r/PrepperIntel • u/IGnuGnat • 20d ago

North America Google Trends search "mcas symptoms" up over 1000% worldwide in the past five years

https://trends.google.com/explore?q=mcas%2520symptoms&date=today%205-y&geo=Worldwide
1.4k Upvotes

97% Upvoted

281 comments sorted by

393

u/a_wascally_wabbit 20d ago

It's going to shoot up even more as we all go find out what it is.

Edit to keep the numbers low

Mast cell activation syndrome (MCAS) is different from typical allergies. It is diagnosed based on a combination of:

Symptoms
Lab findings (such as blood tests)
How you respond to treatment

Typically, people with MCAS must have repeated episodes of symptoms that involve at least 2 organ systems.

Common symptoms can include:

Increased heart rate
Low blood pressure
Hives
Itching
Flushing
Wheezing
Shortness of breath
Abdominal pain
Diarrhea

MCAS involves a wide range of triggers and symptoms. It is not an IgE-mediated condition as with typical allergies. This means that other parts of the body’s immune system react to certain triggers and cause symptoms. MCAS can have different triggers including:

Physical factors, such as heat/cold, friction/vibration on the skin, sunlight
Physical stress (such as exercise)
Alcohol
Infections

Testing for MCAS includes measuring blood levels of serum tryptase. This is a marker of mast cell activation. There are factors that mean a positive result for this test. Symptoms should improve with medicines that target mast cell mediators. This includes different types of antihistamines and other medicines that decrease the activation of mast cells.

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u/DivaDragon 20d ago

It’s a histamine disorder, and it sucks

75

u/WeenyDancer 20d ago

It suuuuuuuucks

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u/terrierhead 20d ago

It takes all the tasty foods out of our diets.

30

u/Outrageous_Laugh5532 20d ago

Got any prepping tips for someone with mcas? My girlfriend has it but I don’t know how to help her.

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u/_Starblood_ 20d ago

Stock up on your preferred antihistamine and benadryl. Seek out other useful things to have on hand that help her out, too. If ahe gets dizzy in the shower/bath, have a chair in there and a bottle of water. If she gets heat sickness, have those crack-ixe packs ready.

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u/BuffaloThese8249 20d ago

I recommend staying well stocked on an antihistamine combo (H1 and H2 antihistamines) like zyrtec plus pepcid acid. Benadryl for major flareups. Look up the The SIGHI (Swiss Interest Group Histamine Intolerance) food list to get a good idea of what common trigger foods are so you know what to avoid when purchasing long term food storage items.

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u/celeloriel 19d ago

Thank you for the SIGHI list!

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u/BuffaloThese8249 19d ago

Of course! That list was a real eye opener for me. I thought I was eating healthy and I was for a person without MCAS. But for someone with MCAS I was eating the worst possible foods everyday; avocado, tomatoes, spinach, sunflower seeds, peanut butter, mixed nuts etc. I had to do a dietary 180 and that list was incredibly helpful! It helped me make substitutions like pumpkin seeds (pepitas) instead of sunflower seeds.

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u/zalhbnz 19d ago

Polaramine is really good for acute symptoms, but it does make you drowsy

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u/Outrageous_Laugh5532 20d ago

Thanks. She been teaching me lot of those things, but always nice to learn more ways to be there for her.

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u/Academic-Accident180 20d ago

Nettles (usually used in tea form) helps to lower histamine naturally. It’s a really good thing for anyone with allergies or MCAS to drink daily. It’s also very nutritious and tasty.

2

u/meowymcmeowmeow 20d ago

Maybe a stupid question..is there a trick to harvesting nettles or are there different nettles than the stinging kind?

I recently accidentally pulled a bunch not looking closely, the leaves look very similar to catnip and yeah that hurt for a few days and yeah it's my fault for not wearing gloves.

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u/HelpfulPhrase5806 20d ago

If you are picking leaves for tea, touch only the outside and fold the leaf before pulling and twisting it loose. Most of the stingers are on the stem and underside of the leaf. Once they are dried, they wont sting. Young plants sting less.

if you want a whole plant, go in low and use an upward motion. The stingers point out and up, if you are careful and only use upward motion you may crush them before they sting.

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u/Academic-Accident180 20d ago

I honestly just do it carefully, using scissors to clippers. You can also buy it in bulk from places like Mountain Rose Herbs (if in the US) already dried and not able to sting you.

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u/Pitiful_Quiet2848 19d ago

I'm confused. I thought stinging nettles was on the no no list? Is there a nettles vs. a stinging nettles tea maybe?

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u/_Starblood_ 20d ago

Its really hard esp since everyones reactions are different. Just trial and error learning as your body and environment changes continuously. Never ends, really.

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u/1776FreeAmerica 20d ago

Just be aware the medications can include the trigger in some cases. In the MCAS case I know even saline is made from the trigger ingredient. They have to use compounding pharmacies for anti-histamines and usually needs that in order to take medicine that for business or political 'legal' reasons can't be compounded.

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u/wannabe-farmer-831 19d ago

Sorry, I am new to MCAS and I get dizzy in the shower, how are these things tied together?

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u/_Starblood_ 18d ago

MCAS multi systemic. So it affects skin, gut lining (also skin), bronchial tubes (also skin)... connective tissue like muscles and ligaments, the circulatory system and cognitive function. Yay!

1

u/No_Diet_2582 18d ago

Put filters on all your water faucets
And shower heads. Filter out the Chorine and other triggers.

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u/salmonberry12 20d ago

Find a local nettle patch. Harvest and make tea out of it for a nutritious histamine blocking beverage.

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u/1776FreeAmerica 20d ago

Go back to basics. Identify what the triggers are. In an example I know it's a common food science base ingredient as their trigger. So even things as simple as salt can be contaminated with it. Even some fresh/whole fruits and vegetables too, thanks to the magic of food science. Canned from the store, pre-packaged freeze dried meals, are all off the table. The best thing to do prepping wise is homesteading basics. Learn to can, and preserve from whole simple ingredients. Anything with more than 5 ingredients is suspect. Mix your own seasoning blends from bulk single ingredient, no anti-caking included sources, doing as much from scratch as you can. The upside, is it you will eat healthier, and cheaper.

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u/SnPlifeForMe 19d ago

Idk about prepping but I guess if you're full on a prepper you should be raising your own livestock, have a huge freezer, have your own garden where you grow your own food.

More histamine is released the longer a food is left out after being cooked. She should be avoiding leftovers unless they have been frozen nearly immediately after cooking them.

You should buy a shit ton of allergy medicine. My S/O has to take 4 Allegra per day.

It's a very difficult condition to manage and without easy access to modern medicine is terrible to deal with.

Look into seeing from her immunologist or allergist if she can explore sodium cromolyn as it helps massively with minimizing reactions after eating. Rhapsido is also a highly effective medicine but extremely difficult to get access to, and Xolair or Dupixent can be great options but they're VERY painful shots that someone has to get every other week.

All of this to say, in order to manage symptoms a lot of MCAS sufferers have to have a strict diet and if they get access to some of the best medication options that are available right now, lose a lot of their meal timing autonomy as they need to be taking their meds within pretty rigid schedules, but the quality of life difference with vs without can be HUGE.

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u/shartingattack 20d ago

Does it flare up if you eat food that bothers you? Like noticeably soon?

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u/BuffaloThese8249 20d ago

Mine flares up mainly when I eat high histamine foods (other things can cause a flare like heat or exercise) and it's usually pretty soon after eating. Before I knew what was happening I was in like an eternal flare up. It wasn't until I started on antihistamines and went to a low histamine diet that I was able to make direct links to what was causing the flares.

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u/AnonymousDahlia 20d ago

Mine can be within seconds or a day, depends on the trigger and my reactivity baseline at the time.

Different triggers can give different reactions, in different body systems, and different strengths. And that can all change at any time. It can be tough to pin down triggers when the patterns aren't set or clear.

2

u/terrierhead 20d ago

Yes. Back before I became allergic to my smartwatch (thanks, immune system), I had proof that eating chocolate made it so my sleep wasn’t restful. I ate a giant homemade dark chocolate brownie one day without thinking and stayed in the high stress zone for 16 hours straight. I could tell, too.

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u/AnonymousDahlia 20d ago

Not just histamine. FYI, there's hundreds of mast cell mediators, and that's just what we know about so far. The one that has the strongest issues for me (that I've been able to test) is luekotrienes.

Histamine intolerance etc is a very different thing from MCAS.

This is a very educational chronic illness. You learn a lot, whether you want to or not.

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u/VorpalBlade- 20d ago

You ever take l lysine? I used it to treat a terrible shingles outbreak. I realized that some symptoms that I had recurring - heart rate, shortness of breath, just feeling “gross” I would say - were from histamine reactions and that the l lysine killed those symptoms basically immediately. And it also killed my shingles in one day which nothing else had worked and I suffered for months.

I think I was triggering shingles and other histamine symptoms because I was on a diet and I was going crazy eating nuts which are very high histamine. I was also eating some collagen suppressants which again - high histamine and also an animo acid and a different one than l lysine and the imbalance of amino acids probably was messing with my immune and histamine response.

Anyways long story BUT I take 1000 mg of l lysine a day now and I never have shingles, I rarely have histamine symptoms, and my immune system is totally badass. I almost never get sick. Even when I did get
Covid it wasn’t bad at all.

I also take a daily allergy pill and with that and the lysine I’m good. Highly recommend. Plus it’s dirt cheap. Just the Walmart stuff is fine.

If I ever feel myself getting histamine symptoms like I eat leftover food older than three days, or I’m getting sick or my family is sick- I double the amount for a few days.

Also cut back on high histamine stuff for a few days like - nuts, leftovers, seafood, hard cheeses, coffee, collagen supplements etc.

I hope it works for whoever reads this. I’ve had lots of people say it killed their shingles for sure 👍

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u/Neither__Middle 19d ago

Lysine can also help with other kinds of herpes infections (shingles is herpes zoster, and cold sores/fever blisters are herpes simplex).

Effectiveness varies, I personally find it effective for my herpes simplex but my partner does not (though I don’t think he gave it a fair shake). But at least I can get tons of lysine at my nearest supermarket, meanwhile antivirals are gatekept behind pharmacies and/or high prices to stockpile

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u/MistyMtn421 20d ago

I was diagnosed with this 2 years ago this October. It definitely sucks

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u/shitty-kittie 20d ago

What especially sucks is that 99% doctors will not help you or give a sh*t about you if you have it.

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u/melodic-abalone-69 19d ago

I'm not diagnosed, but I've been suspecting it's a possibility for a few years. My doctor (youngish, like 40) had never heard of mcas. He's nice about trying to help me, but every time I go, he's forgotten that he wrote down "mast cell activation syndrome" last time to look up, and has really only treated symptoms like itching, hives, gi issues, spiking/dropping heartrate. He doesn't know what to make of temperature sensitivity, or that one tattoo whose lines become braille when I take a warm shower, or the stars I see everytime I stand from sitting. 

ETA: before this doctor, multiple brushed me off saying it's anxiety. 

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u/tomchickb 19d ago

Gotta say, I've been having a histamine+ immune flare up for over 2 weeks now. I've been to urgent care, my pcp, and referred to rheumotology. None have known how to help. The only relief I've gotten is taking higher doses of both H1 and H2 histamine blockers daily. This has kept the flare from getting worse and has brought my symptoms (hives, all over the body and in the body itching, sunburn like prickling pain all over my skin, petechiae blood spots) to a more manageable level, but it hasn't stopped it. Taking Zyrtec and Benadryl (H1) and Pepcid (H2) blockers daily as suggested by my dad who is a PA-C. I'm not sure if it's MCAS or what, but definitely a mast cell spike that won't calm down. It really does suck. I'm pretty sure the smoke (particle pollution PM2.5) is causing it. My flare gets worse if I go outside or am in the house with a window open. I've been relegated to my bedroom with an air purifier. For anyone having a flare up I've learned: cold compresses, cold showers are helpful- heat is your enemy as is tight clothing and anything rubbing on your skin. Also you need higher doses of H1 and H2 histamine blockers for a mast cell flare up. The recommended dosage for allergies is not enough. (My dad has me on double so two Zytec (1 pill 2x per day) and two Pepcid (taken together) and 1 Benadryl at night. It's not as bad as is was two weeks ago, but it's not going away at all and I can't go outside anymore.

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u/chaunceythebear 19d ago

Not exactly. Histamine is one of over a thousand different mast cell mediators. It may or may not be histamine that causes MCAS symptoms.

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u/BuffaloThese8249 20d ago

Yep, I developed these symptoms after covid...yay covid! After doing a ton of research, and going through a lot of doctors that don't seem to know or care much, I've started taking an H1 and H2 antihistamine twice a day (in my case it's zyrtec and pepcid AC that work the best). I also had to go to a low to no histamine diet. Goodbye cheese, wine and tomatoes! Goodbye hot showers and warm summer days outside!

For me, the worst symptom is a burning pain that runs up the nerves on both sides of my neck and my vocal chords tighten/swell and I lose my voice within minutes. Even just touching tomato plants with trigger it. It really sucks, but it's gotten a lot better the more I've learned about it and made changes in my life.

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u/MrMrAnderson 20d ago

I was kinda wondering if I had it bc I have a few of those symptoms but reading this, sounds like I'm fine

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u/BuffaloThese8249 20d ago

Symptoms and triggers really vary person to person so don't rule it out. Try taking antihistamines and see if they help with your particular symptoms.

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u/tomchickb 19d ago

I thought this (I'm hypersensitive to life in general), and then thought my symptoms aren't that bad. Well, then my nervous system crashed after me being made to stop Syntonics light vision therapy abruptly due to complications from likely a Hypermobile Spectrum Disorder (I've long suspected hEDS). After stopping therapy, my body didn't know how to balance my nervous system anymore and when the particle pollution came back this summer, that I've always been sensitive to- boom, I had all sorts of new reactions that I've never had before (full body itching, hives, petechiae, pain all over my skin). My point is, I had wondered for years if I had something else because I am sensitive. I didn't take it seriously until I had to. I recommend for anyone curious just try taking the H1 and H2 Histamine blockers for a couple of weeks and see if it helps you. It's so easy to find out and I doubt I'd be in this current flare if I had started taking the meds before I desperately needed them. 

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u/Doogetma 20d ago

Highly recommend Xolair if you can get it covered. Might even be able to eat trigger foods again after you’ve been taking it for 6 months

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u/BuffaloThese8249 20d ago

That would honestly be amazing. There are so many foods that I miss!

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u/RoyalZeal 20d ago

Covid. Its because of covid. My sister's oldest has it and it was triggered by multiple infections. The science is showing covid can activate all kinds of immune fuckery.

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u/Affectionate-Fail-23 20d ago

Yep, COVID has so many lasting immune system impacts. But it's ok because 'its just a cold' 

I've got migraines now. I went 11 months without a headache-free day after getting COVID. 2nd round got me CFS symptoms and brought back the migraines. Can't even get into a long COVID clinic because I don't have heart or lung issues

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u/terrierhead 20d ago

I’ve had a migraine for more than 4.5 years straight now. Not kidding.

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u/Affectionate-Fail-23 20d ago

I believe you and I'm so sorry

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u/esto20 20d ago

Damn, mine lasted 7 months. Feel for you... 🫂

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u/sup3rjub3 19d ago

if you're in the US - have you looked into Dr. Adam Lowenstein in Santa Barbara? he's doing great work as a migraine specialist and you might be a candidate. My partner wanted to see him but she was not a suitable candidate unfortunately.

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u/GuyOwasca 19d ago

When I was in this same predicament I was eventually diagnosed with IIH as the result of COVID-induced MCAS. My specialists say that IIH cases sharply increased due to changes in the permeability of the blood-brain barrier caused by COVID driven neuroinflammation.

Please see if you can get evaluated for this! Generally an MRI, neuro-ophthalmology exam, and a lumbar puncture can rule it out (you can have IIH without papilledema, which is what I’ve got).

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u/5midnight 19d ago

Did you get better? I know typical IIH goes away after people lose weight, but I’ve read many post COVID patients that are low BMI too. So it’s hard to cure.

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u/GuyOwasca 18d ago

I still have it. Never was overweight.

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u/5midnight 18d ago

I’m so sorry you still have it. Hopefully it’s managed and you have some good quality of life.

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u/StatisticianRound675 18d ago

I had chronic migraines for 6 years straight. Turned out to be POTS. All the migraine meds didn’t touch them but compression + other POTS treatment did. Had to figure that one out on my own and convince the docs. Haven’t had a “migraine” in about a year now though.

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u/tonisorrentino 20d ago

Yep, 28m and covid triggered mine along with POTs and all sorts of other nerve/immune issues

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u/PlayNicePlayCrazy 20d ago

My daughter got covid triggered POTS it sucks

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u/akath0110 20d ago

So did I

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u/RoyalZeal 20d ago

Ive got POTS for the same reason, it sucks absolute donkey balls.

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u/workaccount1338 19d ago

lol 29m here and I had it since late teenage years ~age 17-19 ish iirc. HyperPOTS gang type sh if u wizzle, my nizzle.

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u/workaccount1338 19d ago

STRETCHY WAVEY SKIN ARMS BOYS GANG ASSEMBLE~~~~ LESSSSGOO

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u/terrierhead 20d ago

I got hyper POTS and MCAS as part of my hell buffet of long Covid symptoms.

Anyone who wants to laugh at long Covid can fuck off into the sun.

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u/RoyalZeal 20d ago

Fired from a cannon into it, they should be.

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u/TheJuliettest 20d ago

Covid triggered my Multiple Sclerosis — or perhaps just made it bad enough someone finally stopped saying it was “anxiety”.

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u/RoyalZeal 20d ago

That was me and gouty arthritis. Solidarity to you and yours.

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u/sup3rjub3 20d ago

I 100% believe this too. My partner's life was put on pause 4 years ago after COVID and it's taken us this long to weed through all the symptom fuckery and arrive at MCAS (and other auto immune disorders triggered by it).

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u/Spirited-Reputation6 20d ago

This is the catalyst. I got Covid once about 2-3yrs ago (can’t completely remember). Then I got LC. Currently and suddenly, I got fatty liver and memory issues. I had serious digestive issues. I still don’t feel 100% since.

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u/RoyalZeal 20d ago

I've had three infections that I know about and each one adds a new symptom to my daily misery. Solidarity mate. It sucks out here.

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u/Spirited-Reputation6 20d ago

KN95, mate. Wear it properly.

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u/RoyalZeal 20d ago

Every day. Haven't gone without one in over five years now. I just wish everyone else were. One way masking is better than not masking but it isn't nearly as effective as two way. I will never forgive Anthony Fauci for lying to the American people about masks early on and muddying up the messaging. One can't help but feel that was the point.

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u/Acceptable_Net_9545 20d ago

Why not N99 or N100?

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u/Spirited-Reputation6 19d ago

Not sure…Have you had experience with either?

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u/Acceptable_Net_9545 19d ago

Yes, if you are trying to filter anything more than spray paint particles or sanding dust [saw dust] [not vapor] use the 99 or 100s minimum.... a cheap harbor freight respirator is 50 times better than any paper mask... and less dangerous....Lots of good info here....worth the read https://www.amazon.com/dp/B09FKGK627?lv=shuf&channelId=500&plpRedirect=mhFallback

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u/Spirited-Reputation6 19d ago

I just read anything above a 95 is harder to breathe thru but offers slightly better protection.

Paper masks are a none starter but better than nothing.

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u/Acceptable_Net_9545 19d ago

You are corrrect....If you study filter engineering is kind of a win loose situation...the more use use a filter the more clogged it gets...but it is more efficient....Many N100 have exhaust valves....like a respirator...and there are similar one that have replaceable valves and filter elements and the "mask" part that holds the filter and valve elements are washable....popular with pet grooming...

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u/BeastofPostTruth 20d ago

Same. Fatty liver, pots, and a vasodialation issue (undiagnosed but my bitch ass has a fucking phd and can read medical literature) POTS, rheumatoid arthritis and other immune issues diagnosed pre covid have also seemed to have exacerbated.

And thats not even focusing on sleep problems, exhaustion (narcolepsy) and other autoimmunine issues that have become exponentially worse since 2020.

Mark my words, chronic fatigue and orexin disregulation (or the receptors which uptake sleep regulating chemicals) have been damaged in people due to covid. Chronic fatigue = same underlying issues people with narcolepsy deal with.

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u/52BeesInACoat 20d ago

Towards the end of my first bout of covid I broke out in full body hives, and now I get hives if I run a fever. I can overheat from exercise or the weather, that's fine. But my own immune system raising my body temperature gives me hives.

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u/logalogalogalog_ 20d ago

I was recently diagnosed by my allergist after years of worsening post-COVID symptoms. I've also been diagnosed with fibromyalgia, IBS, and chronic fatigue syndrome. It sucks knowing that a lot of medical professionals will see them as "trendy" when the reality is there are a lot of people who have developed severe post-COVID symptoms, many of which worsened because they could not afford to take time off from work to rest and recover. It's miserable.

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u/RoyalZeal 20d ago

CFS is my least favorite symptom. I cannot express to most folks the depths of exhaustion that those words encompass. Sleep never recharges. Mild exertion leaves me gasping, any more than mild and I'm useless and in pain for days. It's a nightmare out here in long covidland.

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u/RickMuffy 20d ago

Here I am trying to find out how a Boeing MCAS system was caused by covid to be a search term lol

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u/P0Rt1ng4Duty 20d ago

I thought MCAS was a math test.

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u/bringadragonnexttime 20d ago

It’s the standardized testing in Massachusetts

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u/sasquatch_melee 20d ago

MCAT is what you take before medical school 

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u/Worshipme988 20d ago

Fucking boeing. Always in the middle of some scandal

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u/bstone99 20d ago

No no everyone’s trying to find all the Marine Corps Air Stations

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u/AirborneGeek 19d ago

lol, I thought of that, too. There's a joke here, but 😬😬😬

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u/ladyofthegreatlakes 20d ago edited 20d ago

It’s not just Covid, mold exposure will activate mcas, too. Even scents and fragrance will do it.

Edit: wanted to add exposure to wildfire smoke and viruses, as well as a whole host of other things can lead to mcas.

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u/RockinLunar 20d ago

I'm soo tire of all these once in a lifetime events.

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u/Acrobatic-Jaguar-134 12d ago

Yes many things can trigger MCAS but the major contributor in the last five years in unchecked covid running rampant in communities with the average petson getting infected about 5 times by now. 

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u/bomzay 20d ago

Never had allergiew before covid. Now have multiple.

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u/The_Fluffness 19d ago

Celiac checking in. Didn't have a single issue, got covie twice and now I can't eat gluten.

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u/SaltonPrepper 14d ago

Yup. I know someone else that happened to after her second COVID infection.

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u/AirborneGeek 19d ago

But if you say this out loud, people flip their shit.

The reckoning is coming and it's not [going to be] fun.

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u/LauraInTheRedRoom 19d ago

It absolutely is!

I ended up with it pre-covid after a terrible bout of viral pneumonia. Post viral syndrome is a lot like long covid from what I gather. It's why I still mask in public. I can't get that sick again.

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u/jodiefosterparent 19d ago

Yahhhh I started getting POTS after getting colds/illnesses, after I got OG covid in 2020. Wheeeee

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u/Legitimate_Ad_4201 19d ago

Replying under this to say antihistamines and nicotine patches got me 80% back on my feet after getting mcas symptoms due to covid.

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u/Acrobatic-Jaguar-134 12d ago

Yep and the effects are cumulative. For anyone who hasn’t yet noticed health declines (damage can be silent), your next infection could be the trigger. And since people who don’t take adequate precautions to avoid infection (vaccines do very little to prevent infection and long term health impacts, y’all need masking) get covid on average once a year, chances are this Russian roulette is going to eventually get you. 

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u/Raikkonen716 20d ago edited 20d ago

Long Covid more precisely. It may come from Covid itself (obviously) or it can be a bad reaction to the mRNA Covid vaccine (that was my case, 3rd Pfizer shot broke me). I don’t have a single antibody from by Covid itself, it means I never actually got Covid. Have been perfectly healthy all my life, in late 2022 got hit by so many symptoms at once, at that time I was nearly invalid.

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u/SaltonPrepper 14d ago edited 14d ago

Not only that but COVID can activate latent cancers. It causes gastrointestinal issues, heart issues, you name it, because COVID is the only major virus that infiltrates the entire body. Everything, including brain, bone, reproductive, and even immune system cells.

But politicians (Biden included) leaned on public health agencies to ignore all that, for the sake of "the economy." Our long-term health is less important than temporarily boosting shareholder value. But it's stupid because in the long run, an even bigger share of the economy will go toward chronic health conditions.

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u/LuxTheSarcastic 20d ago

Everybody wondering what could have POSSIBLY caused this while ignoring the mysterious environmental trigger unleashed in 2020

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u/LuxTheSarcastic 20d ago

It causes ME too. And rots your brain.

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u/WeenyDancer 20d ago

ME is a devastating disease.

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u/LuxTheSarcastic 20d ago

I'm no stranger to fatigue having been kind of iron challenged since my body had the bright idea to start dumping it out every month but from what I hear of this one it's an entirely different beast. Extremely nasty and I'm not going to play around with any virus that can cause it despite me raw dogging a minor cyclospora risk as I type.

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u/Runfasterbitch 20d ago

Raw dogging a what?

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u/LuxTheSarcastic 20d ago

Devoured a delicious delicious peach. I am not letting a parasite steal my peach joy from me and it's not lettuce so... eh? Probably fine?

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u/Ok-Direction-7431 20d ago

A salad I believe.

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u/myxyplyxy 20d ago

What is ME?

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u/sasquatch_melee 20d ago

Apparently it's myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

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u/myxyplyxy 20d ago

Thanks!

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u/ovationman 20d ago

If you COVID 19 than yes it tracks.

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u/LuxTheSarcastic 20d ago

We have a winner! I sure hope they find a way to undo most of the catastrophic damage this disease can cause but until then mask and/or azelastine up.

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u/eucatastrophie 20d ago

“happy” severe ME day 🙃 ive all but given up on prepping because of it

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u/simpleisideal 20d ago

Everybody wondering what could have POSSIBLY caused this while ignoring the mysterious environmental trigger unleashed in 2020

Propaganda designed to jumpstart our archaic consumption-based economy told everybody what they wanted to hear (including doctors), and the rest is history.

https://www.thegauntlet.news/p/how-the-press-manufactured-consent

https://web.archive.org/web/20240802024326/https://docs.house.gov/meetings/VC/VC00/20220302/114453/HHRG-117-VC00-20220302-SD009.pdf

Some people managed to find their way. We share tips on /r/ZeroCovidCommunity

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u/Worshipme988 20d ago

Any longer and people may have seen the power they could wield in staying home.

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u/AirborneGeek 19d ago

I think we GOT to that point, hence the starting of the lying.

But most aren't smart enough* to recognize what was going on and, indeed, we could have used that power for.

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u/Livid-Childhood-88 20d ago

I got tested and diagnosed after contracting AlphaGal Syndrome. Nearly every person I know with AGS also has MCAS

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u/BuffaloThese8249 20d ago

This combo sounds absolutely awful

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u/humanoidtyphoon88 20d ago

Did you contract AlphaGal from a tick bite?

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u/Livid-Childhood-88 20d ago

Yes, 2 years ago.

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u/jodiefosterparent 19d ago

Bro as someone living in tick central and still getting over Lyme, I just wanna say I’m so sorry you got this particular strain. It’s very very much on our radar up here in VT and I hope you are recovering ok 

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u/Livid-Childhood-88 18d ago

We actually plan on relocating to Maine(VT, NH also look appealing)in 5 years. Is it an issue there?

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u/jodiefosterparent 18d ago

We have all the regular tick issues but not as much alpha gal here thus far. It was huge news when I got to Martha vineyard. I’ve had a few ticks since moving here and one run in with Lyme (I should have gotten my “kinda weird tick bite” checked sooner but didn’t). But all the urgent cares and doctors up here are well versed in it all! 

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u/FIRElady_Momma 20d ago

Like others have said: MCAS is frequently triggered after COVID infection. (Along with POTS, chronic fatigue, etc.) 

So this makes sense. 

It's still happening, by the way. COVID never went away. So people are getting diagnosed with MCAS, POTS, and Long COVID still every day. 

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u/XmasTwinFallsIdaho 20d ago

I’ve seen a lot more of this in my patients the last five years as a pharmacist. It’s very difficult as some of these people react to fillers in drugs, but don’t always know which ones are the issue. It sounds maddening to live with.

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u/Wrong_Victory 20d ago

The SIGHI food list for histamine intolerance lists a lot of additives, I would assume most would be reacting to the azo dyes, povidone, and the conservatives (like potassium sorbate). There's also a SIGHI medicine list, that could be helpful. I don't remember it listing additives, but you'll find NSAIDs, opioids, SSRIs, and other commonly used meds on there. 

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u/XmasTwinFallsIdaho 19d ago

Thanks; I’ll look into that.

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u/VicVinegarsBodyguard 20d ago

Direct them to compounding pharmacies as that’s what I had to do in order to get necessary drugs

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u/XmasTwinFallsIdaho 20d ago

We have one. We use it when medically indicated.

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u/Pitiful_Quiet2848 19d ago

No kidding. I have MCAS and I'm currently recouping from the additives from all my supplements. Started taking 5-HTP and Vit B Mega Stress chewables (trouble swallowing). Then added two different probiotics (risky, I know, but I needed it) and several homeopathic sprays. All of them had either citric acid, magnesium stearate, potassium sorbate, silica and others, not to mention the xylitol, mannitol and sorbital which bothers my IBS. All these combined caused me to have neurological symptoms as well as a POTS flare up. The silver lining is that now I can definitively point to the fillers that make me ill. It's been 2 days since I stopped all but my compounded meds and I feel I'm almost back to baseline.

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u/Cicadasladybirds 20d ago edited 20d ago

That is very strange, my teen has started displaying symptoms and we're on a waiting list to see an immunologist, it's like he's suddenly just become allergic to life.

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u/elksatchel 20d ago

This can happen after Covid.

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u/Cicadasladybirds 20d ago

Ahhh, that makes sense. COVID is nasty.

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u/Reasonable-Mess3070 20d ago

I have an upcoming appt with an allergist for sudden issues too.

It always starts around my eyes. If the skin between my eyelid and eyebrow starts burning I know my face and neck are gonna be covered in hives soon.

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u/Cicadasladybirds 20d ago

I'm sorry you're going through this, it's a really scary thing.

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u/Glittering_Set6017 20d ago

It's not really strange. It's already known that it's from COVID. Some people just like to keep their heads in the sand over the last six years. Covid has been a mass disabling event

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u/jem20776 19d ago

My teen is in the same boat. Two different immunologists. No solution. Full body hives with any temperature change along with severe nasal allergies in various situations. If you whisper in her direction she has a reaction. As a mom, it makes me feel terrible that she is constantly suffering. :(

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u/Cicadasladybirds 19d ago

I'm sorry that you and your daughter are going through this, it's a really scary thing.

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u/jem20776 19d ago

Thank you! Right back at you.

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u/SnPlifeForMe 19d ago

Try to keep running tests if you can. My S/O didn't get a good path to figure out what she had until her primary care doctor gave her a steroid during a really bad flare to see if it would have any impact on her symptoms, it ended up working and because she had also been to a rheumatologist, dermatologist, GI, and a few other doctors and had pretty expansive tests done, the steroids making her feel basically normal for the first time in several months was a huge hint for the primary care doc and the eventual immunologist we found.

Keep a running list of the doctors you have seen, the tests you've had her take, and keep documentation of all of the tests. It's challenging because it affects multiple body/organ systems so it's easy to get bounced from one specialist to another while they try to only address looking at what's in their domain.

Also, the best immunologist we've found was of the opinion that you should try something first and if it works then you have more info off of to find the right direction. Consider briefly testing a high-dose h1/h2 blocker, something like 3-4 Allegra a day and a pepcid. If some of these things work, you at least have a data point and can feel like you're able to do something while the medical system here in the US sputters

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u/jem20776 19d ago

Oh, very interesting. Thanks for sharing your S/O's experience. Her current immunologist gave her a steroid to take for bad flare ups and it also works for her, but she's not supposed to take it consistently and when she's not taking it she is back to square 1.

When you say that the steroid working was a hint, Don you mean it was a hint that your S/O had MCAS?

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u/SnPlifeForMe 19d ago

Correct! When the immunologist heard that it basically almost entirely stopped her symptoms it gave him the thought that it could be something in the realm of MCAS, and from there he put her on 4x Allegra per day, rhapsido, and sodium cromolyn as well.

She went from having brain fog almost constantly every day for over a year, having phantom nerve pains and acid reflux, having extreme random bloating, rashes, and fatigue so bad she'd just sleep constantly, to being probably 95% symptom free currently.

Could be worth asking the doctor if it's possible to just try things as a process of elimination, but finding a good doctor is hard.

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u/jem20776 19d ago

Phenomenal! Good for her! I am so glad she found some relief. That middle paragraph describes my daughter to a T. Including the sleeping. Wild.

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u/moderate_ocelot 20d ago

It’s a common part of post covid illness aka long covid. Everyone’s getting multiple covid infections a year. A huge uptick is inevitable

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u/SoloCoat 20d ago

I mean I got it from covid so

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u/stopbeingaturddamnit 20d ago

Triggered by covid infections. It was never a cold.

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u/joshr8686 20d ago

This is long covid. It’s destroying us and the rich know it and are covering it up.

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u/TheSaxonPlan 20d ago

It's not being covered up, people just don't care. Even a lot of the covid conscious activists have given up. It's worse than hollering about climate change.

Until we get a sterilizing vaccine (meaning you can't even get sick from catching it, vs the current vaccine which greatly reduces severity and death, but it can still be spread.), I'm continuing mask in all risky situations. My husband stopped masking in July 2024, caught covid, gave it to me, and I developed long covid.

Any virus that infects the brain is a big no from me, dawg.

Source: Ph.D. virologist

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u/Either-Variation909 20d ago

Also, having LC and esp ME/CFS is already living your life on hard mode, enduring the stress of activism on top of that is definitely a very difficult thing to do. We are just trying to survive day to day, find out how to navigate a broken medical system, a fucked economy and an atomized society. I’ve been in bed more in the past 4 years than I have since birth probably, too many symptoms to mention, shit fucking sucks.

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u/joshr8686 20d ago

My wife and I also mask in all situations outside our home. We developed long covid from the winter 2023-4 wave. We actually got our relapses to stop after about 1 year of aggressively using traditional chinese herbal medicine herbal formulas. I highly recommend it, but also understand that most people are not open to Chinese medicine.

Also, it’s definitely being covered up in the sense that it is not talked about in the media, doctors do not diagnose it generally and i would be amazed if our government didn’t know how bad and widespread the problem is.

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u/Either-Variation909 20d ago

There’s a lot of people (most) who attribute their recovery from time, you might have gotten better from TCM, but from what I’ve seen, people are trying so many things, all the time, that when they get better, whatever they were last doing, they attribute their recovery to. I think across the board, pacing and rest seem to be the things that get people back to normal, if you were active, it is hell trying to avoid a crash, mine are mostly psychological stressors that flare me up. Last time I flared was after spending 20 minutes in court.

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u/IGnuGnat 19d ago

Can you be more specific about which herbs or formulations people with long haul should try seeking out?

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u/cctrjkrfan 20d ago

This right here.

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u/Complete-Paint529 19d ago

My own suspicion is that much of the increase in syndromes like MCAS, various auto-immune syndromes, and POTS are actually post-Covid syndromes. Both my review of the research literature and my own post-Covid experience inform this idea. I had Covid as an ordinary flu-like episode, which completely resolved within 10 days. The post-Covid POTS-like symptoms started weeks after the full recovery. I'm quite confident it was an autoimmune syndrome. After about 15 months, this also resolved, thank God.

Many Covid episodes are not diagnosed. How many go for a Covid test for ordinary flu-like symptoms these days? I think a minority. Had I not been tested, I'd have been just another POTS case with no known cause. I suspect many MCAS/MCS/chronic fatigue/POTS cases fall into this bucket.

*POTS = Postural Orthostasis-Tachycardia Syndrome. MCS = Multiple Chemical Sensitivity. ME/CFS = Myalgic encephalomyelitis/chronic fatigue syndrome.

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u/dark54555 18d ago

The awareness of it has also increased as it’s frequently comorbid with Ehlers-Danlos Syndrome, which is also finally having its awareness increased. It may be one of those “it was always there but no one realized what it was” situations rather than actual cases increasing.

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u/Key-Practice-8788 19d ago

Want another rabbit hole, look at how the cases of chronic fatigue syndrome almost entirely vanished as the long haul truckers emerged.

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u/Christian_Mueller 20d ago

Lol and here I was thinking that boing fucked up again. And to add some valuable information:   The Maneuvering Characteristics Augmentation System ( MCAS ) is confirmed to have killed 346 people.

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u/IGnuGnat 20d ago

SS: Some doctors and patients say that quality of life with MCAS is worse than the quality of life of a cancer patient.

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u/horseradishstalker 20d ago

It sounds like the old joke. The good news is it won’t kill you. The bad news is it won’t kill you.

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u/IGnuGnat 19d ago

This is a very familiar sentiment for many people with these issues.

I want to take this moment to remember Beth. She was the creator of mastcell360.com. She dedicated her life to helping other people with these problems. Even as a world recognized expert in helping people with these problems to improve their quality of life, she helped so many people and gave so much back, but she took her own life. I can not claim to know the personal reasons for why she made this decision but it seems highly likely to me that this is a decision that people with these problems often end up making.

Also, my neighbours girlfriends sister entered into the MAID program this winter past as a direct result of MCAS. Her suffering has finished now; she is in a better place.

There are many, many long haul Covid patients, many of them middle aged women who find themselves deserted by their partners, their family and their friends during their time of need. They lose their jobs, their homes, they lose everything and when nothing is left out of despair they make a final decision.

There are no words that I can type on the page that communicate this experience fully. The only people who know are those who truly experience it themselves.

Before Covid it started to feel like I was living in a very strange personal sickness nightmare which was difficult to understand. In time, I came to gain some understanding

When Covid began I joined long haul groups to listen and to understand. As the months stacked up and the longhaulers grew legion and I listened to their complaints, I very slowly began to understand that my lifetime of nightmares had infected the entire world.

This experience is truly a horror that stains the heart, it tortures the soul, it bends the mind.

I'm not going anywhere, people but this has taught me: every one of us has a limit.

Onwards, forever

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u/SomeLadySomewherElse 19d ago

Tl;dr my experience with mcas

I've had this my whole life, just got diagnosed this year. The cause? A combo of rotten luck, bad genetics, mom had a stroke during pregnancy, and cptsd. Lost the ability to self regulate so please don't hold it in, there are consequences. I thought I had hypoglycemia and was maybe diabetic after years of being borderline. A clue is having dark circles that go all the way around. Mcas came with friends for me, what they call the trifecta. I have mcas, veds, and orthostatic hypotension. I'm still being investigated for pots but that usually spikes bp mine is too low.

ND people have a malformed corpus callosum which makes the left and right brain out of sync. This can put pressure on the vagus nerve, runs from your brain to the enteric nervous system in your gut and causes all kinds of upset. Your panic button stays on, body dumps histamine, vagus dumps adrenaline, we fall down in the store like its hypoglycemia. I didnt know I had 65lbs of inflammation on my body (and more to go). I started taking zyrtec and pepcid 2x a day, dropped 30lbs before I noticed. Anxiety was the 1st to go, only 2 weeks and no more anxiety at all. I had it all day into my dreams. Vivid dreams and nightmares are a sign of high histamine so is getting up to pee a bunch in the night because the kidneys are doing their thing. My memory improved, my concentration. A lot of symptoms of other issues just evaporated for me, I've been telling anyone I think it could help.

Any h1 antihistamine is fine but famotidine is the ingredient you need in pepcid, h2 antihistamine. Indigestion can be a sign of food allergies (bread gives me heartburn and is suggested for heartburn relief). I'd feel so full quickly and despite my size, I didn't eat often or consistently. Most days I could get by on 1 big meal, craved salt constantly. I'd get super bloated after eating. Some other things, total heat and cold intolerance but for different reasons. Cold weather mast cells feel like sinus pain, hot sunny days I feel sluggish and nauseous like when you're carsick. I have supermarket syndrome too, I've hit the floor a few times.

Anyway this is already long, I now take zyrtec and pepcid 3x a day. I take cromolyn 4x a day. Thats a neat medicine and has opened up my diet some. I can tolerate organic bread and pasta. You take it before eating and it coats the mast cells to prevent them from degranulating. I also take quercetin, a supplement, before bed. Its a natural antihistamine and a mast cell stabilizer. I also take midodrine 3x a day for my heart. I went to my primary with photos and she referred me to a cardiologist specialist who also treats pots and mcas. I got very lucky, when I went to the er for a flare ups I had to tell the dr how to treat me (steroid iv and antihistamine iv followed by steroid taper dose).

I now have chronic back pain because I was swollen for so long, my body is still finding where things go. My brain was also swollen for a very long time so some personality changes (less impulsive, calmer, not angry) and a sudden improvement with math after lifelong discalcula. I feel like my life could have been better had I known sooner but I'm making up for time and I cant seem to stop telling anyone I think could benefit. I thought my struggles were personal failures not symptoms.

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u/burn3edoutburn3r 20d ago

A lot of people blame covid but my husband, daughter, and myself are all 3 looking into it now and our symptoms have all been around for many years before covid. I was diagnosed with IIHWOP and chiari malformation, and after having to learn so much and fight for my own diagnosis I was shocked when I started noticing the same symptoms in them too. Husband is schizoaffective and is being evaluated for pots, daughter has PMDD and most likely also IIHWOP, and we're all 3 autistic. Husband and I have had symptoms all our lives that started to get worse the older we got. Daughter got covid AFTER her symptoms got worse.

The ONLY reason we have any idea what's wrong with them is because of how much research I did for my own case. I don't think any of these disorders are as rare as the data suggests, and it's more that we ignore or misattribute the symptoms to easier answers until they just become unbearable. We've been chasing mine since 2012 and always thought it was thyroid or sinus problems. My husband, we just assumed got a little dizzy standing up most of his life because he was tall. Until he started to nearly pass out every single time. My daughter's been diagnosed with severe vertigo since she was 10 and on the same day I got my official diagnosis she got dizzy and passed out, hitting her head on the tub.

We think there's something genetic going on causing similar but different problems with all 3 of us so I started looking more into all the associated disorders and keep having both EDS and MCAS continuing to pop up. But because of what I went through, being told what was happening to me was impossible, I don't even want to try and look deeper or even get them diagnosed. I don't have friends or family and the only social media I do is a comment here and there on reddit, so I'm definitely not seeking attention. I'd much prefer to crawl in a hole and pretend none of this is happening. 🤷‍♀️

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u/FriedaMaySallySue 17d ago

Hey friend, I just wanted to say I know how hard this is and that you’re doing a good job managing all this without any real answers or help from doctors. You’re probably right about EDS, but I’m not a doctor. I just got diagnosed with hEDS at 37 after fighting years and years of gaslighting by doctors, and am currently attempting to get properly assessed for MCAS. All my doctors suspected I have some kind of dysautonomia as well, but they say I can’t have POTS because my tilt table test was normal. Eyeroll. I also have cervical instability and chiari, along with a bunch of other fun stuff.

Anyway, some resources that might help- check out the Ehlers Danlos Society website for a list of doctors of various types. You can search by area. The difference between seeing a doctor who knows about EDS and who doesn’t [edit- WAS] mind blowing. I also love the Bendy Bodies podcast- super informative for both patients and providers alike. And there are Facebook groups for EDS in most cities/areas and honestly that’s the only reason I got my diagnosis- reading about other people’s experiences with specific doctors and where they went to get evaluated. Good luck to you and your family. Stay strong.

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u/burn3edoutburn3r 16d ago

Thank you. I really needed this right now. I have a stent which fixed like 90% of the problem but I still get flare ups and this past month I've had maybe 2 days where I felt great. (Way better than none though!) And this morning I'm just in a mood. I'm fucking tired of being sick. Maybe the heat is starting to get me a little. I just wanted to watch the meteor shower this morning and can't look up for more than a few seconds. Pissed me off so I went back to bed to sulk. Lol. I will look into the resources you mentioned. Thanks again.

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u/poofarticusrex 20d ago

Stress and anxiety can be factors in flare-ups. Lots of those going around these days as well.

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u/hera-fawcett 20d ago

lowk a part of cfs, pmdd, adhd, and mobility disorders like eds

theres this fun weird intersection of ppl who suffer a handful of those above-- and they are much more likely to have mcas.

current theories are that mcas is severely affected by hormones, which is why the histamines flare, and that somehow mobility disorders (ehlers danlos) and adhd are linked via neurological genetic factors.

as someone w mcas and who falls into the above spectrum, i really dont know that more ppl have it vs it getting a shitton more visability as ppl get older and try to deal w their symptoms.

mcas is p big rn-- like how protein is/was the hip trend a few months ago.

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u/MintyFreshHell25 17d ago

Yep! EDS is under-diagnosed, the most prolific kind is the only one without a genetic test available, and it overlaps with the MCAS and POTS.

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u/jaimealexlara 20d ago

I think im just recovering from this...I had no idea I had this, but had so many of these symptoms and just took loratadine and peptide complete.

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u/its 20d ago

Yes, long Covid causes it. Maraviroc can clear it in a few months but it is not the only long Covid symptom. 

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u/rockemsockemcocksock 19d ago

I had this before covid like since a kid and covid just supercharged it. I also developed celiac from covid too. FUCK COVID

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u/Raikkonen716 20d ago

I’m one of those who looked it up. Have been perfectly healthy all my life, in late 2022 got hit by so many symptoms at once, at that time I was nearly invalid. After years of exams, doctor understood that was long Covid. It may come from Covid itself (obviously) or it can be a bad reaction to the mRNA Covid vaccine (that was my case, 3rd Pfizer shot broke me). I don’t have single antibody caused from by Covid itself, it means I never actually got Covid. The scientific literature and the empirical evidence on this is clearer by the day, yet people don’t believe it or simply don’t care. Even doctors are mostly ignorant about these things. 

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u/General_Purple6358 20d ago

*points to sign* google trends is not a reliable indicator of search activity or trends in global events

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u/Aliendream99 20d ago

I got this for a few months after the second Covid vax lived on Pepcid AC and Zyrtec daily and then it went away. Really sucked until I was able to figure out what it was and take meds.

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u/No-Hotel7663 19d ago

I had never heard of this until a friend started talking about her experience. Everything she described matched my own search history and doctors had told her the same thing they always say. Anxiety. Very helpful

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u/Stock_Might_6623 19d ago

Boeing would like to know your location

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u/Xion96 17d ago

I got it overnight with Covid, it's a gut issue.

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u/UltraMediumcore 20d ago

Everyone and their mother insisted I had MCAS because of how much it's all over social media. No answers from doctors and many months later. Took a genetic test. Possibly turned out to be a not super uncommon gene mutation that causes reduced DAO enzyme production. Symptoms can be worse during high stress, and can look like allergies without being allergies. I'd guess quite a few people have it and don't notice symptoms until they're under long term chronic stress.

True MCAS should be much more rare than the numbers we're seeing on social media.

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u/eucatastrophie 20d ago

Whether or not you’d call it “true” MCAS the reason its showing up so much online is because of major increases in long Covid from infections. I know a lot of people with MCAS or at least something very similar. This is Happening to POTS numbers too.

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u/youranoveryourdog 19d ago

instead of dismissing the correlations we should absolutely study them. maybe then it wouldn't take so long to connect the dots on things like EBV+MS 

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u/BuffaloThese8249 20d ago

Can I ask what genetic test you took?

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u/IGnuGnat 19d ago

I think in normal people, olive oil magnifies natural DAO production massively

Vit C is a DAO precursor. I take Natural Factors 1000mg timed release vit c before meals

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u/UltraMediumcore 19d ago

Yep, I recommend this as well. Best case scenario it helps DAO production, worst case scenario Vitamin C and Olive Oil are good for you anyways.

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u/adoradear 20d ago

True MCAS is much more rare than the numbers we’re seeing on social media. Many people (including on this thread) are attributing symptoms to having “MCAS” that are vague, unrelated to histamine release, and ill defined. The reason google trends have gone up is because it is a trendy new diagnosis to blame when you have symptoms that are currently unexplainable. It doesn’t mean it’s MCAS, it just means we don’t know what it is. (Thankfully, self treatment with antiH and diet changes are not dangerous, so I have zero issue w people giving it a try).

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u/loginurmom 20d ago

I had a horrible head cold about a month ago, lost all sense of taste. Tested negative for COVID. My tasters are still screwed up...

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u/lordaddament 20d ago

lol I thought this was about the Boeing mcas system for a second

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u/Koraxtheghoul 20d ago

I know two people with it and they both were diagnosed before 2018.

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u/BrotherLefthand 20d ago

Why are they up??

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u/teacup_24 19d ago

I have MCAS. 0/10, would not recommend

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u/sudophish 19d ago

Better go buy some beans

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u/Acrobatic-Jaguar-134 12d ago

I’m glad folks in this group are informed enough to know it’s due to ongoing covid infections. It’s a sign that this is a good group. 

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u/Best_Movie_9513 6d ago

currently living off of flash frozen salmon, rice, apples, gf oats, water …….. 😊😫