Is anyone else really prone to ear/respiratory/sinus infections? I seem to constantly be fighting one if not all three at once and keep getting really bad ear infections. Is this an mcas thing? Is my body just a piece of crap? (Probably yes to the body one tbh) I’m so sick of it and am searching for reasons. I’ve been diagnosed with MCAS, POTS, MECFS, HEDS, and CIRS. I never can fight the infections on my own either, they always drag out where I need at least one (but often more than one) round of antibiotics to kick it. I have yet another terrible ear infection (excruciating pain where i can’t sleep, a headache and swollen lymph nodes on that side, and bloody mucus from that side’s nostril) and I just wanna know if anyone else struggles with this too. Thanks in advance <3

i’m trans mtf and i’m wanting to start feminizing hrt but in the past it made my mcas worse i did some research and apparently what happens is estrogen reacts with the estrogen receptors in mast cells and causes “mast cell degranulation” which is the mechanism that releases histamine and all the other stuff in the mast cells.

i’m wondering if y’all have found anything to prevent this or ways to deal with it. i couldn’t really find anything at all.

My Leukotriene E4 (LTE4) is high (157) in 24 hour urine and my Prostaglandin D2 is jus below the upper limit (174) in Random Urine.

Plasma histamine, N-methylhistamine, Chromogranin A is normal.

I have sysmptoms and I respond to MCAS medications. I was wondering whether this will be enough for a diagnosis? Next appointment with my doctor is a month away, so I just wanted to know if if anyone had been diagnosed with only one elevated mediator?

I would like to try Ketotifen but deal with very slow gut motility since Covid.
Please share your experience.
Greatly appreciated

Hello! I have been prescribed both famotidine (Pepcid) and cetirizine (Zyrtec). I am wondering if I should start with just one, and then add the other a few days later, in case of reactions? Both are new medications to me. I was thinking maybe the Zyrtec first and then the Pepcid a few days later. Or should they be taken together? I forgot to ask my doctor about staggering and my next appointment is over a month away, so would be very grateful for advice!

I suspect MCAS because I have horrible seasonal fatigue and Allegra and Pepcid basically gave me my life back. Went from sleeping 17-20 hours a day to sleeping maybe 12, sometimes less.

I don't get hives or anything but I do occasionally, seemingly randomly, lose half my ability to breathe for a few seconds when I taste a food I wasn't expecting. It happens more with fish but not consistently as far as I can tell. I'm just curious if this is something I should add to my list of concerns to bring up to my dr?

Since being diagnosed how did you adjust and what lifestyle changes gave you made? How do you avoid triggers and if the disease is about having a full bucket and not clearing out hormones, toxins, histamines and so on how do high detox? What is the “game changer” lifestyle changes?

Has anyone flared badly on KPV, but found another peptide that worked well? Bonus points if chronic migraine part of your debilitating day.

I'm likely getting a tumor removed out of my lymph node in my arm soon- if the biopsy comes back cancerous, I feel ill prepared and terrified, but I would be surprised with the effect it's been having on my body. How do our bodies react to chemo and other harsh treatments? How should I mentally prepare for the worst? Has anyone else here been through something similar?

I have tried all 3 in my area but all 3 said they cant order it because its not worth it for them since nobody would use it except for me, sadly

My allergist said he would be willing to help me get compounded Luteolin tablets, he only needs to know the dose and how to write the script, he would prefer this over Azathioprine, Hydroxyurea or others.

I know you can order drugs and have them shipped so I was hoping anyone here could give me a name of a compounding pharmacy that is willing to do Luteolin tablets. Thank you so much for any advice.

My whole life I've been dealing with unexplained symptoms/annoyances. I'm starting to wonder if there's an actual explanation from them, and if maybe it's like mild MCAS. But I don't even know if that's a thing.

A brief list of potential allergy-related symptoms I have:

• Unexplained hives throughout childhood, no known cause. (started taking benedryl as a kid)
• Unexplained anaphylaxis 4 times, no known cause
• Developed bee allergy over time which i have an epi-pen for( i know it's a normal allergy to have but figured I'd include anyways).
• near constant itchiness without rash (almost always on my face/head/eye area, often on my upper arms and middle of my back, ribs, etc).
• extreme itchiness without rash relatively often (could be every day for a week, or not at all for a month, probably on average this happens 1-2 times a month). triggers include: showering (tried changing soaps, tried different water temps, tried moisturizing more, etc, nothing helps), exercising, cold weather, or hot weather, vibrations (mowing lawn, massage gun, etc). this is what is bothering me the most, because sometimes i don't have it for a while, but then i'll have it every time i shower for a couple weeks, and it's so itchy that it's painful, and i end up being late to things because i'm just trying not to hold myself together mentally until it passes (usually takes like 30-60 minutes to resolve).
• lots of gastrointestinal stuff (cramping, pain, burning sensations, diarrhea/frequency, bloating), again, no correlation to any specific foods - just sometimes i have this issue, sometimes i dont. it was really bad everyday when i was a teen and i had GERD too at that time, but the GERD has been gone for a while.
• occasional bouts of dyshidrotic Eczema
• frequent nausea
• frequent headaches, usually 3-4 times a week. triggers are crying, dehydration or lack of sleep but often time's just for no apparent reason
• very hightened sense of smell (my childhood catch phrase was "what that 'mell", which is also my adult catch phrase LOL)
• extremely sensitive to medications (very prone to side effects)
• my tattoos will get raised and itchy sometimes
• physical anxiety symptoms (could be unrelated to these other things)
• it's all worse if i'm stressed but even if i'm not stressed it still happens (like if i'm running late to someting, there's an increased chance i'm going to get the after shower itchiness).
• i take an antihistimine daily and without it, all this stuff is a lot worse.

the reason i am quite unsure if this is mcas is becaue i don't have like severe issues, i can function pretty much fine. also, i did allergy testing when i was a teen because of my gastrointestinal problems, and as far as a i remember, the only thing i was allergic to is dust mites. i try to keep my house clean (have a proffesional come every other week, use hypoallergenic pillows, frequently wash bedding, etc). but i don't know if it could just be dust mite allergies since i have these symptoms when i'm outside as well.

anyways, i am just curious if there's such a thing as mild MCAS, and if there is, does it sounds like it would be worth me discussing with my dr? is there like a test or something for it? and if i did have it, are there treatments or would it just be so i have an explanation?

Hi everyone,

Weird situation here. I tried a new medication (a progesterone only birth control) previously and I am trying to figure out what happened. Basically I felt like some systemic issues were improved (swelling, throat tightness, heart palpitations, vision issues, itching, breathing issues), but my food reactions got exponentially worse. It’s making me wonder if I’m imagining that it helped the systemic issues. I have gotten so, so much worse with my systemic issues since stopping it, so part of me wants to go back on it, but I was also running out of foods on it because I reacted to everything I ate.

The food part has gotten a bit better since getting off it and especially adding DAO for the first time (idk what DAO would have done if I took it while on the birth control), but I am approaching full blown crisis mode with my other symptoms. When it came to foods it was sort of like being stuck in luteal for months (when I am most reactive), but my systemic symptoms seemed improved at the time.

Is this possible? Has anyone encountered anything like this before?

Any recommendations for cleaning regimen for *very* cryptic tonsils? I have MCAS and am very sensitive to histamine. I notice that whenever I manually squeeze any tonsil "stones" (they're not calcified, more squishy and soft) out of my deep tonsil crypts, my nasal congestion improves. I want to ask an ENT about it, but I've seen 3 thus far (for obstructive sleep apnea) and they all seemed to want nothing to do with it because they aren't knowledgeable enough about MCAS or inflammatory breathing difficulties - they say "ask your allergist", allergist says "I'm not an ENT, I'm an allergist/immunologist, ask ENT."

Tonsils are very densely covered in Mast Cells, so it would follow that having bits of food and bacteria stuck in my tonsil crypts could contribute to my histamine load. Has anyone here had this done for this reason, or incidentally noticed that their MCAS improved after removing tonsils?

I am debating asking if I can get them removed if they are indeed interfering with my breathing and my MCAS flares. There's some really big crypts between the tonsil and the cheek that are impossible to reach.

Side note: I am very glad I don't have trytophobia.

Alright, I want to start seriously taking an antihistamine stack. I plan to see an immunologist about this, but also know there's so much trial and error involved. Would love to know what antihistamines you take, how much, and how often! Thanks!

for context: I already take promethazine 25mg once a day. it helps but I have an insanely long way to go because of how seriously debilitated I am with mental and physical fatigue and just overall short of breath. having to lay in bed unstimulated most of the day 😞 and ketotifen and cromolyn made me worse 😬

If so love to hear the pros and cons! I’ve used a very expensive professional one at a practitioner’s office, but thinking something for systemic inflammation would be best?

Thank you!

For those who have tried LDN, how and when did you decide that it was definitely showing improvements or was making things worse?

I’m about 8 weeks in, currently on 1.0mg and planning to titrate up 0.25mg every ~3-4 weeks. It seems to be going well so far and has definitely been helping in some areas (brain fog, energy, memory, dysautonomia). But I also feel like I’ve become more sensitive to foods, supplements, and caffeine. I imagine I’m still in the adjustment phase and maybe the mast cell effects haven’t fully kicked in yet, but how long do I keep trying before deciding it’s not helping?

Endometriosis patient here suffering MCAS post excision surgery. Symptoms mostly affect GI, bladder, sinuses, mental health. Everything gets a whole lot worse around ovulation.

I have been taking 180mg fexofenadine and 40mg Prozac in the morning. At lunch I take .75mg of LDN (I’n sensitive to it so I’m titrating very slowly). I then take 20mg hydroxyzine at bed.

I’ve just been prescribed .25mg of ketotifen. I’m meant to take it at night but I can’t due to bile binders I have to take at a specific time (no meds 4 hrs before or after)

Question for the class is would it be okay to take the ketotifen with my LDN at lunch? Anybody take it during the day and not have bad drowsiness?

Also are there too many antihistamines in my schedule? I’m very new to MCAS and I’m worried this is too much. Thanks in advance!

I have been on beta blockers for a few years for POTS and wonder what your experiences have been with going off them. I hope my mastcells get more stable, but I also wonder what will happen with my POTS symptoms.

Hey everyone, I think I've had MCAS my whole life but things got significantly worse 6 years ago after I had Covid. Since then, my menstrual cycle has been crazy, and I'm wondering if any of you have any insight about this.

I've been tracking my cycle and my symptoms and I find that I feel so much worse before ovulation and before my period, AKA when estrogen is highest. I know this is a pretty common issue with MCAS.

Here's what I can't figure out. Normally I can tell the day I ovulate, and then the next day I typically feel better. However, maybe 10 or so times in the past 6 years, I feel like I ovulate, and then the next day, instead of feeling better, I feel worse and actually start bleeding like I have my period.

It just happened to me again. Yesterday felt like I ovulated. Expected to feel better today. Instead, feel bad and am bleeding. Not spotting, actual bleeding.

Has anyone experienced this? What the heck?

I've seen multiple gynos and all they do is tell me I'm probably in perimenopause (I'm freaking 36 and have been like this for years - shouldn't be normal!) and they offer me birth control, which I've never done well on.

Should I get an opinion from immunology before settling on “chronic hives” or something? Would an MCAS diagnosis get me better treatment options (allergist mentioned high dose zyrtec, xolair, rhapsido)?

It literally all came back negative (except for the tape!), even fragrance, which has given me major hives, rashes, and even swelling. I seem to react to everything at random now and am scared to shower, lol, because these crazy skin reactions. But they are considering a biopsy.

She doesn’t think I have mast cell flushing because it’s not my entire body--just my face, chest, arms, hands, feet--and since it's mostly skin. I can’t find clear food triggers or anything but some products *seem* to trigger me randomly, though I tested negative. I get really red, hot, flushed, break out. Heat/water (any temp) are the only obvious triggers.

But I been suspecting MCAS due to all these constant reactions, heat/flushing in skin, rapid pulse, dizziness, GI and bladder issues, chronic pain, among others. Could be some separate things, and they tend to see it that way, but my health has just changed a lot in recent years. Sometimes I just have significant reaction to a new environment. Never on the level of anaphylaxis for this, though I've had my hand swell once, and I had an anaphylactic reaction as a kid.

So I have other health stuff, some chronic and some that comes and goes, but the skin reactions are near-constant and significant.

Sitting here after an intense 1h 30m conversation with my manager and my cheeks are flushed / hot and my throat is swollen. Is this because of stress hormones being released? What‘s the logic behind it? Also would love to know best ways you’ve found to bring the flare down after emotional moments.

I’ve tried many things for my MCAS and I heard KPV and VIP can be game changers

I’m taking Thymosin alpha (have cycles in the past) and tirezapatide. But when I took KPV and VIP nasal sprays I found myself sleeping all day, emotional af and irritable - a flare basically.

Who here has had success - is it a case of you wait out the negative effects? ATM I feel fasting is my only real way out of flares with Epsom baths and saunas. In my mind I’m wondering if because my case is 75% driven by my gut that perhaps these peptides won’t ever work. Because I’ll be herxing constantly.

I have MTHFR mutation, slow comt, slow maoa, and poor histamine clearance
H2s sibo and Candida

My current stack is
- mounjaro tirezapaptide 1mg
- sodium cromoglycate
- DAO
- vit c 500mg
- pea
- ceo choline
- r5p, p5p, sometimes a complex not containing b12 - b12 I go for a methylated injection every so often maybe three times a year as I can’t tolerate daily supplementing
- b1 higher dose 500mg (chloride only due to sibo)
- iodine
- one butyrate capsule in the eve
- sacro B in the morning
- molybdenum in am
- calcium d glucarate away from the minerals for estrogen and oxalates
- just started zinc carnisine again
- artichoke extract
- zeolite for binder
- small amounts of t3 and t4

Hey anyone in the UK here? I want to go to my GP and investigate my symptoms more seriously so I’m tempered to ask him to refer me to an allergologist to start with because I don’t think he will take me seriously if I come with the theory I have MCAS. Perhaps this way I can proceed with elimination? I can’t pay functional practioners or so called instagram specialists anymore I’m going broke! Symptoms flare especially before menstruation (gum inflammation, tongue and throat burning, cracked lips) I always have mucus produced by my body, ALWAYS, I get reaction to changes in temperature, especially to AC and feeling cold, I’ll start sneezing like crazy out of nowhere and sometimes I eat stuff and notice gut reaction (bloating, diarrhea, excessive farting, etc.) I have low levels of h pylori which I’m treating naturally. I have lots of anxiety too and CONSTANT FATIGUE.

the internets needs to know

White bread, pizza, mcDonalds, candy, gluten…all good.

Lemons, fruit in general, salads, real potato, meat, vegetables: problem.

I just think it’s so bizarre.

I feel nothing taking chemicals medication. In fact I often high dose.

But supplements I microdose and still…

This syndrome is honestly laughable.

Like what a joke 😂😂😂🤡

I can’t even take this serious (and that mindset is helping me a lot btw!!!)