I came across a new BPSM term today - 'neuroplastic' (as in 'MCAS is neuroplastic') - not really a new term, but new in this context. Another way of saying you can think yourself better.

#NEISVoid #MECFS #MCAS #POTS

I am so ambient temperature and barometric pressure sensitive that I'm sitting here with static crawling my skin and every piece of connective tissue throbbing while my body tries to decide if I'm overheating or pushing blood to core and watching my arms and legs start to puff and turn red.

Y'all just don't know this life. #ChronicIllness and #InvisibleIllness and #MCAS just don't convey the reality.

It sucks.

And I can't do a damn thing about it.

MCAD is seriously affecting my life, etc., and it is no fun.

Have a tentative diagnosis of Mast Cell Activation DIsorder (US-ICD10 89.49) from the GP.

And a referral to immunologist far away...

And I am still learning about #MCAD #MCAS and comorbidities with #EDS and #Autism (Isn't there a better word than "comorbidities"? It sounds morbid.)

I am having trouble remembering everything since the first dentist visit and the subsequent mast cell activation. And it turns out that MCA can and usually does affect memory.

Apparently, symptoms and effects are still being discovered.

Mast cells are being implicated in other neurological disorders such as Alzheimers and Lou Gehrig's Disease.

This is making me a bit anxious...

Mein Körper reagiert auf starke Hitze wie eure auf einen Bienenstich: Histaminausschüttung.
Non stop.
Macht das Spaß.

#MCAS

I love my barber. He’s nice, fast, and has good music on. And he’s patient with my terrible mix of Spanish, Italian, and Portuguese. But today my lack of language skill failed me quite impressively when he went for a close shave at my neck and it hurt. He was apologetic, I explained I had sensitive skin, all good. Then he very helpfully put some lotion on my neck. I did not have the words to stop him and resigned myself to my fate. Luckily, he’s literally just around the corner so I booked it home after my appointment and straight into the shower because the back of my neck felt like it was on fire. 😆

“Sensitive skin” is probably just another way to say my mast cells are having a bit of a freakout. #MCAS

All the #MCAS crew out there, you're going to love this gem 💎, from Sheffield NHS immunology department.

Apparently, when asked about my fatigue symptoms in relation to foods which have an onset of 2-24 hours, they replied to my doctor to say, allergy reactions are immediate, therefore delayed onset is not allergy. Therefore immunology doesn't want this patient and flipped me the bird.

Who would like to join me in presenting them with a list of delayed allergy reactions? I'll start with eczema. Not to mention those ones that go on for weeks after stopping the allergen - sorbitol for me at last record symptoms continued for 10 days after stopping the source food.

· Two recent studies added more evidence that diabetes drug #Metformin can reduce risk of #LongCOVID
[https://link.springer.com/article/10.1007/s40121-026-01362-z | https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciag335/8702406]
· Long COVID disproportionately impacts Indigenous people in California
[https://www.researchsquare.com/article/rs-9452333/v1]
· 2020 diagnostic consensus on #MCAS (which can get triggered by #COVID) enabled diagnosis & improved treatment of the condition
[https://www.degruyterbrill.com/document/doi/10.1515/dx-2026-0016/html]

https://thesicktimes.org/2026/06/16/research-updates-june-16/

#ResearchUpdates #TheSickTimes

Prior SGLT2 Inhibitor and Metformin Use and Risk of Long COVID in Type 2 Diabetes: A Nationwide Population-Based Cohort Study - Infectious Diseases and Therapy

Introduction Patients with type 2 diabetes mellitus (T2DM) are at increased risk of post-acute sequelae after COVID-19 (PASC). Sodium-glucose cotransporter-2 inhibitors (SGLT2i) and metformin may have systemic benefits beyond glycemic control. We evaluated the impact of prior SGLT2i and metformin use on the risk of post-acute COVID-19 complications. Methods We conducted a retrospective, population-based cohort study using national healthcare claims databases, from July 1, 2021 to February 28, 2023. Cohorts were stratified based on SGLT2i or metformin, against patients had not received these medications. Overlap weighting was applied to adjust for baseline differences in demographics, vaccination status, comorbidities, and prior healthcare utilization. Competing-risks regression models were used to assess differences in the risk of long-COVID outcomes between 31 and 300 days post-infection. Results Among 71,698 patients with T2DM, 22,501 (31.4%) had prior SGLT2i use, and 66,792 (93.1%) had prior metformin use. Compared with non-SGLT2i users, patients treated with SGLT2i had a significantly lower risk of neurological sequelae (aHR = 0.60 [0.45–0.81]), particularly memory and cognitive impairment (aHR = 0.63 [0.41–0.98]). SGLT2i was also associated with a reduced risk of post-acute symptoms (aHR = 0.87 [0.77–0.99]). Metformin use was associated with significantly lower risk of composite post-acute outcomes (aHR = 0.80 [0.68–0.96]) and post-acute symptoms (aHR = 0.77 [0.63–0.93]). Amongst patients on metformin, the addition of SGLT2i further lowered the risk of neurological sequelae (aHR = 0.81 [0.71–0.93]) and composite symptoms (aHR 0.87 [0.76–0.99]). Conclusion SGLT2i and metformin use were associated with a lower risk of PASC and post-acute symptoms. There may be additional protective benefits when both agents are used concurrently.

SpringerLink

Kurzes Update.

Geht mir leider wieder schlechter. Kann nur ca. 1x/Woche das Haus mit Hilfe verlassen und liege ca. 20-22h/Tag. Der Abwärtstrend begann bereits im Februar.

Das Foto ist von vorgestern, da konnte ich mich mal schminken.

Ich grüße alle, die mich noch lesen!

🫶

#MEcfs #POTS #MCAS #CCI

Edit; Our newer theory that our symptoms is in part a form of partial seizures caused by histamine reactions (commented on it in a reply), at least feels accurate enough for urgency. This seems to be getting worse. including a neurological scar in our brain we can percieve, as a light headache-line, that we'd previously thought was from trauma. we think it may be getting larger with each episode. (it consists of two headache 'lines' in our brain- previously it was only one line afaik- and the area in between the lines, while thin, feels. 'empty'..)

if anyone has resources for *covid concious* partial siezure support irl local to brooklyn ny, or at least regular online check ins from someone knowledgable, we'd immensly, immensly appreciate it.
We're looking into doctors but don't know how long it will take to see them, if we will before further harm to or by us. We'd get a support animal but can't in this apartment.

please help if you can, thank you.

original message below;

.

We are a plural collective with a form of mast cell disorder. We know this due to antihistimine medication and diet being enough to seriously reduce our symptoms, however we have yet to fully adress and stabilize them.

One of those symptoms is a form that no individual we've met or heard of, so far, has any direct knowledge of. We are seeking information on it, both so we can better adress it, and so we can better discuss it with others and ourselves.

When we are having a histamine reaction, or histamines are too built up in our body. Some combination of our symptoms results in heightened fear, as we understand is typical for epinephrine reactions.

For us, uniquely. This also comes with extremely heightened paranoia, sensitivity, and defensiveness. Which is what we cannot fully understand. Even if we know it might be coming, and even if we prepare for it ahead of time, we are not sure what if anything we can do to prevent us from causing harm as result of this. (Beyond extreme over-compensation like 24/7 psychiatric drugs, even when not having a reaction)

This state of mind seems to sneak up on us and cause us to act out, over-reacting, toward percieved threats (real and not) before we can stop it. Before we can calm ourselves down enough to be concious of our state of being.
It is extremely difficult for us to differentiate this state from legitimate c-PTSD panic attacks and anger, even to the point of not being sure if we've ever had the latter.
In theory someone living with us should be able to spot it, or maybe even a support animal. But we cannot obtain either in our current living situation.

We have met and heard from others with mast cell disorders who say a panic attack kind of state is a common reaction to histamines for people with them.
But none have recognized our extreme paranoia- the often seemingly irresistible compulsion, to falsly see someone/thing else as the cause of the entire reaction. Which always ends when we remove enough histamines (via diet and medication).

Let alone been able to advise us on how to handle our emotional reaction to this in the moment and after, or how to discuss this with others.

So what is this? Can anyone please help us understand this?

Thank you!

#MutualAidRequest
#MutualAid
#MCAS
#MCAD
#Immunology
#Neurology

@QuyetPawz @wrzky
@posts @[email protected] @mutualaid @MutualAidNet @mutualaid @MutualAidVisibility
@mutual_aid @[email protected]

“Ok body the specialist diagnosed me with a new chronic infection that’s been raging and misdiagnosed for years, let’s get these treatments started!”

#MCAS: I hear you but I’m going to respond with severe contact dermatitis because what if YOU are the chronic infection trying to fool me?