aptly named

when I started this blog, we had already been waiting for a long time.
And we're still waiting. trying to do so quietly. patiently. contentedly.

it's REALLY hard for me to wait.
especially quietly.
especially when there are SO many unknowns.
I struggle a great deal with impatience.
and wanting to be in control
God has given me quite the lesson opportunity to learn
about patience and grow in that area.

right now we're waiting because Dr. J had me stop all treatment.
both antibiotics and hyperbaric oxygen therapy.
Stop.
because TOO MUCH bacteria was being killed.
(pretty cool in and of itself that so much was DYING!)

the bacteria releases endotoxins when killed.
so when a LOT of these dang critters bite the dust,
my body is flooded with toxins.
toxins that my body has difficulty/inability to get rid of. ugh.
and antibiotics. they do good things,
but they are also toxic.
so I am one toxic individual.
very very toxic.
meaning, very sick and miserable.

I have not been on any antibiotics for a month now.
that's a looong time for me.

Dr. J has really stressed that I need to take time off in order to detox from all of this bacteria die-off and the drugs themselves, before we can get me stabilized enough to hopefully do my last round of IV antibiotics.

we don't have a date for when I restart abx.
it will be at least another couple weeks.
we just need to play things by ear.

{ignore the following colored text if you don't want a bunch of detail}

Background:
first 2 weeks of September I did several rounds of hbot (hyperbaric oxygen treatment) on drug holiday and felt bad all the time.
then 2 weeks of IV abx with hbot and felt worse on treatment days and more so the days after.
then 2 weekends of just hbot during drug holiday, where I felt HORRIBLE the days after the hbot sessions, having awful die-off reactions despite no antibiotics or other antimicrobials. I was sicker than I had been in months. Pain so bad I couldn't remember when it had been like that.

hyperbaric oxygen treatment (hbot) helps damaged tissues heal more quickly. basically, you are in a chamber and the atmospheric pressure is increased, kind of like diving down into the ocean with more and more pressure the further down you go. along with the increased pressure, you are also breathing 100% oxygen. the pressure gives your body the highest level possible of oxygen, which is delivered to all parts of your body. this potentiate your body's own ability to heal. it also helps with detoxification and increases your white blood cell count. (I would like to explain this more clearly and accurately, but this is what I can do right now)

hbot can kill bacteria too.
but that's not the primary purpose for lyme patients doing hbot.
for us, it's more for healing of damaged tissues (like my poor nervous system) and boosting the immune system.
some might experience mild die-off symptoms.

I'm one of the rare exceptions.
Such dramatic, awful die-off reactions following the hbot sessions makes Dr. J almost certain that the hbot is acting like an antibiotic in my body,
killing way more bacteria than expected.
Much to the surprise and curiosity of Dr. J
AND the hbot dr. who uses hbot to help treat lyme patients routinely.

lovely, that I "surprise" my doctors
with symptoms or responses to treatment are "unusual" or "unexpected" :)
gotta keep things interesting.

whew! this entry is really long!

Dr. J said that the hbot must have been busting a LOT of lyme cysts.

(lyme bacteria can turn into a cyst form, basically going dormant when in a hostile environment [antibiotics].
the cysts can't be killed by most antibiotics,
which is why flagyl is used, known as a "cyst buster."
It busts the cysts so that the bacteria is once again vulnerable to antibiotics.)

Dr. J wanted me to try one "dive" at a lower atmospheric pressure last weekend, in hopes that I wouldn't have such a dramatic, difficult die-off. So I did one hbot session last Sunday.
I felt fairly "normal" beforehand, but once the dive began, and the rest of the day, I was a mess. lethargic, miserable mess.

but I've bounced back fairly well this week. (hoorah!)
So we need to talk w/ my nurse and Dr. J to decide what to do next.
Thankfully I feel less toxic and have more energy this week, but even so am still bed/couch bound most of the day. but I'll take any improvement!

Oh how I dislike "up in the air" things! I need dates. times. lists.
I'm a list girl. I need things to check off or cross out.
I want a plan. now.
I would like to be done with this illness. now.

But then I turn to God's Word. Which I should have done in the first place (!!!) This is a season in which I need to be still. and trust God. contentedly. gratefully. joyfully.


Many are the plans in a man's heart,
but it is the LORD's purpose that prevails. Proverbs 19:21

In his heart a man plans his course, but the LORD determines his steps. Proverbs 16:9

Be still before the LORD and wait patiently for him... Psalm 37:7

But as for me, I watch in hope for the LORD,
I wait for God my Savior;
my God will hear me. Micah 7:7

Therefore, as God's chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, glentleness and patience. Colossians 13:12

We wait in hope for the LORD;
he is our help and our shield.
In him our hearts rejoice,
for we trust in his holy name.
May your unfailing love rest upon us, O LORD,
even as we put our hope in you. Psalm 33:20-22

I wait for the LORD, my soul waits,
and in his word I put my hope.
My soul waits for the Lord
more than watchmen wait for the morning,
more than watchmen wait for the morning. Psalm 130:5-6


Praise be to the LORD,
for he has heard my cry for mercy.

The LORD is my strength and my shield;
my heart trusts in him, and I am helped.
My heart leaps for joy
and I will give thanks to him in song.

The LORD is the strength of his people,
a fortress of salvation for his anointed one. Psalm 28:6-8