PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

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.

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Comments on: "Why I Almost Quit Lyme Treatment" (13)

  1. Keep going! Those herxes were honestly some of the toughest times I’ve ever experienced. But now I’m finally in remission, and all those rough days were worth it. There is a light at the end of the tunnel, even if you can’t see it yet.. I promise! x

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    • Thanks for the encouragement! So glad to hear you’re in remission. Sometimes it seems like no one ever gets better, so it’s reassuring to be reminded that it is possible. 🙂

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  2. Stay strong! Herx reactions are terrible and I understand the fear of continuing treatment 😦 I will be keeping you in my thoughts and prayers!

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  3. Heather said:

    No offense to Melanie, but be careful with epsom salt baths. They work for a lot of people but gave me (more) seizures. Perhaps because of a detoxing problem, though. Just warning you.
    With Lyme Herxes I have been there and done that. Not your same symptoms, but about bad herxes I TOTALLY GET IT. Keep going, girl! Fight fight fight!
    Praying for you!
    Good for you to have the will to live. Yesterday I didn’t even have that (hospital for a week and 24/7 pain can be depressing).
    Since I’m at Johns Hopkins I can’t check my email. If you need to contact me, Iris, shoot me a Google Hangouts message and I will get back to you ASAP. Just create a new conversation with my email address.

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    • Hi Heather, it’s so good to hear from you! I’ve been thinking about and praying for you. I’m so sorry to hear you’ve been in the hospital. Hang in there! I’m sending you a Google Hangouts message.

      Thanks for the warning about Espom salt baths. I didn’t realize they could have effects like that in some people.

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    • Charlotte said:

      Hey Heather and The Dreaming Panda (I am not sure what your name is). Heather, you may know me from your blog but I just wanted to tell both of you that you are both so amazing and stay strong. I need to do the same I guess (I have LD also). Anyway stay strong!

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      • Hi Charlotte, thanks so much for the prayers and encouragement. It means a lot to know there are pople out there who care. I wish you all the best in your fight against Lyme, too. We can get through this!

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    • Charlotte said:

      Praying for both of you!

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  4. I’m so sorry this is happening to you. I think you’re amazing and I will keep you in my thoughts…….you will get through this……..I hope things take a turn for the better very soon.

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  5. Melanie said:

    Sorry to hear this. Has the dr given you anything to help with Herx’s?
    Charcoal caps
    Alka Seltzer Gold
    Epsom salt baths
    There’s an entire list you can Google. I’ve heard when herxing, you may have to decrease dosage of antibiotics or hold off on them temporarily.
    Herxing puts patients in a terrible position. I hope this gets better for you very soon.

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    • Hi Melanie! Thanks for the suggestions. I’m on all sorts of supplements to help prevent herxes, but I think sometimes there are still too many bacteria for my body too handle. Epsom salt baths, Alka Seltzer Gold, burbur-pinella, and lemon water have been helpful so far, but I’ll have to look into the charcoal caps. Thanks for the advice!

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