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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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Search results

  1. tyson oberle

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    About a year ago I did a test called Glycocheck that showed that I have very low capillary density and I feel pretty sure that's why I have ice cold hands and feet. At first I wasn't sure if this was a legitimate test so about a month later I had my mom and my brother do the test as a control...
  2. tyson oberle

    Has anyone tried antiplatelet therapy or anticoagulants ?

    My hands and feet are ice cold, but I have never noticed purple under my nails. They always look pink to me.
  3. tyson oberle

    Has anyone tried antiplatelet therapy or anticoagulants ?

    My doc prescribed aspirin with apixaban and i have been on them for over 6 months now, but it hasn't helped at all. I still have ice cold hands and feet, cold intolerance, chronic fatigue, etc. In the past I also have tried high doses of serrapeptase, nattokinase, and lumbrokinase with no...
  4. tyson oberle

    MyMycolab Test? Valid test for mycotoxins?

    So did you ever do this MyMycoLab test? Have you learned anything about whether this test is worthwhile to take? Or does anyone else know? Anyway, I did the urine mycotoxin test and my gliotoxins were about 30x higher than the highest normal range. My doctor prescribed Nyastin, NAC, G.I. Detox...
  5. tyson oberle

    Something exciting is coming in November

    I would like to know, thanks
  6. tyson oberle

    Biomesight

    Do you know what is causing the bloating or do you have a suspicion of the cause?
  7. tyson oberle

    List of my symptoms. Am I a rare case?

    I also tried fasting. I once did a 7 day water only fast and I think it made things worse and I don't think I ever recovered 100%. Same here, I also have dark circles under my eyes and people have said I look like a regular drug user even though I have never once in my life used drugs. I am...
  8. tyson oberle

    List of my symptoms. Am I a rare case?

    I also did the carnivore diet for a number of months and I didn't feel any better. I alternated between grass fed beef, grass fed bison, grass fed lamb, bone marrow, small amounts of different organ meats and sometimes salmon or another fatty fish. Right now I am almost 3 weeks into the Auto...
  9. tyson oberle

    Studies find that microbiome changes may be a signature for ME/CFS

    I never once felt kiwi pills helping me
  10. tyson oberle

    Chronic infection that you might have never heard about: "ropeworm"

    I did whole body hyperthermia in Mexico, but unfortunately it didn't help. I also bought a brown's gas machine, but I have been using only the hydrogen gas and not the hydrogen and oxygen mixture (brown's gas). I have been using the hydrogen gas for about 2 hours a day for about 2 weeks now, but...
  11. tyson oberle

    Is Apheresis an effective treatment for Long Covid and ME?

    I personally would only do HELP apheresis if it showed that I have microclots. A lot of people who did this treatment didn't even get tested for microclots.
  12. tyson oberle

    Studies find that microbiome changes may be a signature for ME/CFS

    When I started to take Kiwi Regularity from Enzymedica which has Actinidin enzyme 25,000 U/g I started to get more neck and shoulder pain. I thought it was possibly from the added dextrose in this supplement, but maybe it was from the Acticidin? Anyway, I didn't even finish the Kiwi Regularity...
  13. tyson oberle

    Sticky Blood

    I have ice cold hands and feet and cold intolerance, can von Willebrand factor (vWf) cause that? Because when I see the symptoms for vWf I only see nosebleeds, easy bruising, blood in urine, excessive bleeding, etc; none of those symptoms I have. Incidentally, my anemia tests always show normal...
  14. tyson oberle

    Studies find that microbiome changes may be a signature for ME/CFS

    Surely, there must be many other good bacteria killed when exposed to oxygen. Wouldn't it be better to insert whole unprepped pieces of donor stool into the rectum without doing anything to it? I'm thinking that the good bacteria inside the donor stool wouldn't be exposed to oxygen and therefore...
  15. tyson oberle

    Sticky Blood

    I see that one of the symptoms of APS is high blood pressure. I always have normal blood pressure or a little on the low side
  16. tyson oberle

    Sticky Blood

    I tried high doses of nattokinase for a month but still had ice cold hands and feet and cold intolerance. I also separately tried high doses of lumbrokinase and serrapeptase for a month each as well, but I felt nothing different.
  17. tyson oberle

    Studies find that microbiome changes may be a signature for ME/CFS

    I ordered a microbiome test from www.flore.com about 6 months ago and I checked my f. prausnitzii and it made up 1.12% of all my microorganisms of my sample. So I bought some Kiwi pills and I will see if it helps
  18. tyson oberle

    ME/CFS, Fibromyalgia, and Long COVID – the “Metabolic Derangement” Diseases?

    So what is the solution for high phytanic acid? Is it to only "avoid meat and byproducts from animals with ruminant stomachs and dark green vegetables"? So are you saying you only avoid meat from animals with ruminant stomachs? And if yes, so I can understand, what is the difference between...
  19. tyson oberle

    Poll: Do you have Myalgic Encephalomyelitis (ICC)

    Can you send me a lab slip? or can I get my Doc in the USA to do it for me?
  20. tyson oberle

    Red blood cells grown in a lab

    I keep hearing about ME/CFS researchers finding "something in the blood" and so I wonder if this would help us. First-ever lab-grown blood could change medicine forever (msn.com)
  21. tyson oberle

    Is Apheresis an effective treatment for Long Covid and ME?

    Hi @FinRinTin thanks for sharing your HELP Apheresis experience with us so far but we never got a response from you when I asked you on Oct 22 if you were tested for microclots beforehand? And have you done that November HELP apheresis treatment or treatments yet? If so, how did it go?
  22. tyson oberle

    Is Apheresis an effective treatment for Long Covid and ME?

    @FinRinTin How are you doing so far? And before your treatments, did you ever get tested for microclots?
  23. tyson oberle

    Using covid longhauler test on me/cfs patients

    Have you yourself done these Covid longhauler tests? And if not, do you plan on it?
  24. tyson oberle

    Is Apheresis an effective treatment for Long Covid and ME?

    Did you start the treatments yet? If yes, how are you doing so far and how many treatments do you plan on doing and how many days of waiting between treatments?
  25. tyson oberle

    Is Apheresis an effective treatment for Long Covid and ME?

    How many treatments do you plan on doing? And how many days are you supposed to wait between treatments?
  26. tyson oberle

    Remission - finally something to tell you <3

    If you are not severely affected, you might want to try clindamycin as a monotherapy. I started with 2x 300mg but now I take 2x 600mg - this is not medical advice, of course! I know it's not medical advise, but some people might be at risk of getting c diff from clindamycin according to this...
  27. tyson oberle

    A new way of thinking and searching

    Why do you think you were always cold? Do you think it was occuring from one of the 21 diagnosises you mentioned? or could it be low thyroid? or Anemia? or possibly from inefficient mitochondria not generating enough body heat? or bad circulation? or microclots?
  28. tyson oberle

    Is Apheresis an effective treatment for Long Covid and ME?

    Why don't you try to contact them to ask if they can check your blood beforehand to see if you have the microclots that HELP Apheresis eliminates to know if this treatment is even indicated for you?
  29. tyson oberle

    What has helped you with sleep/insomnia - post links

    When I researched sleep apnea using Google I didn't find anywhere that says this condition makes it difficult for a person to fall asleep. You said that you could fall asleep and it looks like your husband could fall asleep as well because you didn't mention it as a problem for him. So I am not...