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

Poodles in the car

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.

If you have Alpha Gal allergy, please share your experience with me! 

My worst Easter

Growing up, my parents were pretty sloppy about their holidays lies. Mostly, they enjoyed sleeping more than I did. When I was six, I discovered my mom hiding Easter eggs in the backyard just before breakfast. Instead of confronting my parents, I quietly watched from my bedroom window, memorizing each of her hiding spots. I didn’t want to ruin the Easter Bunny for my younger brother, but I also didn’t want him to get any of the eggs.

So, when I mom shook me awake on Easter morning at age 7, I was surprised and suspicious.

“Wake up! Wake up! Come look out the window!” she said, pulling back my covers. At first, it sounded like a trap, but then I remembered it was a holiday and there may be gifts involved. I followed my mom and my brother to the dining room window.

The sun had just started to rise behind the tall evergreens in our backyard.

“Look!” she said. I searched the greenery for the neon eggs I’d been trained to find. “Under the tree!”

A giant white mass stirred under the pine tree. It bounced towards the window and stood up: a seven-foot-tall creature topped with a bulbous head and two wonky ears. It waved at us with its white mitten. My brother and I gasped, but for different reasons. The oversized rabbit slowly turned, without moving its neck, and hopped in a circle with great effort.

The tallest person I knew was my dad. It must be dad, I reassured myself.

Just as I was about to take a deep breath, my dad entered the room and exclaimed, “The Easter Bunny is in our yard!”

My stomach dropped.

“WHO IS THAT?!” I demanded, as my heart pounded. The white monster was facing the window again and waving. Its big, blank eyes followed me as I shrunk behind my mom.

“It’s the Easter bunny!” my parents shouted with pride. My brother grinned and waved back.

“WHO IS THAT?!” I shouted. Grandma and grandpa were too old to play dress up. I couldn’t think of anyone else. The backyard had always been my safe haven.

“It’s the Easter bunny! It’s just hopping through the neighborhood,” my parents said.

“TELL ME!” I shouted with tears welling in my eyes.

This where my parents made their second mistake.

“We don’t know who it is!” they said, finally acknowledging that I was too old to believe in the Easter Bunny. Unfortunately, they did not acknowledge the trauma of being ambushed by a seven foot rabbit regardless of age.

“WHAT DO YOU MEAN YOU DON’T KNOW?!” I screamed.

Several hours later, after it was clear no amount of chocolate could justify the monster strolling through the backyard, my dad confessed the bunny was his co-worker. He definitely thought that would lessen my fears, but here I am, writing about it at age 33. Plus, have you seen Donnie Darko?!

*****

This year, people around the world are spending Easter in isolation due to the pandemic. To be honest, I’m grateful. This is my fifth Easter in isolation due to mast cell disease and I’m tired  of inciting pity and discomfort when I tell friends and co-workers that I spent a holiday alone. People assume spending holidays alone is the worst. It’s certainly not my first choice, but I also appreciate my holiday autonomy. I focus on activities I can enjoy, and abandon any traditions I don’t. Most importantly, I am safe from the Easter Bunny. (I shut my shades just in case.)

*****

A few years after the Easter Bunny incident, my parents went out of town. They let me sleep over at a friend’s house. She loved animals as much as I did, but my parents wouldn’t let me have a pet.

When my parents came home from their trip, I met them at the front door with a large hat and wand in my hands.

“I learned a new magic trick while you were gone!” I gleamed. “Abracadabra!”

I waved my wand, reached into the hat, and pulled out a black and white mini lop.

“Isn’t that an awesome magic trick?” I asked my stunned parents. “He’s mine now!”

The karma of bunny magic.

Please stop calling MCAS rare

Rare Disease Day Mast Cells

Maybe it’s the pain and prednisone, but I’ve been really peeved by the eagerness to raise awareness for mast cell activation syndrome (MCAS) on Rare Disease Day.

First of all, why isn’t the MCAS community half as engaged on Mast Cell Disease Awareness Day? 

Second, there is growing evidence that MCAS is not rare. Some researchers believe more than 5% of people have MCAS! Yes, some organizations currently categorize MCAS as rare, but only because that is the default categorization for newly-recognized diseases. For example, AIDS used to be categorized as a rare disease. Furthermore, there is growing evidence that conditions like fibromyalgia, which affects 3-6% of people, are symptoms of MCAS.

“MCAS is likely prevalent” – Lawrence B. Afrin

Calling MCAS rare is not only unfounded, but it hurts diagnosed and undiagnosed MCAS patients. It signals to doctors that they do not need to learn about the disease. It signals to drug companies that there is not enough of a demand for new, lower cost treatments, like ketotifen in the U.S. It delays the development of accessible diagnostics. It signals to policy makers, who often vote based on numbers, that they do not need to listen to us.

Worst of all, calling MCAS rare discourages undiagnosed patients from getting tested and learning about MCAS, because they believe it is improbable.

That being said, please support Rare Disease Day. At this time, MCAS patients experience many of the same struggles associated with rare disease. Furthermore, mastocytosis continues to be classified as a rare disease through evidence-based research and we definitely should support fellow mast cell disease patients. After all, mastocytosis provides the foundation for understanding MCAS. Finally, you don’t have to have a rare disease to support Rare Disease Day.

MCAS is rarely diagnosed and rarely researched, but please stop calling MCAS rare. Instead, start planning for Mast Cell Disease Awareness Day on October 20. I know I am.

Learn more about Rare Disease Day at http://www.rarediseaseday.org.