When the possibility of having a PICC line was first brought up, I didn’t want it (I still don’t). But the one thing I said was I just need to be able to hold out until after my conference in Vegas.
Well, I made it. But the nausea is just completely beyond ridiculous. I called the doctor’s office twice asking for more Zofran and nothing has been called in. I have been babying these last few pills I have.
The food choices in our hotel were so limited, we didn’t have a car and the hotel was off the strip. So I finally just gave in and started adding a few veggie carbs (potatoes, beans, etc). It seemed to help my stomach some so I at least could keep my antibiotics down. I don’t know why they’re not calling in my prescription for the Zofran. I’m freaking out a bit about adding the carbs since it’s not part of the Lyme diet but I figured it’s more important to be able to keep my medication down.
It’s been 8 weeks since I started the antibiotics so technically only four weeks to go before they end my treatment. I keep asking her what happens if I’m not better and she keeps saying that some damage is permanent and you just have to learn to live with it. That terrifies me. I ask every time I go in hoping for a different answer but it’s always the same.
Everything online says that you should continue treatment for 2 months past the last symptoms. I haven’t had two days without symptoms so I don’t know what I’m going to do if she just pulls the plug on treatment. I sincerely hope that isn’t why I haven’t received a call back from her.
I am so stressed out over the possibility of them ending treatment before I’m better and having to switch to a doctor who is self pay. I have no idea how we will be able to afford that. But if I don’t get better, I won’t be able to work at all and then we won’t be able to afford anything! And of course, stress isn’t good for Lyme so then I’m stressing out because I’m stressing out!
One thing I have noticed is that my symptoms seem to be coming in flare-ups every 3-4 weeks and it coincides with my period. I’ve never had any PMS type symptoms so I know it’s not that. And my symptoms aren’t gone the rest of the month but I can basically count on being knocked on my butt during that time period.
I’m really nervous about going back next week. I feel like I’m starting to go backwards. The floaters are getting worse and the brain fog is really bad. I’m mixing up words and forgetting things so much that I just try not to get involved in a lot of conversations at work. I write down every single thing someone says to me at work so I won’t forget.
I just don’t know if I can tolerate another four weeks of these oral meds with my stomach the way it is. I’m down a total of 50 pounds now – granted, part of that was intentional, but lately it has not been.
I guess we’ll see what she says when I go on the 15th. Also, on the 14th, I go to the thyroid doctor (finally!) who is covered by insurance and highly recommended by people on a thyroid forum that I found. So hopefully he is going to help me as well and not freak out that I have Lyme.
Oh, I don’t think I shared that story yet. I went back to my primary doctor for a totally unrelated issue and in the middle of the appointment, I mentioned that the integrative doctor she sent me to had found what was wrong – I have Lyme. She looked up at me, closed her laptop and walked out the door without saying a word. I sat there for a minute waiting and then figured out she wasn’t coming back. So I went to the front to get my prescription and left.
Bizarre! And the perfect example about how controversial Lyme treatment is! I will be requesting another NP or the MD when I go back to that office!