Like to connect with others who have severe MCAS

ERMI from Mycometrics Lab is $290. That’s the only recommended lab for ERMI. According to what I have read, it’s the only one they found consistently accurate. The HERTSMI-2 which is only the 5 worst players is $150.

Personally, I prefer the ERMI. There’s a lot more information you can observe from it, especially if it’s a place you are considering living in.

Thanks. That's surprisingly cheaper than what i thought.

Inositol is a mast cell stabalizer. I believe there's word out there that it's useful for depression too but that may be the mast cells. Dr M and Buhner both highly recommend it. Dr M had me on 3 scoops of 500-750 mg 3x/day between meals and 1000mg of inositol IP6 with meals. If im going into an environment where i anticipate there may be problems I'll take some inositol beforehand to be safe

I need help. I have had MCS for years now and it has not gotten better - mainly worse. In the past week, I have had clear signs of MCAS that have me frightened.

I now have immediate reactions in multiple body parts when eating and when exposed to chemicals, etc. Before, I just felt bad most of the time and had rare spells when I felt better and less reactive but never could pinpoint why I had relief. Also, my symptoms used to be more delayed or just up and down. Now that it’s immediate, it’s scary and I realize I am basically reacting to everything.

This all got much worse in the last week after being exposed to mold again. I’m don’t know if this set something off and changed something in my body or if it will die down in time.

Anyway, I called the Lyme doctor’s office the other day and she called me this afternoon. When she asked me what symptoms I was having, I had trouble remembering but I told her what I could remember. The only thing she told me to try is something called Algonot FibroProtek.

It contains:
CoQ10 - 85 mg
Carnitine - 170 mg
Luteolin - 255 mg
Quercetin - 170 mg
White Willow extract - 85 mg

Does this sound like something that will work?

What brand of Inositol could I take with this?

I just refilled my expired Epipen and bought Benadryl, Pepcid AC, and Claritin to have on hand, but I don’t want to take the antihistamines. I have dehydration issues from low ADH/osmolality and can’t even imagine what I would feel like now if I took antihistamine.

WalkingbyFaith said...
I looked up MCAS today and realized I have a ton of symptoms. It has been really bad the past week and is getting scary. I woke up with a headache, congestion and belching again around the time my bowels started moving. I had a lot of headaches 2-3 weeks ago. I didn’t realize until today that the headaches could be from MCAS.

The scary part is the allergic feelings especially after eating or taking supplements - funny feelings in lips or mouth or throat, itchy face or hands, hot or burning feelings in palms and bottom of feet, abdominal pain. Also worse joint and muscle pain, neck stiffness, coughing, whole body tension like I can’t relax.

I took 500 mg of quercetin before supper and will take another dose before bed. Not sure it helped much.

I skipped the Zeobind yesterday and today. I skipped because I could tell I was getting progressively worse and thought maybe I was detoxing too much. Later today, I wondered if the headache this morning was from not taking the Zeobind yesterday. First headache I have had in almost 2 weeks.

I’ve been feeling scared all day and don’t know why this is happening.

Hi Everyone, this is for anyone to respond, but especially WalkingbyFaith or anyone who can relate. WalkingbyFaith I posted your quote because I am having these types of mcas experiences today and am feeling a little afraid. Really do not want to go to the ER and do not have symptoms of anaphylaxis, but do have lightheadedness, weakness, overall feeling strange after eating. Terrible brain fog. Not sure what to do. What did you do when you felt like this? I am taking cromlyn before meals. Stopped the quercetin for a bit because I was reacting. Also feeling extremely emotional and having trouble coping.

You can also add Pepcid or another h2 blocker. Usually for mcas you use an h1 blocker (xyzal Zyrtec Allegra etc) and and h2 blocker Pepcid Zantac. You can also try ketotifen but you need a prescription and to get it compounded. You can also try Singulair but you need an Rx for that too.

Other natural antihistamines are vitamin c, stinging nettle tea, mangosteen, probably others too.

I'm sorry to hear that your son is suffering such reactions to treatments. Many of us with MCAS figure out we have it because of that sort of dynamic. My LLMD officially diagnosed MCAS for me, but I'm the one who read about it, realized I had it, and then consulted him. He was able to diagnose based on a very clear symptom pattern - in my case, developing acute brain fog, fatigue, and other symptoms after eating high-histamine foods. I'd had strong negative reactions to treatments for years, but my LLMDs just thought I was herxing; had they asked more detailed questions, they would have noticed that I reacted right away to treatments, long before endotoxins could have built up to cause a real herx. So for years I pushed my reactive system, getting worse and worse! Not many doctors in any specialty seem well-versed in MCAS so far, but more and more people are realizing it's playing a role in their health issues, including people with long-COVID and other chronic conditions, so I'm trying to be optimistic that awareness and research funding will proliferate!

The most helpful resource for me was Neil Nathan's book Toxic.

If your son's system is overloaded (from die-off from antimicrobial treatment, and possibly sluggish detox pathways) and highly reactive (from MCAS) then it may take a long time for it to settle down - several weeks or more - and antimicrobial treatment should be reintroduced very slowly because the system might be more likely to react, now that it's primed to do so. (It sounds like you know this, but I just thought I'd mention it because I know it's also really tempting to resume treatment ASAP.) Was he seeing improvement with antimicrobial treatment? Was he doing any supportive treatment for immune regulation, nervous system support, etc. or just the antimicrobials?

Reactions to treatments, especially antimicrobial treatments, are common with MCAS, yes. Bartonella, mold exposure, and other infections can trigger MCAS as well, so lots of us here have it, to some degree or another. I'm so sorry your son's case has been so severe and challenging! I know it feels maddening when someone is in the state in which even water can cause a flare. Feels impossible to manage! I know it must be especially painful for you both to have the primary features be psych symptoms. He's fortunate to have your help and compassion.

The goal during a flare is to minimize triggers until the flare subsides. There's no silver bullet when a severe flare is in full force that will stop it in its tracks.

Has he tried any mast cell stabilizers or a low-histamine diet? Trigger avoidance and a low-histamine diet sometimes can be very helpful all by themselves. Sometimes environmental trigger avoidance can be tough, like if one's triggers include ongoing mold exposure, seasonal allergies, stress, heat or cold, etc.

In terms of drugs and supplements for mast cell activation, people often have to try lots of things before they find one that helps. Frustratingly, some mast cell stabilizers cause a temporary worsening of symptoms at first, so it's hard to know which ones will be most helpful. You may already have a long list like this, but just in case, here are some ideas:
Supplements - DAO, bromelain, quercetin, curcumin, stinging nettles
Rx drugs - ketotifen, cromolyn sodium (oral liquid or nasal)
OTC drugs - H1 blockers (Claritin, Zyrtec, etc.), H2 blockers (Pepsid, Zantac, etc.)

I hope that you and he find some relief very soon!

I'm so sorry, TamaraL. This sounds so frustrating for you both! Maybe the book Toxic will offer some ideas. Your son is fortunate to have your help!