Making the leap from 6 weeks to where I am currently. I took my LLMD's advice, and on Monday saw a Lyme Literate OBGYN for my 13 week ultrasound/consultation.
I admit, I should have seen him much earlier, but I was scared. I've had so many disappointing/anger-inducing experiences with new doctors--they look at me like I have three heads when I want to discuss the details of Lyme or when I have very specific questions that involve big medical terms. I hate feeling like I'm being rushed, or worse, placated, which also happens more than it should.
My excuse was, I wanted to wait until we reached the three month mark so I could make sure that this was going to be a viable pregnancy. I already had a group of mommy doctors I loved (though they aren't well versed in Lyme) as well as my LLMD. Why did I need a third doctor?
Let me tell you how happy I was after I got over myself and saw the high risk specialist. First, the ultrasounds at these offices are much different. Mine lasted almost an hour, because they wanted to check every organ. That didn't bother us at all, as we're gushy new parents who say stupid things like, "Oh my god! Look at those cute little kidneys!" It's amazing how they can check on something so small (even the four heart chambers). I left the room feeling totally confident that our baby has a clean bill of health so far. Every bone is where it should be; every inch was measured properly.
Then we got to the actual consultation part, and I was pleasantly surprised. This guy really knew his stuff. I wasn't ashamed to discuss symptoms or ask any questions I could think of. He took his time and actually listened. (Now I know 1 out of every 30 or so doctors actually cares. Sweet!)
Before we even started talking, he took one look at me and asked, "so when did the neurological issues start up again?" Apparently, I'm not looking so hot these days. Or he was tipped off by the the fact that I was basically lying on his couch like a psychiatric patient because I couldn't hold my head up any longer.
I prepared a page-long list of symptoms to go over with him, and I didn't even need to pull it out of my purse. Within 2 minutes he determined that the oral antibiotics I'm on now aren't effective anymore, and I need to be on something stronger, specifically IV treatment. (I KNEW that PICC line was coming around again...) Normally, it would take a long while (and a good argument) for me to climb aboard that ship, but he asked all the right questions, and for the second time ever, I trusted the guy immediately.
For a while I've felt as though I'm slipping, and I know in my heart that the pills alone aren't working. I see where my LLMD is coming from by not wanting to make drastic changes with baby on the way, but after much discussion, we are all agreeing that without proper treatment and protection for the baby, the outcome could result in a Lyme baby.
So now we play the game I hate more than anything in this world. It's called the waiting game. High risk doctor has to get a hold of LLMD, who has to get in touch with my regular OBGYN. (I checked on the status today, and 5 days later, the initial phone call hasn't even been made.)
Then LLMD has to write up a big letter to the insurance company, telling them how terribly sick and incapacitated I am so that they will preauthorize the expensive treatment. Two weeks later (at best) I will get denied and we will appeal. We will try again until I'm approved.
I'll wait for a hospital outpatient appointment so that I can get the PICC line inserted, and then I will wait some more to get a home nurse set up so we can get this IV party started. My guess is that I'll start "real" treatment around April. I hope they prove me wrong.
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.