So my nervous system is shot

Goddamn it.

I’m so done with this disease. I’m over treating it. I’m just pissed the fuck off right now.

I finally was able to speak to my Lyme Dr. today after waiting 23 days to talk. I told him about my lack of eating due to taste (300 calories yesterday) and how bad I’ve been feeling because I have no energy left, and he is ceasing all treatment. It’s his opinion that the Lyme is attacking my central nervous system and therefore causing my body to go into “freakout” mode. The nerves that tell my brain to eat and taste are being impacted by the die off of the Lyme from the antibiotics. Die off is a good thing, except when it reacts in this way. Which is just perfect. Right?!?

So the next step is to stop all antibiotics and immediately begin Neurotin – a new and super fun drug (grrrrr) that will hopefully allow my central nervous system to repair itself and get back to normal.

Will I ever eat again? I don’t know. My LLMD doesn’t seem to know. All we both know is that for now I can’t live off of 300 calories a day and there’s no way I will get better on this path.

So yep, pulling the plug on the past 7 weeks of treatment.

I am over this. This is the most upsetting and frustrating disease I’ve ever heard of. There are so few Dr.’s that treat patients, the treatments are all nutty, and I’m just over this.  I want my life back. I want to eat and I want to be done with this.

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4 Comments (+add yours?)

  1. Mel
    Jan 09, 2014 @ 18:25:16

    Oh hon, I’m just here, abiding with you. I wish there was more the rest of us could do besides just listen.

    Reply

  2. A
    Jan 10, 2014 @ 15:29:01

    Here as well–love and support . . . .

    Reply

  3. Rebecca
    Jan 10, 2014 @ 15:48:42

    This just sucks. So much. It really, really does. I’ve never known just how horrible and awful and generally ridiculously sucky Lyme and its treatment is. I can’t believe how horrid it is. I’m just so sorry that you’re having to deal with it.

    Sending much love your way and many hugs.

    Reply

  4. Blanche
    Jan 11, 2014 @ 14:24:34

    Hang in there – you’re a fighter! Can you choke down smoothies even if you can’t taste them? I’m really concerned about your lack of calories. 😦

    Reply

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