So, it is 11:05 PM and I am laying in bed, not sleeping. Again. I actually fell asleep around 10:45 and then 10 minutes later... BAM. My mind woke up – vibrantly. I remember a few über important things that need to get done tomorrow and this following week, and then it hits me. My blog. I promised an update and my day got so busy that I didn't follow through. So... here I sit, late at night (well, for this household anyway!) and write.
SO last time I wrote was in May. A LOT has happened since then. I will post over the next several days so as not to give you a migraine from a loooong blog post. Who reads the super long ones, anyway? ;)
Okay, let's start with the kids. I had posted last time that pieces of my Lyme life puzzle were falling into place. Well, another one came crashing into its unsolicited spot about two months into my oldest daughter's Lyme treatment. Babesia. After just two months, the Borrelia load had diminished enough to give the Babesia coursing through her veins, literally, enough wiggle room to pop up and say "hello! I'm here and I'm gonna throw a party! When? NOW!"
She was exhibiting classic "Babs" symptoms, and so began the puzzle-piece-fitting and the expensive treatments. She started on Alinia, which I was, and still am, taking, along with the antibiotics to keep the Babs from becoming resistant to the Alinia, and also to combat the high strep load and the Borrelia.
One month later (the two younger girls started treatment a month after my oldest), my other two began showing signs of Babs as well. So yes, for sure, I knew I had contracted it all together. And yes, they too had to address this awful parasite/protozoa as well.
The nice thing is that we reached our out-of-pocket max for prescriptions at the end of August, so now we aren't paying anything for prescriptions. As long as they aren't filled for more than 84 days at a time. I kid you not. Gotta love insurance. Really. You do. Because Mepron – the anti-malarial drug used to treat Babesia that is the #1 choice of LLMDs – costs over $5,000 for a 3-month supply. Multiply that times 3 kids, for at least 9 months treatment, if not a full year. That's $60,000 for ONE. CO-INFECTION. For 3 kids. Forget the Lyme, the Bartonella, the Mycoplasma Pneumoniae and all the pro-biotics and supplements we have to purchase as well. And the LLND visits. Really.
Oh, and Mepron... is yellow. Sorry. not "yellow." It's YELLOW!!!!! This is nothing compared to... well... let me just show you. This is Miriam. She just took her Mepron. We can call this pic "MirPron."
Drum roll please...
So yes, while our insurance is finicky about how many days we can get at once, at least we have it. We are truly blessed. Because as of right now and the rest of the calendar year, we don't have to pay for any meds.
Okay... we traveled A LOT this summer and the kids did terrifically. I am happy to say that we started a new school year with a new middle schooler, a second grader, and a 4K-er and they are all doing so well! Adjusting to changes can sometimes be really quite difficult for kids with Lyme + Co. But so far, this has been a smooth and wonderful transition. I am truly truly blessed. We all are. I couldn't have asked for better kids! Even with a horrid disease in their lives, they are so amazing!!
Not only are we dealing with new schools and great transitions in that respect, I really believe that we are seeing vast improvements in all three of the girls' health. Miriam (the middle one) still seems to have a lot of emotional issues, but they really only come out at home, and she still is excelling in her classes. They all have pains and random issues that Lymies are so familiar with, but they are becoming fewer and farther between.
I thank God for such amazing kids and for their extraordinary LLND. She is in every way, a hero.
More to come... Oh, so much more... For now, on this, the last few minutes of the first day of fall, peace, love, and cider mugs to you all.