mcas

i just got a new Bible, i dont know why it must stink that much but it is on ventilation now. what i figured, i got a big iqair health pro 250 air purifier, actually its for my room, but because i ordered new filters and those need to offgas on high ventilation setting i put it into a different...

My partner's MCAS has continued to worsen every day for months now. The symptoms are near constant, and worsen with anything they ingest. We've cut out nearly everything we could think of that could be worsening it, stopped all their vitamins, supplements, even moved house to escape from...

My partner has been having really bad post exertional malaise (writing in full to help with search), but in ways that don't seem to follow their norm. Their energy envelope has been improving, and they can do things now without getting PEM that definitely would have given them PEM a few months...

Just to preface: I'm not looking to start any kind of debate, simply inform people. If, like us, this is NOT the kind of medical support you're looking for, you should know this if you are looking for MCAS support in the UK. I arranged a private appointment with one of the doctors in Tina...

If you read the Reddit long COVID forum r/covidlonghaulers, it is clear that generalised anxiety disorder (GAD) is a common comorbidity in LC. Many regular ME/CFS patients also suffer from GAD. I wonder if the anxiety symptoms experienced by many long COVID and ME/CFS patients might be due to...

We're in a real catch 22 and can't get any medical advice from doctors about this. We think a lot of my partner's recent issues are probably from MCAS, and it's probably being flared up by their amantadine. They have been trying to taper off but because of horrific withdrawal can only tolerate...

i got an new theory, and it has some basis, found in analysing it with ai. my problem is that i cannot do any ascorbic acid, it makes my immune system go haywire. its accumulative and increases over days of using ascorbic acid like products, plants, supplements etc. not so from sodium...

I recently started having pretty big MCAS symptoms. I never knew about MCAS and now realise I have been having some MCAS symptoms most of my life, but way way less. Now it got pretty extreme and hard to handle, is it worse in a crash for you guys? I think I might also crashed. Also it seems...

I care for my partner who is bedbound with ME/LC, dysautonomia and MCAS. They have been in a bad MCAS flare for just over a month, and have been having a new odd symptom in this period that we can't quite identify. In reaction to something, they suddenly become weak, their body goes limp, eyes...

If you have the time and stamina, I highly recommend watching Dr. Galland on YouTube, where he extensively explains how COVID-19 damages organs and tissues, and how ME/CFS differs from it. Long Covid Mechanisms, Spike Protein, Detox, Nattokinase, MCAS, POTS, Autoimmunity, ACE2, Dr Galland

I'm trying to figure out what's making me so ill. I am currently taking Metabolic's Multiple Minerals. Last time I tried them, I started on 5 drops and after a few days started feeling really bad physically and bad brain fog. I wasn't 100% sure it was that (could have been PEM), but it didn't...

Introduction: Also for patients diagnosed with ME/CFS, Fibromyalgia, Lyme, EBV, Morgellons diseases, Asthma, Allergies, MCS, Tinnitus, POTS, Dysautonomia, Ehlers-Danlos Syndrome (EDS), Small Fiber Neuropathy (SNF), Restless Legs Syndrome (RLS), Burning Mouth Syndrome, Panic Attacks, Anxiety...

MCAS (episodes of symptoms of histaminosis/anaphylaxis) activated by Long COVID or MIS-C or by Post-Vax Syndrome: CRITERIA FOR CLINICAL DIAGNOSIS. https://www.researchgate.net/publication/377384635 Also for ME/CFS, Fibromyalgia, MCS, POTS, Dysautonomia, Ehlers-Danlos Syndrome (EDS), Small...

Hi everyone, I have mitochondrial dysnfunction as well mcas, cci, ijv compression, Lyme and severe dysautonomia. Urolithin A was recommended to me for mitochondrial issues, and I saw a paper saying it also boosts collagen production and a posts here or there saying it seemed to help floxed...

Hi All, I have found this super easy to read paper about MCAS treatment, i believe it was shared by a Doctor in US familiar with MCAS and how to treat it. As you go through the pages it actually has alot of natural benifits for a range of other symptoms aswell. Ofcourse our MECFS bodies while...

Hello. I am a FT caregiver for my daughter, who’s in her early 30s and has suffered from ME/CFS for four years (the past two years severe, and the past 9 months extremely severe). She got sick after a virus in 2019 and has been in a gradual decline since. She’s been housebound since the end of...

I do not know what happened however after my decline in health started then I prodce allergies to different drugs , herbals, foods. beta blockers are one of them . I need to use them cuase I got arrythmias mostly tachcarydia however they give itching and red spots. Is it a sign of MCAS? I have...

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...