mcad

Half a million dollars to find mast cell disease alvin March 29, 2017 - 3:47pm

In retrospect it’s humbling to see that doctors spent about half a million dollars over the last 5-7 years to figure out my illness. If more doctors knew about mast cell disease the total cost could have probably been 1/10th of that.

This makes me look forward to the day when doctors have better software, and are willing to use it. (Every time I watch an episode of House I think, “Use a computer!”)

Why am I always sick? (or, “Why are you always sick?”)

“Why am I always sick?” That’s a question I used to ask myself a lot.

Other people asked it as well: “Why are you always sick?”

I remember one time when I was in the same room as my wife while she was on the phone. She was taking to her sister, who was talking about her husband (my brother-in-law), and their conversation went on for quite some time. Afterwards I said, “Wow, I hope you guys don’t talk about me all the time like that.” My wife said, “No, we just always say that you seem to get sick a lot.”

Feeling like I have been drugged

When I was very sick in 2015-2016, I used to tell my doctors it felt like I had been “drugged.” When I could see that they couldn’t understand or believe that, I’d tell them that it felt the way you feel after surgery, groggy and woozy.

For the most of this year I’ve been eating very well, but yesterday I went to see a movie (Logan) and had some popcorn. Shortly after eating the popcorn I started to feel sick, and today I feel like I’ve been drugged.

This — as I have learned — is life with mast cell activation disease, known as MCAD or MCAS.

Ratio of women to men who have mast cell diseases

From what I can tell by the interactions on the The Mastocytosis Society group on Facebook, there is at least a 10:1 or 20:1 ratio of women to men who have mast cell diseases. Or, more accurately, those are the ratios of people who (a) know they have mast cell diseases and (b) interact in this group on Facebook.

MCAS/MCAD skin reaction

My immune system has been struggling the last two weeks since I had some bad Kroger yogurt. (The yogurt didn’t taste bad, but I got very sick within an hour of eating it.) Today I put a mala on my wrist like I have 10-15 times this year, and after a little while it felt like it was itching and burning. This is what my skin looked like almost half an hour after I took it off. I’m assuming that this is a result of the mast cell disease (MCAS).

Natural mast cell stabilizers

Per this article on healinghistamine.com, some natural mast cell stabilizers are: Khellin; Quercetin; Epigallocatechin gallate (a green tea compound); Silibinin (from milk thistle); Ellagic acid; Reservatrol; Curcumin; Garcinia mangostana (mangosteen).

The author further states, “Also in the bioflavonoid family are luteolin and apigenin, the latter of which can be found in parsley, celery, rosemary, oregano, thyme, basil, coriander and artichokes.”