mcas

Hi all! I’m very confused and hope someone can help me. I really would like to take Quercetin for my MCAS but I also have hydrogen sulfide Sibo which causes sulfur intolerance. There’s conflicting information regarding quercetin becoming metabolite of sulphur in the body. When I message...

Looking for suggestions on what could be causing a recent and sudden new symptom: Aching and burning and sore muscles in my legs? It started with my left knee suddenly giving out while I was walking but it didn't hurt, my knee would just sort of buckle. Then it progressed to that knee getting...

Hi all, my integrative medicine doctor recently did some testing and found out that I have an active case of re-activated EBV. She had me start on a few different supplements for it including Monolaurin (Which I was already taking 3 times per day) Lysine Zinc Des Bio homeopathics Byron...

Full interview with Dr. Tina Peers on a possible cause of Long Covid symptoms.

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...

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...

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

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...

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...

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...

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...

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...

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...

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

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

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...

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...

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...

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...

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...

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...

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...

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

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...

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...

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...

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...

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.

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...

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...