mcas

  1. SWAlexander

    Persistent Antiphospholipid Antibodies, Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome and Post-COVID Syndrome: 1 Year On

    Abstract This is the first case report of a patient with post-COVID-19 postural orthostatic tachycardia syndrome (POTS) with multiple persistent antiphospholipid antibody (aPL)-positivity more than a year after illness onset who also meets Global Consensus-2 criteria for mast cell activation...
  2. frozenborderline

    Evusheld, long lasting aspects, and possible side effects

    At this point I don't think evusheld or novavax are terrible risks compared to other immunization treatments against covid, or compared to effects of covid itself. However I do worry about one thing. i should like to ask an immunologist or a knowledgeable patient about this: if evusheld, the...
  3. frozenborderline

    Headless youth podcast Origin Story Part III--my experiences with CCI diagnosis, the history of Lake Tahoe and Environmental illness

    Listen to Origin Story Pt. 3 by Headless Youth Podcast on #SoundCloud https://soundcloud.app.goo.gl/pHvgT
  4. frozenborderline

    Immune problems, covid, and waiting for the right vaccine

    I can't feel safe going out to appointments, which I desperately need for a number of things, until I'm somewhat immunologically protected against covid. I'm unvaccinatd. I have seen what the mrna vaccines risk doing to people with severe ME and mcas. On the other hand I believe covid is...
  5. SWAlexander

    Mast Cell Activation Syndrome (MCAS)

    Mast cells are found throughout the body and play a complex and critical role in immune response and keeping people healthy. However, when these cells become altered or activate inappropriately to specific triggers, they can create symptoms throughout the body. While mast cell activation...
  6. frozenborderline

    An Open Letter to the Open Medicine Foundation, by Kaylin Jones

    https://openletteropenmedicinefoundation.com/an-open-letter-to-the-open-medicine-foundation-by-kaylin-jones/ Another person asking the OMF to look into mold or environmental toxins in ME/CFS. So far they haven't responded. But lets keep trying. If anyone else has experienced environmental...
  7. frozenborderline

    Hellmouth (a story about being in hell)

    https://atomicchesterton.blogspot.com/2022/02/hellmouth.html?m=1 This was previously published in lit mag softcartel. It's based on composites of dreams and real experiences that come from the truly hellish experience of severe ME/CFS I think it's a pretty good story and maybe a realistic...
  8. frozenborderline

    What outlets do we have to publish pieces of art or writing about this illness and theology or spirituality, or just any art about it?

    What outlets besides our own blogs can we publish art specific for ME/CFS peolle or people with chronic illness? Omf rejected a poem I wrote for supposedly being too dark, it made me very sad and made me think I cant really connect with people in the me/cfs community. Bc this particular poem...
  9. 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...
  10. I

    Lactoferrin dosage

    Hi, does anyone know how often Lactoferrin should be taken in order to inhibit tryptase? Thanks
  11. vision blue

    Mast Cell Activation Syndrome and Long Co

    Not sure if anyone has posted this paper https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8459548/#__ffn_sectitle
  12. SWAlexander

    Should There be an Increased Focus on Lipedema, the Lymphatic System, and Adipose Tissue Fibrosis in Ehlers-Danlos Syndrome, Fibromyalgia and ME/CFS?

    Article Along with fatigue and nausea, pain has been one of the defining symptoms of my daughter’s illness. After she was diagnosed in 2018-2019 at age 14-15 with hypermobile Ehlers-Danlos syndrome (EDS), chronic fatigue syndrome (ME/CFS), craniocervical instability, Chiari malformation, occult...
  13. SWAlexander

    Updated Diagnostic Criteria and Classification of Mast Cell Disorders: A Consensus Proposal

    Abstract Mastocytosis is a hematologic neoplasm characterized by expansion and focal accumulation of neoplastic mast cells (MC) in diverse organs, including the skin, bone marrow (BM), spleen, liver, and gastrointestinal tract. The World Health Organization classification divides the...
  14. frozenborderline

    I have Hereditary Alpha Tryptasemia , what does this mean for my care?

    I have long had sensitivities to things like mold and outdoor toxins such as Mystery toxin Hell toxin Cyanobacteria Fire Retardant Associated Toxin There was always a lot of crossover with ME/CFS as being in good air helped my PEM and energy envelope more 5han any other treatment and...
  15. frozenborderline

    How do i get my doctor to pay attention to my case and be less scattered and more responsible ?

    I found an amazing immunologist and mast cell specialist. I thought "since my current me/cfs specialist is too scattered to help me well, this doctor should suffice, and maybe she can lead a bit more in treating my case rather than me having to do a lot of the steering". Well, our first visit...
  16. Sherpa

    Getting Over Post-Vaccination Flare

    Hi Friends, I got the Moderna vax second shot 17 days ago and I am still feeling a post-vaccination flare. I had been completely recovered and working full-time and exercising hard for past 3 years. I had nearly forgotten about CFS. The vaccine has temporarily thrown me back into a world of...
  17. Aspen

    MCAS elimination diet: tips and tricks?

    Hey folks, here’s a place to post your MCAS safe-food wisdom! I’m finally starting to get a handle on my MCAS food and skin product sensitivities… it’s blowing my mind how many things I react to, but also how much better I can feel when I stick to safe foods/products. While I’ve heard folks...
  18. Sherpa

    Palmitoylethanolamide (PEA) to deactivate mast cells

    Friends, I have been suffering from an intense mast cell activation flare due to the Moderna Covid vaccine. While researching treatments into MCAS, I came upon an blog talking about how both CBD and PEA (palmitoylethanolamide) reduce mast cell activation. It quotes: PEA reduces mast cell...
  19. frozenborderline

    Seeds of some ideas: art and movies that relates to ME/CFS

    https://openletteropenmedicinefoundation.com/some-assorted-pieces-of-art-that-will-help-make-sense-of-this/
  20. 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...
  21. frozenborderline

    My grand theory of etiology part II

    I've posted my unifying theory of etiology before. But part II is not quite done yet, however it has a lot of the parts there, just not all there, and not assembled properly or in order, so I've decided to kick off working on assembling it by posting about it here. None of the parts by...
  22. frozenborderline

    Long Covid, MCAS and Environmental Toxins--Lake Tahoe 2.0?

    https://openletteropenmedicinefoundation.com/long-covid-and-environmental-toxins-lake-tahoe-2-0/ Is the CDC and general scientific community retreading ground from the Lake Tahoe outbreak that caused the invention of the CFS syndrome /category of illness ? Are they reinventing the wheel, so to...
  23. H

    Do Covid Vaccines trigger reactions in MCAS patients?

    I've not had the vaccine so far as I'm worried how I'll react. And I'm completely isolated on account of my ME/CFS so I considered the risk of catching Covid much lower than having a bad reaction to the vaccine. My MCAS doctor though wants me to go for a bunch of tests and has such now wants me...
  24. frozenborderline

    Long covid, mold and mcas--Lake Tahoe 2.0?

    https://openletteropenmedicinefoundation.com/long-covid-and-environmental-toxins-lake-tahoe-2-0/ Heres a short post I made on my website about long covid and mold. Hopefully google indexes it soon. For now, hopefully I can get some eyes on it by posting it here.
  25. H

    Has anyone managed to considerably improve or even cure their MCAS (with say mould or gut bacteria treatment)?

    So as the title suggests I'm wondering whether anyone's managed to improve their MCAS by fixing other ailments, ideally to the extent they can come off MCAS mediator medications or even tolerate high-histamine foods again? I've read MCAS isn't thought to be something you're born with, but...
  26. 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...
  27. M

    Long Hauler trying to prepare for a 24h urine test

    Hello MCAS folks, I am a Covid Long-Hauler. For a while I have been wondering if what I am experiencing is part of MCAS, given that is the case with many other suffering post-Covid. I DO NOT have the typical symptoms like hives, swelling, low blood pressure, syncope, diarrhea. I DO have...
  28. H

    93% of CFS patients tested positive for mold/mycotoxins?!

    So this study has already been posted in the Research section of PR, but the thread has sort of died as it started back in 2013. I am reposting here because it's directly related to mould and mycotoxins and feel it's a useful area of discussion in this area of the site. Here is the link And...
  29. frozenborderline

    ME/CFS "theory of everything" Etiology

    https://walkerstorz.com/me-cfs-etiology/ This isnt the final form of the theory. I have three substantial parts to add, and it will become even more big and unwieldy. :) But I think that its substantial enough that I may as well put it out there for now. @Hip I referenced your dual factor...
  30. 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...