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

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  1. kms1990

    Going Into Remission Again!

    Wow great news, you have been on this autoimmune journey awhile, I was just looking back at our original messages together. Glad things are working out now
  2. kms1990

    Research Re Exosomes and ME/CSF

    Very intersting. I cannot wait to find out more about these trials. It seems like they are onto something serious here
  3. kms1990

    Research Re Exosomes and ME/CSF

    If they do determine exosomes are causing aspects of CFS, what are the proposed treatments? Or are we at too early a stage to even go there?
  4. kms1990

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    If I were to try to have prior MRI's reviewed to see if there was any indication of CCI, could anyone help provide me information no how to get that done? One of the best doctors I have ever seen recently emailed me and though it would not be a bad idea to rule it out.
  5. kms1990

    In Memory of Shawn Kregan (SK2018)

    Sorry I dont
  6. kms1990

    In Memory of Shawn Kregan (SK2018)

    There are many questions regarding his death, and I dont think there is solid information to share at this point only speculation. I was told by someone who spoke with him often that the combinations of medications he was given in various countries wiped out both his b and t cells entirely (this...
  7. kms1990

    In Memory of Shawn Kregan (SK2018)

    @Gingergrrl Thats a nice idea. Thank you Go Fund Me To Bring Shawn's Body Home P.S. - also I know some are asked or are wondering the cause. I do not know specifics, but do know Shawn had multiple AE relapses and also tried many medications which potentially had serious side affects. In my...
  8. kms1990

    In Memory of Shawn Kregan (SK2018)

    Im very sad to report that SK2018 passed away this week from complications of his disease. May he rest in peace. He was a fighter and traveled the globe to try treatments he and his doctors thought would help him. He did not go gentle into the night. He fought till the end
  9. kms1990

    Brain Damage?

    Brain Damage is hard to prove even with the best of testing. I think some people with CFS probably have brain damage but its a minority. However, what is very likely is neuroinflamation causing poor brain performance or imbalance.
  10. kms1990

    Is there consens among specialists regarding IVIG in CFS-patients?

    Yep that's right. The lower dose IVIG did not help patients in the study and Dr Klimas said the articles written about the studies compared to one another made it seem apples to apples. (back in the 80s much less was known by everyone about IVIG) I may go onto RTX, however the two "studies"...
  11. kms1990

    Is there consens among specialists regarding IVIG in CFS-patients?

    I don't think so. I see many different doctors. Some are pro IVIG some are not. In an interview I watched with Dr Klimas she highlighted one particular study in the 80's did a great deal of harm because it was compared against an high dose IVIG study in CFS which showed it helped. The...
  12. kms1990

    Metabolic Trap: Transient tryptophan depletion

    Careful! I believe it was noted that manipulating this system too much before we even know how it works could cause irreversible autoimmune reactions with permanent long term damage.
  13. kms1990

    Seeking information on long-term outcomes with Dr. Kaufman

    @ivorin - I'm very sorry to hear of your suffering. I cant really advise what will help you, but all I can say is the single most important thing in my case I believe is persistence. You just have to keep going to your doctor, keep trying new things again again and again. Don't give up. Just...
  14. kms1990

    Farewell – A Last Post from Anne Örtegren who has just lost her struggle with ME

    This makes me so angry. Not that she chose to end her suffering, but that no doctor helped her enough so she could at least have a few hours a day of joy. It sure does sound like she has symptoms of an autoimmune disease to me. My doctors after 10 years started treating me like I have one with...
  15. kms1990

    Dysautonomia often Autoimmune (cross post)

    For those questioning if their dysautonomia is autoimmune and if IVIG or Ritux might be helpful in their case please review the videos for more information regarding this. My personal belief is a lot of CFS is dysautonomia and as noted in these presentations the autoimmunity can have multiple...
  16. kms1990

    Dysautonomia often Autoimmune

    For those questioning if their dysautonomia is autoimmune and if IVIG or Ritux might be helpful in their case please review the videos for more information regarding this. My personal belief is a lot of CFS is dysautonomia and as noted in these presentations the autoimmunity can have multiple...
  17. kms1990

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

    Hi, yes I am doing it for autoimmunity. I get it weekly though @ .4g per kg. I tried doing loading doses monthly but it was too hard on me. Weekly was suggested by a neurologist I saw at Mayo clinic. Its much more tolerable for me and its working. Though its slow progress. Yes almost all doctors...
  18. kms1990

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

    I had positive cell trend results along with other immune abnormalities. I am on IVIG for 2 months now. It is helping me but I am still very ill. I have been sick with this over 8 years so I think my recovery will be slow and possibly not complete. However, I am hopeful I will get back to my...
  19. kms1990

    Rituximab + IVIG

    Thanks! How far along are you with Ritux? Have you noticed any adverse affects since beginning? Based on what I have read about b cells ect it seems positives impact would start showing up a few months in, maybe faster if you also have IVIG eating up "bad" antibodies previously produced by the...
  20. kms1990

    Seeking information on long-term outcomes with Dr. Kaufman

    Yep I am! Tested positive by cell trend and a few other things during testing with Dr K and at Mayo Clinic AZ. On IVIG now, trying to figure out about Ritux. I don't think I have classic CFS. I think I have some sort of autoimmune illness affecting my circulatory system and possibly mito function.
  21. kms1990

    Rituximab + IVIG

    Has anyone tried this, or have any experience / literature of their affect when administered together?
  22. kms1990

    Seeking information on long-term outcomes with Dr. Kaufman

    I will try to post something with a lot more detail in the future, but I think Dr Kaufman is the best Doctor I have seen without question for CFS and frankly for anything. (I've seen Natelson, Klimas, Rey, Stewart, Bransfield the list goes on and on. Likely close to 30 doctors by now) I have an...
  23. kms1990

    Dr. Kaufman patients. Anyone Bartonella positive in Galaxy Lab being treated here?

    Sorry Folk. Was not reading into it that way. I just think bartonella is really big issue not addressed well by medicine right now. I think its clear that not every CFS patient is going to have it. But I think a large % might. Its amazing speaking to so many people who get a lot better treating...
  24. kms1990

    Dr. Kaufman patients. Anyone Bartonella positive in Galaxy Lab being treated here?

    I trust Dr Kaufman completely. I believe he works closely with Dr. Robert Mozayeni one of the real experts on Bartonella (who is also associated with Galaxy). Galaxy Diagnostic testing was designed with the help of a veterinarian Edward Breitschwerdt who has a profound interest in Bartonella. He...
  25. kms1990

    Got treatment in the EU and doing well starting remission

    Wow Shawn your story rings true for me. I am just now starting to go through the trail and error of treating autoimmune encephalitis and associated illness. (I have something different than you with very high D2 antibodies) I was diagnosed with this in the last 2 weeks after 9+ years of a CFS...
  26. kms1990

    Research on how adrenergic & muscarinic receptor antibodies cause symptoms in POTS, OH and CFS

    Thank you both for your replys. @Gingergrrl - I believe paraneoplastic refers to a syndrome caused by cancer. The cancer causes autoantibodies itself and produces them. From some of the recent medical reviews I have read, the paraneoplastic antibodies are much more "insidious" and damaging and...
  27. kms1990

    Research on how adrenergic & muscarinic receptor antibodies cause symptoms in POTS, OH and CFS

    @Gingergrrl Thanks for your reply Gingergrrl! Does this mean the α3-(nicotonic) AChR antibodies are not covered by this test? I am not sure if these are super important and if I should specifically be tested for them.
  28. kms1990

    Research on how adrenergic & muscarinic receptor antibodies cause symptoms in POTS, OH and CFS

    This is all very interesting. I was wondering if someone could have a look at my mayo labs and see if this test was run on me? Thanks!
  29. kms1990

    Denied treatment in the UK need to leave my country again.

    Wow you story is intense. I am very sorry for all of your suffering. However, it sounds like you are a fighter and not sitting back while your illness takes hold. I am a firm believer that the people who get better from serious illnesses are the ones who take it into their own hands and partner...
  30. kms1990

    POTS, OH, CFS: List of labs which test for adrenergic and muscarinic receptor antibodies

    I'm not from the UK but here in the US most labs will do this for you if you have a doctors order. Any facility specifically for blood work should have a centrifuge. A GPs office should but may not in all cases if they have blood work done out of the office.