PANS + Lyme: Recovery and 8 Years of Misdiagnoses

Why I Won’t Eat

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

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

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

This time, my eating problems began suddenly, a few days before a bad virus three months ago.  There have since been periods when I ate without guilt and felt no need to restrict, but at other times I’ve suddenly become completely tormented by food—classic PANS.  My eating disorder is, in essence, mental and physical torture.

PANS-related anorexia isn’t necessarily like typical Anorexia Nervosa, however. In my case, I’m fully aware that I’m too skinny, but I’m compelled to continue my restricting anyway. In the past, I’ve also restricted because I was convinced that virtually all food would make me throw up, so the only thing I would eat was one particular kind of fruit smoothie.  Now, I’m afraid eating will make me gain weight and lose control of myself, so I’m obsessed with consuming a certain number of calories each day.

Living with my PANDAS-triggered eating disorder is like watching myself drive towards a cliff and not being able to stop, even though I’m the one behind the wheel. I know my behavior is dangerous, but I feel compelled to continue anyway.  I know I’m losing an unsafe amount of weight, and I know it’s bad to not eat. But the anxiety caused by eating any more is so intense that I would rather continue to restrict. Even worse, there’s some part of me that derives a twisted form of pleasure from not eating.

Sometimes, I also still enjoy the taste of food, but I often feel bad about it afterwards. In my mind, no matter how little I’ve eaten, I’ve always eaten too much, so I’m always guaranteed to gain weight. I know what my doctors will say about me weighing only 96 pounds, and I know it’s dangerous to have lost 13% of my initial, healthy weight. But for some reason, I just feel like I need to keep going, and the torment surrounding this urge is too strong to resist.

All day long, I’m doing calorie math in my head, planning my meals for days. I feel guilty about what I ate, and unsatisfied with what I didn’t—PANDAS tells me I’ve never eaten too little.  I’m beyond exhausted all the time, and I fear it’s because I’m malnourished.

I never imagined I’d become so ill again. I never thought I’d take things this far. Sometimes, I don’t feel like I have a problem, because I believe so strongly that I’m still in control of my eating disorder. But part of me knows that while I thought restricting would give me control over my body, it’s instead made me lose all control I had left.

On some level, I find comfort in the “control” I think I have through restricting, but deep down, I know I can’t continue like this. Deep down, all I really want is to be able to enjoy food again without any guilt and to be strong enough to run.

I’m tired of food controlling my life, and I’m tired of feeling so bad, so I’ve decided to start outpatient treatment for my eating disorder. And of course, I’m going back to see my PANDAS doctor to address the brain inflammation that triggered it in the first place.  Finally, I’m going to have the Igenex labs run to test for Lyme and co-infections (in addition to a couple dozen other blood tests).

Although I’m scared to stop restricting, I’m so ready to be free and strong.  I’ve decided that, somehow, I’m going to eat with pleasure again. 

Comments on: "Why I Won’t Eat" (12)

  1. […] 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 […]

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  2. […] between them, I was barely living. Junior year, I was almost okay… Until I got Lyme disease and anorexia in the […]

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  3. […] 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 […]

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  4. […] to stop, anorexia had so much control over me that I wasn’t completely willing to give it up. I said a few weeks ago that I was going to start treatment for it, but honestly, I was so depressed the day of the […]

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  5. […] other day, when my parents discovered I was still restricting and losing weight, they contacted my neurologist, and she put me on a one-month steroid taper. I really didn’t think […]

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  6. […] Although there are medications such as beta-blockers that can help POTS, for now, my treatment plan is to take in more salt (about 5000 mg of sodium each day), drink more water (2-3 liters), and slowly ease my way back into exercise. I also need to be sure I sleep enough and eat well (easier said than done while fighting an eating disorder). […]

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  7. Hang in there. From what I can understand you are on the right track by seeking coping skills, while looking for underlying co infections causing the inflammation. The outlet for coping with the resulting anxiety seems to change shape from time to time doesn’t it? My son’s has gone from the extreme separation anxiety to invasive thoughts. His touched on calorie restriction here and there in the past, and now as he is older (14 yrs) and able to articulate the process, he shared with me recently that trying to reason with the invasive OCD thoughts was actually feeding it. So he has to cope with it- trying to let the thoughts pass like dark clouds while we focus on healing the brain and reducing inflammation. A moment to moment process at times. You are courageous to share the downs along with the ups. I’m holding you as healthy and well in my heart. ❤

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    • Thanks so much for such a thoughtful comment. My parents and I always say that PANDAS is a game of whack-a-mole–sometimes as soon as you get rid of one symptom or source of anxiety, another pops up. But the game does end eventually. You’re so right that reasoning with the intrusive thoughts just makes them worse. I have found the same. Thanks again for thinking of me!

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  8. I am so glad you are seeking help. It troubles me to see the inner turmoil you have to indure with your illness. While I do not know you I feel so saddened for you. I am praying you get out of this flare quickly so you can resume the path you so richly deserve. You are in my thoughts and prayers.

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  9. I am so sorry you are struggling so much but pleased you are getting help. Your post is so helpful for those of us who struggle to understand OCD, PANS, and eating disorders. You convey so well how you know that restrictive eating is bad for you, but you just can’t stop.
    Coincidentally I wrote a more general post this week on restrictive eating: https://ocdtalk.wordpress.com/2016/06/26/ocd-and-restrictive-eating/#more-8355
    Wishing you a quick journey back to good health.

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