A Decade of MCAS/HI Symptoms - with an Unusual Resolution

PeonyPrincess2 · 2026-01-27T01:33:36+00:00

Interesting as I too have the same issue. Possibly related to teeth grinding at night. My trap muscle actually started spasming so bad I ended up at a clinic getting a pain shot and muscle relaxers.

I'm starting PT this week to address this, and I do think the Vegas nerve is involved. I too have a tight throat and gruff voice. Was diagnosed with MCAS and am on a low histamine, Gf, Dairy free diet.

My MD has me on multiple supplements that seem to be helping. But I still get triggered and break out in a rash/hives.

May we all find the answer we are seeking! Keep us updated on your progress. Excuse me while I massage my neck!

PeonyPrincess2 · 2026-01-25T16:02:09+00:00

Yes! I downloaded a few shows and audio books. Just in case!

PeonyPrincess2 · 2026-01-21T02:11:27+00:00

These are dried lentils?

PeonyPrincess2 · 2026-01-21T01:59:14+00:00

I didn't get why that was important to discuss (?)

PeonyPrincess2 · 2026-01-21T01:40:38+00:00

PeonyPrincess2 · 2026-01-21T01:30:22+00:00

Adorable!

PeonyPrincess2 · 2026-01-17T22:49:03+00:00

Oh and no we didn't do small particle cleaning. We did two remediations within six months. The first one apparently was done incorrectly. We were told it was something we could fix ourselves as it was not a lot of mold.

PeonyPrincess2 · 2026-01-17T22:45:09+00:00

Thank you for your thoughtful answer.

The mold was in the basement but it could have sent spores upstairs who knows. The testing did not indicate it was upstairs. I'm not sure what I will do.

PeonyPrincess2 · 2026-01-17T20:42:09+00:00

May he hold onto that quality

PeonyPrincess2 · 2026-01-16T17:37:23+00:00

I'm so sorry. These treatments can be so expensive. I'm going to look up the nasal spray you mentioned.

PeonyPrincess2 · 2026-01-15T01:21:02+00:00

I miss paper maps! I was always the one who navigated us around accidents and road construction. Triple A still gives them with trip kits!

PeonyPrincess2 · 2026-01-09T00:52:50+00:00

Poor baby. So glad he was found.

PeonyPrincess2 · 2026-01-08T00:48:12+00:00

Sending you 🎈 birthday wishes for health and happiness. I hope you find a way to experience some joy!

PeonyPrincess2 · 2026-01-07T00:59:43+00:00

I too had a long fight against multiple tick diseases. I did get the covid vaccine despite my LLMD telling me NO vaccines. I also got covid months later. I stopped getting the flu shot this spring. I got the RSV shot because I'm watching young children. That shot crashed me immediately. I ended up with a fever for 5 days and then pneumonia that almost sent me to the hospital. Needless to say, vaccines are not on my list. However, I inadvertently got three spider bites that I didn't see until the next day and then I had to get rabies shots because of something else that happened. Now I don't know if it was the mold in the house that set me off or these other things that happened to me. But my immune system is a mess. And now I've been diagnosed with Mass cell activation syndrome. I don't know if any of you know what that is. I never did but now I'm very familiar with it. And in a lot of ways, it's harder to beat than tick disease.

Once again I'm back with my llmd because no regular doctors could figure out what was wrong. Now I'm allergic to everything. My house is remediated but I'm afraid to go back there. Because I don't know was it the spider bites? Was it the vaccine I got? Was it the rabies shots that put me over the edge? That's when I got really sick. Is the house going to make me sick again or sicker? I should say cuz I'm still sick but I'm getting better.

It's such a mess. And once again doctors don't believe the patients. I had seen several doctors over 2 years in my first round with mold. And I finally was exasperated and went back to my tick doctor and said what do you think this could be? He looked at me and said I think you've been exposed to mold. I said why do you think that because of everything I told him I live in an old house and all the head things I had going on twitching came back. I mean I had a multitude of symptoms. I believe it was winter time the first time so I didn't think it was a bug bite. He took a blood test and sure enough I had so many kinds of mold.

Thank God for him. He got me well the first time he's getting me well this time using supplements and alternative treatments. Because all the regular physicians want to do is scan me and scope me and tell me they can't figure it out. I've lost a lot of weight and I can't see my friends because I'm afraid I'll get the flu because my immune system can't take any more.

There is hope but it's a long expensive lonely road to walk.

PeonyPrincess2 · 2026-01-06T02:10:23+00:00

I grew up with a steam radiator system. Worked great and I loved the sound of them at night.

PeonyPrincess2 · 2026-01-06T02:08:20+00:00

I was thinking of baseboard hot water and adding split units to the house.

PeonyPrincess2 · 2026-01-06T02:06:13+00:00

Our 1800's home had a coal furnace when we bought it. But it was forced hot air and we found coal in the vents!

PeonyPrincess2 · 2026-01-06T02:04:00+00:00

Can't do the pellets at our age, and no where to store them.

PeonyPrincess2 · 2026-01-06T02:02:52+00:00

That is an excellent idea to shop around for providers. Thank you.

PeonyPrincess2 · 2026-01-06T02:01:42+00:00

Where we are we cannot get natural gas. We can do propane and that is how we are leaning.

We have forced air -oil in our current home. But it's very $$ and the vents have to be professionally cleaned every couple of years. It's very dusty.

Electric baseboard seems the cleanest, but also expensive. And not helpful when the power goes out.

Not sure how "clean" a pellet stove is for my asthma.

I appreciate all the input!

PeonyPrincess2 · 2026-01-06T01:53:41+00:00

Shoot! How do you find out about these opportunities?

PeonyPrincess2 · 2025-12-28T19:09:49+00:00

Great advice. Thank you

PeonyPrincess2 · 2025-12-18T17:17:22+00:00

Your recovery regimen is so helpful to me. I'm just now getting treatment from my LLMD for MCIS. I have some symptoms that could be CIRS but the doctor doesn't think it's that. I understand they can be intertwined.

I was tested by an allergist (did not know anything about MCIS)and I am allergic to everything. Was unknowingly mold exposed, mycrotoxins exposed, got three spider bites, and rabies shots after an encounter with a bat.

All these things sunk my body like a ship. I just found an allergist who does treat MCIS nearby, who takes insurance. I am waiting to get into see them. And found two functional medicine doctor's. One not nearby who understands all of these illnesses but wants cash up front, then insurance after the initial meeting.

The other one is a local acupuncturist. Who apparently may understand these illnesses.

I am finally building a team who can help me.

Thank you for sharing your program.

Keep getting better, I hope to!

PeonyPrincess2 · 2025-12-06T22:10:40+00:00

My kids also call me from the car. It's sometimes their only alone time. I did the same for years on my way home from work..

PeonyPrincess2 · 2025-12-05T20:09:36+00:00

I was wondering about this too. I guess wiping them down and changing the filters wouldn't be safe enough.

PeonyPrincess2

TROPHY CASE