round # ... ? completed!

{ I wrote the following last week... We're so very thankful and glad for the improvement that we saw. But on Friday, I came down with a cold or some other mean, lingering virus. The past five days have been quite rough and rather discouraging.  
Please pray that I can get rid of this virus and regain strength to fight Lyme and its co-infections. }

I made it through another cycle of IV Tigecycline.

Me-oh-my. First I had a rough few weeks of slipping downhill on oral abx, with "dormant, under-control" symptoms roaring back out of control. THEN two weeks on Tigecycline.

March was a miserable month.

I had meltdowns before Tyg infusions, dreading the after effects. Severe, debilitating nausea from the Tyg. Rough die-off reactions: Searing nerve pain and headaches, shaking, severe sweats & chills alternating every 30 seconds - lasting for hours. Barely able to make it to the bathroom some days, blacking out, falling, needing hours to recover. Needing to sleep most of day and night. Thankfully a couple days of reprieve scattered here and there :)

BUT this first week off, I'm beginning to feel alive again.

Stamina and energy improving. Pain lessened. a lot. *sigh of relief* Still confined to bed/couch most of the time, but much more able to walk around the house, sit up longer, have longer conversations. and oh, the bliss of not feeling like I'm about to vomit all of the time!

So, the verdict: I definitely feel better than before starting Tyg. Better than I have for several months. Hoorah! Tyg is so tough, but once again, we see good results. This has taken all week to type, as cognitively, I'm still really struggling. But I love that as I type today, I feel awake, less fuzzy, not weighed down. This is a "good" day. and "good" is a good thing.

It's wonderful. We are so very thankful.

I need to rest, though, and let my body recover. So I must be wise about what I invest this renewed stregnth and energy in. I may have a few more spoons, but I need to be careful about how I use them. So very happy to have a few extra :)

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. 

flying to DC

tomorrow (Monday)

I meant to blog about this sooner, but alas, my body had other plans.

We would appreciate it if you could pray for us in these ways:

• safe, smooth travel - make connecting flights - not seated next to people drenched in cologne and perfume (thankfully I have my mask, but hope not to need it).
• rest - we're both sleep deprived and on top of it jet lag.
• a productive appointment in which we can communicate effectively with Dr. J so he has a whole, accurate picture of how I'm doing.
• wisdom - for Dr. J and for us as decide where to go with treatment. am I finished with IV or do I need more? Which oral drugs to take? What treatment plan?
• Trust - that we would remain peaceful and content in God's sovereign will, whether or not things go the way we want.
• finances - travel expenses along with medical make things very tight - trust that the Lord will provide.

Thank, dear family and friends. We're really hoping Petrova the PICC line will be pulled on Tuesday. She's been a part of my body for 14 months now and it's time to say goodbye, me thinks :) 

We are so thankful for your support.

Well hello there, thyroid gland!

Our wonderful local dr. recently ordered some lab tests for me, including a thyroid panel. For years and years, doctors have tested me for thyroid problems. But the tests results are always normal despite me having quite a few symptoms pointing to possible thyroid problems.

This time though, our dr. tested me for something not included on a typical thyroid panel. Reverse T3.

basically, testing reverse T3 levels gives a better picture of what is really happening behind the scenes with the thyroid gland and the hormones being produced. The ratio between reverse T3 and free T3 should be at least 8, and I'm at 2.3. I'm too tired to explain the physiology of it all.

We learned this during my appointment this week. Thank you, my dear doctor, for checking my reverse T3. It's such a blessing to identify one more piece to this puzzle - and it's a puzzle piece we can treat!

Lyme is known to wreck havoc on the thyroid, so with these test results in hand, we can better know how to help the thyroid out while we continue to fight these infections. It's likely that the thyroid issue is one of the contributors to my fatigue. Fatigue is one of my worst symptoms.... it's encouraging to think that we might be able to help on that front.

But before working on my thyroid, my doctor wants to check on my adrenal function and test cortisol levels. Symptomatically, it's likely my adrenal glands are in a pitiful state. If abnormal, we'll need to work on adrenals before thyroid.

More to share, but another time. :) God is good, and I look forward to sharing about the things He is doing in our lives. We are blessed abundantly!

ready, set, go!

A good deal of change has happened in 2011 thus far.

Our current season of life, the one we have been in for quite some time, is shifting.
It feels like various pieces, layers, are moving on to a new season. But other pieces stay behind.

It's odd not knowing exactly where all of these components of daily life are going to settle. Quite a few keep floating back and forth.

But change, motion, is good.

After taking a two-year leave of absence, Spencer has returned to school. So strange for him to be a student again! It's sure an adjustment, but he's working hard and we trust God will get him through a rather tough load of classes. Particularly organic chemistry. He loves the class, but whew! Hard work!

I cannot begin to update you on the past...oh, dear... several months. Maybe some time I will, but realistically, it probably won't happen. Let's just say they were tumultuous.

As for now, we are getting settled in our new home. Yes, our very own little place. God is so good to us! We are loving reacquainting ourselves with our beloved beaches and redwoods.

So, what allowed this big change in life situation?

:: I am doing pretty well. December was kinda shaky, but still improving. And January started off tough because Dr. J wanted me to do one final punch of HBOT + Tigecycline before we moved. That was one intense treatment, but I bounced back quickly, and with more energy and stamina than I started with.

:: We haven't seen me this consistently able to function in... a very long while. More and more good days. "bad" days are less intense. "good" days are better. It's really amazing.

:: Days here and there where I can: HELP WITH DISHES! MAKE MYSELF (a simple) LUNCH! SORT & PUT AWAY LAUNDRY! Not all in one day, but this is Crazy! Wonderful.

:: I do still need to rest in bed most of the day, but can get up and about more easily and at least do a few small tasks. Such a blessing. I'd lounge on the couch more, for a change of pace and to be closer to Spencer when he's cooking/cleaning in the kitchen, but alas, we have no couch as of yet.

:: My struggle. I am headstrong and prone to overdoing things. This whole "feeling better' thing is wonderful, but I really need to take it easy. The focus is to heal, not overdo it and relapse. A new, yet familiar lesson in patience and discipline :)

:: I am currently on oral antibiotics. Petrova the PICC line is still in place, because Dr. J wants to see how I do. If I do well and don't backslide, hopefully Petrova will get pulled. In the meantime it's nice to still do fluids, meyers cocktails, glutathione.

:: one of the oral antibiotics I'm on - I haven't been on it in a year. I've been hit hard in different ways when it was reintroduced a month ago. More nerve and joint pain. The worst nerve pain I've had in quite a while. So maybe the drug is hitting something in a way that hasn't happened for some time. Oh how odd, to live in a world where bad symptoms are celebrated :)

:: I'll do another round of orals on the 14th and then we'll evaluate w/ Dr. J and our IV nurse where to go from there. hopefully no more IV antibiotics!

:: Please pray. I'm at a crucial point in treatment. improving a great deal, but could very easily backslide. Please pray for wisdom for Dr. J and for us as we observe my progress day to day. Our local doctor is amazing and completely supportive and willing to work with Dr. J. We are in good hands. Our God has blessed us beyond measure once again.

:: Spencer is doing alright physically. The stress of moving and starting school has set him back a bit, so he's going to do a week of oral antibiotics this week. We're hoping once the dust settles and I'm able to better help out around the apartment, that he'll bounce back.

:: Please pray for Spencer. He does SO MUCH as a husband, care giver, provider, and now student. We're feeling good about him diving back into school, but it won't be easy. I continue to be amazed and humbled at how selflessly he serves me and works to care for our little family even when so weary.

::With me doing better, we're hopeful that there won't be such a burden on him regarding caring for me. and once Petrova is pulled, big changes in how much he has to do for me. I'll be able to wash my own hair!! *blissful sigh* and groan of relief from him :) Bless him for washing my hair for over a year now.

:: Thankfully we've already been able to get plugged in w/ our local church. I felt well enough for us to join a new Bible study that was just started and what a blessing it was to meet with other believers in a small group setting to study God's Word and fellowship with one another. We're really excited! The Lord is so gracious.

Well, that's all for now... I'm sure I'm missing some significant details, but oh well. At lease I'm posting SOMETHING :)

We continue to ask for your prayers. We thank the Lord for blessing us wiht you dear family and friends - what a wonderful team of prayer warriors, encouragers, letter writers, financial supporters. THANK YOU. Your words, contributions, actions, prayers are HUGE in our daily lives and we are so blessed and encouraged. 

Date Night!

we both look really tired. Well, we were :) But I was feeling pretty "good."

Some dear friends gave us Christmas money STRICTLY to be used ONLY for a date.

Dates have been scarce in our lives as of late for rather obvious reasons: I've been too unwell to go out much and financially it's difficult with medical costs.

But last week, I was having some really "good" days, so we decided to go to a favorite restaurant overlooking one of our favorite beaches. Very yummy food and great conversation :)

It was a lovely last hurrah before Spencer began classes.

It is SO encouraging to be seeing progress like this - me being able to go out and it not take a huge toll on me. I've been more wiped this week, but because of treatment and overdoing it with unpacking after our move.

Contentment

So often I struggle with seemingly "worry-worthy" things in the life a chronically ill individual. What if I get a PICC line infection? What if we don't have enough money to pay for treatment? What if the dishes haven't been washed yet? (yeah, unwashed dishes really freak me out. I have problems.) How am I going to be able to get dressed and go out to get my blood drawn? How will I be able to handle tomorrow? Silly, sinful me.

A friend posted this a while ago. She and her sweet family are going through a very difficult health trial. Her pursuit of contentment really encouraged and convicted me. 

a quote she shared:

If we wished to gain contentment, we might try such rules as these: 

1. Allow thyself to complain of nothing, not even of the weather.

2. Never picture thyself to thyself under any circumstances in which thou art not.

3. Never compare thine own lot with that of another.

4. Never allow thyself to dwell on the wish that this or that had been, or were, otherwise than it was, or is. God Almighty loves thee better and more wisely than thou dost thyself.

5. 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)

Updates on what in the world is going on in our lives to come :)

didn't mean to take a two month hiatus...

We're still here. 
Just a great deal of exhaustion. physically. mentally. emotionally. spiritually.
Plus there have been quite a few happenings in our lives as of late, so I haven't really known where to begin writing.
I think the unintended break has been for my good though.  
Hoping to blog more routinely in this new year... after our move to northern CA next week (!!!). yup, big changes ahead...

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

phone appointment

It went well. my new treatment plan that Dr. J formulated with us went in a direction we didn't expect, but we agree with him that it is necessary.

I have been pulled off of hyperbaric oxygen therapy and NO antibiotics for at least 2 more weeks (I've already been off of them for 2 wks). Yikes!

I'll try to write more about it soon to explain WHY.

I don't remember who said it, but basically, "treating Lyme - it takes a village." It really does.
We thank God for blessing us so abundantly with loving, encouraging, and supportive family and friends. Your kind words and actions are HUGE in our lives - every card, email, visit to care for and cheer up, financial help - it is all cherished and we THANK you.