Still haven't heard from any doctors, even though I call them daily. I saw my regular OBGYN this morning (not Lyme Literate, but she has been the most amazing doctor to date and has turned into an advocate for me--she even called the high risk doctor while I sat with her in her office. Of course, the high risk doc is out of the office today).
In the meantime, since both LLMD and high risk clown are unresponsive, I was left with no option but to communicate in primitive form. Yes, I dusted off the old fax machine and complained in writing via a communication device deemed obsolete years ago. Hey, whatever works at this point.
In case you ever need to write a letter to your doctor, here's an example. I'll keep you updated on whether is was effective.
Dear Dr. _____ and Staff:
I am submitting this in writing, because it has been impossible to get any information from you or even get a phone call back. We are having some serious communication problems here, but before I get even angrier and find a new specialist, I am giving this one last try.
I saw Dr. _____ for a consult on Feb. ____ to discuss how to treat my severe case of Lyme Disease during pregnancy. We agreed IV Rocephin was the way to go, and I was told that I would have a PICC line in by the end of the week.
It is now March 1st, no PICC line, and I can’t even get a call back from anyone in the office to update me on the status of this order! _____ is avoiding my phone calls at this point, and I don’t blame her, as they occur daily. She hasn’t given me a bit of info to work with and insists that Dr. ______ will call me “today.” Today has come and gone for over two weeks.
I understand that insurance initially denied the claim and needed an appeal. However, I didn’t expect to be left completely in the dark as to what is going on with that appeal. Over a week ago, I called and told ______ that we will pay for the treatment! We just need to get it started. Why didn’t anyone respond to that?
I have called numerous times to say that I am completely out of antibiotics and that I need some called in. Dr. _____, my Lyme doctor, maintains that you are the ordering physician, and that treatment goes through you during my pregnancy, so I can’t get any help there. How scary is that when I can’t even get a call back about the antibiotics I desperately need?
Since I’ve seen you, my symptoms have taken a turn for the worse. I am now dealing with scary fluctuations in my heart rate (low 80s dropping to low 50s in minutes, leaving me on the verge of fainting). My muscles are so weak I need assistance walking and climbing stairs, and my migraines are so bad that I am vomiting. I have vertigo and double vision which prevents me from leaving the house unless it is an emergency, and I am twitching all day long.
It is bad enough that I am dealing with this with no assistance from a doctor right now. What’s worse is that there is a helpless baby involved, and I am ashamed for you for dropping the ball on this.
Something needs to be done now, and I need the following things to be addressed today:
What is the status of the insurance appeal? How long will it take to have fully exhausted the process? Have you been in contact with either of my doctors? If insurance is a no-go I WILL PAY FOR TREATMENT. When can we start? In the meantime, how much is it hurting my baby to not be on antibiotics, because I know the lack of treatment is hurting me. If it’s going to take a while to start IV treatment, will you please call in some orals?
Thank you for your assistance with this. I don’t mean to be a squeaky wheel, and trust me, I hate calling you as much as you hate hearing from me, but I am out of options. I am just trying to protect my baby and myself. Please don’t continue to leave me hanging like this. Any info is appreciated.
I can be reached at xxx-xxx-xxxx or on my second line: xxx-xxx-xxxx
We can make this right. We just need to get moving before I end up in the hospital again.
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.