Sudden onset of MCAS, life in total disarray, what can I do?

Hi everyone,

Up until 2-3 weeks ago I was a high functioning person with Lyme. Only taking Bicillin, and was ready to resume ivig to knock out my dysautonomia to be fully healed. Working and living a normal life. No one really knew I was ever sick or dealing with some residual symptoms. Now I have severe MCAS and it’s turned my life upside down.

Back story: I started taking a bunch of new herbs and supplements in November/December and then on Jan 13th I had a vaso-vagal episode after a Bicillin shot. Cut out every supplement, resumed Bicillin a week later, and resumed my life. 2 weeks ago I had my first ivig infusion since November, had gone a year with them 25g/wk with no issues at any point. 2/3 through the treatment I tell the nurse to stop because I feel strange. Basically had a vaso vagal type response except had extreme sensations of warmth in my legs and my abdomen that waxed and waned. I took a second Benadryl, nurse gave me my iv hydration, and I was able to then recover after an hour and went to bed. Felt like crap the next day. Felt good the day after that, and then on that Sunday I felt horrible. Started a Medrol pack, lasted 2.5 days in it, and ended up in the hospital last Thursday with Hyponatremia. Discharged this past Monday.

Anyways, during the 2-3 days on Medrol, I noted an intense burning in my upper abdomen, it was very strange. At the hospital it would come and go on the first day, the second day it got even worse and lasted longer (they started me on pro Tonix and pepto which solved the initial burning), and the third day it was not only the abdomen but my entire thorax and legs. Just getting extremely warm, red, and heart was pumping. Almost feels like an allergic reaction. When it happens, im bed bound, and the reactions can last for hours.

I’ve been home since Monday, my LLMD/neuro who I’ve been basically communicating with daily had me start cromolyn for the MCAS and Florinef to help with Sodium levels and for POTS/maintaining a decent BP. It has been a little rough tolerating a half dose of it and I may not be on it for long if it makes flares worse but the benefit of keeping a steady BP and sodium levels is appealing despite the drawbacks of a steroid. The cromolyn has certainly helped but not enough, I need more. When these episodes come on they can sometimes be so intense that I’m glued to my bed praying for them to stop. My body feels like it’s burning from the inside out. Luckily so far it hasn’t affected my breathing or anything. A majority of it is manifested in the digestive system/gut. When the flares start my bowel sounds pick up or I feel cramping, increased gas, etc. The cromolyn really helps in this area.

I also take Zyrtec, protonix, and my usual clonazepam. My allergist said it’s fine to take 2 Zyrtec despite most places saying 10mg is the max so I’m going to split it between morning and evening starting tonight.

The triggers are hard to identify except stress which is a blatantly obvious one.

What else do people recommend to take to help? Are there other mast cell stabilizing supplants or meds out there? Does this ever get better? Does anyone else have attacks that are severely intense? I am hoping it’s just MCAS and not something more sinister. I did get a tryptase blood test taken on Sunday so I’m waiting for those results. I don’t have an enlarged spleen or liver.

Can people have mcas and still work and be functional most of the time?

Looking back, I probably had mcas to a certain extent. 2 years after being dx with Bart and Lyme I gradually started to poorly tolerate meds I could previously tolerate very well.

Post Edited (Solaris719) : 3/16/2022 7:18:41 PM (GMT-6)

RainyCloud said...
Sorry to hear that you are struggling!
Just a thought: could it be parasites in your stomach?

Full disclosure: I'm dealing with parasites myself right now, so obviously it's on my mind more, but you mentioned it's mostly in your abdomen so I figured I'd ask.

Anything is possible I suppose. How would I know if it were parasites/anything I could do to get rid of them? What are you doing to deal with yours?

Thank you for all this info.

I am currently taking: Zyrtec 10mg am and pm, clonazepam 1mg every 12 hours, protonix, Florinef half tablet (.05mg) to stabilize BP, probiotic.

I ordered quercetin and it’ll be here today, I have no idea how much dose I should take? Any idea?

I don’t know anything about ketotifen, does that work on more than just digestive? I need something to help systemically. I do have circumin on hand, I can add that back in (I have been taking it for years) in a day or two. Just very wary of what I’m putting in my body right now.

I am the guy who did Gupta! I started back up this morning. I have been worrying myself sick that this could be more than MCAS because it’s so severe and debilitating, it’s really affected my sleep.

People do get some improvement from this? I hope so, currently my entire network of family and friends are worried about me and I haven’t been able to do much.

saraeli said...
Sounds very MCAS to me.

The cromolyn (assuming you have the oral liquid form) is meant to work on your GI tract primarily, as theoretically it doesn't absorb into the body very much. If a person's main symptoms are GI symptoms or their main triggers are food-related, then cromolyn can be sufficient to manage MCAS for them, but most people need other mast cell stabilizers and lifestyle modifications. Everyone seems to end up benefitting from different combinations, so you might need to try a few things before you find which combination of things works best for you. This WILL pass.

Don't be surprised if your tryptase test is negative. MCAS testing is dicey because it depends so much on triggers and timing.

You have many other options for supplements and meds. A few ideas (there are lots I'm forgetting):
Supplements: quercetin, curcumin, DAO, stinging nettles, bromelain, vitamin C, homeopathic histaminum
OTC: H1 blockers (Zyrtec, Allegra, Claritin) and H2 blockers (Pepsid, Zantac)
Rx: ketotifen

While you are in a flare, do your best to avoid triggers, including high-histamine foods and supplements. Don't put anything unnecessary or antimicrobial in your body, if you can help it, until things calm down. Depending on where you live, seasonal allergies, warmer weather, and the mold from wintertime decay might be contributing, so keep windows closed, stay inside, and wear a mask when you go outside. You're right that avoiding stress is important but sometimes laughably difficult when you have a chronic illness! Limbic system retraining (am I remembering right that you tried this in the past?) can help with the over-reactive system processes as well.

Dysautonomia and MCAS are so limiting and troublesome, and I'm sorry you are dealing with this after having felt so well! I know that's extremely frustrating.

Thank you! I hope the quercetin helps. Are there any side effects I should look out for? Can you take it continuously?

I checked my probiotic - enviromedica terraflora deep immune - I don’t see any of those strains on there.

I mean, it has to be mcas right? Using the stabilizer (cromolyn) has helped and I don’t think it could be anything else. How long does it take tryptase tests to come back? I had one done in the hospital on Sunday but it hasn’t come back so I had another one done today. I’m hoping it’s low bc that likely rules out the bad things (the worst variants of mastocytosis)

A huge issue right now is sleep. I’ve never ever had trouble but since being in the hospital I can’t seem to get more than an hour or 2 at most. It makes it much harder to heal without sleep.

Also, who manages mcas? My LLMD/neurologist is helping me but he finds some of my symptoms bizarre and hasn’t gotten me into the office yet to get a full work up. The dysautonomia is in total overdrive - thankfully the florinef helps.

Do people with mcas exercise? I need it in my life but I can’t right now. More importantly, I need to be able to work and right now I can hardly do anything. Gotta get my mind more positive to start the climb back.

saraeli said...
People do improve from MCAS, yes, but the really intense flares are scary! It can take weeks for a bad flare to subside, even with the best mast cell stabilizers and trigger avoidance.

Check the strains in your probiotic, as some aggravate MCAS: https://wholenewmom.com/low-histamine-probiotics/

I started with 1500mg of quercetin per day total (three doses of 500mg each) but now do fine at 500mg total. I like the Solaray combination with bromelain and vitamin C, but I definitely understand starting with single-ingredient products until you know how you respond. Not sure what dose is typical, or how exactly ketotifen works (have not tried it personally).

I don't mean to assert that I'm sure MCAS is what's going on for you, just sounds very much like it to me. (We all have our lenses, after all.) Wishing you swift relief!

So my first tryptase test from last Sunday came back and my result was 3.0 which is well within normal range. I had another one done yesterday so I’ll get that next week. I guess this is a good result ?

So, I made the journey to an allergist/immunologist in NYC at the advice of DCD and the doc seemed to know quite a bit. Definitely way more knowledgable than your standard A/I who will tell you if your tryptase is normal than you’re not mcas. Also she happened to have immediate availability which was amazing.

Importantly, I got a lot of diagnostic lab work ordered (tons of bloodwork done on Thursday for allergies and other items which required 17 vials, plus a 24hr urine ample for histamines, prostaglandins, etc which I dropped off to my local quest this AM, I think the urine tests are more useful for mcas diagnostically ) which can be useful in determining what is going on. I’ve have 2 tryptase tests - first was a 3, second was 1.5 or so, so that’s good at least.

The biggest names in MCAS seem to be in Westchester county but the cost and wait lists can be outrageous (Dr afrin is probably the biggest name but his soonest appointment is august and he charges 3k for the initial consult and 3k for the first follow up. Dr Maitland I didn’t get a cost on but she requires you to sign up for a 999/yr newsletter and you have to receive an emailed packet of info on her costs and availability - which I asked for but never got) so I’m grateful I got to see someone. I joined an mcas FB group and a lot of the members seem to have symptoms way more severe than mine despite being pretty debilitated myself currently. I will say I am showing some improvement from when I first started this thread but my energy levels vary wildly throughout the day.

Basically I’ve narrowed it down to MCAS and/or POTS/dysautonomia. I’ve had pots for a few years but it was manageable until now. My Neuro prescribed me florinef which I am taking a half dose of (.05mg) which helps you retain salt and blood volume and has kept my BP stable and avoided the orthostatic intolerance/hypotension which is a newer symptom for me. I am not thrilled about being on a steroid long term but it is necessary for now.

Both mcas and pots/dysautonomia can cause havoc in the gut - which I am experiencing (cramping, some localized pain, lots of bowel sound ) but which is helped by meds (protonix, Pepcid, probiotic). I am hoping the symptoms will abate over time but am going to a GI on Monday to discuss. I also have a cardiologist Monday and need to see endocrinologist to ensure adrenals etc are in working order asap but that is proving difficult. Hoping my cardiologist can pull some strings.

If it is MCAS, treatment protocols state you should be on an H1 and H2 combo which I am currently doing with Zyrtec 10mg AM and PM and Pepcid AM and PM. You basically keep trying different combos if needbe until you find the one that works best. There are other mast cell stabilizers - prescription cromolyn being one which I am taking and I believe is helpful. There is also quercetin (I haven’t added it in yet), Vitamin C (haven’t added it in yet) and prescription Ketotefin (not sure where to get it or dosing but it’s a generalized H1 blocker) and apparently many people use LDN (never tried it, don’t know which doctor I could get it from to try if needed). Vitamin D (taking 2000iu Am and pm) and benzos (clonazepam, which I’ve been on for a decade) also can stabilize mast cells.

My hope is that my body/immune system is just in a flare from the bad reactions to ivig and Bicillin that popped up this year (after never having any problems for years) and that I’ll be able to return to some form of treatment. It seems like a lot of folks in here have managed MCAS quite well so that gives me hope. It sure is difficult and mentally taxing though.

I would like to Try ketotifen if my doc indeed diagnoses me with MCAS. I’ve only seen this lady once so far and have to wait for results and telehealth before figuring out what will be done. I am aware that the tryptase doesn’t really mean much for diagnostics. I measured my first one at the hospital after a multi-hour reaction but it was normal.

I was on ivig all last year for dysautonomia without a single reaction and I felt pretty great but my wife’s insurance changed in November and I lost my approval until last month. I also didn’t have these blatant mcas-like symptoms popping up. My first attempted infusion since the break is when this all began. My goal is to hopefully be able to get back on it and tolerate it without any reactions. I have an approval for dosing 25g every other week until next January But my LLMD/neurologist isn’t going to consider attempting anything until I address the mcas and endocrine possibilities.

It does hearten my spirit to know people who have mcas can take ivig, though.

Who is Dr G? Are there any mcas specialists in the CT/NYC area besides afrin and Maitland? I saw a Dr T in Manhattan and she seemed pretty good but the testing/results interpretation and treatment recommendations are what will really be the key.

So, I received some more test results from the 24hr urine testing.

N-methylhistamine: 160 (normal 30-200)
Histamine: .037 (normal .006-.131)
Creatinine: 1683 (normal 930-2955)

My 2 tryptase tests (1 more pending) have been 3 and 1.2, well within normal limits.

Everything normal so far but I was taking Zyrtec and Pepcid and cromolyn during the testing which may affect things. Still awaiting the prostaglandin tests. I understand diagnosing MCAS is quite difficult and given the multiple issues (lyme, pots) involved it’s hard to know which to point the finger at first.

I talk to the immunologist tomorrow via telehealth so I’ll get a read on what she thinks. It definitely feels MCAS-like but I wonder if my post Lyme autoimmunity is driving it. I plan to add quercetin next.

I also emailed my LLMD to try and get an appointment for a consult and to hopefully get back on ivig and tolerate it again.

saraeli said...
I would not expect testing to be accurate with Zyrtec, Pepsid, and cromolyn in your system regularly beforehand. My testing was only abnormal because I had sky-high eosinophils. My LLMD at the time worked with Neil Nathan, had many patients with MCAS, and was comfortable diagnosing me based on symptoms and response to mast cell stabilizers.

Right now I'm in a doozy of a flare, after years of relative stability. Really trying to take my own advice and chill out, but it's hard when all of my systems are so reactive! Sigh.

I hope you find relief very soon, Solaris!

Saraeli, since you’re pretty knowledgable on this diagnosis, a few random questions. Are many people able to work/live if they control their symptoms? I’m not going into anaphylaxis or anything like that. If I could fix my sleep/insomnia I think I could manage pretty well. Do you think MCAS is different for us with Lyme versus those who develop it idiopathically? I’m wondering if I’m able to get back onto ivig and tolerate it with Solucortef as a pre med that that will take care of a lot of the symptoms. It’s a big if - but that’s my goal for the time being. Many articles I’ve read mention ruling out other diagnoses like Lyme. When you say years Of relative stability that gives me hope. Do you take your meds every single day? I mean taking an h1/h2 isn’t a real nuisance but I’m wondering if I’ll need cromolyn all the time or not.

Sorry to hear about this. Dr Moz reccommends ketotifen as his go to for MCAS. It works primarily in the gut. It has helped me a little, though I have minor MCAS symptoms with no food reactivity - just react with flushing and burning in skin usually after a hot shower.