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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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mast cell activation

  1. Thebirdman333

    Horrific Gut Anxiety Feeling?

    So I had an allergic reaction back in February and then had this awful, god awful, feeling. It was not PEM, but what essentially was happening was I would almost get these like adrenal rushes from my stomach. And it would cause me to feel super hyper, like I would be talking super fast and...
  2. I

    Link between POTS, MCAS and CFS - Innate inflammation in response to an antigen..t-cell exhaustion's role?

    31:00 onwards Dr Grubb explains which autoantibodies are found in POTS and suggests they are driven firstly by the innate immune system, including mast cell mediators and other cytokines, which then triggers the adaptive immune system to make autoantibodies . He argues it can't be coincidence...
  3. I

    Lactoferrin dosage

    Hi, does anyone know how often Lactoferrin should be taken in order to inhibit tryptase? Thanks
  4. H

    Problems with Mast Cell stabilizers

    So I'm at my wit's end a bit this evening. I'm currently on a plan from my MCAS doctor to take Mast Cell stabilisers in the hope it calms my symptoms, but I've just tried a new one (Ketotifen) and I'm reacting badly to it, and I'm wondering what to do. The background to this is that initially I...
  5. nerd

    Poll: Mast cell and histamine degradation genotypes

    I know that there has been one poll on how frequently MCAS co-exists with CFS/ME. But I could imagine that some of the negative cases just are not perceived as MCAS when, in fact, the mast cells might still be dysregulated asymptomatically. This is why I would prefer to describe the condition...
  6. H

    Causes of MCAS?

    Hi all, I'm wondering if anyone has any info on what are the possible causes of MCAS? And if someone's looking to try to address the root cause of their MCAS what areas should they look into, and in what order of importance? I'm also interested in whether anyone here has managed to figure out...
  7. nerd

    Histone Deacetylase (HDAC) Inhibitors and the Ketogenic Diet

    As someone who's advocated for the ketogenic diet in this forum, I think I should add the following warning about it. But please bear with me, there is more to it. The ketogenic diet (as a single therapy) can trigger viral reactivations. Here are three papers for reference. The first one...
  8. nerd

    Long-COVID and CFS/ME are not MCAS

    The inducement for this post is the growing publicity of the theory that Long-COVID is just a simple disease in disguise, such as MCAS, and that there is a quick solution around the corner. For MCAS, a low histamine diet would be a simple fix to all the problems. This is the subtext of the...
  9. Jwarrior77

    Is This Considered Pressure Urticaria? Or Dermatographia?

    I've been wondering if anyone else experiences this. If I press my hand let's say on my face too long the area where the pressure was will turn very red. Not itchy or raised but a little hot. This can occur basically anywhere you apply pressure to not only my hands. Also if I scratch my skin the...
  10. Jwarrior77

    Eosinophils and their role in Connective Tissue Disorders, Autonomic Dysfunction, and Mast Cell interactions.

    There has been increasing research on the role of eosinophils and connective tissue disorders. The eosinophils main role is fighting off parasitic infections, however they also play a huge part in allergic responses and inflammation. They release many cytotoxic and neurotoxic chemicals that...
  11. L

    Autism, Hypermobility Type EDS and ME/CFS

    Hello, I wrote an article about how autism, joint hypermobility, ME/CFS and mast cells could be related. TL;DR: People with hypermobility type EDS have 7.4 times the risk of autism, according to a large Swedish and American study. Researchers have found increased amounts of a cell called a...
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