New Treatment Plan!

After being off of IV antibiotics for two months, my Lyme numbers increased a bunch (from 94 to 141; negative for Lyme is <17). Other labs show that my immune system is functioning now--wahoo! 

This was a good trial period without antibiotics to see if they helped and if the immune support measures of bee venom, supplementation, and hyperbaric oxygen therapy worked. 

I was optimistic. Admittedly, this regression surprised me. I cried a little at the news. I thought my numbers would be down and the Lyme would be dying off, but since I have felt a bit worse with each passing day, I guess this all makes sense. I'm glad to know I not just "weak sauce." Now we know a bit more about my Lyme's resiliency. The first round didn't take, so we'll have another go. Them are hearty critters. 

In the last couple days, I have made multiple phone calls to:

IV therapy

The hospital's billing department

My health insurance

My Homecare company

Homecare infusion pharmacy

My doctor's office

My regular pharmacy

Now I know one reason why I'm a nurse. I feel like I'm a homecare case manager again, but this time, for myself. Oh, what a high maintenance patient am I! But not by choice! Doctor's orders, you know!

So I'm starting back onto IV antibiotics again next week (with a new PICC line...hhhhhhhh). We're doubling the frequency and keeping on the highest doses we did last time, rotating through four antibiotics week to week. Luckily, since I'm a nurse (and was even a home health nurse), I can sidestep being taught IV administration, have supplies delivered to my house weekly, and administer the IV antibiotics to myself at home four days a week. One day a week, I'll (be driven) to my doctor's IV center and have vitamins and minerals and ozone administered. That's five days of IV therapy per week, ba-BAM. 

In addition, I will continue supplementation and bee venom injections. I may start doing bee venom injections on my own at home as well. Extra funnnn... 

Quick tangent: heres a fun fact. Shots don't hurt. It's the stuff inside them that hurts. Each serum has its own properties. That's why a flu shot doesn't hurt at first but gives you a characteristic ache for a couple days. That's why rocephin in the bum feels like peanut butter being injected through a dull, square needle (¡AAAAII MUCHACHA!). That's why lidocaine stings at first, then numbs afterwards. 

It's not injecting myself that bothers me; I've done it in nursing school. (On second thought, stabbing myself DOES bother me.) It's the stuff I'd inject. Obviously, bee venom stings. Aaah!

But I'm a tough, 103-pound, pioneer woman. *sniffs wrinkled nose in the air and brushes off shoulder pad* (Truth: I do own a blazer with shoulder pads.)

I say that now. Remind me when I feel like (I'm about to say a bad word) CRAP. 

Let me let you in on a secret. These antibiotics bring the Lyme spirochete cells out of their houses and kill them off. I can react with profound symptoms of Lyme as it comes out to play and/or dies off. This is called a Herxheimer reaction (herx for short). 

I used to get antibiotics only twice a week. I'd be herxing and in a daze for about 72 hours. Sunday was my best day, and people always thought I was all sorts of healthy and whatnot. Must have been the verticality, less drunk walk, and rouge talking. 

On these antibiotics, the Lyme does crazy things. I become:

-Forgetful. We're talking major memory impairment. 

-Tipsy, like a drunk person. 

-Weak, with very little vertical stamina. 

-Slow...especially when braking my car (eeeep!). 

-Jerky and/or limpy with an awkward gait. 

-Unbalanced (note to self: stop using messenger bag purse so as not to fall over. Also, don't wear heels.). 

-Aloof and pleasantly numb in my brain. I am like a happy dog living in the emotionally-saturated present: no worries for the future, no regrets about the past; I'm not even sure what month it is. It's kind of nice! It feels childish. I regret not being a more capable mother in all this, but it's either go forward or...keep descending? Anyway, the happy, present-embracing part is dreamy and cool. 

-Unable to read. No retention and no focus, bro. 

-Great at menial hand work from a reclined position, like crocheting with every scrap of yarn in the house. 

-Lazy. Unable to function (keep house, do physically-involved mom stuff). But that's not new. 

There are things I CAN do. But I'm getting tired and won't list them here. Reading to my babies is one of them. Oh! And writing letters. (Care to be my pen pal?)

Now that the weather is warming up, I'm going to drop crocheting and take up coloring intricate, adult coloring books. Coloring is very zen, you know. We adults oughtn't to outgrow coloring! In some circles, it's called "art therapy."

I don't know what to expect this time. I could be on this stuff up to a year long or more. It's going to hit me twice as hard, and there will be 33% more material to kill off and shovel out my liver and spleen and body somehow. Antibiotics target all cells, good and bad, so my body will have to recover from that even when I'm done. 

I hope it will be pleasant and that I won't waste too much time coloring and being mindless. Is it ok to be in a stupor when it's induced? I want to learn and read and be active. With my downtime, I'd really love to become a scripture scholar, but I can't say I'll retain what I read and hear. I can try to learn and retain things. 

I'll still write on the blog often. Surprises are coming down the pipe; I have yet to discover them myself. Just know I'm under the influence of some major Lyme upset (hopefully?) in my brain and body. 

Things are about to change. I prayed about this and know it's the right direction to go at this time. I felt weight, and now I feel lightness. Wish me luck and send optimistic thoughts and prayers my way! Let me do the same for you too.