Post your MCAS supplements.

Quercetin, curcumin,

I think taurine may be as well

Xyzal at night.

NeuroProtek - if this is the one in a red gel cap, it didn’t sit well with me. Had trouble swallowing and felt like I was reacting to the gel cap

AllerDHQ

DAO - may have helped some with reactions to food

Cromelyn Sodium (Rx) - have it, never tried it

My LLMD has me taking Pepcid and Allegra in the morning and the prescription drug Ketotifin 10 mg at night. I also avoid histamine foods and take Quercetin and Curcumin.

Patty

Question?

What are your mcas symptoms?
Triggers?

I was watching a video with this endocrinologist MCAS specialist. Has anyone ever gone to her? She located in NY state. she's very familiar with Lyme and co.

Triggers:
Pollen and dust
Mold
Fragrances
Body products
Laundry and cleaning products
Endotoxins from die-off (herxing)
Abrasive fabrics
Showers
Heat
Cold
Stress
Exercise
High-histamine foods (ferments, tomatoes, vinegars, citrus, leftovers, alcohol, overripe fruit, etc.)
High-histamine supplements (some strains of probiotics, lion's mane mushroom, etc.)
Poison ivy
Insect bites and stings
(When you're in the middle of a bad flare, even drinking water can give you symptoms. You just have to reduce all histamine release, take the meds or supplements that you choose, and wait.)

Symptoms (this is just a few of the most common ones, and most with MCAS don't have all of them):
Skin issues (especially rashes, itching, flushing, and hives)
Digestive issues (especially reflux, diarrhea, and cramping)
Reactions to foods, drugs, or supplements (more sensitive than others)
Brain fog
Anxiety (possibly also panic and irritability)
Headaches
Dizziness
Sinus issues (congestion, sneezing, etc.)
Sore or scratchy throat

Supplements:
Quercetin
Curcumin
Stinging nettles
Bromelain
DAO
Homeopathic histaminum hydrochloricum
(Quercetin and curcumin seem to be the most common and least prone to causing side effects.)

Drugs:
Cromolyn sodium
Ketotifen
H1 blockers
H2 blockers

DNRS limbic system retraining also can help your body stop overreacting to perceived invaders.

Seriously read Neil Nathan's book Toxic. It's a road map for people with complex symptoms, including MCAS, Bartonella, and mold illness.

While it's good if your doctor is familiar with MCAS and the need to treat it before attempting to delve too far into other types of treatment, you probably don't need an MCAS specialist. It's usually not that complicated to manage, once you figure out your triggers and eliminate them and/or find the best supplements for you. (As with anything, everyone's triggers and remedies vary.) I would not bother finding an MCAS specialist unless you have severe and intractable symptoms (like anaphylaxis or the inability to eat any food without reacting for more than a couple of weeks). Specialists in mast cell issues tend to treat people with mastocytosis, which is a somewhat different can of worms, and not usually what folks with chronic infections are dealing with.

Yep, the spacey depersonalized feeling (which I file under "brain fog") is my primary MCAS symptom, my first surefire sign that I have been "histamined." I'm not sure there are any quick fixes, but taking Solaray QBC Plex chewables seems to help me clear a reaction faster. (QBC = quercetin, bromelain, vitamin C.) I take quercetin and curcumin three times per day anyway, so those might be part of what helps me as well.

Another option is the oral liquid cromolyn sodium, but that acts faster for gut symptoms.

How do you differentiate MCAS symptoms from lyme or coinfections?

Ortho Molecular Ortho Biotic is the low-histamine probiotic that I take, and it's reasonably priced depending on where you look. I have seen the price quite inflated on Amazon.

You can differentiate MCAS symptoms by removing as many triggers as possible, and by treating for it. The treatments are pretty benign, so it's not a risky thing to try. Some opt for lab testing, but that misses many cases.

I know I keep saying this, but read Toxic by Neil Nathan. I know that a lot of people don't want to read a book when they are stressed and sick, but for a sick person wondering why they aren't getting better, why they don't react to treatment like everyone else seems to, treatment seems to make them worse and not better, why their bodies seem to be out to get them ... this book is a lifesaver. It tells you what to do first. It tells you where to start.

dmw52 said...
and cannabutter (cannabis infused coconut oil). Cannabutter has been a godsend for me. This is a quote from Dr Afrin:

A leading Mast Cell Activation Syndrome expert Dr. Afrin shares his experience with patients who use Medical Cannabis to help with their mast cell disease symptoms in his book Never Bet Against Occam.

“The mast cell surface features (inhibitory) cannabinoid receptors, making me wonder whether at least some of the chronically ill patients out there who claim that the only thing that makes them feel better is marijuana might be unrecognized MCAS patients in whom THC’s binding with the cannabinoid receptors on their dysfunctional mast cells leads to a quieting of the activity of those cells and thus a lessening of symptoms."

I have to second this and say medical cannabis is an absolute godsend for me. It helps like nothing else: alleviates pain, decreases inflammation, brightens mood, gives energy, I can't say enough nice things about it, the relief is so great. Now I don't ever want to live in a state without medical cannabis ever again!

And I have to retract my suggestion for MCAS about Hydroxyzine HCL because of early dementia/acetylcholine receptor concerns. I only use it in emergencies, before sleep, or if I have really bad anxiety. And only half a pill (25mg of a 50mg pill).

dmw52, for me it's a "quality of life" issue and being that late stage lyme disease/neuroborreliosis is so miserable at times, to use a phrase like "God's Gift" doesn't seem inappropriate...

Quecertin
Benedryl (before bed)
Singular
Ketotifen