Masto-Cyto-What??

Mastocytosis. Or in my case, Mast Cell Dysfunction, is the new name of the game. That changes things.

What does it mean? What the hell is it? Why didn’t anyone else figure it out? Well that’s a loaded question. Essentially it all comes down to inflammation. Mast cells are a normal part of everyone’s body. They fight off allergic reactions and respond to danger in the body. My problem though? My Mast cells think everything is dangerous and keep attacking.

I’ve been having such a hard time even writing this because of the lack of strength I have now, but I need to write this to break it all down and process. Here’s the 411 abridged version. We traveled to UNC to see a new doctor who is both a researcher and a medical doctor. After a number of blood tests prior and his examination, he related my condition to a finding in Japan of surfers and divers being stung multiple times by Blue bottles and developing a Natto allergy [fermented soybean] out of the clear blue. New research is showing that the skin biome and the gut biome are linked and impact one another. So operating under that theory, the Man O War sting triggered a Mast Cell activation/ Dysfunction that has emerged in all these strange ways. Everything from the sudden stomach problems, to the abdominal pains, to the crazy allergic reaction he’s never seen before in my mouth, were all signs of those cells triggering. Now here’s the really confusing portion. Mastocytosis or Mast Cell Dysfunction usually shows elevated trypase, histamines, allergy markers, white blood cells, etc. etc., I do not present that way. However, just because it’s not on the top of my skin or in that particular blood sample, doesn’t mean it isn’t occurring. The doctor believes that even if we spent a decade trying to unearth every biopsy, blood sample, and test we could do, we wouldn’t be able to pinpoint what exactly is the difference because we don’t know what to look for.

So what does that mean for treatments? Well CRPS is still at play here. It is a known autoimmune, auto-inflammatory condition that has been seen to link to Mast cells, but again in unknown ways. The current treatment plan is a hefty dose of steroids to stop the constant reactions, a stomach muscle relaxer to keep the food items down, and a medication called Cromoyln. Cromolyn is one of the only Mastocytosis treatments out there and works in around 25% of cases. It takes between 2 weeks- 2months on a full dose to see if it is indeed working. But we’ve already run into a problem. Since traveling back from UNC my body has kinda just given out. Even though the nut allergy and other food allergy panels came back saying I’m not actually allergic to things, we have to operate under the “epi pen allergy reaction any time any where” protocol with everything around me. Like everything, from temperature to moisture to air flow. Add that into the fact I’ve really not been eating in over 2 months, my body is nutrition starved and crumbling fast. When we started the Cromoyln dose, we had no idea how far apart they needed to be spaced, how diluted, how quickly can you start taking it. All of those questions result because NO ONE HAS THIS FRIGGIN DISEASE. There aren’t enough people to get a really effective study.

So suddenly we shocked my body with steroids, and this crazy new medication and the world flips upside down. Metallic taste in the mouth [ok I can’t really taste it but it reminds me of biting tin foil constantly], chest pain, burning from the inside out, hot feet, dizzy and lightheaded, shaking, vomiting, nausea, you name it. And we had to stop and go slower taking the medicine. So that sets me back even further in the recovery time line. Now lets pile on some more. Sleep isn’t happening anymore because none of the medications work. Taking my daily medications is a round the clock, 3 person ordeal to keep it straight. Every time I eat something, 10-20 minutes later I’m choking on it trying to get it to go down. I’ve passed out, puked until I couldn’t hold myself up right, wheezed my way through a night, and straight up watched the world flip upside down. Now if that’s not enough to make your head spin, trying being my parents watching this and have zero idea what the hell to do. And sadly there is nothing they can do. My vision will go blurry, the world goes monochrome, nothing interests me, and things seem to move in slow motion all while just trying to sit up. So times I’m lucid as hell [right now is a bright light but I can hardly remember what I have already types] and sometimes I don’t know where I am. Sometimes food is fine, sometimes I can’t even swallow. My head will hurt and I know my circulation is low or my blood pressure has dropped or the blood sugar is too low, but there’s nothing we can really do about it despite trying. No doctor could do anything but try to stabilize me and send me off home. Fluids? Check, we’re really pushing those as much as we can. Bland Diet of soft food? Check, I really am starting to hate bagels and mashed potatoes, (even flan has gotten boring too). Low Histamine diet and low stress environment? Huge Check, there’s literally nothing to do but try to read or watch a movie [if I can pay attention]. Hypothesis about the world? Sure that’s going to happen anyway, I’m bored! But what else is there. The worlds kinda lost its sparkle.

But enough about the woe is me. There’s plenty of that to go around. Let’s look back at this Masto-Cyto-Craziness and break it down a little further. There are a whole bunch of different kinds. Typically, this condition is seen in people with sever sensitivities or allergies [I have like the lowest score ever…] and frequently in children or older adults [55+]. Typically in children it’s a strange rash and goes away on its own after some time. Adults, not so often. These mast cell collections gather all over the body. Anywhere form the gut, to the bone marrow [most commonly found in there], to the connective tissues. They stand on hyper alert like a mother protecting her babies, and swoop in to stop reactions, by attacking what it thinks are bad, dangerous invaders. Except there are no invaders, or at least dangerous ones. In reality it’s usually just the body being normal, circulating some blood, digesting some food, breathing. So we are back to a system wide attack on my own system. This creates a cycle of sorts where it’s a delicate balance of shutting off the ability to react while preventing it from finding new ways to react to things. The best way I can describe how it feels when it kicks on is like every single neuron inside of me flipped a switch and forgot how to body. I burn from the inside out. Inside my bones, my throat, my chest. My throat forgets how to swallow, my stomach how to digest, and even my chest seems to have a problem breathing in air. But those are just the symptoms I can report. You cannot physically see the esophagus struggling to swallow unless you have an Xray, or watch the burning from the inside out occur. So unfortunately, many patients with this condition get pushed aside and told to go to therapy [DOES THIS SOUND FAMILIAR CRPS FAMILY??]. So many other patients with this condition have these symptoms too [It’s like reading my own diary when I read about what other people are experiencing and describing in ways that would only make sense if you’ve had it].

But the facts and symptoms and science are all here. Just because this case doesn’t have those “high level markers” or known sarcoma cells that can be easily seen doesn’t mean it isn’t just as risky and dangerous. And without more people actually looking into this, there is no treatment or plan that will change. There is a good chance I was born with this condition and the jelly sting was the triggering event. That monster level dosage could have flipped all the switches and here we are. It’s well known that people with this condition, especially if its a genetic defect, may not have a triggering even except to venom or poisons. So now where do we go? Well, I go on trying to find the positivity in things. Remind myself that every day might be better than the last and if we go backwards, well that means tomorrow is just going to seem all the better.

All I can say is thank you to the friends and family who have stepped in to be there from my family and I. I hate being so out of it and dazy sometimes I don’t really know there there or get fairly lucid and then zone back out, but thank you. Thank you for calling your doctors, and friends of doctors, and so many other people to look at this chaotic, almost impossible tale and trying to sort it out. And thank you to everyone else who has stuck around. This sucks. It really does. My parents didn’t get to really even enjoy the 4th of July because they were running back over with my neighbor to stop a vomiting episode with me. But the fact we have the kind of neighbors and friends who will drop what they are doing just to provide that shoulder of, it’s going to be ok, it means everything.

At some point, when my head gets little less foggy, I’ll rewrite this with more clarity and much less of a “stream of sorta consciousness” vibe.

Stay strong my friends.