MCAS

Do a search about MCAS on the forum and you will find a lot of us have it. Some find it very helpful to treat, not only to relieve symptoms but to increase tolerance of other treatments and give the immune system a break, so we can make progress!

I never had the stereotypical MCAS symptoms like flushing, rashes, hives, and congestion. For me, the main symptoms are brain fog, fatigue, headaches, dizziness, and GI distress. When I switched to a low-histamine diet, I never had brain fog again. For some, a low-histamine diet is sufficient to control symptoms.

Quercetin seems to be the go-to supplement with the fewest possible side effects and most effectiveness. People also take bromelain, DAO, and freeze-dried stinging nettles. There also are drugs, such as cromolyn sodium, which stabilize mast cells. Some find DNRS limbic system retraining helpful for MCAS.

People use a tryptase test, but it has to be taken within 12 hours of exposure to your trigger. Ditto for histamine tests. In the options of my doctors, the tests are unhelpful because so many variables are involved. Many people just diagnose based on symptoms and response to treatment, since the treatment can be so benign.

What are your triggers? Heat and cold, stress, exercise, allergens, showers, abrasive fabrics, foods, pollutants, mold? Once we are sensitized by any one of those things, especially with Lyme in the mix, we can start reacting to more and more things!

Check out the book Toxic by Neil Nathan for more ideas for how to treat MCAS when it appears alongside the other maladies so many of us have (Lyme, Bartonella, mold toxicity, chemical sensitivities, etc.).

Okay, I just barely answered your question. Yes, your experience sounds like a histamine issue to me. (How frustrating that must be!) Yes, I have had significant success treating MCAS. A low-histamine diet and quercetin were the most helpful treatments.

My last LLMD told me I had MCAS, no tests confirmed. I was having various reactions to almost all foods - some caused itching or burning in my mouth, some itching all over my body, most caused reflux and heartburn, some made me go insane with rage. Eventually I had a stomachache all the time. I believe it was the result of 1.5 years of abx destroying my gut and immune system.

That's when I switched to Chinese medicine - I couldn't tolerate the drugs anymore. Until CCM herbs and acupuncture cleared up the infections and damage, I managed my histamine symptoms with bromelain, quercetin, nettles, and vitamin C taken before meals. I bought them separately as I couldn't find any combined supplements that didn't have unwanted fillers, and I needed corn-free vitamin C (most ascot is acid is from corn). I also followed a low-histamine diet and rules from the SIGHI list (google it.)

I didn't want any OTC drugs - the fillers in them just made it worse.

I'm doing much better now, I'm actually completely off Allegra for the first time in 20 years! I take no OTC meds. I have stopped using the SIGHI list, and only follow the rules of keeping food low-histamine (no ferment, only frozen meat, freeze all leftovers) and sometimes I cheat on that with no issues. I'm adding back foods all the time.

I'm super glad I went the natural route - my LLMD would have had me on triple doses of OTC H1 and H2 blockers and cromolyn sodium. I tried his way for a few weeks but just got worse.

Classical Chinese medicine is my cure-all. Loving it!

I have MCAD and have been unable to treat Lyme due to horrific flares from most herbals, abx and supplements. Cannabis is a strong mast cell stablilizer so I make cannabutter (cannabis infused coconut oil) which has given me my life back. It also keeps the Lyme symptoms under control. I was also helped by ketotifen.

I have found following a low histamine diet to be helpful. As far as supplements I tried quercitin and bromelian in a supplement together, and also allergy focused supplements combining nettles, quercitin, etc, but didn't find them significantly helpful. I also tried a DAO supplement and that didn't help me. When folks say quercitin, do you mean straight quercitin? In what amounts/doses?