About a month after my ALS diagnosis in 2012, I received a questionably positive test for Lyme Disease. The reason I say it was questionable is because even the diagnosing doctor, a Lyme expert, said that it was not *exactly* definitive, but that we should nevertheless set out to treat it, just in case.

I was all in. Earlier Lyme tests had been negative, and I knew the treatment was intense. But I had ALS. If I’d been told there was a chance that living in the washing machine and eating styrofoam would help me, I would have done it. And then I think this would be a very different blog.

I arranged to have the necessary minor surgery. A skinny tube called a peripherally inserted central catheter (PICC) was fed into my arm, traveling through my body to its final destination in my chest. It took about a month to get insurance to agree, and to get the appointments scheduled. That was all time that I was sure was being wasted, time keeping me from getting to this potential cure.

How had I gotten Lyme Disease? There were realistic answers to that question. Jogging in the woods in Northern Wisconsin, camping in the mountains of California, spending a week in rural Vermont with a bunch of hippies who traveled around in a van and ate mushrooms out of a honey jar…I feel like I’m going to stop talking about that one now. The point is, the lyme-infected ticks and I, we had shared territory.

My family was hopeful. We still felt that there was no way I had ALS. That this was some crazy mistake brought on by outdoor adventures or youthful folly was far easier to believe.

With the PICC in my arm, life (showering) was a little more complicated, but all was manageable. I was taking oral antibiotics and shooting up a drug called Ceftriaxone, which failed in a clinical trial for ALS, but effectively treats bacterial infections like Lyme.

I wanted it to be Lyme. I wanted it to be something treatable. I wanted it to go away.

On Day 7 of my treatment, I was home alone, pumping my body full of the drug while watching old episodes of The Good Wife, when suddenly my butt itched. A lot. I pulled my pants down and saw that my legs were exploding in red bumps, and as I watched, the bumps grew and spread. I was covered in hives.

I stopped the medication drip, but the hives kept coming and I started to feel faint. Was my throat closing up? Was it going to? In my panic, I grabbed a syringe and two small bottles that had come with my doping kit. One was generic Benadryl and the other was Ephinephrine.

Forgetting that I could have filled a syringe and calmly fed the Benadryl through my PICC, I instead performed the scene from Pulp Fiction where John Travolta jams a giant needle into Uma Thurman’s heart and brings her back to life. I did it with a smaller needle, into my tricep. No magic marker, no Eric Stoltz, but a similar amount of sweatiness and foul language. And then I filled up another needle with Epinephrine and did the same thing.

Sooooo…then I was unconscious for a while, because that’s what happens when you psychotically overmedicate. It’s also what happens when you spend a week on a farm in Vermont with those hippies I mentioned earlier, but I thought we weren’t going to talk about that anymore.

There was additional drama. I skipped the part where I called 911, and then told them never mind, because I realized during our conversation that I was still breathing. And the part where I placed a crazed call to my doctor and he assured me I was not going into anaphylactic shock. And the part where my dad walked in right after that and hugged me, and I crawled into bed and didn’t get out for many hours.

You might think my days of taking a medication I was severely allergic to would have ended right there. But no. My doc and I hatched a new plan, to start the treatment by injecting a massive dose of Benadryl into the PICC, followed by the Ceftriaxone. I did this every night for 2 months, stoning myself into such oblivion that I didn’t even really notice that I was still breaking out in minor hives. And all the while, my legs got worse.

It became clear that it wasn’t working, so I moved on, tried other things. Nothing quite as dramatic, nothing nearly as invasive. Maybe one day, something will work. And even if it involves hives and styrofoam, I’m lining up.

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