One day's worth of vials.
Living with Epstein-Barr, Mast Cell, & POTS
Written 4/21/23
[For info on how I’ve learned to cope with EBV, MCAS, & POTS, click here - >>>]
For as long as I can remember, I've been a sick kid.
When I was young, I would get sick several times a month. It was just to be expected. Sinus infections, pneumonia, bronchitis, I caught it all. I was always the scrawniest, smallest kid in my age range. I remember a photo of me standing next to friends my same age and I'm half their size.An endless stream of blood tests turned up nothing. I was, as far as Western medicine could determine, "healthy".
Somewhere around junior year of high school, I was diagnosed with bipolar disorder and anxiety, as well as C-PTSD for my father's death when I was 12. With the mood stabilizers prescribed to me came fainting spells, diagnosed as vasovagal syncope. I later discovered that small seizures like these are also a symptom of celiac disease. At this time I also had Raynaud's Syndrome, digestive issues, tonsil stones, warts, and could not put on weight or gain muscle. I struggled in school and lost jobs, due to taking so many sick days.
I started seeing naturopathic doctors somewhere in my early 20’s. The first one I can recall seeing knew immediately that I had food allergies or intolerances. I did my first food elimination diet, and after 3 weeks of only eating plain chicken and rice, I ate a piece of bread and was sick for a week straight. I have since identified an extensive list of food allergies and continue to modify my diet regularly. More on that further down.
I first became truly, debilitatingly sick in September of 2020.
It was suspected that I caught a bug from drinking fresh waterfall water during a backpacking trip without properly purifying it. Or it could have been the stress and anxiety of being in a global pandemic with people dying daily. Exacerbated by the racial injustices of the months that followed. Or all of the above.
Who knows what instigated it. I don’t recall symptoms other than fatigue for that first month. The next 2 months were better… but not great.
In December 2020, my body shut down. I was quite literally crawling from room to room. It hurt to eat but I was always hungry. I couldn't lift anything. I couldn't stand up without getting so dizzy I almost passed out. My vision blurred and sometimes blacked out completely upon standing. Heart palpitations and struggling heart beats were constant. It was terrifying.
I wasn’t able to take care of myself. My upstairs neighbors started leaving me meals of corn tortillas, chicken, and sweet potatoes. It still hurt my esophagus, but I was so weak I had to eat.
After about 6 months and several rounds of blood and other tests, including a tilt table test & EKG, I was diagnosed with Epstein Barre reactivation (hereafter EBV), with a side of Postural Orthopedic Tachycardia Syndrome (POTS).
I've also more recently begun treatment for Mast Cell Activation Disorder or mastocytosis. To confirm either would require a bone marrow biopsy (no thanks!) and I present with enough of the markers that my ND decided to go ahead and treat for it.
The treatment continues to evolve, but as of now, it's a daily routine of Acyclovir antivirals 3x a day, 8 vials of a liquid mast cell stabilizer called Cromolyn, 2000mg of Vitamin C, 2-4 “salt stick” tablets for electrolytes (I can’t tolerate others), 3-4 capsules of Quercetin, fish oil, vitamin d, and a lot of coconut water! The most recent addition is 4 mg of naltrexone for body pain management, a big help! Insurance only covers 3 of those, by the way. If I miss a few days of Acyclovir, Cromolyn, Quercetin, or Salt Sticks, I feel it. The worst of the symptoms return and it takes me twice as long to recover.
[Side bar: I will say right here and now that diagnosing a medical condition can really be a full-time job. I'm not sure I could have kept up on countless doctors appointments, phone calls, lab & pharmacy visits, insurance haggling, etc. and also held down my LMT job. Honestly I consider it a strange blessing that this all occurred during the pandemic, while I'd already closed my business due to Covid, which made me eligible for Medicaid.]
Aside from the meds, diet is the most critical factor. Because my body is in a constant state of hyperactivity and vigilance, I have to eat a low FODMAP, low histamine diet and if I cheat, I pay for it in escalated pain levels of 5-8/10, sometimes for days.
Check out this resource by a group of Swedish folks who experience similar issues and have done their own histamine research - if you scroll down the page, you will find a downloadable PDF with guidance for a low histamine diet. If you're wondering what I *do* eat, I’ve made a separate post with specific substitutions that work for me. But I suspect that this is unique to each individual, so if you’re facing similar symptoms, I’d recommend considering ongoing food testing for yourself and keeping a diary of meals and corresponding symptoms (also catalog good days!) I use a free app called Bearable for my tracking.
Flare ups come and go, without warning or solution. Mostly they do seem to be diet related, or have to do with cold weather, or stress level. Other times, seemingly without a cause.
Some weeks are extra difficult and I'm deeply exhausted. It takes all of my effort just to get out of bed and I have to cancel all of my plans.
After the flares subside, I resume a routine of walking, running when I can, one minute planks, lifting 5 lb weights, 15-40 minutes of yoga as many days as I can, and other physical activities like dance and prop manipulation. I find that the longer I go without physical activity, the worse my body feels. Movement is CRUCIAL. Especially for my joints. If I go too long (about 3 days) without movement, my constant daily pain levels can shoot as high as 8/10. I was tested for Ehlers Danlos
Sometimes my POTS symptoms return and I have a hard time moving from sitting to standing positions. My equilibrium is thrown off and I sometimes walk into things or can't hold a glass evenly. These are the days I only do seated floor yoga routines and take it easy.
To that end - I've had to learn how to be malleable and flexible mentally and emotionally in my yoga and strength training practices. Some days I can go for a run, lift weights, do a HIIT workout, all on top of having massage clients. Some days all I can do is work and rest. The hard parts are knowing how to identify when it’s time to rest vs time to push through the fatigue. And learning to accept that this is, not just my new normal, but my new healthy balance. Rest isn’t optional, and really, it should be a scheduled part of everyone’s week.
I not only deserve rest, I do myself a disservice when I deny the amount of rest my new body needs.
It takes effort to remember that I don't have to let the capitalist guilt of a whole day of resting leave me feeling bitter, depressed, or ashamed. We live in an overstimulating world and there are a lot of different kinds of rest that go into replenishing your reserves. It took me a while to learn that watching tv for several hours is a *kind* of resting, but it maybe isn’t the most effective if I need a sensory or brain rest too.
I used to be the person that was GO-GO-GO-CRASH. Now I moderate going hard with saying no and resting. After 2 and a half years, it's gotten a lot easier. I also make plans with a disclaimer that there are times I will have to cancel due to low energy, and gratefully, most folks are understanding.
Perhaps the most important thing to come of this whole ordeal was for me to learn how to give myself the compassion I give to others, but have always struggled to give myself.
I will continue to update this blog with relevant info as I learn what kinds of info other folks are searching for. I truly hope this helps, if you're finding yourself in a similar circumstance.
~ Zee Parker, LMT, CYT (they/them)
>>>TL;DR: My current management plan!
- Meds = Acyclovir antivirals 3x a day (forever), 2 vials of a liquid mast cell stabilizer called Cromolyn 3-4x/day, 2000mg of Vitamin C, 3-4 “salt stick” tablets for electrolytes (I can’t tolerate others), 3-4 capsules of Quercetin/day, fish oil, vitamin d, 4 mg naltrexone, and a lot of coconut water!
- Rest = At least one day per week of minimal plans and only gentle movement.
- Physical Activity = Some form of movement every day, since sitting too long causes pain in muscles and joints. Planks, restorative yoga, small weight lifting, & dance are the most helpful.
- Diet = Mostly low fodmap & low histamine, with calculated cheating thanks to food logging.
