PANS + Lyme: Recovery and 8 Years of Misdiagnoses

Posts tagged ‘College’

Is This a Nightmare Come True?

Sometimes, you don’t get to wake up from your nightmare…

Lately, with each day that’s gone by, I’ve slipped farther and farther into the abyss of my inflamed brain. I’m in a bona fide PANS relapse—there’s no denying it now.

As it turns out, I’ve had too much faith in my Lyme/co-infections antibiotic protocol. Since July, I thought my reemerging symptoms were a temporary reaction to the antibiotics, so I pushed forward. But then I kept getting worse and worse. My Lyme specialist eased up on my protocol and told me to do more detoxing. When this didn’t help, I tried taking a break from Lyme treatment altogether, but no matter what I’ve done, I’ve only gone farther downhill.

I thought my Lyme diagnosis and the treatment that ensued would be the nail in the coffin of my eleven years of chronic illness. I thought I would graduate college and get on with my life without continuing to fight PANS or Lyme. I thought I would never need more IVIG or other PANS treatments. It could only be in a nightmare that I would get sick again…

But what if your nightmare comes true?

In the last few weeks, I’ve taken a turn for the worse, and now I’m but a shell of who I was this summer, when I would’ve said I was 95% in remission. I’m still alive, but it’s like life is happening without me, because I’m not really here anymore. I’m a top student, but I’m unable to do any school work, so I’m making terrible grades. I just don’t care about much of anything these days. All I think about is surviving.

My psychiatrist has been suggesting for almost two months that I was probably having autoimmune issues, and I haven’t wanted to hear it. This isn’t happening, I told myself. I can’t be in a PANS relapse. Maybe it’s just a nightmare, and I’ll wake up and see it isn’t real.

But when I started getting panic attacks, failing assignments, ticking like a clock, and having intrusive OCD thoughts running through my mind during every waking momentand steroids were the only thing that alleviated my symptoms—I knew I couldn’t run from the truth anymore.

And so, this week, I bit the bullet and found myself in front of my PANS doctor, yet again:

“How long have you been sick now?” my neurologist asked as I slumped into her office.

I sighed. “Eleven years.”

“And how many times have we done IVIG?” She scrolled through my records on the computer.

“Three high-dose, eight low-dose.”

“Rituxan,” she said. “That’s what it’s going to take for you.”

My stomach did a somersault. Wasn’t Rituxan only for the worst cases? Was I really that sick? How did I get to this point?

Rituxan is a drug that kills off your immune system’s B cells, which are what create antibodies. It’s used for several autoimmune diseases and some types of cancer. For PANS, the idea is that when your body eventually re-generates new B cells after treatment, they won’t be attacking the brain as they were before. Thus, Rituxan lets your body rebuild a new, healthy immune system.

“Okay,” I swallowed. “But if we have to wait until I finish school in December…” I paused, looking out the window as I tried to form the sentence. “I can’t keep living like this until then.”

My doctor nodded. “I want a picture of you with your diploma. We’re going to get you there.”

So in the meantime, my doctor explained, I’ll do six weeks of high-dose IV steroids: 1000 mg of Solumedral one day each week. This should dampen the inflammation in my brain without suppressing my immune system. I’m also going back to treating Babesia, and if I have a Herxheimer reaction, I know there’s still an infection—in which case I won’t do Rituxan quite yet.

And so, I left the appointment with my PANS doctor filled with both hope and despair: hope, because maybe the steroids will make it possible for me to get through this semester and graduate—and maybe Rituxan really will be the end to this eleven-year war. But I feel despair because truth be told, Rituxan and its side-effects terrify me.

I’m glad that I have a way forward, but honestly, it’s a horrible feeling to realize that I’ve relapsed to the point where this drug may be what it takes to recover…

Yes, this is my nightmare come true.

It Isn’t You: Defying the Shame of PANS

Since the first day I became ill, shame was a mainstay in my life with PANS… Shame about irrational fears that no one understood. Shame that I felt no control over my mind or body. Shame that I couldn’t do what I once could. Shame that I lashed out at my parents and said things I never wanted. Shame that I was spending more time with doctors than friends. Shame that I’d become a different person that I hated.

The shame can be as painful as the symptoms themselves.

(more…)

Daring to Dream Again

Photo cred: NEPANS.org

This week, despite recently having the best few days I’ve had in several years, my OCD came roaring back, worse than it’d been since 2014. I started ticking again, too. People would say things to me, but their words made no sense. All the symptoms that I thought were gone returned to taunt me. Just as you think you have the upper hand with this disease, it can swoop in to tear you apart all over again!

(more…)

Why I’m Glad I Had No Fun This Weekend

This Labor-Day weekend, while you were outside grilling burgers and hotdogs, and some other college students were drinking and partying, I was all alone, locked in my apartment, doing nothing but homework and chores… And I’m so thankful I was.

(more…)

I Have No Idea What I’m Doing Anymore

I don’t know where I am or where I’m going in life anymore.

With my final semester of college on the horizon and an amazing summer internship behind me, it’s finally sinking in that it’s time to figure out what I’m doing with my life next. I’m pretty sure that anyone about to graduate from college is feeling anxious about transitioning into the “real world,” but for me, as someone recovering from PANS/Lyme, there’s a whole other layer of messiness.

(more…)

Why I Almost Quit Lyme Treatment

I pretty much take an entire pharmacy every day

 

On Thursday morning, I woke up and immediately knew something was very wrong. My whole body ached. I had an awful headache. I was dizzy. I was too nauseous to even think about food or water. It was that familiar set of symptoms that meant one thing: I was in for a terrible Lyme herx.

(more…)

Why I’m Working through PANS

Can someone with PANS/Lyme keep up in a competitive environment?

A couple weeks ago, I was elated to find out that I’d been accepted for a summer internship!  This wasn’t just any job offer, but a highly competitive internship that I’ve worked towards and dreamed about for years. It seemed so surreal that this door had finally opened!

(more…)

I Am Not an Illness

Sometimes, I don’t know who I am anymore

It was 5:00 in the morning, the day’s homework wasn’t finished, and a test that I would surely fail loomed over me. My kitchen counter-top was covered in crumbs and empty wrappers, and I’d been spinning on my stationary bike for the last three hours. My laptop was opened to my class notes, but I had a major food hangover from the 4000 calories I’d consumed just hours before. Studying was near impossible.

(more…)

Why I’m Struggling through College… For the 8th Time

With PANS and Lyme, homework isn't the only thing making college so difficult.

With PANS/Lyme, homework is far from the only reason college is so difficult…

It was with a truckload of emotions that I pulled up to my apartment last Monday night, before my eighth semester of college. While being at school means seeing my friends again and keeping busy with interesting things, it also usually means grinding myself into pieces as I try to get all the required work done in the midst of PANS and Lyme. College isn’t easy for anyone, but trying to do it with these chronic illnesses can make it a hundred times worse.

(more…)

The PANDAS Games

Does anyone ever win the PANDAS Games?

Does anyone ever win the PANDAS Games?

During one of my many insomniac nights recently, I found myself watching the second Hunger Games movie, Catching Fire. While I knew this wouldn’t exactly soothe me to sleep, there was one quote in particular that’s haunted me continuously:

Haymitch: No one ever wins the Games… There are survivors. There are no winners.

(more…)

Recovery Is Possible!

Sometimes just when you think it's hopeless, you get better!

Sometimes just when you think it’s hopeless, you get better!

Okay, I’m keeping it shorter this week, because I’m doing so well that I’ve been extremely busy! As I’ve said in the past, the better I’m doing, the less I tend to post and tweet, because I’m away from the blog living my life.

(more…)

Why I’m Not Living up to Your Expectations

Sometimes, you have to clear your own path

Sometimes, you have to clear your own path

Last semester, when I received special recognition for some of my work at school, my college experience transformed. I quickly went from being the quiet kid with few friends, to the student that everyone in my department knew about. People who’d barely spoken to me before were now congratulating me and asking for advice. And I finally got invited to social events.

(more…)

Stuck in the In-Between

I'm stuck in-between being ill and being well

I’m stuck in-between being ill and being well.

The other day, when my high school best friend and I met for one last goodbye before returning to college, at one point, she asked what I was looking forward to most about going back to school. And then, it hit me: I wasn’t looking forward to much of anything about my senior year.

(more…)

Why I’m Throwing Up My Hands

How much can I let PANS steal this time?

How much can I let PANS steal this time?

Until a few days ago, I was certain I wouldn’t return to college this semester. Between my crippling depression, incapacitating executive function and concentration issues, and my physical weakness from POTS, living independently in less than two months while taking senior-level classes seemed like an impossibility.

(more…)

“Just” My Parents?

Is it really good to go home for the summer?

Heading home for the summer!

With another year of college behind me, I recently packed up my apartment and headed home. Although I was unbelievably busy this semester and definitely overworked at times, I had a great junior year. I’ve truly put down roots in the college town where I spend the school year now, so it was with mixed emotions that I pulled into my parents’ driveway for the summer.

(more…)

Who Put Sludge in My Brain?

In a flare, I feel like my mind is full of sludge.

In a flare, I feel like my mind is full of sludge.

When I think about what a PANS flare looks like, rage episodes, wild involuntary movements, crippling OCD, short-term memory loss, and panic attacks are what normally come to my mind.

(more…)

Flare or Fluke?

How do I know whether or not my struggles are from brain inflammation?

How do I know whether or not my struggles are from brain inflammation?

Yesterday, I humiliated myself in front of the whole class.

Most days now, I feel that I have my mind back—that I can actually think without anxiety and malfunctioning cognitive processes clouding my every thought. But every once in a while, I do something really strange or stupid, and I find myself truly questioning my recovery all over again.

(more…)

New Year News

2016: The year I'm finally well?

2016: The year I’m finally well?

I haven’t had time to write a longer post for a few weeks, but I just wanted to assure you that I haven’t disappeared.

I’ve been away, not because I’m ill, but because I’m well. In fact, I’d say I’m the best I’ve been in the last nine years.

(more…)

When Strep Attacks…

Once again, I've been taken over by a flare.

Once again, I’ve been taken over by a flare.

Last Friday, I would’ve said I was 100% symptom-free. I went the whole day with no tics or OCD symptoms or depression, and most astonishing of all, I could pay attention in class. My mind was the clearest it’d been in years.

But just as I’d put my life back together after the last flare, it suddenly fell apart.

(more…)

Why I Run in the Rain

My PANDAS is a rain storm that seems it will never stop...

My PANDAS is a rain storm that sometimes seems it will never stop…

It’s 8 AM on a Saturday, and rather than sleeping in as you might expect for a college student, I’m lacing up my running shoes and getting ready to bolt across town.

However, this weekend, when I opened my blinds, I almost pulled the covers back over me; I saw it was raining with no sign of stopping.

I’d never run in the rain before, and the mere idea of it caused the shivers. I had so much homework, and the only time I had to spare was in the morning.  But I love running so much.  How could I let a little bad weather keep me from it?

(more…)

Until the Victory Is Mine

I was hoping to never again need my 10 mg Prednisone tablets...

I was hoping to never again need my 10 mg Prednisone tablets…

One of the hardest things about PANDAS is that you never know what it’s going to do next. Just as you’ve finally gotten your life back, it can strike again. Or just as you’re sure the fight is hopeless, things might turn a corner. Sometimes, it seems like there’s no rhyme or reason to its course.

Indeed, it wasn’t too long ago that my doctor said I was in remission. My family and I were stunned at the improvements I was making after my tonsillectomy. But this week, the unthinkable has happened: I am, once again, having a flare.

(more…)

ADHD: The Struggle Is Real

With ADHD, I'm forever fighting the passage of time.

With ADHD, I’m forever fighting the passage of time.

It’s 3 AM on a Saturday night, and I’m not even close to being ready to sleep. Am I out late partying like some other college students? No, I’m unwillingly sitting on the couch doing nothing and putting off going to bed for no good reason, after trying and failing to get any homework done all day long.

(more…)

Why I’m Glad I Got Sick

With PANS, getting sick has always been so much worse than just a runny nose...

With PANS, getting sick has always been so much worse than just a runny nose…

It was the first full week of class, and just like Freshman year, I had gotten sick. My body ached. My head pounded. I felt exhausted.

When you have PANS, getting sick is often far worse than just feeling tired and congested—in the past, a simple virus could send me into a full-blown flare of severe OCD, panic attacks, involuntary movements, and even hallucinations. So naturally, when my nose started running last week, all I could think about was how much I didn’t want to flare. I couldn’t have cared less about the cold symptoms themselves.

(more…)

The New Me… Maskless

Getting better is like taking off a mask...

Recovering from PANS is like taking off a mask…

A few days ago, as I strapped on my backpack and headed out the door for the first day of the school year, I couldn’t help but be excited to start my first semester as a healthy person. How wonderful it would be to do college without debilitating neurological symptoms!

As I’ve said in previous posts, I never know how ill and out-of-it I’ve been until I get better. While I’ve always known when there was something “off” about me, I’ve not always been aware of the severity of it at the time—by definition, this is partly what made me “out-of-it.” The more I’ve recovered, the more of myself I’ve realized I’d lost to PANS.

(more…)

Why This Year Isn’t Last Year

Time to Pull Out the Textbooks Again...

Time to pull out the textbooks again…

This week, I’ll be starting my third year of college. While this may not seem like a big deal, to me, it feels like a miracle, considering how sick I was just a couple months ago.

I’ve been doing very well ever since my tonsillectomy. However, it’s one thing to be well while resting at home and taking it easy; it’s another to stay well while keeping up with academics and everything else that goes along with college. My remaining symptoms could interfere tremendously with school work: difficulty concentrating, reading comprehension issues, task inflexibility, and some other executive function problems. How can anyone do college with these symptoms?

(more…)

Am I Twenty or Twelve?

P1030195-small

A flower is mature, yet fragile and innocent… Like me

After battling PANS for the past nine years of my life, I’ve been forced to grow up too quickly while being stuck as a child. I’ve had to mature to face up to my circumstances, but I’ve had to count on my parents to take care of me more than most others my age have.

At twenty years old, I’ve never held down a consistent, weekly job. I’ve never had a boyfriend. I’ve never gone on anything beyond a day trip with my friends without an “adult” present. Over the last year, I’ve let my parents make many decisions for me, because I’ve known I couldn’t trust my own judgement. In many ways, I feel like a young teenager.

(more…)

Another Flare, Another Decision

Getting sick never just means being under-the-weather for a few days...

Getting sick never just means being under-the-weather for a few days…

With PANDAS, it’s astonishing how much can change in one day. Last June, I developed a tic disorder and became unable to walk in just a few hours. I’ve spent the year that followed fighting to get my life back. One day this week, I flared again, and it’s already had astonishing repercussions…

After a week on Wellbutrin, I was starting to feel the closest to normal that I’ve felt in two years. It was like the summer before I went off to college—I had some OCD and anxiety but was mostly functional and otherwise healthy. Unfortunately, after five days of feeling great last week, I slowly fell back into depression. Then, I got a sore throat, a headache, and a cough.

A few days later, I lost it.

(more…)

Alone

Alone

While studying in my room one night, I heard laughter and music outside my window and smelled gas and burgers. I looked outside, and half a dozen people were having a wonderful time sitting around a grill, sharing food and stories about upcoming final projects.

And that’s when it hit me—I’m so lonely that I don’t even know I’m lonely.  I’m so lonely that I forget how much I miss spending time with people—until I see others doing it.

(more…)

My First “Normal” Summer?

IMG_1872-small

This week, I have wonderful news… Instead of moving home for the summer like I’d planned, I’ve decided to remain at school to take classes and work.

While this may sound like a “normal” summer for an almost-20-year-old, for me, it’s a huge victory. Not too long ago, I hated everything and wanted nothing more than to go home and spend my summer lying on the couch or in bed (just like last summer). But now, I want to keep pursuing my dreams in this city—dreams that I’d pushed to the back burner for far too long because of my illness.

(more…)

Bring Me Back

Plane

As spring break approached, I did everything I could to avoid answering that dreaded question: “What are you doing over break?”

“Oh, I’m just taking a short trip to the city and then going home and resting,” I told most people.

But the whole truth is that I’ll be sitting in my doctor’s office for two days hooked up to an IV to get a bunch of people’s antibodies poured into my body. The truth is that I desperately need this treatment so that my own bad antibodies will stop attacking my brain. The truth is that I’m going for my second round of IVIG to hopefully wipe out this disease once and for all.

(more…)

Losing My Mind… Halfway

Lately, I’ve been having a harder and harder time with cognitive problems. I make stupid mistakes in school now that I’d never make in the past. I say the wrong words without knowing it. I mix up left and right as if I were six years old. I’m very forgetful. I do a lot of small but silly things everyday—little things that anyone might do once in a while but the fact that I do them so frequently makes me feel as if I’m losing my mind.

(more…)

Slamming the Door on OCD

It’s just a doorknob—just a little piece of metal attached to my door. For most people, it’s an overlooked necessity that doesn’t get a second thought. But for me, it’s a peril.

Until a few days ago, I’d gone the entire school year without ever touching my bathroom’s doorknob. I avoided this by either leaving the door cracked enough to let me use my feet to open the door, or I grabbed the doorknob with a designated washcloth that I kept nearby. Unfortunately, I often don’t touch any other doorknobs or handles of any kind in the rest of my apartment, either—not the refrigerator, not the microwave, not the cabinets, and not even the doorknob to my own bedroom.

(more…)

Falling Off

This bulletin board represents my life

Even though I love to decorate my room, when I moved into my apartment in August, I could only muster the willpower to put just a handful of small pictures on my bulletin board. During my Freshman year, I’d made my room look like “an Athenian palace,” as one friend put it—at least when I didn’t leave my trash strewn all over the floor (thanks, hoarding OCD).

My lack of decor last semester was an analog of my life. When I finally turned a corner in November, I covered most of my bulletin board with posters, postcards, pictures, and swag from my first 5k race. The better I’m doing, the more things are on the bulletin board.

A few weeks ago, pictures and papers started falling off, one-by-one. I didn’t put them back.

(more…)

Am I Better Yet?

Ever since I started treatment this summer, I’ve found myself constantly asking, “Am I better yet?”

When I got IVIG, I’d hoped maybe I would start getting better within a few weeks. Whenever I had a good day, I started to think I was getting better. But then the symptoms would come back, and I’d be disappointed. I’d been told it could take me up to a year to get back to 100%, but I hoped it would be sooner. Wouldn’t you?

Six months later, I’m still playing the am-I-better-yet game, and the answer is still no. Certainly, I’m “better” than I was in a lot of ways, but I’m nowhere near where I want to be. I was doing really well, but now that I’m finding out where I am with less of the anti-inflammatory and immunosuppresent qualities of the steroids, I really don’t like what I’m seeing.

(more…)

What I Learned from Losing My Wallet

Recently, I had the misfortune of losing my wallet. Anyone would be upset and worried about losing something that contained your credit and ATM cards, driver’s license, school ID, cash, car keys, and apartment keys. But I had another concern: as soon as you open my wallet, you can see a medical information card that gives away all kinds of personal health information.

If I were ever in an accident or had another emergency, it’s a good thing that this information is so easily accessible. But in this case, I couldn’t help but wonder who was going to read it. There’s no way whoever found my wallet wouldn’t see it. I had managed to keep my illness a complete secret from everyone but my close friends and professors, because I didn’t want to be treated differently. Would this be the day that everyone found out?

(more…)

I Run 5 Miles, but I Can’t Walk 50 Feet

Suddenly losing the ability to walk at nineteen years old is terrifying and heartbreaking. I never thought it would happen to me, but this summer, it did. In a matter of twenty-four hours, I became unable to walk across a room without falling down multiple times.

(more…)

3 Months Post-IVIG: A Wild Ride

Today is the three month anniversary of my IVIG treatment. It’s hard to believe it’s already been that long, but at the same time, it seems like an eternity ago because the last three months have been such a wild and difficult ride.

So far, the main improvement I’ve seen is with the chorea and tics. I’m starting to have a lot of days where they’re barely noticeable. The chorea is usually just a slight arm or leg jerk here or there—I don’t look like I’m constantly dancing anymore. I can actually sit still!

I've ditched the cane!

I’ve ditched the cane!

(more…)

What I Have to Believe…

In the last two years, nothing has gone as planned.  I was supposed to go off to college and start my life again. I was supposed to leave behind the pain of the OCD I had seemingly conquered last year just before my freshman year. I was supposed to move away to let my career take off.  But instead, I’m sitting here about to take another nap because no matter what I do, I can’t keep my eyes open.  I never could’ve imagined that this is where I would be right now…

If I have to pick one thing that is the worst part about having PANDAS, I think it’s the fact that it makes me feel like I’m not myself anymore. I feel like I’m only a shadow of who I used to be—even of who I was a year ago. (more…)

Still Falling… And Getting Back Up

So I know it’s been awhile since the last post, but it’s been for good and bad reasons.

I had two weeks where I almost forgot I had PANDAS sometimes—days where I could get done almost everything I wanted to get done. I was walking normally and having a lot less chorea. My mind was mostly clear, and my concentration was good. I even had an almost normal amount of energy. So far, I’ve been able to make all A’s and a B+ in my classes. Even so, I haven’t had time for a social life. All I’ve been able to do is do homework and rest. On the outside, it was looking like I was doing pretty well. But then I started having more bad days…

(more…)

Another Flare…

Last week, I had my worst flare since everything really went downhill in June. I’m happy to say that the flare is gone now (thanks to more Prednisone and maybe the IVIG), but now that I’m coherent again, I thought I’d share what my PANDAS flares can look like. Please bear in mind that every person reacts differently to this disease, though.

(more…)

PANDAS Goes to College

This week, I’m heading back to college. Is that crazy? Probably, but I’m going to try.

As it is, my main PANDAS symptoms are choreiform movements/tics, physical and mental fatigue, hand tremors, a bit of OCD, and general anxiety. But I have my mind back. My mood is stable, I feel like myself, and I don’t fall asleep every time I sit down for more than ten minutes. I’m a functional human being again.

But the problem is that I have to be more than “functional” to get through college. I’m studying in one of my school’s most demanding programs. If trying to read a chapter of my textbook right now for an online class makes me have to lie down and rest for two hours afterwards, how can I get through a week of classes?

(more…)

%d bloggers like this: