For the first time, I didn’t have to work at home to be able to go to my doctor’s appointment (not that I’m complaining about working from home!). I went to the new office and it’s just one nurse and the doctor there. They are set up to do infusions in this office as well and she shares the space with other physicians.

She came in and the first thing she said was “Did you know your face is drooping on the left side?”. I was horrified and immediately said no. I’ve never wanted a mirror so bad in my life! She reached over and was lifting just above my eyebrows and having me try to raise my eyebrows, smile, etc. And then she said that I’ve developed Bell’s Palsy.

Lovely.

It only happens in about 10% of Lyme patients and is a sure sign that there is neurological involvement. Not that I needed any more proof of that – I’ve been experiencing neurological symptoms for months. But this is something the doctors can actually see and know that it is happening versus me telling them about a feeling or sensation in my head or memory loss, etc.

I guess if there is one thing this confirms, it’s that I’m not vain and I don’t smile at myself in the mirror because I honestly had no idea. When I went back and looked at pictures taken in the last few weeks, it was quite obvious. It was especially obvious in a picture I had taken just after I had my hair cut but I was so focused on my hair in the picture, I completely ignored the drooping in my face. Now that I look at it knowing to look for it, it’s quite obvious and I’m surprised I missed it.

There’s no real treatment for Bell’s Palsy other than time, especially since steroids are a big no-no for any Lyme patient. So I began to ask her all of my other questions and wow, the answers were so different than what the NP has been telling me. First, she said there is a 12 week limit on the PICC line. Regardless of symptom relief, it comes out at 12 weeks because it can be more dangerous due to infection risk to leave it in. She also said she’s never had a patient who didn’t clear neurological symptoms in 12 weeks. So in that regard, they agreed. But that was about it.

The next contradiction was in how much medicine I could have through the PICC. The NP told me she would not increase my dosage beyond 1 gram per day. She told me in the past it was a possibility but when I asked again, she said they didn’t do that. The MD said they do go to 2 grams in some patients and have been known to go even higher in extreme circumstances. I had also asked the NP before about protecting my gallbladder because I had seen reports of people having their gallbladder removed on Rocephin. She told me there was no such thing and she didn’t know of any cases. The first thing the MD mentioned about increasing the dosage was the risk of gallbladder attacks and some patients requiring surgery.

The MD also told me that there are no hard and fast rules for how long oral antibiotic treatment can last. And if I’m not better at the end of the PICC line treatment, they will put me back on oral meds. The NP told me that when the PICC line comes out, my treatment is over. It doesn’t matter if I’m better, I will just have to find a doctor to treat my symptoms and I may consider going on anxiety/antidepressant medication (um, think I’ve heard that line of BS before!).

I asked her if Lyme could be cured. And she kind of smiled and said she would be thrilled if I could get to 80% of what I was before I got sick. That was really disappointing to me to hear, but it is what it is. She did say at some point, the antibiotics have to stop and you have to see what your body will do on its own but I was nowhere near that point and she would estimate I would still have several months of oral meds after my PICC line is pulled. And it can flare up again under the right circumstances. She emphasized how important adequate rest is and that I need to have as little stress as possible in my life.

The other thing that was different was that she actually did a quick exam – listening to my heart, etc. The NP has yet to lay a hand on me. In fact, the closest she’s been is a good three feet away from me.

So I really liked her. She took up a lot of time with me and patiently answered every question that I had. But I was utterly confused. How could the NP who works under the MD be treating patients in a completely different manner?

I think I will go back to the NP one more time, mainly because I want to know if she noticed the Bell’s Palsy and didn’t tell me. Then I will only see the MD from this point forward.