PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

Posts tagged ‘Lyme’

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.

Although a lot of my symptoms are minimal at this point, my depression is getting more and more out of control. It’s to the point where my psychiatrist is treating me as if I have Bipolar Disorder, though he won’t diagnose it since he thinks it might be caused by Lyme Disease. I have days where I feel like everything is wonderful, life is great, and I could do anything; I work very intensely for hours at a time and set impossible goals for myself, and when I tell people about it, they look at me like I’m nuts. Then, on other days, I sleep as long as possible, sit alone in my room all day, and can’t stop crying for no reason.

Most of the time, however, I don’t really feel anything. I’m not exactly unhappy, but nothing interests or excites me anymore. I somehow managed to do really well at my job this summer, but even though it was something I’ve dreamed about for half my life, and I was grateful to be there and did enjoy many aspects of it, so many days, all I wanted was to go home and do nothing.

Fundamentally, I’m a very driven, goal-oriented person, so this isn’t a matter of laziness. There’s still a part of me (the real me) that desperately wants to do what I thought I’ve wanted for years, but when it comes time to actually do anything, I’m miserable. To add insult to injury, I have everything in line to start a good career—the skills, the connections, the determination, and even a job interview—but some days, simply getting through the next hour feels impossible. So how will I ever do much of anything with my life? Sometimes I feel like it’s such a waste that I’m good at what I do, since I’m afraid I’ll never be able to have a career at all.

I’ve been asking myself if maybe I need to change careers and do something completely different, but when I really think into the matter, I realize that there’s nothing else that seems better. Even more confusing, when I have my manic/hypo-manic days, I find that my career dreams haven’t changed. But I also wonder if perhaps I’m just burned out—perhaps I need some time away from school and work, and then I’ll rekindle my passions.

However, there is still one thing that somewhat remotely interests me on almost any day, and that’s the idea of finally writing the PANS memoir I’ve contemplated for years—though it was difficult to even make myself write this post (hence my lack of updates for the past month). Some people have told me that it would be one of the most meaningful things I could do, so maybe they’re right. Maybe I’ll take a year off from everything and finally get the story out, and then I’ll know what to do after that.

But for now, as the start of the semester and the end of my time in college draws nearer, I have no idea what I’m doing in life anymore. Yet I do know this: I need to hurry up and get better, because eleven years of PANS, Lyme, and depression is long enough.

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?

I’ve been doing so much better over the last couple of months or so, but I’ve noticed that there have been some small things that continue to creep in and make me feel “different” from everyone else. These minor symptoms become major anxieties because I’m still holding my breath and not seeing my health for what it is—that I’m 95% better and no one would ever know the hell I’ve been through without me telling them.

For example, I have small involuntary movements which, even in my best times of remission, have never completely gone away for more than a few days at a time. I always wonder, does everyone notice the twitches? Do people think there’s something wrong with me?

And of course, there are the food issues. There haven’t always been many “safe” foods available here, so I’m pretty sure some colleagues have noted that I seem to eat very little yet run a whole lot. (No one knows how I binge in secret, which means no weight loss.) Have people figured out I have an eating disorder? Do they think I’m vain for obsessing about food and exercise so much?

Perhaps most telling of all is that I have a mild form of “face blindness,” or prosopagnosia. Some people are born with the condition, but for everyone else, it’s caused by a brain injury—or in my case, PANS. Prosopagnosia means I have a terrible time recognizing faces, so I often get people mixed up and sometimes don’t know who people are. I rely on hairstyles, voices, and body shapes, instead of faces themselves, to tell strangers apart. Still, I’ve managed to embarrass myself a couple of times by mixing up similar-looking coworkers. Do people think I’m really inattentive—or worse, that I’m some kind of freak?

Although face blindness, involuntary movements, and food rituals certainly have a negative impact on life still, I feel like the main way that PANS affects me now is what it’s done to my confidence. I used to not care what people thought of me, but for the last three years, I’ve worried that people can sense that I’m “different” and cannot see past my symptoms to find who I really am.

When PANS was at its worst, the plethora of symptoms affected every part of my life and made me feel like nothing more than a heap of crippling psychiatric and neurological problems. With the way PANS literally steals yourself from you and takes over your mind and body, each moment can be your worst nightmare. So after living this awful dream day after day after day, for multiple years, it’s hard to open my eyes and realize that I’ve finally awoken—and even harder to not worry that the nightmare will recur.

Even though I’m more or less well now, I’m still afraid of seeming crazy, of saying nonsense, of spacing out in the middle of giving a presentation, of having uncontrollable tics, of not being able to understand what I read, and of being underestimated because of my illness; I worry about concealing imperceptible symptoms and symptoms that are no longer here, because my anxiety doesn’t know that I’m okay now.

Nevertheless, when I asked one of my new friends if she’d noticed any of my symptoms, she told me I seemed like the healthiest person in the group—that I’m “glowing” with health. Truth be told, I’m actually performing extremely well at my job, and I have a large group of friends who apparently like me a lot. Even if anyone does think I’m “different,” it hasn’t stopped them from befriending me and respecting my work.

I may still have some symptoms, but they’re not preventing me from doing anything that I want to be doing, so how can I complain? Maybe someday soon, if I stay well long enough, I’ll be able to exhale and see for myself that I’m really as well as I am.

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.

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?

I somehow managed to list all three of my psychiatric medications, along with the five antibiotics I rotate in my Lyme protocol. Hesitantly, I also listed Lyme disease as a current medical condition, mostly to explain the many antibiotics. But then I paused… Do I really need to list PANS, too?

You see, in all three of the major PANS exacerbations I’ve had in the last ten years, I’ve not only dealt with crippling OCD, anxiety, depression, cognitive problems, and movement disorders, but I’ve lost my very self; I’ve felt and acted like a different person that no one recognized. Contrarily, I’ve recently started to feel like my “normal” self. Does that mean I’m better now?

During my worst times, it was like an invisible wall had shut me inside my own tormented mind. I was trapped within my own thoughts, yet completely outside myself. I saw the world, but I wasn’t part of it. Life had lost its colors, and my days ran together in a blurry mass of the black and white of OCD, and the gray of depression. My body was alive, but the person I had been was gone.

While each episode could start overnight and suddenly take me away, coming back to life post-IVIG has always been such a long and slow process that I’ve never been able to pinpoint an exact time when I’ve returned; I slowly regain myself and watch symptoms die away at a glacial pace, and it eventually occurs to me that I’m fully present again.

By now, it’s been over a year since I caught Lyme disease and suffered my third major PANS episode, ten months since the high-dose IVIG that was meant to bring me back, and five months since I began Lyme treatment. And recently, I realized that I was finally myself again. So can I legitimately say I have PANS anymore? For that matter, do I really have Lyme?

I know too many people with PANS who are home-bound, yet here I am, driving around town and trying to meet new people just for fun. I know some with Lyme who can’t get out of bed, but I just ran my second half-marathon (albeit five days after an 103º fever herx). I know kids who would love to be able to go to school but cannot because they are too cognitively impaired from their illness—and then there’s me, with eight semesters of college completed and a 3.94 GPA. I know PANS and Lyme kids who literally want to die and can’t even bear to think about tomorrow, but I’m sitting here looking forward to a summer internship. How can I be sick?

Unfortunately, just because I’m “back” and appearing to function quite well doesn’t mean I’m better—far from it. My anxiety has gotten so bad that I’m now taking the anti-psychotic Seroquel each night to help make it manageable. Plus, I remain on Lamictal and Wellbutrin for other psychiatric symptoms. Most days, I continue to have a hard time walking, and I have so many (small) involuntary movements that I physically cannot be still. Oh, and quite often, my speech comes out nonsensical.

There was a time when I was that kid who wanted to die and couldn’t even manage to go outside—indeed, my severe anorexia meant I was slowly dying last summer. Now, I’m the walking wounded; I still get around and can put up a good fight, but I’m not completely okay, either. I have myself again, but I also have plenty of symptoms.

And so, I added “PANS/Autoimmune Encephalitis” right along with “Lyme Disease” on that form the other day. I’m so grateful to have returned to myself, but I’m seeing that healing a brain and an immune system is a long and arduous process (and there’s always the possibility of a flare or relapse). I await the day when my symptoms are finally gone.  So despite my apparently high level of functioning, yes, I really do still have PANS and Lyme—even though I also have myself again.

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’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!

Unfortunately, I quickly came crashing back into reality when I remembered how ill I’ve been lately. At the moment, my anxiety is so out-of-hand that it’s not clear how I’ll finish the semester, because I can hardly even start my assignments.  On top of this, I can barely walk without a mini-seizure causing my legs to collapse, and I’m having a difficult time speaking coherently.  If I’m this dysfunctional right now, how can I possibly hold down a job in a few more weeks?

I have had some really good days lately, too, but even then, I still live with a sense that my illness is following me like the bogie man, ready to jump out and attack at any moment. To me, one of the cruelest aspects of PANS is its unpredictability. Just as I think I’m healthy and in the clear, suddenly, it can overtake me again. I live on egg shells because I never know when PANS will strike next. I fear that I’m always one cold or infection or exposure to Strep away from the brink of insanity.

Even if I improve in the next few weeks, how can I do an internship this summer if I might lose myself any day, without warning?

Nevertheless, after ten years of PANS, I’m a race horse kicking at the gates; for too long, this illness has kept me locked up as I’ve watched everyone else take off without me. Now, this internship is my chance to tear through the doors and speed down the track. I have a life to live, and I’m not about to let PANS stop me.

So I accepted the offer.

At this point, I’m more terrified than excited, but you know what? I refuse to not try just because of the bad things that might happen. I know I may have to pace myself and guard my health more than the other interns. Even so, because I’ve become accustomed to the uncertainty of never knowing how long my symptoms will be in remission, I work very hard on every day that I’m able—apparently with higher-quality results than many other healthy people. If I’m well this summer, then I believe I will not only get through the job, but I will pass everything with flying colors.

I’ve long come to terms with the inevitable uncertainty of my condition, and day-by-day, I’ve been working through the difficulties and moving towards recovery—albeit much slower than I’d like at times. But now, I’m determined to keep working through PANS this summer, as this internship leads me toward my dreams.

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.

As I realized I’d spent the whole night exercising and making calorie calculations rather than actually doing anything productive, I asked myself… What has become of my life?

At one point, I stopped biking and took my computer to the living room for a break for my exhausted body and mind. When I opened my Instagram, there, staring back at me, was a picture from a couple days before, in which I was beaming and glowing in a crisp dress following a successful presentation I’d given at school.

Seeing this happy person cut straight to my heart. How could I possibly have transformed into a binging monster less than 48 hours later? Why couldn’t I stop eating and just hold myself together? If only people knew who I really was—the girl that has Lyme disease as well as an eating disorder that’s spiraling farther and farther out of control—the younger students would no longer look up to me, and my professors would lose their respect for all I’d done.

But then, it hit me: that pretty, intelligent woman plastered to my profile page… That was the real me—not the girl who stuffs her face with junkiest binge food she can find into the wee hours of the morning, despite already feeling like her stomach might explode. Nor am I the girl that screams about wanting to die because of the psychological torment that an inflamed brain brings about.

Over the last ten years of PANS, I’ve so often felt like a person I don’t recognize. Sometimes, I’ve forgotten who I am, because it seems like I’m nothing more than an illness that’s taken over my mind and life. But I am not Lyme disease or PANS or an eating disorder… I am me.

In my worst times, I do my best to not think about who the real me might be, and I try to forget what life is like when I’m well—it seems too painful to realize everything that my illness can rob when it takes control. Yet this week, I’ve started to think that maybe, just maybe, it’s important to hold onto the memories of the better times, because they’re reminders that I am more than an illness or a set of debilitating psychiatric problems.

I don’t believe that PANS can ruin who we are—it can only obscure it. Beneath the brain inflammation and the torturous symptoms, there is still a soul and a personality that is waiting to resurface once healing comes. I may have PANS, but PANS doesn’t have me.

As I closed my computer, gathered up my notes, and packed up my backpack later that morning, for the first time in a long time, I felt hope that there will be a time when I can feel like the person in my Instagram photo every day—the woman that everyone else sees from the outside. Someday, PANS will hide me no more.

The True Meaning of “Tired”

tired-panda-small

When people ask how I’m doing these days, I never know how to answer, so I just say to everyone:

“I’m tired.”

But this isn’t a tired that can be relieved with a good night’s sleep, a break from school, or a hot cup of coffee—this is a tired that penetrates my very soul. It’s a tired that makes simple tasks take untold mental effort. It’s a tired that makes me uninterested in anything more than surviving each hour ahead. It’s a tired that makes me wish people would stop asking about my post-college plans, because I don’t even know how I’ll get through today.  This is a tired that’s sucking the very life out of me.

It’s now been about two months since I began Lyme treatment, and I’ve been herxing every two weeks; just as I recover from one reaction, I start having another a few days later. Each herx not only makes me physically tired, but the roller-coaster of symptoms leaves me mentally exhausted as well. With the last two herxes, I’ve ended up worse than before once they’re over.

Now, after three herx reactions, I feel like my life is slipping away between my fingers, and there’s nothing I can do to stop it. I neither recognize myself nor the nightmare unfolding before my eyes.

Lately, I’ve felt totally out-of-control; one moment, I’m almost okay, and the next, I’m repeatedly telling my mom that I want to die. One moment, I’m able to struggle through homework (albeit slowly and with great difficulty), and the next, it’s as if someone has “wiped my brain;” I suddenly become confused, disoriented, and unable to say little more than choppy words and gibberish.

To make matters worse, my eating disorder is so severe now that my psychiatrist thinks I should start intensive outpatient therapy. My mom has moved in with me, because I can no longer take care of myself. I usually can’t go to work, and I’ve had to drop some classes that I was really enjoying. But truly the worst of all of this is that I’m so depressed that I’m sometimes mad at God in the mornings simply because He let me wake up again.

I’m tired of watching myself fade away. I’m tired of getting better only to get worse later. I’m tired of PANS. I’m tired of Lyme. I’m tired of endless treatments and trips to the doctor. I’m tired of watching life go by while I stand still. Sometimes, I’m simply tired of living at all. How much longer can I keep doing this?

But you know what? The runner in me still knows that being tired doesn’t mean you have to give up. No, “tired” is a challenge and a dare to keep moving forward despite your body screaming at you to quit. Some of my best runs have been those when I was sure I couldn’t take another stride, and yet I went on for several more miles, running faster than I thought was possible.

I may be tired, but with God, I’m stronger than I’d ever dare to believe. I don’t know how many more miles I have to run like this, but one thing’s for sure: I will keep pushing forward, even if it means crawling across the finish line of this disease, tired, exhausted and gasping for breath.

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.

In Response to Your Lyme Questions…

Ever since I announced my Lyme diagnosis, I’ve been inundated with questions from readers. While I’m not qualified to give anyone medical advice, I’ll gladly share my own personal experiences.  Given the number of messages I’ve received, I figured I should answer the most common questions in a post for all of you, so here you go:

What tests did you do?
Igenex Labs. Insurance may or may not cover these Lyme tests, but the standard CDC Lyme tests are highly inaccurate and very often give a false negative when a person actually does have Lyme. Even Igenex can give a false negative, but it misses fewer cases.

If you do get a positive Igenex result (like I did), it can make diagnosis easier.  Nevertheless, Lyme Disease is still considered a clinical diagnosis, so Lyme specialists won’t rely on tests alone to diagnose you—they’ll also consider symptoms and history.

Who ordered the tests?
In addition to my PANS specialist, I have a local GP who is easier to get in contact with, so my parents and I asked her to order Igenex. Although she doesn’t know a whole lot about Lyme or PANS, she’s been very open-minded and willing to try anything reasonable that might help me.  Basically, it was our idea, and she agreed to do it.

Why did you think to test for Lyme?
My PANS doctor told me a year and-a-half ago that it would be extremely unlikely for me to relapse ever again or to need more treatment. But guess what happened this spring? Arguably, this latest PANS exacerbation was my worst ever, which was totally unexpected at age 21, given that it’s supposed to be a pediatric condition.

We all knew this meant some major trigger must have been at work, and given how much time I spend outdoors, a tick-borne illness seemed reasonable.  Although I’d improved since my IVIG in the summer, it felt like there was a missing piece in the puzzle.  I’d heard from many readers that Lyme is common in people with PANS, so my team thought it was time to rule it in or out for sure.

Did you have a tick bite or the Lyme bull’s-eye rash? Do you remember getting sick?
Growing up playing in the woods, tick bites were a given, but I don’t remember having any over the last few years, and I never had a rash. But apparently, only about 50% of Lyme patients get the rash.  However, in the spring, I had a flu-like illness, and I was bedridden for days. Mentally and physically, I never fully recovered. Then, I had heart and nervous system issues (including POTS) that I’d never had before, followed by a descent into a horrific flare of PANS symptoms. It wasn’t the flu—it was Lyme.

Should I get tested for Lyme?
I’m not a doctor and don’t know your history, but if you’re not able to get all the way better with only PANS treatments, please talk to your doctor about Lyme.  Better yet, look into Lyme disease before you go way down the rabbit hole of autoimmune treatments.  While not everyone with PANDAS/PANS has Lyme, it’s still very common in people with PANDAS/PANS, along with its co-infections (Babesia, Bartonella, TBRF, Ehrlichea, etc). The sooner you get treatment for these infections, the better.

My Lyme specialist believes I’ve had Lyme for a decade (though I remain skeptical of this). I can’t help but wonder what my life would’ve been if I were properly tested ten years ago. Don’t make my mistake.

What are your treatments?
I take two antibiotics and seven different supplements/vitamins each day. I also follow a gluten/grain-free diet (almost Paleo) and detox with Burbur and Pinella. And of course, I still take a couple psychiatric drugs (Wellbutrin and Lamictal) to manage my symptoms in the meantime. Everyone’s treatment regimen is unique, though, so don’t be surprised if yours is quite different from mine!

What’s the prognosis?
Every person responds to Lyme disease and its treatments differently. Some people take weeks to heal, others take months, and I’ve heard of some people taking years. For me, I’m expected to be in treatment for the next year and-a-half, and then I’ll just be monitored. The doctor says someday, I’ll get completely better, and with any luck, when my Lyme is gone, my PANS will be, too.  But for now, I’m just taking it one day at a time…

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I hope this answered all of your questions!  If not, feel free to ask more in the comment section below.

Please, please, please look into Lyme disease if you have any symptoms that never seem to go away or that come and go in cycles. PANS is treatable, but sometimes, it’s complicated by Lyme. Just keep searching and hoping, and don’t give up.

For more information about Lyme, be sure to check out: http://ilads.org

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.

I thought I was looking forward to being back, but as I began to unpack, I was overcome with dread and despair, and I had a meltdown. This wasn’t a PANDAS-triggered flare meltdown—this was the meltdown of someone who is simply beyond tired of having to function with a debilitating illness. Yes, it’s important to realize that not every emotional outburst from someone with PANS is caused by brain inflammation—we’re human just like everyone else.

Even though I made straight-A’s last semester and seemed totally together on the outside, honestly, I was a train wreck most of the time. I easily spent (and still spend) two or more hours a day on food-related rituals and obsessions. I restricted until I became too weak to walk to class without losing my breath. And then I binged a lot… And purged. (How I got to that point after not eating because I feared vomiting so much a couple years ago is beyond me.)

As if an eating disorder weren’t bad enough, I had one horrendous PANS flare that almost hospitalized me, and several others that left me unable to get any work done. Sometimes, it took me eight hours to get over my anxiety about starting an assignment, and then another four to complete it. I often slept only two hours and lived off caffeine.

If last semester were the only one that was so difficult, maybe I wouldn’t have been so upset about the idea of getting through another semester. But truth be told, most of my semesters have been almost as bad—and some worse…

Freshman year, I was at least halfway asleep most of the time, which resulted in a narcolepsy misdiagnosis (hence my being the “Dreaming” Panda). Sophomore year, I was often half-crazy, because I had terrible PANS flares every week or two, and in between them, I was barely living. Junior year, I was almost okay… Until I got Lyme disease and anorexia in the spring.

Would you want to be back at college if this was how it’d gone so far?

Yet as hard as college has been, I decided this week to gird my loins and do whatever it takes to finish—even though it means enrolling in 16 credits now so that I can graduate in December. The thought of staying beyond then is simply too much to handle.

Indeed, these first three days of school have been anything but easy so far. I have more homework than ever before, and more pressure to do well now that I’m a senior. And on the second day of class, I had a Herxheimer reaction that put me on the couch and shut me up inside my apartment all weekend—but thankfully, I was actually able to get some work done.

But you know what? Even though college with Lyme and PANS is difficult, I’m just glad that my Lyme treatments have made me well enough to be here trying at all. A month ago, my family and I were looking into residential care, so I consider it a gift to even be able to struggle through school again.

At the start of every semester, my parents have tried to encourage me by saying, “Maybe this semester will be better than the last one.” Much of the time, it hasn’t been, but my Lyme treatment is most definitely relieving my symptoms already. And so, this time, I’ll join in their optimism:

Maybe this semester will be better than all the other tough semesters…

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!

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.

Lately, I’ve been feeling like that about my fight with PANS and about my health in general, because I just got some troubling news: I tested positive for Babesia, exposure to Tickborne Relapsing Fever, and possibly Lyme Disease. Just when I thought I was back on track, I’ve now found out that I could still face a long road to healing.

And of course, all of this is on top of my ongoing challenges with PANS, anorexia, and an immune-deficiency. I’m back at a healthy weight at this point, but some days, I’m still so incredibly tormented by the anorexia thoughts that I’ve considered spending my winter break in residential treatment. And my Common Variable Immune Deficiency (CVID) means monthly low-dose IVIG treatments, which means I spend a day at an infusion center each month and then feel exhausted for almost a week afterward.

Some days, I don’t think it’s ever going to be possible for me to win the “PANDAS Games.” I know I’ll survive, but will there ever really be a time when I’m well without taking antibiotics and antidepressants, getting monthly infusions, and constantly worrying about avoiding Strep?

For those of you who don’t know the story of the The Hunger Games, in the second movie, the people who won the Games in the past were forced to compete in them yet again, after they’d been crowned as victors and promised a lifetime of security and riches. I’m no different from those people. I beat PANS a year ago and went on to live my life and do some pretty amazing things, but then it came back this summer, and I’ve been forced to compete in the PANDAS Games all over again. Can I really win this time around, too?

Fortunately, my doctor, who’s one of the leading experts in PANS, has told me since that first day when I limped into her office two years ago that I’ll get totally better someday and be able to put all of this behind me. She’s repeatedly said that, with proper treatment, no one has to be stuck with PANS forever.

I certainly have my moments of doubt, but it’s true that, even now, I’m well enough to be making straight-A’s in part-time college, holding a (very) part-time job, and socializing more than ever. Oh, and I just ran eight miles this weekend, while in July, my POTS basically made me pass out from just standing up. Even if it seems like it’s impossible to win these games, the fact is that I’m well on my way to being crowned a victor, yet again.

Haymitch might have been right about the Hunger Games, but he’s wrong about The PANDAS Games: someday, somehow, I’m going to be a winner for good.

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