I never know what to put as the title...

we got home from DC late friday night.

I've been writing little bits here and there all weekend, before I forget details. Get ready for some rambling... :)

our appointment with dr. J went very well. so thankful that God has allowed us to be treated by such a knowledgeable, compassionate physician. we were able to communicate well with him and are all on the same page. 

my two month oral abx trial did not go as we had hoped. it started off well, but pretty quickly took a nose dive. Symptoms we had gotten somewhat or even well under control, have been creeping back.

there are still a lot of critters wreaking havoc on my nervous system. while discussing my symptoms, dr. J used the term "spirochete bloom," as to what has been happening in my brain while on the oral abx. there is still too much of an infection load for the orals alone to be effective. just yet.

I also had a 2 week drug holiday this month instead of the normal 1 (my appt was on the 2nd week). 2 weeks off of the oral abx further demonstrated that my body can't keep these awful critters at bay with only orals. so many symptoms roaring back full force. 

the 2nd week off was miserable. being woken up all throughout the night by my own whimpering, writhing in pain, dripping in sweat. futilely lying in the strangest positions in an attempt to lessen the nerve pain ripping through my bones, muscles, skin. pain you can't ignore no matter how much you try. desperately wishing you could be rendered unconscious. 

THANKFULLY, this pain was a good deal under control for several months when on IV (SUCH a BLESSING). So I'm very hopeful we'll get the pain back under control. dr. J also had me up the dosage of one of my medications to see if that will help with the nerve pain.

We all concurred that IV meds are clearly still needed. along with IV, I'll be on oral Cefdinir and Flagyl. I have never been on Cefdinir while on IV so we'll see how I do. Cefdinir definitely hits something hard when I've taken it in the past, so I'm eager to see the results.

alright, so guess what IV drug dr. J chose.....

Tigecycline. tyg. the tiger.

my nemesis.

I really thought I was done with Tyg after 3 cycles.

Tyg is SUCH a hard drug to handle, but we've seen the most improvement with it. the misery is far outweighed by the results.

I'm set to do two cycles. 2 weeks ON, 2-3 weeks OFF.
Today (Monday) I start. My first infusion will be tonight.

so basically I'll be on this insanely tough drug for the rest of Spencer's difficult spring semester. 

*deep breath*

Spencer is so good to remind me that God WILL meet our needs.  It will be really tough most likely, but He will sustain us as He always has before. Great is His faithfulness! We feel at peace that this treatment plan is the right course of action, despite how intense it is.  

I feel like I'm rambling and can't quite make sense of what I've written so far. but I hope this gives you a better picture of what is going on.

A dear family friend shared this with me...

Psalm 103:13 says, "Just as a father has compassion on his children, so the LORD has compassion on those who fear Him." I loved C.H. Spurgeon's quote based on this verse: "Fathers feel for their children, especially when they are in pain, they would like to suffer in their stead, their sighs and groans cut them to the quick: thus sensitive towards us is our heavenly Father. We do not adore a god of stone, but the living God, who is tenderness itself. He is at this moment compassionating us, for the word is in the present tense; His pity never fails to flow, and we never cease to need it."

My body may be currently ravaged by Lyme and co-infections, but my mind (ha, my mind is attacked too) is at peace. Not always I admit. Often I am anxious, frustrated, ungrateful, discontent. But God has helped to remind me - through His word, my husband, friends and family - that He will take care of us: 

"Never be afraid to trust an unknown future to a known God." — Corrie Ten Boom

"...Never dwell on the morrow. Remember that it is God’s, not thine. The heaviest part of sorrow often is to look forward to it. “The Lord will provide.”  -- E.B. Pusey (1800-1882)

"The LORD will guide you always; 

he will satisfy your needs in a sun-scorched land 

and will strengthen your frame. 

You will be like a well-watered garden, 

like a spring whose waters never fail." - Isaiah 58:11

Be patient, suffering soul!  

I hear thy cry.

The trial fires may glow, 

but I am high. 

I see the silver, and I will refine

Until My image shall upon it shine.

Fear not, for I am near, thy help to be;

Greater than all thy pain, My love for thee.

H.W.C.