• 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.

    To become a member, simply click the Register button at the top right.

mcas

  1. 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...
  2. 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...
  3. 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.
  4. 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...
  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. 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...
  7. 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...
  8. 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...
  9. 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...
    • hb8847
    • Thread
    • food sensitivity leaky gut lyme mast cell activation mast cell activation syndrome mcas microbiome mould mycotoxins sibo
    • Replies: 18
    • Forum: Mast Cell Activation (MCAS)
  10. 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...
    • nerd
    • Thread
    • epigenetics histone histone deacetylase long covid long hauler mast cell activation mcas
    • Replies: 12
    • Forum: Mast Cell Activation (MCAS)
  11. Jwarrior77

    The Causes of ME/CFS, POTS, and Chronic Illness - A patients opinion

    This is my opinion on the causes of these illnesses coming from a patient who suffers from these conditions. My opinion is based on my own experience, research from the top scientists studying this, and also other patients such as Jeff Wood, Jen Brea, and others who have contributed a lot of...
    • Jwarrior77
    • Thread
    • connective tissue eds lyme disease mcas metabolic trap microbiome neuroinflammation toxic mold vagus nerve viral persistence
    • Replies: 7
    • Forum: General ME/CFS Discussion
  12. frozenborderline

    "helpless" an essay on severe ME/CFS, becoming an unwilling canary/seer/etc

    https://atomicchesterton.blogspot.com/2020/06/helpless.html
  13. frozenborderline

    Open letter to the Open Medicine foundation

    Just the scant beginnings of a long-term advocacy project I'm working on Re environmental factors in this illness and having the omf address them. https://openletteropenmedicinefoundation.com
  14. frozenborderline

    "Go west young man", a podcast interview with a guest who did mold avoidance to put his illness in remission

    Here's a new one, particularly long, in which I interview a friend I knew from school who got sick with similar issues simultaneously to me and ended up pursuing mold avoidance in new Mexico. We talk about his whole journey but at the end we get into his visions for using permaculture to...
  15. V

    Dermatographia anyone?

    Anyone have dermatographia? It can go with mast cell issues but doesnt have to. (For those who dont know, its sometimes referred to as skin writing. Its when even light scratching of skin leads to a local wheal and flare reaction. So if you write a word on your skin for example, 5 min later...
  16. frozenborderline

    Mast cell activation syndrome is not what it seems

    Many doctors present mast cell activation syndrome as if it's a syndrome where someone mast cells are on high alert for noreason, or for an idiopathic and possibly genetic reason, and so they get triggered by totally harmless things and cause issues. In my opinion. Nobody knows enough about mcas...
  17. frozenborderline

    Keeping a master list of all abnormal results in my case

    Starting now and off the top of my head. I will have a caregiver go back to the actual documents to find details as they come up. For now , however, I will post that something is out of range without specific number as I'm going from memory. Abnormal Clivo axial angle, on two separate...
  18. frozenborderline

    My story of getting ill told in podcast form

    Listen to Origin Story Pt. 1 by Headless Youth Podcast on #SoundCloud https://soundcloud.app.goo.gl/heCz
  19. L

    Anti IL4/5/13 for Mast Cell Disorders and Multiple Chemical Sensitivities and ME/CFS by proxy

    Lately several antibodies targeting the receptors IL4, IL13 and IL5 have been approved for a range of conditions : asthma, eczema and chronic rhinosinusitis. These new treatments efficiently down regulate Th2 mediated inflammation and relieve symptoms. They work best for people who have an...
    • lateM98
    • Thread
    • immune modulator mast cell activation syndrome mcas multi treatments
    • Replies: 4
    • Forum: General Treatment
  20. mitoMAN

    MCAS: What meds helped you most?

    I just gut diagnosed MCAS from IMD Berlin laboratory and started a treatment two weeks ago. I am wondering what medications helped you most and what combinations did you end up taking? IMD Berlin officially recommends the following possible cocktail: Brands might be specific for Germany or...
  21. frozenborderline

    ME/CFS "theory of everything"/etiology

    Here's a draft I'm working on regarding me/cfs etiology. Would love any feedback. It's not entirely novel, draws on theories by Jeff, jen brea , Erik Johnson, and @Hip https://docs.google.com/document/d/1MnGJs4IzeFi44r_JkEgw5zUEiHF9CRsLCBT7t9umDKE/edit?usp=drivesdk
  22. I

    UK MAST Specialists

    Hello I am now dealing with escalating MAST symptoms. Primarily bowel, but others too. I have 20 yrs of CFS & Crohn's too. Now the food is MAST triggering my CFS and I can barely eat anything. I need a Dx and treatment. But where do I go to find this. Most advice talks about how...
  23. frozenborderline

    Critiques of common conceptions of MCAS

    https://atomicchesterton.blogspot.com/2020/06/critique-of-concept-of-mcas.html?m=1
  24. P

    Role of EZH2 in ME/ CFS and POTS

    Hi, I have been a silent reader of this forum for many years. During the past couple of months, I often had to think about a study from Australia. There, it is said, that POTS (at least in a subgroup) is caused by an epigenetic malfunction of the NE-Transporter. This epigenetic malfunction can...
  25. 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...
  26. M

    Elevated CU index - Autoimmune Mast Cell Disease?

    My new immunologist had me do a test recently called a CU index. I had an elevated result with autoantibodies against IgE. More info on CU index if interested https://www.viracor-eurofins.com/test-menu/2103-cu-index/ From what I understand, the CU index is done for patients with chronic...
  27. frozenborderline

    Outdoor toxins of particular relevance to mold illness patients

    https://paradigmchange.me/wp/outdoor-toxins/ There is a lot of focus on building mold in me/cfs but often outdoor toxins are underlooked, because they are harder to study. But there is a large volume of anecdote suggesting they matter in me/cfs as much as building mold.
  28. J

    Elevated Vitamin D 1,25 Dihydroxy and Low Vitamin D, 25-OH

    Hello all, I have an abundance of multi-system symptoms that seem to be some sort of chronic version of ME, dysautonomia, autoimmune or other "zebra" type issue yet to be diagnosed. Recently, an endocrinologist that also specializes in Mast Cell Activation Syndrome (a hunch that I had and we...
  29. frozenborderline

    Swelling and itching help, possible infections??

    Below is what I posted in r/askdocs I think it's a good summary of my situation and too tjred to repeat myself much. The things I wonder most about are valley fever and chagas disease ... seems more likely to be fungal or parasitic than bacterial and more likely to be some infection than an...
  30. MariaMagdalena

    Brand New Rash with Petichiae. MCAS?

    Hi Everyone! Please forgive if this has been discussed elsewhere. I'm at the end of my cognitive endurance for the day and can't deal with sorting through threads at the moment. I developed 2 weird skin issues in the last week. This is highly unusual for me, but not unheard of in the long...