Oh hey, apparently today is Mastocytosis & Mast Cell Diseases Awareness Day, which I was uhh...not aware of til just now.

So I guess I’m going to thread a bit about my symptoms, diagnostic experience and why and how I’ve been biohacking my #MCAS

I first started showing symptoms of MCAS at age 4, when my mother took me into urgent care when I woke up from a nap with my torso covered in hives.

The doctor noticed I had petechiae where I’d been scratching, which is often described as a rash but is actually a smattering of tiny, pinprick like bruises, which is distinctly characteristic of bleeding disorders, and often blood cancers.

That doctor, and every other doctor I saw for a year or two after that got really fucking excited because cancers are one of the few things they’re actually semi-competent at diagnosing as long as you’re white.

It was not cancer. Or AIDS. Or lupus. Or haemophilia. Or von Willebrands.

After a while, they decided it was just idiopathic thrombocytopenia purpura, which was fine because my counts weren’t low enough to cause spontaneous bleeding. They reassured me I was really very healthy.

They never got particularly worried about the fact that I *did* experience spontaneous bleeding, or that my bleeding time tests (back when they still did those) came back off-the-charts abnormal.

They weren’t particularly worried when I talked about how I often felt like I was running a fever even though I wasn’t, or when I collapsed wheezing in a change room after a swim practice, or when my GI issues got so bad that I was too scared to eat anywhere but my apartment.

Anyway, fast-forward to my late twenties. I had severe narcolepsy that did not respond to any of six stimulants, TCAs or atypical antidepressants that I was prescribed. I was sleeping 16+ hours a day. I was in constant pain, running to the toilet at least three times a day,...

...unable to bathe or shower without my vision going black, and I would get hematomas from wearing a wristwatch, or when my parents’ cat sat on my chest.

Someone on here recommended that I look into EDS and MCAS, and things gradually started to click.

Even then, when I finally got to see an allergist who specializes in MCAS, I only got a clinical diagnosis of MCAS and that only barely.

My lab tests all came back negative, and my most debilitating and concerning symptoms (the narcolepsy, the bleeding, the widespread pain) were not symptoms that are considered dinstictively characteristic of MCAS.

And common, characteristic symptoms like hives and anaphylaxis? I didn’t get any of those. (I thought.)

But when I’d first asked for a referral my family doc had basically shrugged and told me to just try antihistamines and see if they helped..and they had.

So I got the clinical Dx.

And that was where any and all help I got from clinical medicine for my MCAS began and ended.

I gradually began to connect more of my symptoms to MCAS - and realized that thing where I’d collapsed after swim practice, apparently crying to the other kids and their parents that I was dying - was probably exercise-induced anaphylaxis.

Which probably also explained why I felt fluish—down to the “fever,” stomach upset and sneezing—every time I exercised, and why every time I tried to get into the habit of exercising I’d gradually get sicker and sicker until I’d eventually have to quit again 3 or 4 weeks in.

When I brought this up to the allergist he laughed and told me to try some different antihistamines.

“They’re over-the-counter, so it’s easy to experiment.”

Around this time I’d also started wondering if my narcolepsy could be connected to my MCAS.

(When I asked the allergist about this, based on the role histamine plays in sleep-wake regulation, he replied, “I’ve never heard of histamine being involved with sleep.”) https://twitter.com/alexhaagaard/status/1075938093834878977

So I realized that if I wanted to see any kind of improvement to my quality of life, I was indeed going to need to “experiment.”

So I did. https://medium.com/@alexhaagaard/2-years-of-biohacking-8e99b32bb350

Currently, these are my protocols:

40mg cetirizine (H1 blocker; mornings)
2mg dienogest (progesterone, helps stabilize mast cells)
500mg quercetin (mast cell stabilizer)
750-900mg famotidine (H2 blocker; night-time)

400mg luteolin (mast cell stabilizer that readily crosses blood-brain barrier; expensive but has been nothing short of miraculous for my mental health symptoms - acute, intense depressive episodes are one of the symptoms I experience during mast cell flares)

1500mg vitamin C (mast cell stabilizing properties; some old, admittedly low quality in vitro evidence suggesting it may antagonize heparin, which is released by mast cells. Fun fact: heparin is not only an anticoagulant, long-term exposure to it can cause thrombocytopenia.)

2000mg chondroitin sulfate (experimental; chondroitin has been found in vitro to inhibit connective tissue mast cells so I’m curious to see if it does anything for my hypermobility)

~~Narcolepsy Protocol~~

Morning:
2000mg Kutaja (aka Holarrhena antidysenterica; H3 blocker)

Bedtime:
50-75mg diphenhydramine (H1 blocker that readily crosses the blood-brain barrier, and which has a relatively short biological half-life; dose depends on if I’m flaring)

Anyway, as always, massive credit to my fellow #MCAS folks on here and to Dr. Google, and a hearty fuck you to every one of the professional offline doctors described in this thread.

Addendum: https://twitter.com/alexhaagaard/status/1318716528771072000

Oh, and I also use Opticrom (eye drops containing cromolyn, another mast cell stabilizer) as like, an all purpose treatment for skin issues. It’s pricey but when I get nasal sores or welts/blisters, it cuts the redness and swelling within hours.

Also also: this shit is expensive. I’m very privileged to be able to afford all these things, because the thing about biohacking is, it affords you more agency, but it means paying out of pocket.

I started small and as I’ve been able to afford more, I’ve experimented with more.

If you’re in that position, newer-gen H1 blockers and quercetin are a good starting point for systemic and cutaneous symptoms.

H2 blockers and quercetin help with GI symptoms.

The daily cycle of morning H3 blocker/nighttime old-school H1 is for severe sleep cycle issues.

Luteolin, at least for me, had been nothing short of miraculous. I do not tolerate pharmaceutical antidepressants (I’ve tried a lot of them). Since I’ve begun taking luteolin I’ve felt happy more days than not which is...not a thing that I can remember ever experiencing before.

But it’s VERY expensive and especially hard to get if you’re outside the US.

Edible plants that contain it in relatively high quantities are radicchio and chicory greens.