1. frozenborderline

    My story of getting ill told in podcast form

    Listen to Origin Story Pt. 1 by Headless Youth Podcast on #SoundCloud
  2. 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...
  3. 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...
  4. 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
  5. 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...
  6. frozenborderline

    Critiques of common conceptions of MCAS
  7. 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...
  8. 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...
  9. 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 From what I understand, the CU index is done for patients with chronic...
  10. frozenborderline

    Outdoor toxins of particular relevance to mold illness patients 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.
  11. 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...
  12. 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...
  13. 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...
  14. nyanko_the_sane

    Connecting the Dots with EDS in Managing Pain w/Dr. Pradeep Chopra

    These Posts Have Been Moved from: Connecting the Dots with EDS in Managing Pain w/Dr. Pradeep Chopra Not sure how this great webinar got past us, but I am posting it here...
  15. Galixie

    Just Dermatographism or MCAS?

    A couple of weeks ago, the back of my shoulders started feeling itchy and tight. The itchiness progressed to my neck, chest, face, arms, and legs over the next couple of days. The worst day also included a bad sinus headache and probably the worst heartburn I've ever had. (It was so painful I...
  16. M

    MCAS in Portugal

    Here is Dra. Margarida Lima from the public hospital in Porto speaking about MCAS. She is doing a lot to raise awareness in Portugal, and has access to run fairly in depth tests that are analyzed in Porto, and also sent to a specialist MCAS lab in Spain. It’s in Portuguese...