PANS + Lyme: Recovery and 8 Years of Misdiagnoses

Posts tagged ‘Antibiotics’

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…)

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.

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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 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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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…

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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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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.

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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.

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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.

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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.

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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…

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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…)

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