Here we are. It’s June. School is out after tomorrow, the kids will be home a lot more.
Just flew back from Maryland again. The doctor says my white blood count is strong enough now she could increase my meds. So, my Vacnomycin is up to 1 gram per day Mon-Thurs. Clindamycin up to 900 mg Fri-Sun, the Caspofungin is up to 70mg Mon-Thurs. and she added (dun-dun-daaaaah) Rifampin, finally, at a dose of 600 mg (it’s red! and takes 3 hours to drip! yikes!). So, with those, and my good old Magnesium at 3 grams, I’m “hooked up” no less than 3 hours every day, some days it’s more like 6 hours. To avoid another hour several times a week, I’m trying to drink dandelion root tea to clear my liver and produce/get glutathione, rather than get it from an IV drip. Plus dandelion roots are cheap. Glutathione is not.
On a personal note, I was aiming to go the the healing service at ResLife Church the night before flying to Maryland. Psalm 118:8 struck me the day before that: “It is better to trust in The LORD than in human beings.” Doubts and questions about my direction for treatment continue. I wasn’t up to going to the service (oi…loud music, lots of people…eek!), but watched it online at home. Shed a few tears. Still praying now, about direction and investment in my recovery from this. But confident in hope, and sure that my healing has begun. Praying for His strength to do this every day with grace and joy.
I have to say again how thankful I am for the doctor who knows what to do with me. And also how to help me get insurance coverage for as much as possible. I actually think we’ve met some out-of-pocket limit, and they might start reimbursing us for some of the costs of doctor appointments and compounding pharmacy meds. Maybe.
In other news, Johns Hopkins University just opened a Lyme Research Center. Good! They are only studying people with known tick bites, and the bull’s eye rash. Bummer. Hoping they will see the broader picture soon. I emailed Dr. John Acott there today. If he even gets and reads my email, I’m not sure he would believe my story, especially my family’s part. And I’m not sure DeVos children’s hospital Infectious Disease specialist will tomorrow when we take the kids there. Lots of people don’t believe I could have passed the tick-borne illnesses on to them. Sure we could all have been bitten and none of us showed the rash, or saw a tick, and I’m the only one who had a “sudden onset” of symptoms. But how could we know? How likely is it we all got it independently, vs. I gave it to them all? I don’t know. Hence my desire to find someone studying this! (Not to mention several other couples I know personally who are struggling to figure out this very puzzle)
And why bother figure it out? Well, if I could have given it to my kids in the womb, and my husband over the years, then everyone everywhere just got a new STD to watch out for. Bug spray won’t save us from it. Will it change our treatment of my illness, or their infection? Maybe not, since none of us know how long we’ve had it, and it therefore is quite nested in our systems, and will be tough to get out. But it sure would explain a few things for my children’s development. Perhaps shed light on other developmental hot-spots that Lyme testing and treatment might actually reduce, not just medicate for functionality. (an abstract on such topics is at this link. email me if you want the article).
How many cans of worms do I want to open, anyway?
That’s enough for today. Rifampin is done dripping. It’s time for vancomycin and a nap before attempting to participate in end of school life with my kids (only under adult supervision) for a couple of hours.
May the God of hope fill you (and me) with all joy and peace and you (and I) trust in Him, so that you (and I) may overflow with hope by the power of the Holy Spirit.