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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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Search results

  1. Belbyr

    Ending sympathetic activation

    What is the 'natural way' to turn it off?
  2. Belbyr

    NIH research findings: mTOR

    https://www.healthrising.org/blog/2022/07/06/apamycin-resurgence-doctor-chronic-fatigue-syndrome/
  3. Belbyr

    NIH research findings: mTOR

    Video This seems like a big finding in CFS patients from the big NIH trials. Mouse models seem to prove it too.
  4. Belbyr

    Prusty talks about his upcoming research on a podcast

    I think he mentioned he would have a paper by the time he speaks on it in 2-3 weeks, or I could have been hearing things...
  5. Belbyr

    Has oxygen therapy helped you?

    I was doing those years back and I felt like they helped. Is it the one where your blood turns really bright red before it goes back in you?
  6. Belbyr

    Prusty talks about his upcoming research on a podcast

    You might be right
  7. Belbyr

    Prusty talks about his upcoming research on a podcast

    I highly doubt it. Fasting does seem to be a craze lately amongst the healthy and unhealthy.
  8. Belbyr

    Prusty talks about his upcoming research on a podcast

    Yeah same thing. He just hasn't revealed what it is yet. He claims it is 'working beautifully' in testing other patients. To be determined o_O
  9. Belbyr

    Prusty talks about his upcoming research on a podcast

    Ironic that I had to get a bone marrow biopsy 3 years ago because I have unexplained B cell expansion.
  10. Belbyr

    Tissue specific signature of HHV-6 infection in ME/CFS (Bhupesh Prusty)

    I messaged Prusty on twitter and surprisingly he short replied. I asked if his new biomarker collaborated professor Iwasaki's findings and he said, 'some of it.'
  11. Belbyr

    Tissue specific signature of HHV-6 infection in ME/CFS (Bhupesh Prusty)

    Professor Iwasaki at Yale also found evidence of herpes reactivation in long covid. Particularly EBV and VZV. I think it was a result of exhausted T cells...
  12. Belbyr

    Tissue specific signature of HHV-6 infection in ME/CFS (Bhupesh Prusty)

    Is there evidence for this in any journals?
  13. Belbyr

    If money was no object, which doctor/clinic would you see?

    Could you tell us more about it? Maybe a little bit about your story and how they are trying to help you? I'm kinda desperate these last 6 months being in another really bad crash that isn't letting up.
  14. Belbyr

    Can everybody make a list of things that helped their fatigue?

    Has their testing improved? They falsely diagnosed me with lyme 15 years ago via a ‘LLMD’s request’ and I spent 2 years chasing it with IV and oral antibiotics to no avail.
  15. Belbyr

    If money was no object, which doctor/clinic would you see?

    I've been all over the country (Mayo, Nova, Wake Forest, U of Louisville, U of Miami, etc) mostly trying to rule out any other little thing that could cause my illness. I am still left with POTS and/or CFS with no treatment. I'm on a low dose beta blocker that doesn't help much at all, and low...
  16. Belbyr

    Is there a good B complex supplement that helps, esp. with neurotransmitters ?

    I had to stop taking B vitamins even though I felt like they helped a little. Turns out you can get too much in your system and it can cause issues, permanent issues if you're not careful.
  17. Belbyr

    Can everybody make a list of things that helped their fatigue?

    This is a strange story, but I once came down with iodine toxicity. A Dr (quack) was telling me to take these iodine pills as a supplement for about a year. Welp, I built up a huge store of iodine in my thyroid and got sick with a fever once. Once that happened it kicked off a huge dump of...
  18. Belbyr

    Is "Unrefreshing Sleep" actually too refreshing?

    My newest Garmin watch tells me I get poor REM sleep but Deep and Light sleep are typically pretty good. One night about 5 months ago I decided to have a small drink of whiskey before bed and the REM sleep was terrible! and I felt terrible too, so it makes sense.
  19. Belbyr

    Advice needed regarding Dr. Chia

    I did equilibrant for a while. The problem is there is no way to objectively test/check that it works or not. I am obviously still sick after taking it for several months. Maybe Dr Chia is right or maybe not, no one seems to know honestly.
  20. Belbyr

    My experience with several ME/CFS doctors

    I saw Klimas at NOVA in 2019 and only briefly saw the other doctors there. I do remember the one woman talking about pacing and focusing on rest. I had to brush that one off. I get where she is coming from but it's nothing new/worthy of paying for... Klimas ran a ton of tests on me and...
  21. Belbyr

    Possible Stiff Person Syndrome

    I am in the process of trying to get a second opinion. The Dr I saw is a 78 year old neurologist in my home town. When he examined me he said I had dry mouth (but I don't, I over salivate due to my GI issues) he also said I didn't have any reflexes, but I went home and grabbed a tool to check...
  22. Belbyr

    Current or Former Patients of Blair Grubb?

    So where I'm at right now is I have one neurologist thinking I have LEMS. But the issue is, even though I have had 1 positive test for N type VGCC antibodies, I've had other tests before and after that say negative. My EMG and nerve conduction tests are suspect at the moment. The short of it...
  23. Belbyr

    Current or Former Patients of Blair Grubb?

    I've been to see Dr Grubb and Beverly. It's been about 4-5 years ago. I was a little underwhelmed, but at the same time it seems I might have something else going on, not sure just yet. They didn't do much testing on me more focus was on trying to find a medication that helped. If you are...
  24. Belbyr

    Gastric dysmotility and gastrointestinal symptoms in myalgic encephalomyelitis/chronic fatigue syndrome (Steinsvik et al, 2023)

    Do you have SIBO? I remember getting checked for it amid all of my gastro tests and the doctor said, ‘good, you don’t have a lower GI motility issue’.
  25. Belbyr

    Gastric dysmotility and gastrointestinal symptoms in myalgic encephalomyelitis/chronic fatigue syndrome (Steinsvik et al, 2023)

    When I went to Wake Forest to see Dr Kenneth Koch (well known motility specialist) he did a big battery of tests on me. One of them was called an 'EGG' similar to an 'ECG/EKG" but it is for the stomach. It measures to see if you have a normal stomach rhythm. Then he handed me a huge cup of...
  26. Belbyr

    Screaming Tinnitus

    I notice when I take Ativan for my other symptoms (when severe) I don't really seem to care about my tinnitus and fall asleep without the sound machine on.
  27. Belbyr

    Screaming Tinnitus

    I have tinnitus that I don't know if it is related to my illness or if it is due to concerts/music/firearms/motocross/etc. It got really bad around late November of 2022 and I think it was due to a gunshot that went off by my head. I went to an audiologist and hearing is still intact, but there...
  28. Belbyr

    Glutathione or no glutathione?

    I did glutathione by IV daily for almost a year when I thought I had 'chronic lyme' many years ago. The glutathione didn't do anything. It's worth a try but if it really worked, I think tons of patients would be demanding it.
  29. Belbyr

    Much worse following bone marrow biopsy

    Thats exactly what I went through in 2019. Similar results too. Actually was at the hematologist today, and he feels I'm good to spread out my follow ups.
  30. Belbyr

    Much worse following bone marrow biopsy

    I was put to sleep for mine and recall the recovery being awful as far as pain and stress. Apparently they had to use some harsher tools to get through my bone. I think it was once that local meds wore off, it was pain akin to a kidney stone. Very nauseated, very poor sleep, sick feeling, etc...