Apparently, I don’t!

I went out for lunch with a coworker a few days ago. When my food arrived, I tasted the hamburger and it was really strange because I could feel it in my mouth but it didn’t taste like much of anything. Then I tasted one of my sweet potato fries and it tasted the exact same – like nothing. I asked my coworker to taste it because I was sure something was wrong with the food. Nope, tasted fine to him.

So what in the heck is going on?!

I’ve noticed over the past few weeks that things weren’t as flavorful now that I think about it. But this was the first time it was like I was eating air. Since then, I’ve noticed I can only taste the salt on food and I can taste a little bit of flavor in my protein shakes. Other than that, it all tastes the same.

Do you know how completely uninterested you are in food when it all tastes the same? I basically don’t care if I eat AT ALL now.

So when I went to see the NP today, I mentioned it to her and she flippantly said oh yeah, that’s a side effect of the medication. It may come back after you stop it. If it does, it could take a few months. May come back? If it does?

Have I mentioned how much I HATE this stupid disease and everything that surrounds it?!

Then she told me that my bartonella test came back negative. I wasn’t really surprised because many other Lyme patients have told me in the past week that the possibility it will show up, particularly on antibiotics, is not good. It’s one of those that is usually clinically diagnosed. And she’ll never treat me for it without a lab result.

We went over my symptoms and the fact that the neurological ones are still hanging around and she said it looks more and more like I’m going to go for the full 12 weeks. And she seemed irritated by that. She told me to expect that my insurance will quit paying very soon. Thanks for all the encouragement….

After today, I never have to see the NP again (hopefully) and can just see the doctor. So there’s my bright spot for the day because there isn’t another one.

I went back to see the NP today. This past Tuesday marks four weeks since I got my PICC line.

The first thing I said when she walked in was “I saw the doctor last week and the first thing she said when she saw me was did you know your face…” and she completed my sentence and said “is drooping on the left side?” I said yes! She said she noticed that several weeks ago and she just assumed that I knew.

I told her I didn’t know and the first I’d heard of it was in the doctor’s office last week. She was shocked I didn’t realize it. I was irritated she didn’t say anything!

So then it was on to other symptoms. I’m still not seeing big improvement with the brain fog type issues (mainly all the neurological symptoms). She said she now doubts I’ll be done in six weeks and we’re just going to have to wait and see how this all turns out.

Which is fine by me. As I said before, now that I have the PICC in, I want the treatments for as long as possible to kill as much of the bacteria as possible.

I also told her about the foot pain I’ve been having. It actually started over a month ago but it’s getting worse. When I wake up in the morning, I feel like I’ve been standing on rocks all night. I’ve tried sleeping in different positions and nothing works. Foot pain is a symptom of one of the coinfections. I asked her if she had tested me for bartonella and she said she had not. So she ordered that test today and I’ll get the results next week.

I’ve also been having drenching night sweats, as in I need to change my clothes in the middle of the night. This can also be a sign of a coinfection or just herxing from the medications.

If it comes back positive, it will be another antibiotic by mouth added to the mix. I almost hope it does just because it would explain why I’m not seeing a big improvement. Not that I want anything else to be wrong but I just want to get better. And if there’s an infection there that’s not being treated, that’s never going to happen!

I think I’m going to have to come back to see the NP next week because of the way my schedule is working out at work but after that, it’s just the MD for me.

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.