The Plot Twist I Never Expected… And How I’ve Learned to Accept It

After just one stride, I knew something wasn’t right.  I’d always run through anything—be it sickness, rain, or depression—but today was different.  Today, in the midst of training for my second half-marathon, my whole body felt like it was made of lead, and no matter how hard I tried I could barely pick up my legs.

I shuffled down the road for two miles before the frustration of a terrible performance got the best of me, and I dragged myself home, now dizzy from exhaustion. I went to bed in the hopes that I could sleep it off…

But three years later, I have yet to recover.

A couple of weeks before, while home on a seemingly unremarkable spring break, I noticed a red splotch on my calf one night.  I never saw the tick that did it, but I’d already been bitten enough times in my life to know what that mark could’ve been—and I knew the odds of a bite were good since I’d been walking in the woods recently.

I hope I don’t get Lyme, I thought to myself for a moment.  But I slipped on my pajamas and went to sleep, and by the time I was back at school a few days later, I’d forgotten all about it.

No one ever thinks they’ll get a devastating disease like Lyme, but at that point, I had yet another reason to deny the possibility: I’d just recovered from a different serious illness called PANS—an infection-triggered autoimmune condition where the immune system attacks the brain.

I could rattle off a list of PANS symptoms for those of you who don’t know—OCD, anorexia, anxiety, suicidal depression, ADHD, tics, involuntary movements, cognitive problems, and coordination issues—or I could just sum PANS up by saying it kidnaps you from your own body.  The effect of it inflaming your brain is that it takes away your mind and personality and everything you think defines you.

After the hardest year of my life with PANS, months of steroids and antibiotics, two IVIG treatments, and a tonsillectomy, I’d beaten the PANS monster.  By that March of 2016, I’d been in remission from PANS for nine months and was finally enjoying college now that I could think about more than just surviving and wasn’t constantly going to appointments and getting treatments.

catching Lyme wasn’t how my PANS story was supposed to end. 

I was supposed to be moving on with nine years of PANS behind me.  Life was great now, and that’s how it was supposed to be—I wasn’t supposed to instead get a second disease that would turn my world upside down.

Indeed, after that ill-fated run, I got the sickest I’d ever been as an adult: I was suddenly too weak to sit up for any length of time.  I ached all over.  My head pounded.  I could barely eat.  I knew flu in April was unusual, and thought it odd this “flu” came without a cough or congestion, but what else could suddenly make me feel so terrible?

as I’d soon find out, it wasn’t the flu: it was Lyme disease.

Before long, the infection invaded my heart, nerves, and joints.  It wiped out my immune system.  It stole the vigor and fitness I worked so hard to build.  It triggered an eating disorder that took two years to shake.  Most devastating of all, it re-ignited my PANS.

The next thing I knew I was in a life-threatening PANS relapse that saw me drop 20% of my already slender body weight. I went from being a star-student frequently winning awards, to a depressed lump who wanted nothing to do with her field and couldn’t finish her summer courses because she was so malnourished.

Lyme disease will tear apart everything you know and make you feel like a stranger in your own life…  But it will also show you, in strange ways, how strong you really are.

Nine months after the bite, I found out I’d tested positive and got diagnosed with Lyme and its co-infections Babesia and Relapsing Fever. I embarked on nearly two years of antibiotics that sometimes made me so sick I wondered if they were worse than the disease itself. I got better in some ways, but they weren’t the panacea I’d expected.

Treatment meant up to thirty pills per day!

Three years after that fateful spring break, although there’s no longer definitive evidence of the microbes in my blood (per DNA sequencing and antibodies), the fallout remains. 

Not only did I relapse with PANS in 2016, but just as I was 90% better from it a year later thanks to more IVIG and antibiotics, it happened again—just as I had, once again, begun to move on with my life.  Did lingering infection trigger that second relapse, too?  The 2017 relapse was so intense that it’s taken over a year and the aggressive Duke Autoimmune Encephalitis Protocol to regain what I lost and feel like myself again.

Nevertheless, today, I can honestly say that I’m as free from PANS as I was before that disastrous spring break—I have occasional brain hiccups here and there, like tics that reappear or the odd day when my OCD tries to creep back in, but this is the first time in a long time that I can say there’s not a single way PANS is holding me back in life.

But my PANS recovery is bittersweet because the rest of my body hasn’t healed like my brain has.  From the day I was diagnosed with PANS in 2014, I’d thought when I beat it I’d be truly well and able to put sickness behind me.

But I have Lyme to thank for doing its best to ruin the happily-ever-after I always imagined.

Though stronger than it once was, my immune system has yet to completely recover from the infection’s toll, so once a month, I have to be hooked up to an IV to get healthy people’s antibodies in IVIG treatment. I can’t make enough of my own, and without IVIG, would be catching colds and infections and feeling ill the majority of the time—a problem I didn’t have before Lyme.

But worse than this is that, shortly after catching Lyme, I developed POTS, which is when the autonomic nervous system can’t regulate heart rate and blood pressure.  And in the times when POTS has flared up over these last few years, I become mostly homebound because it makes me get out of breath just from standing up.  I went from running fifteen miles to struggling to walk a block to class.

The good news is that IVIG keeps both my PANS and POTS under control.  Unfortunately, as I recently found out, coming off monthly IVIG for just three months makes POTS come roaring back.

So no one knows how long I’ll need IVIG for keeping POTS at bay and preventing infections.  Will it be another year?  Will it be a decade?  Will it be forever? 

At this point, my doctors have stopped estimating a prognosis, and I no longer wish to ask. 

This week, I’ve reached three years since getting re-infected with Lyme, and as I’ve been reflecting on the enormous impact it has had on my life, I find myself wondering what would’ve happened had I not caught Lyme. 

What if I’d stayed at school for that spring break instead?  What if I hadn’t been bitten?  What if I’d gotten antibiotics right away instead of months later?

Would I have graduated college at the same time as the rest of my class?  Would I have been able to get a job after graduating instead of embarking on two months of intensive eating disorder treatment?  Would I have run my first marathon by now instead of dreaming of simply running a mile again?  Would I already have a career instead of being in grad school to buy time to get my act together?

Or is it possible that developing Lyme was itself just a symptom of a bad immune system already doomed to go haywire?  And what if those two years of strong antibiotics made me needlessly sicker?

Yes, my life might be different if Lyme and PANS had never been part of it, but the truth is that plenty of good and bad things happen to all of us that change us and reshape our lives.

We are all constantly transforming and becoming new versions of ourselves, so there’s no point longing for “what could’ve been” when you’re bound to be different from who you were three years ago even without getting ill.

It’s taken this long, but I’m finally to the point that living in a sick body is no longer something that upsets me so much as a fact I accept, like the color of my eyes or the size of my feet.  I certainly wish I had a healthy immune system, and I continue to do all I can to support my healing, but there’s also no use feeling sorry for myself because of what happened.

Instead, I choose to be grateful for how far I’ve come.  I choose to focus on how amazing it feels to have my mind back from PANS—and that it means I can be happy and do well in grad school.  Rather than resent needing an unspecified number of additional IVIG treatments thanks to POTS and a still-recovering immune system, I choose to be grateful that I’m able to get it and that it works enough that I can now live a fairly normal life.

Yes, Lyme disease was the plot twist I never expected, but I feel so much gratitude for how good my life is these days on the whole.  And as I move forward, I also choose to hope this isn’t yet the conclusion of my illness journey—I remain optimistic that I’ll someday reach a chapter where my body heals as much as my mind.

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5 thoughts on “The Plot Twist I Never Expected… And How I’ve Learned to Accept It

  1. Your words always make me so thankful for the existence of your blog. Every time I feel trapped in this troublesome body of mine, its easy to get caught up in chaos. Thank you wholeheartedly for taking the time to create such a useful blog for people who need it. There is barely any recognition for the souls suffering from these diseases and the media has its way of depicting it so awfully. Thank you for each and every one of your posts. They are helping the world of PANS/PANDAS/Lyme+co/AE/mental illness one step at a time!
    Love & power
    Millie Ray 🙂

  2. Hey,

    Hope you are doing well.

    Not sure if I have sent this request before.

    I am scheduling Mental Health Awareness re-blogs for the month of May, can I share a blog post of yours that’s related to the subject in any way.

    Your words can help educate the readers on the subject and give validation to the ones traveling in the same boat.

    Thank you! 🙂

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