Still without a PICC line. This is week three of of the waiting process. It's also week one of having no antibiotics in my system. This is not by choice; It's due to the fact that I can't get a single one of my doctors to work together, nor can I even get a call returned.
I have one of the most reputable Lyme Disease doctors in the country, and if I wasn't pregnant right now, I'd fire his ass and start the long, expensive search for another doctor.
My issue is simple: I need antibiotics asap to protect the baby and to continue with my treatment. I call my LLMD to get a refill on my orals, because some drugs are better than no drugs while we we wait for the insurance stuff to clear up. They say they will work on it. Days pass, and there's still no Rx called in. I email the PA in the office, explaining how important it is that I get some meds refilled. I also explain to her that my symptoms have worsened. I'm having trouble maintaining a normal heart rate, which is scary. (My pulse goes from low 80s to 52 bpm within a minute or two, which makes the room spin and my peripheral vision go black. I'm also a neurological mess. What should I do?
I also express my concerns: High risk doctor staff admits that they're unfamiliar with the IV treatment/insurance process. Insurance has already denied two appeals, and now our final hope is to submit an appeal in writing. It will be kind of hard to write the ridiculously detailed and legal savvy letter I need when the person writing it doesn't even have a list of my current symptoms.
Why don't they have that info? Because no one returns my phone calls on either end. The doctors offices are not talking to each other, and I'm sitting around powerless waiting for someone to do something. Keep in mind, I am not being a pushy jerk about this. I am always friendly, but firm and fair. Maybe I should change my tune? After all, I pay both doctors way too much money to have to put in this much work by myself.
In the end, I ask the PA for one thing: Please write an adequate letter for me to submit to the insurance company, because her letters have worked with insurance in the past, and she knows my case more than the new high risk doctor does.
I asked this a week ago. No response. Again, two appeals have been denied since then, and I need her help.
After all that, the PA writes back yesterday (a one-line email): "I will finish a letter for you as soon as I can and contact Dr. ______'s office. Since he is the ordering physician, his staff will have to handle their end."
Wow. Thanks for the detail and for addressing my concerns. PS: She will not give me more antibiotics since high risk doctor is dealing with that stuff now.
So, today I will make my daily call to the high risk doc to deliver the news that LLMD will not supply oral antibiotics, and that it is his responsibility now to call in the drugs I need.
I'll also let them know that there should be a letter from the LLMD coming in that will help with the appeal, but I would like to speak with someone at the office to provide some information and documentation that will help win the appeal. I also want to report my symptoms, because they are getting worse.
And like they tell me every day, the doctor or a nurse will call me back this afternoon to discuss this and give me updates.
Sure they will.
In the meantime, I've priced out the out-of-pocket treatment cost, because I know I'm going to get denied this next appeal (let's face it, that letter's not gonna get there in time), and we can't wait around much longer.
Over $15,000 for 5 months of antibiotics and a once-a-week nurse visit. And the company won't "bill you later." You pay the $650 weekly, or the meds and nurses don't show up. Believe it or not, I've called a bunch of places, and this is the cheapest, best offer. Well, the only one that does not sound creepy and completely ghetto.
I'm finding it harder and harder to keep a positive attitude about all of this. Pregnancy should be a joyous occasion, and I'm having panic attacks daily.
Things will get better soon right? I'm about out of hope here...
I am a mother and writer with Chronic Lyme, on the road to acceptance and recovery. I was bitten in 1996, diagnosed 2008. I am living proof that it is possible to live meaningfully and have happy, healthy children while battling this terrible disease.