• Welcome to Phoenix Rising!

    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. 7

    Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness an

    OK, got it. Thanks!
  2. 7

    Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness an

    Yes he does. He devotes a few pages to it. It's a little long to quote the whole passage here. There doesn't seem to be any reference to Lyme disease in the book.
  3. 7

    Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness an

    @Gingergrrl Could you post some links to the Masto boards? I'd like to send them along to my wife. Thanks.
  4. 7

    Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness an

    @Gingergrrl, one thing Dr. Afrin stresses in the book is that when he digs deep enough into the medical history of his patients he can find signs of the illness go back decades and even into childhood. I'm wondering if that is the case with you? It is certainly the case with my wife who was...
  5. 7

    Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness an

    This is what Dr. Afrin says in the book "What causes the disease? That question alone will require decades of effort by an army of researchers. Given that there is a familial predilection for mast cell disease but that different affected members in a given family almost always bear different...
  6. 7

    Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness an

    This book was just published a couple of weeks ago. Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity My wife was recently diagnosed with mast cell disease and this book is a fascinating read
  7. 7

    Unfolded Protein Response and A Possible Treatment for CFS

    That is interesting. I've been looking at that supp. as an alternative to TUDCA and just wasn't sure about it. I think I'll give it a try after my current bottle of TDUCA runs out.
  8. 7

    Unfolded Protein Response and A Possible Treatment for CFS

    I certainly find this interesting, because I have to supplement iron in order to keep my ferritin above 50 mcg/L. I suffer from restless legs syndrome and if my ferritin gets too low my RLS gets worse.
  9. 7

    Unfolded Protein Response and A Possible Treatment for CFS

    PEM = Post Exertional Malaise At least for me this meant that after any physical activity outside the norm that I would suffer from extreme fatigue, brain fog, and sometimes headache. I would have to retreat back to bed and wait to recover enough energy to perform basic daily tasks. For HRT...
  10. 7

    Unfolded Protein Response and A Possible Treatment for CFS

    I don't want to say I have CFS, seems people on this forum get pretty upset when someone new comes on and claims to have CFS. What precipitated my health decline was a health crisis for a family member. This meant I needed to provide 24 hour care for that family member and as a result I did not...
  11. 7

    Unfolded Protein Response and A Possible Treatment for CFS

    OK, thank you. That's what I thought. I spend a lot of time on men's health forums, which deal mostly with hormone replacement, and I'm sometimes amazed to watch people spin elaborate theories about how fluctuations in certain hormones or neurotransmitters can cause various symptoms when, at...
  12. 7

    Unfolded Protein Response and A Possible Treatment for CFS

    Tudca 250mg AM and PM MethylB12 injections 5mg twice per week Dibencozide 10mg QD - I just ran out of this so am discontinuing for now 5-MTHF 5mg QD AlphaGPC 300mg QD TMG 750mg QD FMN 25mg QD P-5-P 50mg QD L-Tyrosine 500mg QD Pycogenol 50mg AM and PM Pantothenic Acid 500mg QD Vit B-1 100mg QD...
  13. 7

    Unfolded Protein Response and A Possible Treatment for CFS

    @Valentijn I've been lurking on PR for several months after developing severe PEM last summer, this was after several years of poor health. Searching through the forum here I came across Freddd's protocol, Mario's protcol, and a post you made where you said NAC helped you sleep (I also suffer...