PANS + Lyme: Recovery and 8 Years of Misdiagnoses

Posts tagged ‘Anxiety’

Why PANS Awareness Saves Lives

October 9th is International PANDAS/PANS Awareness Day!

For the last eleven years of my life, I’ve battled a debilitating yet misunderstood autoimmune disease called PANS. It’s a disorder where an infection or an environmental trigger confuses your immune system into attacking your brain. This leads to all sorts of problems like OCD, anxiety, depression, tics, involuntary movements, cognitive problems, and many more horrible things.  It affects at least 1 in 200 people, but you’ve probably never heard of it.  Many doctors haven’t, either.

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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.

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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!

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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.

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I Lost My Mind… But Haven’t Lost Hope

Every time I think I can’t go on, a thread of hope keeps me alive.

It’s 6:00 on a Friday night, I’m drenched in sweat, sitting on my bed with no pants on, and mumbling nonsense. Tears are running down my face for no clear reason, and I feel outside myself, detached from reality. As my mom peeks into my room to bring medicine, I whisper that everyone hates me, warning that the Universe is out to get me. I have no idea why I’m saying or doing any of this—words are coming from my mouth and I can’t stop them. (more…)

Minor Symptoms, Major Anxieties

I still can’t believe I went so far from home for this internship…

A few weeks ago, I took a huge leap of faith, packed up my bags, and got on a plane to the big city. As the skyline came into view, the realization of what I was doing for the next two months hit me a hundred times harder than the impact of touching down on the runway. I was about to start a prestigious internship, living in a part of the country where I’d never been and working with people whom I’d never met. What had I gotten myself into?

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The Truth About My PANS Recovery

PANS can mean losing your very self… And then trying to get it back in recovery.

The other day, while filling out forms for an appointment, I froze, as I came upon the medical history section. How could I even begin to explain it all? Moreover, how could I fit everything on two little lines?

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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.

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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!

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Why I Look Forward to Tomorrow

Being symptom-free was like waking up from a ten-year slumber

Being symptom-free was like waking up from a ten-year slumber

Last week, as I climbed into bed and turned out the lights, I experienced something very strange: I realized I was looking forward to my tomorrow. In that moment, it struck me that after ten years of PANS, I couldn’t recall the last time I was truly excited about waking up for another day.

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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.

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The Puppy Is Alive!

Puppy

With another semester of college done, I can truly say I thrived under exceedingly difficult circumstances. Several months ago, I vowed to stop trying to live up to the expectations people had for me as a top student in my program, but instead, I ended up exceeding them with yet more awards and accolades—I got all A’s, again. Frankly, I’m not sure how I do it…

But unfortunately, instead of coming home and taking a victory lap, I staggered across the finish line of the semester and face-planted with a flare. (more…)

How PANS Really Feels

PANS is an explosion inside my brain

PANS is an explosion inside my brain

“Mom, I want to die!” I burst into the living room screaming, a look of sheer terror in my eyes.

“Please… Help me!” I plead as I crumple into a heap on the sofa, wailing and yelling at the top of my lungs.

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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.

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Why I Won’t Eat

You know it's a problem when you feel guilty about eating an apple.

You know it’s a problem when you feel guilty about eating an apple.

With this latest flare, I’ve been struggling with an eating disorder again.  Restricted food intake is one of the two major diagnostic criteria for PANS, so my new obsession is nothing unusual.  In fact, this is the third time in my life that I’ve faced an eating disorder: the first was when I was nine or ten and the second was in 2014, at nineteen.

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One Wrong Step and…

With PANS, you never know what step might pull you into the ground...

With PANS, you never know what step might pull you into the ground…

I know I said I’d start a series on the different treatments I’ve tried, but I’m pausing to tell you why I haven’t been able to post in several weeks…

I caught some terrible virus and have been having symptoms again.  As a result, I got behind in school, so I’ve had to use all my time to get on top of things again.

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PANS: Certainty of Uncertainty

To me, one of the most difficult parts of recovering from PANS is how, just when you think you’re done having symptoms, your life can change again in a day. Sometimes, I feel like with PANS, the only certainty you have is the uncertainty of the course of the illness.

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PANS and Romance: It’s Complicated

Guess who didn't get any roses for Valentine's Day...

Guess who didn’t get any roses for Valentine’s Day…

This Valentine’s Day was my twentieth in a row of being single.

Some of you have noticed my lack of discussion regarding my romance life, and a few have asked whether or not I’ve been able to date while dealing with PANS.

The answer is… It’s complicated.

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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.

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Surviving Holidays with PANS

The holidays can be a difficult time for PANS patients and families.

The holidays can be a difficult time for PANS patients and families.

Call me the Grinch, but for people with PANS, the holidays aren’t necessarily “the most wonderful time of the year.” For me, the season brings back painful memories of when I was sicker. Plus, symptoms can be more pronounced when contrasted with holiday activities, family gatherings, and Christmas parties.

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The Day Recovery Began…

I never imagined what could result from an iPod and a Google search...

I never imagined what could result from an iPod and a Google search…

As I approach final exams this week, I’ve been thinking back to three years ago, when my life changed forever, on December 17th, 2012.

At the time, I was seventeen and in my senior year of high school. I was excelling academically, and people told me I’d have a promising career. I was popular with lots of friends. I felt such a sense of freedom in being an “adult” by learning to drive. I thought the possibilities for my future were endless.

But in an afternoon, my whole world collapsed.

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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.

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Can Hamburgers Stop Flares?

Even in a flare, this silly hamburger label made me laugh!

Even in a flare, this silly hamburger label made me laugh!

I’ll be the first one to admit that there’s pretty much nothing good about having flares or having to take all of the antibiotics and other medications that I take. But, sometimes, in the craziness of it all, I just have to laugh at my circumstances—especially when there’s a hamburger on my bottle of Cefdinir, which I only acquired because of a flare…

After five days of an increased Prednisone dose the other week, I was starting to come out of the mud of depression and brain fog. I almost thought I was okay. My psychiatrist had me double my Wellbutrin to help what was left of the depression, and I was almost hoping that would be enough.

But then the PANDA bear grabbed me again. (more…)

PANDAS, Described in 1 Word

"Sometimes I just get terrified." 17-year-old me unknowingly describing PANDAS.

“Sometimes I just get terrified,” said 17-year-old me at the beginning of this exacerbation.

To be faced with PANDAS is to have a lot of debilitating symptoms and feelings all at once that, in essence, make you lose who you are. There is much to say about what it feels like to have PANDAS, but if I had to sum up my experience in one word, I would say…

Terror.

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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.

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Quietly Out of Control

You can binge eat on a paleo diet? Heaven help me…

When most people who’ve dealt with PANDAS or PANS think about being out of control, what probably comes to mind are episodes of rage, debilitating OCD, constant tics, and panic attacks. While these things are the most characteristic of the disorder, during the last few weeks, I’ve been finding that sometimes, you can be out-of-control and look totally fine on the outside.

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Why I’m Better, Not Over It

I'm always cautious, waiting for the next symptom to come back...

I’m always cautious, waiting for the next symptom to come back…

This week, I woke up and cried.

99% of the time, I focus on how wonderful it is to be in remission, and I don’t allow myself to think about how awful my life used to be.  I don’t let myself feel sorry for myself.  I try to not dwell on the past.  But several nights per week, I have nightmares—most of which revolve around everything that happened to me.  And these are what break me.

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Am I Twenty or Twelve?

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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.

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OCD No More?

Leaving a switch on can be bad news for my OCD...

Leaving a switch on can be bad news for my OCD…

Ever since my tonsillectomy, I’ve noticed my OCD dying down significantly. I’ve found myself touching cabinet knobs in the kitchen that I haven’t been able to touch in over a year. I’m not checking my room for people trying to hurt me. I’m not washing my hands all the time.

I’ve been in CBT all summer, but the improvement I’ve seen seemed to happen much more suddenly and with much less effort than what I normally get from using therapy techniques alone. It was as if maybe, I had less brain inflammation, because I no longer had an infection in my tonsils.

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Why Bedtime Can Be Terrifying

How can you sleep when the PANDAS bear follows you to bed?

How can you sleep when the PANDAS bear follows you to bed?

Tap, tap, tap.

It’s 2 AM, and someone is at my bedroom door. I bolt awake and hold still so they don’t know I’m in the room. I slowly reach for my phone and think about texting my parents to come help me.

But I’m all alone. No one is at the door.

I’m hallucinating again.

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Goodbye, Tonsils

Dairy-free ice cream

I don’t even wanna know how many pints of this I’m about to eat…

With one day left until my surgery now, it’s been an interesting week. For the first time in eleven months, I’ve stopped antibiotics completely, so as not to influence the tonsil and adenoid cultures that will be performed. The doctors also told me to stop all supplements, so my pill cases have been extraordinarily empty these last few days (a much-welcomed sight!). Although I’ve had a slight increase in tics, trouble concentrating, and more trouble falling asleep, I haven’t noticed nearly as much of a difference as I expected.

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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.

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Let It Roll: OCD & Mountain Biking

Woods

Recently, I’ve taken up mountain biking, and strangely, there are a lot of parallels between becoming a mountain biker and overcoming OCD…

Ever since last summer, I’ve been apprehensive about getting on a bike, considering that my legs used to give out on me frequently when I walked. If one of these attacks happened as I rode a bike at 20 mph down a road, I could get seriously hurt.

But this week, I got back on my bike anyway and rolled into the woods, following a friend of mine who’s an avid mountain biker.

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IVIG#2, Two Months Later

Wellbutrin XL: The Latest Addition to My Daily Pile of Meds

Wellbutrin XL: The Latest Addition to the Daily Pile of Meds & Supplements

As my two-month IVIG follow-up approached, I was sure I would have bad news no matter what. It would be bad news if my doctor decided I needed an invasive plasmapheresis treatment. It would be just as bad if she told me we had to “wait and see” if this second IVIG worked, because certain symptoms were still making me miserable.

Well, I didn’t exactly get either piece of news. We made a plan that involved neither option…

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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.

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I Don’t Know Anymore

Well, after dreading it and hoping and praying it wouldn’t happen again, I’ve just had another bad flare.

On my way to class last week, I overheard someone say she had Strep throat.

No. I can’t flare again, I thought to myself. It’s not going to happen. I’m still on antibiotics. I’ve had two IVIGs. I should have plenty of good antibodies if I’m exposed. I’ll be fine…

But then, when I got to class and saw one of my lab mates who hadn’t been around in a few days, I asked where he’d been—and immediately wished I hadn’t:

“Oh, I had strep throat. It was a really bad one!” (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.

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IVIG #2: I’m Finally Aware

IMG_3170-small

I just finished my second, and hopefully last, IVIG treatment!

Recently, I’d been feeling like I’d made no progress with any of my symptoms after my first IVIG.  But strangely, it was the process of going back for another IVIG that showed me this was simply untrue.

When I had the first IVIG in August, if I got out of the chair to stand up and stretch my legs, I started doing a wild choreiform movement dance. I couldn’t even look at my doctor to talk to her because I was moving so much. I had to hold onto the IV bag pole to keep from falling down when I tried to walk down the hall to the bathroom.

This time, I hardly had any movements, and the ones I did have were barely noticeable to anyone besides me—except for when I took one spill in the hallway… (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.

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The Run of My Life

Recently, I signed up to run in my first half-marathon.  I was planning to cross the finish line this summer as the ultimate way to overcome PANDAS. I was hoping to be able to say, “Nine months ago, I couldn’t walk, but today, I’m totally healthy and symptom-free!”

But my plans have been ruined, and my dreams have been shattered.

When I underwent high-dose IVIG therapy in August, for the first time since I got sick eight years ago, I was hopeful about making a full recovery. I knew it could take up to a year for me to get completely better, but I didn’t mind. As long as I was getting better, no matter how slowly, I could keep hoping.

But then I stopped getting better.

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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.

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Why Kids with PANDAS Are Brave

Recently, I had the chance to meet with a family who had two kids with PANS. We had some great conversations, and I’ll probably write a whole other post about our meeting another time. But there was one exchange between me and the seven-year-old that I can’t stop thinking about:

Me: “You’re very brave.”
Little PANDA: “Why?”

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IVIG: Four-Month Update!

It’s been over four months since I had IVIG—and six months since the abrupt onset of my tics and other movement problems. On the whole, I’d say I’m much better.  I’ve even started tapering off the steroids.  The way I put it with my family is that I finally feel like a person again.  I’m almost back to where I was before I started flaring two years ago—with the addition of tics, some walking issues, and hypersomnia.  It’s not all forward progress, though.  It’s really more of a two-steps-forward-one-step back process.

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Getting Over the Trauma of OCD

I usually say I’m mostly free from my OCD. Indeed, I no longer have to cancel out every intrusive thought that enters my mind, and I don’t have to double-check everything I say or write for a blasphemous double-meaning. Without hesitation, I can read passages of Scripture that once sent me into a full-blown panic attack. I’ve truly come a long way, but lately, I’ve been realizing that my fight isn’t over.

What I’ve been through as a result of Scrupulosity OCD was extremely traumatic. Do you know what it was like, as a devout Christian, to believe that you would be forever separated from the God you loved with your whole heart? To me, this was the worst thing that could have happened, and as far as I knew, it had happened.

The pain was real, even though the reality was totally different. The truth is, I just had a disease that manifested itself as extreme OCD that happened to take the form of religious obsessions and compulsions. No matter the content, all OCD is essentially the same. It wasn’t a “spiritual” issue any more than it was when I caught mono last year (and subsequently descended into the worst flare of my life). (more…)

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