Discoveries...

At the time, Dr. R. was in Stamford, CT. I took the ride down there with my mom. At this point in the journey, I had pretty much given up hope that anyone would be able to tell me what was wrong with me. It was liked being trapped in your own private hell -- one that has no name and no explanation. It also had no validity to me. If you don't know that a tree is a tree, when it falls in the woods, does anyone give a crap?

My appointment was with Dr. R's PA, Natalie. She brought me into her office, and asked me to tell her what was going on. I took a deep breath, and started speed talking like the Micro Machine's guy (remember him?)  to fit everything into what I was sure was going to be a 15 minute appointment. She started to giggle, and told me that she had 3 hours blocked out for me, so I could take a deep breath and slow down. We would take as long as it took.

We laughed, we talked, I told her everything that had happened, and everything I was feeling. She wrote pages and pages of notes. And since I have recently gotten copies of my office notes, and I have decided to tell the truth as best I can, let's see where I started (Natalie's notes are italicized to italicize the innocent):

Current Symptoms (on 2/15/2006)
- Extreme fatigue
- Irritable and easily angered (no comments from the peanut gallery, please)
- Confusing words and objects (calling a pen an elephant)
- Not knowing herself (as in sometimes I didn't know who I was or what my name was)
- Becoming completely lost and confused
- Word retrieval problems (what?)
- Headaches (which is an understatement)
- Light and Sound Sensitivity
- Waking up feverish
- Non-restorative sleep
- Low energy during the day
- Pain in the soles of her feet, especially in the AM
- Continual foot pain, ankles, knees, back, shoulders
- Knees, hands and ankles swell
- Short of Breath
- Sharp shooting pains around chest cavity
- Palpitations, racing heart
- Numbness/tingling in hands and feet
- Heat sensations in night on legs that wake her up
- Hospitalized for vommitting blood (now, that might be considered over-sharing)
- Always low grade fevers

Recent Symptoms
- Bell's Palsy (the right side of my face would go completely numb and useless...hot, I know)
- Trouble speaking and would lose herself in the middle of a sentence
- Walking difficulties, using a walker
- Muscle weakness and coordination problems
- Extreme weight loss and gain
- Extreme joint pain
- Skin painful to touch and clothes

I think, in short, I'd call myself a hot damn mess!

Four hours later, Natalie said that we'd need to do confirmatory blood work, but that her opinion was that I had Lyme Disease, and probably at least one Co-Infection.  I looked at her, and burst into tears.  I cried for all of the times I had thought that maybe I was just crazy.  I cried for all of the doctors who had brushed me off.  I cried for how horrible I felt.  I cried for all of the fights this had caused in my family.  I cried for all of the friends that I lost.  I cried for all of myself I had lost.  And mostly, I cried out of relief that this finally had a name, and that I could say it out loud.

The blood tests (that had to be sent out to a specialty lab, since the ordinary blood test is only about 45% accurate) would later reveal that I had Lyme, Babesiosis, Bartonella, and Ehrlichiosis.  I was disappointed not to have Rocky Mountain Spotted Fever too, since I think there is some sort of prize, if you get all 5, but people accuse me of being an over-acheiver.

I was so drastically ill that it quickly became apparent that I would need IV antibiotics.  So, in went my first PICC line.  A PICC line is a peripherally inserted central catheter.  In short, the tube that sticks out of my arm goes all the way to my heart, so that the IVs are inserted directly into my heart.

The man who put in my PICC line (Tom, maybe?) was chatting with me while he was putting it in.  It's a weird feeling.  They numb up right at the insertion site, and then stick a fairly large needle in your arm into the vein, and then snake a PICC line that has a wire in it up your arm and across to your heart, and then take the wire out, leaving the PICC line in place.  And yes, you can feel it in there.  Especially when they pass your neck.  You can feel the blood flow decrease.  After about a week though, I don't feel anything at all.  Just the occasional twinge when I forget about it, and pull on it.

Wait.  Where was I?  Oh right...Tom.  He asked what drug I was put on.  I told him Rocephin.  He looked at me, deadpan, and it went something like this:

Tom: You look really upset.
Me: I am.
Tom: Well, the good news is, you might feel like shit, but you can whore around all you want to.
Me: What???
Tom: I'm just kidding.  Rocephin is used to treat all the STDs.
Me: Well, at least that's something!

I thought my journey had finally come to an end.  I had a diagnosis, and I had a cure.  After all, that's how medicine works, right?  I had no idea what was in store, and that instead of a tidy end, I found myself at the very beginning all over again.