how it goes. Thank you so much for taking your time
  24. Billt

    Everything No One Ever Told Me When I Got On Disability (SSI & SSDI)

    I did call them. All they can tell me over the phone is that he is entitled to Medicare and when it started. They are able to tell me they are taking out back months premiums from when he became eligible. Said to contact state for any other programs. Also if i want to go in and talk with them...
  25. Billt

    Everything No One Ever Told Me When I Got On Disability (SSI & SSDI)

    Here in Louisiana there is something called expanded Medicaid. We actually finally just got him on this. This is a program that offers Medicaid if you are under the poverty level ( which he is ). I am trying to get more local info, but it's harder than pulling teeth to get an answer...
  26. Billt

    Everything No One Ever Told Me When I Got On Disability (SSI & SSDI)

    KitCat, I know this is old thread but this is where I am now with my son. Just approved for ssdi and looks like they will be taking money out each month for part B and he will have to pay for part D. Between these 2 it looks like it will take a HUGE part of his check. I am looking...
  27. Billt

    Applying for Social Security Disability (SSI/SSDI)

    KitCat, GG , halcyon, Clerner Finally an update !! We have gotten the letter back from the hearing and with GOOD NEWS !!! He was approved !! Can't believe it as I really thought this may not happen. So hard to prove. The atty told us before the hearing that my son would need to do...
  28. Billt

    In Memory of John Falk

    So hard to understand with so many ill why we can't get more help. Cruel and brutal !!
  29. Billt

    In Memory of John Falk

    So sad what it does to the ones we love
  30. Billt

    Prayers Needed for a Severely Ill Patient (and their family)

    They are in my prayers ...