PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

Posts tagged ‘Antibiotics’

3 Years Later… The Beginning of the End?

Celebrating 3 years of blogging and the beginning of the end of my battle?

Three years ago today, I published my first post on this blog.

At the time, I was in a downwards spiral, falling apart and losing my mind. My doctors were baffled and running out of treatment options, and I was threatening to take my life. But then, my family figured out I had PANDAS/PANS. Thus began a three-year fight to regain everything my illness had so suddenly stolen from me.

Back then, it seemed I was the only 19-year-old on the planet who was fighting for their life against this allegedly pediatric condition, PANDAS/PANS. There were no blogs written by patients—only parents. I wanted to read from someone writing about going through what I was going through; I wanted someone to show and tell me that I would be okay. Since I could find no such blogs at the time, I figured I might as well be the person to change that so that something good might come from my ordeal one day.

Today, in 2017, I can say it’s been quite a journey, but I almost dare believe I’m now 95-99% recovered. I’ve been through three high-dose IVIG treatments as well as eight low-dose IVIG infusions. I’ve endured tonsil/adenoidectomy, over a year of steroids, month after month of antibiotics, and countless therapy sessions. Although I still take medications and follow a Lyme disease antibiotic protocol, today, I’m able to live my life, and I’ve managed to accomplish things I never would’ve dared to dream when I started this blog.

So I wanted to take a moment to thank all of you for reading The Dreaming PANDA and for offering your encouragement and prayers over the last three years. I’ve probably never met any of you, but your support has meant the world to me. Thank you for taking the time to read what I write, and sometimes, to reach out to me. It can be lonely to deal with a life-altering disease, but this community has kept me going—and I sincerely hope my writing has helped you in some way, too.

I’m not quite ready to stop this blog just yet—in fact, I’m not sure if or when I ever will, since I have more readers than I ever thought I would when I first started. I don’t ever want to stop raising awareness, and I have every intention of continuing to bring hope to those of us who’ve been affected by PANS and Lyme.

For this reason, I’m planning to write a memoir in the near future, and I intend to post excerpts along the way. With any luck, however, I’m now living in the final chapter of my recovery journey.

I know a lot of you are probably out there wondering if you or your kid will ever get better and live a productive life—just as I wondered when I began writing three years ago. You might feel hopeless and think that no one can get past this. It’s often been an impossibly hard journey, but you know what? Yes, I’m okay now. And you can get there, too.

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.

The last two weeks of symptoms flashed in my mind… The severe anxiety that gave me a panic attack over leaving the house. The lack of concentration and mental energy that meant falling behind in school. The incessant partial seizures that made me nervous every time I stood up to walk. I hadn’t even been in such bad shape when I started being treated for Lyme in December.

What are these doctors doing to me? Why am I putting up with this? I realized that morning that my treatments were only making me sicker.

As I eventually got to the kitchen, I sat there and stared down my antibiotics—the perpetrators of these all-too-frequent Herxheimer reactions that seem to be slowly ruining my life.

I can’t do this anymore…

I stopped my Lyme protocol for several days, because the thought of getting any worse than I already was seemed unbearable. Last semester, my quality of life, even if I still had PANS flares, had been much better. I’ve missed so many days of class this semester, thanks to herxes that leave me too weak and sick to get out of bed. I thought if I took a break from my protocol, maybe life could go back to how it was before.

But unfortunately, my strong reactions to the treatments show that they’re killing off a lot of bacteria—in other words, my misery is proof that I need to keep going.  And last summer, Lyme disease attacked my heart and nervous system, and there are still spirochetes in my brain—who knows what they could do to me over time?

I can’t quit. Whether I like it or not, this disease is trying to take my life, and if I want to live, I have to fight back.

After a couple of days of lying around the house and feeling terrible from the herx, plus a lot of kicking and screaming, I finally accepted this battle I’ve been given. I shed more than a few tears, finally realizing that I may have another year or more of Lyme treatment before I’m cured. I felt anger and rage that I’m spending my twenties in a health crisis—after already having PANS for a decade. But I’m channeling that anger into a will to fight to get better.

I almost quit treatment because I was tired of feeling worse. I kept going because I wanted to live.

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.

It’s not that I haven’t looked forward to anything in life for all these years—there have been plenty of better times when I’ve been excited about a particular event or a single aspect of a day. But rarely, if ever, have I looked forward to simply living.

Much of the time, I don’t live, so much as I merely survive. I’ve achieved great things in spite of my illness, but my victories are always shrouded in a cloud of depression and anxieties—I may do “normal” things, but no one knows how many obstacles I face in the process. In good times, PANS trails behind me like a shadow, reminding me that any day, it could come back and envelop me—which causes an unconscious sense of dread for each day to come.

But for a few days last week, that shadow was gone. While I still had a few tics here and there (and ongoing food challenges), I otherwise didn’t notice my symptoms at all. I had a mental clarity that I hadn’t experienced in at least a decade—no more depression, no more anxiety, no more ADHD, no more cognitive problems, no more brain fog—just clear thinking and happiness. It felt like waking up from a ten-year slumber.

Amazingly, it just so happens that this week marks the six-month anniversary of my third high-dose IVIG. I’ve always been told that it’s usually 4-6 months (and sometimes up to a year) before the full effects of IVIG kick in, so it seems that I’m right on target.

Unfortunately, the “awakening” I experienced a few days ago didn’t last: I’ve since had another herx reaction from my Lyme treatments, which has brought back the brain fog and depression, along with feeling like I have a bad case of the flu. It’s terribly painful to have had a taste of normalcy and good health, only to be dragged back into the mud of PANS and Lyme.

Nevertheless, I’m trying to look on the bright side and realize that herxing, by definition, means the Lyme bacteria are dying, and I’m getting better. Moreover, having experienced this latest bout of remission—the first time I’ve looked forward to life in a decade—gives me great hope for the future.  If I can have five days of remission like that, then why should I not believe I can someday be that healthy all the time?

Now I look forward to tomorrow because I have reason to believe and hope that I’m on my way towards forever beating PANS and Lyme.

Lyme Disease: A Still, Silent Battle

2 antibiotics, 3 medications, and 6 supplements: my weapons of choice against Lyme disease

2 antibiotics, 3 other meds, and 8 supplements: my weapons of choice against Lyme

“It’s Lyme disease.”

They were three words that shattered all of my expectations for recovery from PANS… Three words that I still struggle to accept… Three words that are going to change my life…

The other week, I was officially diagnosed with Lyme and some co-infections (Babesia and Relapsing Fever, in my case) at a Lyme treatment center. Apparently, it’s Lyme and the co-infections that are continuing to provoke my immune system and cause me to flare and not quite get all the way better.

While it’s great to have more answers, I found out other things I didn’t want to know…

In addition to my usual brain inflammation, the Lyme doctor discovered that my nerves are inflamed, and my spleen is enlarged from working so hard to fight off the infections. Also, I’ve almost completely lost my patellar reflex—when they took the rubber hammer to my knees, nothing moved—potentially a sign of a serious problem.  The “shin splints” that I can’t seem to heal may be bone pain from the infections.  Most frightening of all, my knee-buckling attacks (which I’ve had for two years) may be atonic seizures.

After the trip to the Lyme specialist, I was reeling for days, which is why I haven’t been able to post until now. Physically, I haven’t felt like a sick person at all—I have none of the aches and pains that so many people with Lyme experience, so realizing I was indeed quite physically ill came as a shock to me.

Moreover, I’d been hoping to be done with PANS soon, but I’m now told I’ll most likely need Lyme treatment for at least another year. And if it really takes that long to clear the infections, I don’t think I can expect to be free from PANS until they’re gone, either, can I?

So what can I do? I’m beyond tired of fighting for my life, because I’ve had PANS for ten years (untreated for eight of them), and I’ve especially been fighting hard over the last few months because of this Lyme-triggered relapse. Plus, trying to conquer an eating disorder brought on by all of this has taken its toll on me. But now, they’ve told me that I must also fight against Lyme somehow? How many battles can one person fight at once?

But one evening this week, when I was feeling particularly depressed about my situation, I came across a Bible verse that really spoke to my battle fatigue:

“The Lord will fight for you; you need only to be still” (Exodus 14:14).

In reality, for now, “Fighting Lyme,” is nothing more than adding another antibiotic and a few more supplements and continuing to do my best to live a healthy life. To fight Lyme, I only have to be still and wait for these treatments to work. Fighting Lyme changes absolutely nothing about my day-to-day life—except that eventually, it will get better and easier when I beat it into submission.

Although it may seem like Lyme is a whole other terrifying monster to try to subdue, when I was done with my shock and denial, I realized that fighting Lyme isn’t actually much different from fighting PANS. “Being still” and waiting for treatments to work is exactly what I’ve been doing for PANS for the last two years, but now, I’ll be eliminating the infection that triggered this whole relapse in the first place. So really, the diagnosis is a good thing, because I have a more concrete plan for how to recover from both PANS and Lyme.

And so, readers, it looks like you’re going to get at least another year of posts out of me, thanks to this long Lyme treatment process. Two weeks in, I’ve already made leaps and bounds—I’m concentrating better and no longer have suicidal thoughts—so with any luck, 2017 will be the year that you and I all beat PANS and Lyme once and for all.

Thanks for all of your support, particularly through my 2016 relapse. Here’s to a better 2017!

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.

I’m being tortured—a sinus infection is causing my immune system to attack my brain, triggering sudden and severe mental illness. This is just another evening in the life of someone with PANS/PANDAS who’s having a flare…

The only way to describe the torment I feel in these moments of a severe flare is that it’s like someone has jabbed a knife into my brain, but the pain is mental instead of physical. It’s like fingernails scraping against a chalkboard, and the chalkboard is my soul being whittled away. It’s like a bomb going off inside my mind, scattering my thoughts and setting my brain on fire. I’m no longer present, but I’m aware enough to not be spared the grief of losing myself. It’s mental agony so intense that, in those hours, I’d rather die than continue to endure it indefinitely.

Shockingly, just a few days before, I wasn’t unlike any other college senior—I was happy, full of life, a bit stressed from midterms, yet looking forward to all that was in store for me. Killing myself was not something on my agenda. But then, I caught a cold, and I soon noticed myself becoming forgetful and struggling to think clearly. A few days later, I started refusing food out of fear (not from a lack of appetite). Then, I suddenly began hearing looping thoughts telling me that I wanted—and needed—to die. The most basic tasks were impossible—simply putting my shoes on was mentally overwhelming. I didn’t care about anything and was completely disengaged with life.  Every few hours, I’d suddenly become gripped with a wave of terror for no reason, and I’d start crying uncontrollably because of the severity of the mental pain.

Within a week’s time, I’d lost my mind.

My parents had come to stay with me for fall break, believing they would bring me home for the rest of the semester. The usual high-dose steroid regimen I take for flares had failed miserably—even a high-dose Solumedrol IV drip did nothing. However, one night, in a last-ditch effort to rescue me from the brink of insanity, we pulled out what was left of an old Azithromycin prescription, and I started taking it (with my doctors’ approval). Sometimes, if steroids don’t help PANS symptoms, it’s a good indication there’s an unresolved infection. I was already on penicillin, but plenty of bacteria can’t be killed by it.

With three days of Azithromycin, I felt no change—though my parents claimed I was starting to look a little less tormented. And then, one day, I started doing homework. Then I ate real meals. Before long, I felt engaged with the world again. By the fifth day, it was as if the whole incident had never happened; I was 100% back to where I was before.

People often ask me what it’s like to have PANS—to survive the mental anguish of flares and then in the good times, to live with the knowledge that it could all recur any day. But the truth is that, to me, there’s nothing like losing, and subsequently, finding your mind again to make you appreciate the goodness of all the little things in life that so many of us take for granted. When I have a bad flare like this one, PANS makes me want to die, because it turns my brain against me. On all the other days, PANS makes me want to live as fully as possible, because I know tomorrow is so uncertain, and I want to enjoy all the good things in my life while I can.

Living with PANS has never been easy—in fact, it often feels impossible, but now that this flare is over, I’m grateful to be alive and well and back in class, and I’m grateful for Azithromycin.  And of course, I’m grateful for parents and doctors who don’t give up on helping me live even when my brain tricks me into wishing that they would.

A Ghost in My Own Life

Ghost

With this latest relapse, I’ve been living as a ghost in my own life.

In a single day, I went from eagerly and excitedly whittling away at homework for my summer classes, to crying at the thought of writing a single paragraph of a paper. I went from enjoying meals and coffees with my friends, to being terrified of any group of people and not eating lunch at all. I went from being praised at school for contributions I made in my department, to wanting absolutely nothing to do with my chosen field.

And over a couple months, I went from a healthy 110 pounds to a dangerous 96 pounds because of my eating disorder.

To put one more rotten cherry on top of the melting sundae that was my sad state, I’ve been too sick to run. Running used to be the one thing that could make me feel better no matter how depressed I was, but now, I haven’t even had that.

Because of all this, this week, my family and I once again found ourselves in the waiting room of my PANDAS neurologist. I’d hoped that my one-year follow-up would be a happy visit when we would celebrate everything I accomplished this year, but now, we were almost as desperate as our first appointment two years ago. And I was even four pounds lighter than I was in 2014.

I knew my doctor would be concerned about my fourteen-pound weight loss, but I wasn’t prepared for her reaction to other symptoms. After I shared details about the last couple months, she looked at me and said, “I’m going to have a heart attack because you haven’t seen a cardiologist,” and immediately called the cardiology department at my local hospital to get an appointment.

Why such concern? My neurologist suspects that the flu-like illness I had three months ago was the Strep-triggered Rheumatic Fever, which often damages the heart. Indeed, I was diagnosed with post-viral pericarditis in May—an inflammation of the sack around my heart, so her suspicions are somewhat warranted. Although a recent EKG came back normal, I have yet to regain my strength. Furthermore, Rheumatic Fever can cause extreme fatigue and weight loss, which I’m experiencing.

“What about the anorexia?” my dad asked.
“She’s going to need more treatment. Some kids need three IVIG’s… Actually, this is bad enough for plasmapheresis,” my doctor told us.

I could’ve cried when I heard this. I didn’t realize how serious my eating disorder had become and that being malnourished could also possibly damage my heart. I knew I was miserable, but I didn’t know I was in bad enough shape to warrant IVIG or plasmapheresis. In that moment, I felt like surely none of this was happening to me—perhaps it was all just a nightmare. Perhaps I was only a ghost observing someone else’s life. But I was wide awake and in my own body.

So I have my third IVIG scheduled in a few weeks, and I’ll be seeing a cardiologist today (Tuesday). My doctor thinks it’s unlikely that my heart has been permanently damaged, but the possibility of Rheumatic Heart Disease is nothing to mess around with. Maybe I will at least have an answer as to why I’ve been so dizzy and exhausted and unable to run…

There is another ray of hope, too: I was switched from Azithromycin to penicillin, and so far, my mood seems to be brightening every day. I’ve even started eating an appropriate amount of food (though I still obsess and count calories in an unhealthy way), I’ve resumed my hobbies, and I’ve been able to do some homework. If the improvements continue, I won’t be getting IVIG.

It’s been an unbelievably awful few weeks, but I’m so determined to beat PANS into total submission one more time. I’m holding out hope that the penicillin will continue to work its mysterious healing and that I won’t ever need more IVIG. I’m choosing to believe that slowly, but surely, I will keep coming back to life in the flesh, never again to haunt myself like a ghost.

Why Antibiotics Are Necessary for PANS

Sometimes, you have to try a few antibiotics for PANS before you find the right one.

Sometimes, you have to try a few antibiotics for PANS before you find the right one.

Since being diagnosed with PANS, I’ve been on antibiotics for twenty months straight, save for one two-week break. I’ll continue until six months after my last symptom, or at the very least, through my senior year of college.

Over these months, I’ve tried a variety of antibiotics, including Augmentin XR and Cefdinir, but it was switching to Azithromycin in October that I believe was the final blow to my illness. The few mild symptoms that remain have little effect on my life.

Yet some critics might say that my taking antibiotics for twenty months is reckless—that I’m contributing to antibiotic resistance and an inevitable super-bug apocalypse. But these are the same doctors who will give a six-year-old anti-psychotics without investigating infectious triggers. So who’s the reckless one: the doctor who loads up a kindergartener on Abilify without running diagnostic tests, or the doctor who’s prescribing a year of Azithromycin, knowing it will keep me sane and healthy? Is it reckless to properly treat the underlying cause of a debilitating and potentially life-threatening illness?

Nevertheless, some skeptics argue that antibiotics merely have a placebo effect—that people are seeing a relationship between symptoms and antibiotics that doesn’t exist. But anyone who has PANDAS or who’s lived with a PANDAS child for any length of time may have observed the pattern of improvement with antibiotics over and over again—and knows it would be unscientific to claim these observations as mere coincidence.

But what about antibiotic resistance? What about the fact that antibiotics kill off beneficial gut bacteria? What about yeast infections? If PANDAS is just “sudden-onset pediatric OCD,” why not give kids an SSRI and send them to therapy? Why not treat the tics with some anti-psychotics? Surely long-term antibiotics are unhealthy, right?

If PANS could be effectively treated with therapy and anti-psychotics and SSRI’s alone, the PANS community would settle down and crowd into the offices of mainstream doctors, the kids would get better, and the families would go on thriving. But this isn’t the case. Treating infections is the most crucial part of recovering from PANS, because the infections are what trigger the symptoms in the first place. Any ongoing infections will continually provoke the immune system to create the antibodies that attack the brain and lead to symptoms. Thus, the infections need to be dealt with for healing to occur, and they need to be prevented for it to continue.

As for antibiotic resistance, more than half the antibiotics used in America are for agriculture. We should be worried about all the livestock being given antibiotics for non-therapeutic purposes—not kids with PANDAS who take amoxicillan to stop bad antibodies from attacking their brains. Some people with PANDAS are literally dying. I would argue that they need antibiotics as much as someone with life-threatening bacterial pneumonia, for which no one ever questions the use of antibiotics.

But surely after twenty months of antibiotics, my gut flora is a wreck, isn’t it? Seeing as I’ve never had a yeast infection or diarrhea or nausea during this whole time, I’d say I’m just fine. In fact, I had stomach issues before I started antibiotics that have since resolved. I’m not alone in this—I’ve heard similar reports from many other families. (All this being said, yes, I do take a probiotic everyday—with 30 billion live cultures.)

Antibiotics are a critical part in the healing process of PANS. For some, they may be the only treatment needed. For others, they’re one of many therapies that work together.

If you’re just starting on the road of antibiotic treatment, my best advice would be to realize that it can take time for PANDAS symptoms to die down. In some cases, you get worse before you get better.

Antibiotics are still drugs with risks, and using them shouldn’t be taken lightly. However, with PANDAS, the bigger risk is often to leave the trigger of the disease untreated.

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.

Contrary to what you might expect, the more often I post or tweet, the worse I’m doing. When I’m well, I get out of the house and keep very busy. When I’m ill, PANDAS takes over my life, and I can’t do much. The only thing I can do when I’m sick is write about being sick and talk to other people dealing with this disease.

I’m not sure what happened recently, but I believe I’m finally well.

Yes, that’s right.  I really did just say that: I’m well.

So what did it?  I don’t think there was any one magical treatment or supplement or diet.  It was a combination of everything I’ve done up to this point—and everything I’m still doing.

My first IVIG got me 50% back.  The second got me to 70%.  The tonsillectomy brough me to 95%, and when I switched to Azithromycin, I finally came back to myself all the way.  Prednisone and Wellbutrin made my life almost liveable while I was still less than a shadow of my former self.  Switching to paleo eating meant getting out of my body’s way while it worked with the other treatments to heal.  (I’ll elaborate on these things in a future post…)

At the moment, I don’t even think of myself as a person with PANDAS anymore—I’m a person who beat it. Sure, I still have very small involuntary movements and some tics sometimes.  And I still take medications and supplements, but I don’t feel like PANDAS has any significant effect on my quality of life.

Whether this present health and remission is permanent, remains to be seen.  I could flare again when I’m exposed to Strep.  Who knows?

I’ll be heading back to college soon, and I’ll finally be taking a full load—including one of the most difficult classes in my major.  But to me, being able to work hard is a privilege.

So, readers, that’s all I have for now.  I just wanted to share with you that I’m doing very well for a change—and I wish the same for you.

But don’t worry… I promise this blog isn’t going anywhere—I actually have quite a few posts that are almost ready (but I haven’t had time to finish them). I’ll write more when I can.

I wish all of you a Happy New Year full of health and healing!

Staying the Course

I didn't think I could finish that half-marathon, but I did!

I didn’t think I could finish that half-marathon, but I did!

I’ll never forget when I ran my first half-marathon in May.

While some people might remember the elation of achieving such a momentous feat, what I remember most was the pit in my stomach whenever I saw a mile marker—all I could think about was how many more I had left and how impossible it seemed that I would finish.

But I made it to the end.

These days, I feel like my recovery is another bad race, but I don’t even know where the mile markers are—nor does anyone else. Worse, no one can tell me how much longer I have to keep running.

With two bad flares in less than a month, I knew it was time to talk to my specialist again—even though we’d hoped to not need a follow-up for another year. So this week, the consensus was that I don’t need any more IVIG or other invasive treatments. I’m not suffering a relapse—my immune system was simply never done healing in the first place.

It’s as if I thought I’d finished the half-marathon, but I now have to keep running for who-knows-how-much farther. I’m tired, worn-down, exhausted, and unsure how long I can keep on.

Apparently, when you’re an adult with a developed immune system, it takes more time to heal from PANS. It’s more difficult for the body to learn to “forget” to make antibodies against the brain. However, it’s not impossible—I’m still told that no one is stuck with PANS forever, if you get treated. People far worse than I ever was have gotten completely better. It’s just a matter of time and of finding the right treatment.

Still, one of the hardest things about this disease is the uncertainty. I see a PANDAS/PANS expert, but even she has no idea how much longer I have to run this race.

There aren’t tests that can tell you what your best treatment option is, so I’ve just been given the whole kitchen sink over the last year, in the hopes that something we do (or perhaps all of it together) will get me better. Sometimes, I feel like we’re blindfolded and throwing darts at my disease, hoping one of them will hit it and bring it down once and for all.

It may sound strange, but that bad race in May gives me hope that I will still cross the finish line of PANS. I find hope in the sight of mile marker nine, forever burned in my mind as a forbidding sign that I would never make it; it represents how I finished when I never thought I could, because I not only made it to mile ten—I made it to mile 13.1, overcoming the hardest race of my life. I’m determined to do this again with PANS.

Even though no one can tell me the distance of the rest of my recovery, I do at least have support along the arduous course—a team of doctors, a loving family, a few close friends, and now some changes in medication. From this point on, I’ll stay on Azithromycin instead of Cefdinir or Augmentin (prophylactic antibiotics), and I’ll do higher-dose Prednisone bursts at the first sign of a flare. While I hate that I have to keep running when I thought I was finished, I try to believe that maybe, just maybe, I am in the home stretch.

Like my first half-marathon, my recovery journey has been anything but the run I expected. But I’m determined to stay the course and win the race of my life.

Why I’m Thankful

It was a paleo Thanksgiving at my house this year...

It was a paleo Thanksgiving at my house this year…

With Thanksgiving this week, as I returned home and sat around the table with my family, despite flaring recently, I couldn’t help but be thankful for the progress I’ve made over the last year-and-a-half that allowed me to be at that table—and for the family surrounding me, who helped me get there.

As awful as the latest flare was, now that I’ve switched my antibiotic to Azithromycin and am doing better, I’m all the more grateful for everything I have. It may sound like a cliché, but it’s true that there’s nothing like losing something to make you understand its value…

A year-and-a-half ago, I lost myself to this terrible disease. Though I wasn’t dead, emotionally and mentally, I was gone. I couldn’t walk. I couldn’t eat. I often couldn’t speak cohesively. I was constantly having involuntary movements. Most of all, I lost everything about my personality that made me myself—my joy and the spark of life in my eyes; I turned suicidal.

Because I once lost everything, I try not to take things for granted anymore. These days, when I decide to walk to class, there’s a smile on my face because I appreciate that my legs and brain now work together. When I touch a doorknob without hesitating, I’m thrilled to no longer be tormented by OCD about what germs I may be picking up.

When I can carry out a conversation without forgetting words or saying the wrong ones, I consider it a privilege. When I sit still in class without thinking about holding in tics or disguising my chorea movements, I’m grateful. When I packed my suitcase all by myself this week, I felt accomplished, because my executive function problems once made this impossible.

Living with the awareness that I lost, but have now regained, everything I now have adds a new layer of joy to my life that I never could’ve experienced otherwise. While there’s still plenty of emotional baggage as a result of my ordeal, I try to see the ability to be more thankful for life as more than a silver lining.

Although I continue to struggle in a lot of ways and have flares, I strive to be thankful for everything I do have. Embracing gratitude, no matter what time of year it is, is important because it helps you focus on the good things, even if there are a lot of bad things in your life. I see it as a way to overcome, because when you remember what you have and all that you can do rather than thinking of what you don’t have and can’t do, you can make better use of the abilities and opportunities you’re given.

So this coming week, as I head back to school into the home stretch of the semester, I’m going to do my best to be thankful that I’m well enough to be in college, struggling to get enough sleep, finish my projects, pass my exams, and make it until the end.

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.

On Sunday, I began to notice myself having mild short-term memory problems. And then I had a few tics. Monday night, my roommate got sick with an 101º fever, swollen tonsils, and white patches in her throat. Meanwhile, I was becoming more depressed by the minute. A culture of my roommate’s throat on Wednesday confirmed the unthinkable… Strep.

I couldn’t believe my luck (or hers, for that matter). She’d never had a known Strep infection, but she happened to get her first one in college while living with a PANDA who’s been known to lose her mind around the bacteria. Why did this have to happen?

I was sliding ever closer to the cliff from Monday onward, even before I found out my roommate was sick. I began crying for no reason and couldn’t concentrate. My memory was so bad that I forgot how to make a salad I’ve made every day for the last two months, and I couldn’t even remember the topic of a paper I’d been writing all semester. There was no denying that my brain was inflamed again.

I hate how PANDAS is a seemingly endless cycle of grieving the loss of who you are, then rejoicing when treatment resurrects you. When I’m alive, I never know how long I have to live. Will I be in remission for three months, or will it be three days? When I wake up tomorrow, will the infection-of-the-day take me away? I never know.

The worst of all is the sensation of losing myself when I flare; I don’t have symptoms—I no longer have myself. And it’s all the more painful because I’m always completely aware of the fact that I’m mentally dying. I’m wide awake as my heart is torn from my body.

Even so, this flare, though debilitating, has not been nearly as bad as the flares I had before my tonsillectomy. Yes, I lost myself, but I didn’t fall quite as far. I can’t explain it, but this time, the wall that shuts me into myself during a flare wasn’t as thick as it used to be.

Although I was so anxious one day that I ran out of one of my classes and couldn’t come back, I never got to a panic attack like I used to. Although I was extremely depressed to the point that I shut myself into my room for hours, curled up in a fetal position on my bed, and stopped doing my school work (despite normally being a top student), I didn’t become suicidal like I used to. And although I had some trouble walking due to loss of coordination, my legs didn’t go completely limp and paralyzed like they used to.

Objectively, I’m still better than I used to be, even if Strep made me flare. But I’m devastated to have had yet another flare just as I’d recovered from the last one. I’m devastated that my body still makes autoantibodies when exposed to Strep. I’m devastated that I still have PANS at all. How much longer can I keep living with it?

For better or worse, PANS is a part of my life, and though I’m doing everything in my power to push it out, I guess I’ll just have to keep doing Prednisone bursts and antibiotics and all my other treatments and live with it as best I can for now. What choice do I have? I’m beyond exhausted, but I somehow have to believe that life won’t always be this hard. I have to believe that somehow, something good will come out of this illness that still won’t leave me alone.

I wish no one ever got PANS, but I can only hope that what I’m going through and my ability to write about it might positively affect someone else someday—and that it does so even now.

And I have to hope I’ll never again be in such close quarters with Strep in my apartmentfor the sake of my roommate’s throat and for the sake of my own sanity.

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.

When my tics start up, I feel like someone is taking control of my body. I feel like there’s some outside force enveloping me, forcing me to do the movements or make the noises. Sometimes, I can almost feel it on my skin, and that’s rather frightening.

It had been months since I’d had that sensation and since I’d ticked like I did one night this week. Clearly, I’d been exposed to something that my body was reacting to.

A couple of my doctors were highly suspicious that I’d caught Mycoplasma (walking Pneumonia), since it doesn’t respond to the Augmentin I take daily, so I got an Azithromycin Z-pack to treat it. I’d been holding off on starting it for a bit, hoping I could do without it, but when the tics came back and I wasn’t focusing again, I knew I had to do something.

I’m one of those kids who’s usually been classified as a “non-responder” to antibiotics, but given how bad my tics were and the lingering depression and anxiety, I figured it was worth a shot. Plus, I’d been having this weird shortness of breath and a cough, so it wasn’t totally crazy to suspect pneumonia.

To my astonishment, the day after my first dose of Azithromycin, something strange happened: I realized that I wasn’t ticking at all! By the second day, the cloud of despair that I get during flares was also gone. And I was even being productive!

Now that I’ve finished the Z-Pack, I’m doing umbelieveably well taking the hamburger Cefdinir instead of Augmentin XR, and Cefdinir kills Serratia marcescens. (For those of you who are new to my blog, that bacteria once infected my tonsils and probably caused a number of flares.) But since I’d been so depressed for several weeks recently, I hadn’t been cleaning my shower, and of course, there was a huge colony of Serratia growing in one of the corners. Yuck! I’m sure that didn’t help…

I'm 99% sure this was Serratia in my shower...

I’m 99% sure this pink blob in my shower was Serratia

But now, I’ve had someone else clean out the shower with Lysol (to limit my exposure), and I’ve been taking Cefdinir, and I’m doing wonderfully. In fact, I’ve had a few days of feeling 100% and completely symptom-free this week. I don’t know if it was the Azithromycin or the Cefdinir or the Serratia-free shower or all of the above, but no matter what it is, I’m glad for the relief.

Yet I never know how many good days I’m going to have before I flare, so I’m trying to savor and make the most of these good days while I can. I have a bad feeling I’m going to flare again, but I’d like to think it’s just an unfounded fear… Whatever the case, I’ll just keep living as much as I can in the middle of fighting off this crazy disease.

PANDAS is so difficult to go through, but I’ll just keep trying to laugh about the little things—like that silly hamburger—to make the journey more tolerable as I work to find the best treatments.

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