mcas

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...

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...

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...

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...

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...

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...

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...

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

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

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...

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...

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...

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...

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

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...

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...

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

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...

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

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...

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...