A hitchhiker kicked my ass, but I’m temporarily free of MCAS

In typical mast cell activation syndrome (MCAS) fashion, the last day of the AKC National Agility Championship was a bit of shock. I try not to set expectations, because it’s impossible to anticipate all the variables that could trigger a MCAS reaction, but still, even after five years of diagnosis, my mast cells surprise me.

After finishing my run at 10 am and touring the Gilcrease Museum gardens in memory of my grandma, Team Quixote left Tulsa enroute to Kansas City to break up the drive back to Minnesota. By the time we got to a SAFE hotel room, I was delirious with relief, exhaustion, and vanilla.

On Monday, Team Quixote arrived back in Minnesota. I could not wait to wash all my clothes, bathe the dogs, and rest. I began my prednisone taper and Julia returned home, but the excitement continued. On Wednesday, ESPN profiled Quixote and me on the broadcast of the AKC National Agility Championship. On Friday, my local newspaper interviewed me. Read the article.

I felt incredible the entire week, despite completely coming off prednisone. I have said agility is my medicine, but this was suspiciously the easiest prednisone taper I had ever experienced. It was as if I hadn’t tapered at all.

So when I suddenly felt terrible on Tuesday, nine days after our return home, I assumed it was the prednisone taper. I hopped into bed, accepting my punishment for a successful trip, and turned on some terrible reality TV. My foot itched, so I unrolled my sock to reveal to red bumps. Nothing extraordinary for the MCAS patient, but it kept bothering me, so I pulled off the sock.

A TICK!

I instinctively poked it and that demon just rolled right off because it was so engorged. I screamed, so Sancho tried to eat it, as if that would save me. Somehow, I managed to slide its fat, gray body into an empty pill bottle, secure the lid extra good, put it in the refrigerator, and then shut the refrigerator door extra good.

I knew nothing about ticks but sometime during my full-blown panic attack I managed to send pictures of it to the TickEncounter at University of Rhode Island. Yes, I had pulled ticks off me at the Gilcrease Museum, but we did tick checks in Kansas City and when we got home. And we had been home for nine days! I did not tell the Unversity of Rhode Island I had been traveling. Luckily, they responded in a couple hours:

“Hmmm….this is an unusual tick for your location; you’ve encountered a nymph Lone Star tick (Amblyomma americanum). This one looks like it was attached and feeding for 2-3 days.”

OKLAHOMA HITCHHIKER! *cue the screaming*

“You may be interested to learn that Lone Star ticks do not transmit Lyme disease bacteria, but they are aggressive biters and can transmit some other nasty germs. Studies suggest that about 10% of Lone Star ticks may carry Ehrlichia chaffeensis, the germ causing human monocytic ehrlichiosis, and Borrelia lonestari, a non-Lyme disease borrelia. In some people, bites from Lone Star ticks have been associated with development of a condition called STARI (southern tick-associated rash illness–cause unknown), and also development of a curious allergy to red meat.”

ALPHA-GAL ALLERGY?!?!?!! *more screaming*

So basically, this nightmare was living with me all week, probably in my shoe. I had no idea that was a possibility. I’ve become accustom to many medical terrors over the last five years, but the horror of an insect visibly feeding on my body for 2-3 days without my knowledge provoke an identity crisis.

I am clean?!?!?! I know my body?!?! I know I disassociate, but 2-3 days?!?!? I CHANGED MY SOCKS TWICE TODAY.

I considered burning my condo down, but I decided that might be unfair to the other residents. The poodles were fine, probably because they don’t wear shoes in the spring.

The next morning, I found two more pus-filled lesions on my stomach in addition to the two on my foot and a slight fever began. Luckily, I started compounded doxycycline by the afternoon. On Thursday, two more lesions appeared on my hip, one with a bullseye. The fever continued and a knife-like pain shoot through my right Achilles tendon. By Friday, I could no longer walk on the foot, so I went to urgent care to check my blood, liver, and kidneys, which were fine.

The inflammation in my right foot tendons spread to my left foot, and I haven’t been able to walk without crying for NINE DAYS. Sleeping is difficult and living alone feels impossible. While my dogs try their best to help, we disagree on basic upkeep like how to wash the dishes.

“I think you are low risk for an Achilles rupture,” my primary care doctor said.

“That’s what they said about my CSF leak,” I replied.

Even if there was a way to conclusively know which bacteria the Lone Star tick transmitted, doxycycline is the treatment. (My test for ehrlichiosis was negative, but I had already started the antibiotic. I did send the tick in for an autopsy.) I am certain the inflammation is related to hEDS, and doxycycline helps protect inflammation for damaging connective tissue like tendons. Doxycycline also inhibits mast cells, which is interesting because…

My MCAS appears to be in remission.

Many MCAS patients experience less MCAS symptoms when their immune systems are actively fighting an infection or recovering from an injury. I tend to feel my best after a surgery, even without pain medication. I tend to confuse people when I win first place in agility two days after surgery. For me, I have less gastrointestinal pain, my joint glide easier, and my whole body feels lighter, when my immune system is busy.

Now I’m not recommending weekly surgeries or tick bites to control mast cell disease. However, if your MCAS does go in remission, I am recommending jalapeno tamales. So far, I’ve eaten four of them and they weren’t even spicy. Even on prednisone, I normally wouldn’t be able to tolerate a bite. Now, I’m enjoying beans, onions, garlic, tomatillos, jalapeños, and polite pooping 12-14 hours later.

The wildest part is despite my digestive fiesta, for the first time in five year, my geographic tongue has completely healed. Many MCAS patients have smooth, red patches on their tongues, indicating inflammation of the gastrointestinal tract. (Histamine and other inflammatory chemical released by mast cells can destroy the digestive lining.)

I certainly wouldn’t trade tamales for the ability to walk, but I am trying to enjoy them before my world flips again. I am very worried about alpha-gal allergy. Basically, it is an IgE allergy to red meat that can develop 1-3 months after a Lone Star tick bite and mast cell disease is a risk factor.

All the vegans and vegetarians are like, “Boo-hoo, so you can’t eat red meat. Get over it, murderer.”

MCAS really limits my safe food, but I’m mostly concerned because MCAS also really limits my medications. Right now, the only capsule I tolerate at my compounding pharmacies is made of gelatin. At least two of my medications contain gelatin, and not sure about alternative solutions. Liquids cause more logistical problems, as if I don’t have enough already. I have no idea if/when my medication will cause anaphylaxis.

In short, I’m just waiting to scream, “They’re baaaaccck,” when my mast cells blow up my body. In the meantime, I’m going crawl across my condo and stuff another jalapeño tamale in my face.

May Update

I am still in remission taking doxycycline daily, in addition to a basic mix of first line treatment. I can eat and do whatever I want. When I tapered down the doxycycline, I started to have symptoms. I have stopped my dysautonomia medication because I no longer have symptoms and my resting heart rate is consistently 71 bpm or lower!

According to a mast cell specialist, a small subset of MCAS patients have also experienced reduced symptoms with doxycycline due to its anti-inflammatory properties.

My Lone Star tick test came back negative for the following:

Lyme Disease (B. burgdorferi)
Relapsing Fever (Relapsing Fever Borrelia)
Ehrlichiosis (Ehrlichia and/or Anaplasma)
Bartonellosis (Bartonella)
Rickettsiosis (Rickettsia)
Babesiosis (B. microti and/or B. duncani)

So we’ll never know that exact cause of my infection. I’m still not sure if I have alpha-gal allergy because I haven’t eaten meat since going into remission and it may be too soon to check for antibodies.

Be sure to check out my Instagram for videos of my remission adventures!

10/7/21 Update: My Alpha Gal IgE test is negative.

11/19/21: New research offers clues about why doxycycline may have eliminated my hEDS symptoms. Read the study.

The soup that helps me survive winter

I have never enjoyed cooking food. Maybe it’s because most food hurts me. Maybe it’s because standing in the kitchen makes me dizzy and exhausted. Maybe it’s because during my first cooking lesson, my mother told me that my great grandmother died in a cooking fire.

However, my body demands home cooked meals. Soy, garlic, onion, corn syrup, lactose, salicylates, and high-fiber foods make me feel like I’ve swallowed a demon. High histamine foods, basically all the remaining foods, make me puke within 20 minutes of ingestion. It’s easier to explain what I can eat: fresh, plain meat; potatoes; rice; bread; and butter.

This makes lunch at work incredibly difficult. I cannot breathe in restaurants, and there are no safe takeout foods. I cannot eat refrigerated food, which increases histamine, but frozen is okay.

My friend encouraged me to make soup, which sounded tasty. However, when I learned her recipe involves roasting a chicken and simmer the bones, I abandoned the idea. The only thing I roast are bad healthcare providers.

I don’t appreciate food enough to spend hours of my precious energy preparing it. I often remind myself that in the event of a zombie apocalypse I will die because I don’t know how to roast a squirrel. But let’s be honest, I probably can’t catch a squirrel and I’d probably die from running out of my medications first. I’d be lucky if I lived long enough for a zombie to eat me.

This year, when Minnesota’s windchill dropped to -50F, my body demanded soup. I scoured Whole Foods for a gastronomic compromise. To my delight, I discovered the nectar I’d been longing for: a chicken broth made without garlic or onions. From then on, it was surprisingly easy to develop low-energy soup recipes.

Here’s my recipe for chicken noodle soup:

Think about making chicken noodle soup. Eat air sandwiches for lunch and sleep through dinner time until you are so hungry that you can’t feel your joint pain anymore.
Eat cereal for energy to go to the store.
Go to Whole Foods at 5 pm, because that’s when the rotisserie chickens are fresh. Buy one plain rotisserie chicken, celery, carrots, green onions, and 48 oz of 365 Everyday Value® Organic Chicken Broth. Pray that you still have basil, thyme, and pasta at home.
Eat part of the chicken and take a nap.
Maim the celery and carrots. I hate celery and carrots. They taste shit and aren’t going to cure me. But I eat them just in case.
Sauté the vegetables in garlic oil if you feel fancy.
Squirt the box of chicken broth into a pot over the vegetables, emulating the sights and sounds of colonoscopy prep. This is my favorite part.
Dump basil, thyme, and pepper into the pot until it looks pretty and bring the broth to a boil.
Add 2 cups of tri-color rotini because curls have more fun. Boil for 7 minutes.
Remove from heat, add chopped chicken and green onions, and stir until you get tired or bored.
Spoon into Pyrex bowls and freeze.
Tell the poodles to do the dishes.

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Candy WAS dandy

“Are you sure you don’t want to come with us?” my mom asked, standing in my bedroom doorway, alongside a petite, but bloody vampire.

“Nah,” I said, barely looking up from my book. I was thirteen, officially too old to tour the neighborhood with my mom and little brother, and all of my friends had retired from trick-or-treating.

As soon I heard the door slam, I dropped my book and sprinted to the living room window. Behind the curtain, I watched them turn right at the end of the driveway and disappear into the darkness. The silence of the house filled me with anticipation.

Back in my bedroom, I changed my clothes: black leggings and a black sweatshirt. I ripped the pillowcase off my pillow, grabbed the cat mask I had dug out of storage a few hours earlier, and laced up my running shoes. I snuck out the front door, undetected by my dad. At the end of the driveway, I turned left and burst into a full sprint.

The purpose of Halloween is candy. It’s not about visiting with your neighbors, or spending time with your friends; it’s about collecting the most candy. That year, I decided I was going to collect the most candy ever. Goodbye pokey family and doorstep chitchats. My mask would give me the anonymity I needed to speed up my hustle. I did not walk door to door. I ran.

I ran like a thief in night. Literally. I took more than my fair share of those unattended bowls of candy left on doorsteps. I learned to time my approaches perfectly, sliding into other groups just as the homeowner opened their door and the kids held out their bags. I rarely had to press the doorbell and wait. Sometimes I didn’t even say trick-or-treat.

Only the weight of the pillowcase could stop me. I returned home cradling my 20-pound pillowcase in both arms. I dumped its contents on my bed, admired the assortment, and congratulated myself. I rewarded myself with my favorite kinds first, but it didn’t really matter. I was going to eat it all anyway. It was just a matter of time.

Thirty minutes later, my mom and brother returned home. When my mom opened my bedroom door to tell me how I had missed out, she found me grinning wickedly surrounded by wrappers.

******

Skittles were one of my favorite candies. Particularly the purple Skittles. I think I started buying them from the office vending machine to try to beat the afternoon slump. This was four years ago, when my digestive issues were beginning to get severe. I was avoiding dairy and soy, so Starbucks was no longer an option. I had cut out gluten, and was resorting to all fruit smoothies for lunch, but my gut and butt were still angry.

A bag of Skittles seemed harmless given my current state. At least it would help my mental health, I justified. I spread the tiny spheres out on my desk, admiring their bright colors, as if it would slow my consumption. As soon as they were gone, I wanted more. My coworker caught me with the second bag and warned me I was going to be sorry. Maybe, I said, but I was going to be happy first.

One hour later, the Skittles started punching me in the stomach. I continued to work at my desk, accepting my punishment and accustomed to digestive pain. Suddenly, a sharp, overwhelming urge rushed me to the bathroom. I pooped the entire rainbow for the next 30 minutes.

If you know me well, you know this did not discourage me. In fact, they next day, I ate two more bags of Skittles and again, pooped my guts out. I wasn’t surprised by my belly ache, but the ferocity of the Skittles shooting through my system was terrifying.

I googled my symptoms and discovered fructose intolerance. People with fructose intolerance can’t digest foods like corn syrup, which is in everything! I refused to believe I could no longer eat my beloved candy, so I keep eating the Skittles for a full week. I spent a lot of time in the bathroom that week.

Eventually, I realized not only were the Skittles making me sick, but my lunchtime smoothies too! I thought all fruit smoothies were the ultimate health food, but I was wrong. It turns out a lot of supposed healthy foods make me sick. Soon after, I discovered the low FODMAP diet and have stuck with it ever since. My hypothesis is mast cell disease destroyed my body’s ability to create many enzymes necessary for digestion.

Now I binge on corn syrup free jelly beans. Sometimes by the package. You can take the fructose out of the candy, but you can’t take the candy out of me.