My Home Health Nurse
Yesterday, when the nurse came to do my blood draw, she was able to get the blood to flow back out, but it was really slow. She said I need to mention it to them when I go back to the doctor.
She was also telling me about all of the Lyme patients that they have in their care and again reminded me that there are only two doctors in the entire state that they know of that will treat it. That just absolutely blows my mind. I know there are more than that because I’ve personally dealt with three now but two of the three are completely under the radar.
She also told me about one of their patients who is going to be doing hyperbaric oxygen treatments (HBOT). Lyme hates oxygen so the theory is if you overload them with an oxygen rich environment, they will die. I decided I’ll ask about this when I go back. It would be incredibly inconvenient because you have to go for two hours a day, five days a week for up to 12-14 weeks, but if it works, it will be worth it. The other thing will be whether insurance will cover it.
My Doctor Visit with NP
When I went today, I said something to them about my PICC line moving slow and they said it probably has developed a small clot at the end. The word clot kind of freaked me out but they said it wasn’t the break off and kill you kind of clot – my words, not how they said it. She said they would send me back to the infusion center after the appointment.
I told her about the new neurological symptoms that are cropping up now that I haven’t had before. She told me to think of it as the Rocephin is getting into places where the Doxy was not so it’s a good thing. I’m trying to convince myself of that but it’s hard when you don’t feel good. She is now estimating that I will have to do six weeks instead of four weeks. At this point, I want the whole 12. The bad part was getting it put in place so I may as well get all I can out of it now.
I also asked about the HBOT. She kind of rolled her eyes and said she didn’t believe in it. I was shocked she said that because I knew it was one of their patients who was doing it. So I just told her what the home health nurse said. And she said they do have someone who is doing it but she doesn’t believe in it. It was then that I got the first hint that she was possibly treating patients differently than the MD was. So I wonder what else they disagree on? Definitely interesting.
I asked about seeing the doctor and she told me they have opened a new office near where my office is. I am currently working from home when I have to go to the doctor (once a week) because it’s 45 minutes from home (and my work is 35 minutes in the opposite direction from my house). Only the doctor is at that location, who I actually haven’t seen yet since I’ve only been seeing the NP, so I think I am going to go to see the MD next week. And then I’m going to ask every single question I’ve asked the NP about treatment to see if the answers are different. Maybe this strict treatment timeline is just the NP’s belief?
Getting the PICC Moving Again
As for the PICC, I went back to the infusion center and she played around with it, pushing heparin and moving my arm at different angles, until she got a good flow again. Then they sent me on my way.
So far, everything is going well with the PICC minus that one little hiccup. It’s not as bad as I thought it would be to do the treatments. I just need a blanket when I do them because I absolutely freeze! Our biggest thing is remembering to take the meds out of the fridge so they can be at room temperature before I infuse them.
The Tally…
Oh and it’s the end of the month so it’s time for another tally. Last month, the total was $7,113.80. This month, it’s $23,021.33!!! My IV meds and supplies are being billed at $4,000/week! I was told this will fluctuate each week but holy cow! And of course the bill for my PICC placement was in there as well as all of my thyroid/adrenal labs.
My insurance has covered all but $1,329. These totals don’t reflect prescriptions I get from the regular pharmacy or the supplements. I’d estimate that’s another $4,000 right now, of which I’ve been responsible for about $600.