My Long Nightmare Is Ending
After eighteen years, diagnosis & treatment
Executive Summary: I am about to get control of the immune disorder that has kept me mostly out of the job market for the last eighteen years. I will be able to sleep a normal adult schedule, and thusly WORK a normal adult schedule.
This is coming, but it’s not here quite yet. I still need some stuff from Amazon and travel funds for the month of August.
Astonishing Serendipity:
Right after my surgery at the start of July I began fiddling with Claude Desktop, feeding it stuff about my health, and creating a daily diary system using MCP servers. Just a week into it, in Surgery Status: OMG I reported that I might have finally isolated why I’ve been so sick for so long - histamine intolerance.
That was NOT correct, but in pursuing it Claude kept mentioned something called MCAS, which I learned was short for Mast Cell Activation Syndrome. I found I have all of the symptoms, except for the skin stuff, and that a high tryptase level is a key indicator. This is from blood work on August 1st, twelve hours after I’d last eaten. Among a pool of healthy adults the median would be around 3.8. That number, after that much fasting, given that my trouble is GI focused, is pretty telling.
These two supplements showed up August 5th and I got started immediately. Quercetin and Luteolin both work as mast cell stabilizer, reducing the chance mast cells will blow out, or “degranulate”. Even when one has a prescription for the problem, it’s very common to find these still in a support role.
So I took them, waited an hour, then had eggs and salsa. I still had an MCAS reaction, but it was muted compared to the norm. Instead of being knocked flat for a number of hours, I felt a little funny for a half an hour, then that started to fade. Later I ate some crap I should avoid, and got a half hour nap and an elevated heart rate for my trouble.
So there was a notable improvement after just a single dose. I had my next dose for the day at 2200, as I’m drafting this, and I’m peeking in the fridge, trying to decide what the next experiment will be.
I have an appointment with an immunologist on August 12th. They will do a 24 hour urine test for histamine metabolites. I may be asked to cease remediation, eat something that will trigger an episode, and then go for a blood draw. I don’t think a formal diagnosis will take very long, I can produce a reaction on demand and that fasting number is 99.24% of a diagnosis all on its own.
Once that is done they will likely prescribe Cromolyn, which is a prescription method to encourage mast cells to just STFU, instead of freaking out and degranulating at the slightest stimulus. They may also prescribe Singulair, which serves in the same role as Allegra and Pepcid - heads off the inflammatory stuff after it’s been released.
There are other drugs than those, but my kidneys are a constraint that will keep a number of them on the forbidden list.
Conclusion:
There are six amino acids I’m taking for overall gut health - $87 on Amazon for a month. I’ve run out of one and two others are low.
The vitamins and minerals I take are $92 on Amazon, but that covers about two months. This is OK for the moment, except for 5-HTP.
I just looked in my closet and it definitely communicates “hasn’t been to the office … in a couple decades”. San Francisco is pretty casual, but I’m not sure hiking boots, denim, and t-shirts is going to cut it. I will need a couple changes of “can be trusted with important infrastructure” clothing.
And I suffered a serious insult on the travel front this month - I used to own a really nice Dahon folding bike. Past tense. It was inside the back porch, but the door was unlocked … so this loss will add to my ride share costs. I’ll replace it the minute I’m employed, but not until then.
Assuming things continue at this pace, by the end of August I should be physically able to commit to some sort of grownup’s employment, and the search will begin in earnest.
Until the I would still happily accept whatever assistance you guys can throw my way.
And Home At Last seems quite apropos this evening.
Well the danger on the rocks is surely past
Still I remain tied to the mast