PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

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.

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Comments on: "Minor Symptoms, Major Anxieties" (8)

  1. Wonderful post. Thank you so much for sharing how you are feeling and what is going on in your life.Congratulations on your much deserved success with this internship. YAY!

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  2. Such a hopeful blog post! I appreciate the balance between the reality you perceive others to see and the reality you perceive yourself to experience.

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  3. A Fellow Panda said:

    I’ve had a few tremoring episodes lately, and each time I almost launched myself into panic mode. “There must be an infection! It’s coming back!” Turns out it was just fatigue taking its toll, and I am in yet another season where I thrive on 11-12 hours of sleep a night. Being in the 3rd trimester of pregnancy might be part of it, I suppose. Don’t be too hard on yourself, dear. You are doing great!!!

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    • Thank you, Panda! I’m sure pregnancy has a big impact on how everything in the body functions and how much more rest you need. Wouldn’t be surprising if it did mess with PANS symptoms, too. Best wishes for a healthy rest of your pregnancy and a healthy baby!

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  4. Melanie said:

    So happy for you! I’m well aware of always waiting for the other shoe to drop. But, there comes a time when the person/body wins & you move ahead, leaving your illness behind you.
    Have you ever considered Cannabis oil for the anxiety, without THC, can also come from hemp?

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    • Hi Melanie, I’ve heard about a lot of benefits for Cannabis oil, but I’m not sure if I can get it in my state or not. I do know that one of my PANDA friends said it helped him a lot, so maybe I’ll look into it…

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