11 months

I've been working on this post for several weeks now. It takes soooo long to get my scrambled thoughts typed out and by the time something is made coherent, it's "old news" and there are new things to share. hence these ridiculously long posts. Today I began a new round of treatment and my first dose is already making me very sick, so I figure I had better tidy things up and post SOMETHING before I slip into oblivion for another week or two.

It's been 11 months since we found out that I have Lyme disease. Hard to believe.

On Friday (11/6), I finished another round of oral abx. That round brought out some new, dramatic, scary die-off symptoms. Seizures and hallucinations. Complete inability to talk. Major mobility issues. Severe stuttering. Unable to swallow. Severe vertigo. Unable to sleep for 32 hours.

And this is in addition to all the "normal" symptoms I experience, like excruciating, searing pain all throughout my body, sweats, chills, arrhythmias, constant headaches, lethargy, fainting, being bedridden nearly all the time, etc... I don't mean to complain, just want you to know what life continues to be like for me.

About the hallucinations. for some reason I feel almost ashamed to share that I had them. I think that so many jokes are made about them that I fear people will think I'm either making it up or being dramatic.

It was so strange to actually experience them.
Seeing, hearing, and feeling things that weren't real:

• A huge donkey piñata that sat next to me in bed all afternoon. can you say bizarre?!
• Leaves and vines that were hanging over me, brushing against my arms and face.
• An Egyptian waving a palm branch on/in my closet door.
• The chatter of children playing hopscotch on a sidewalk in our bedroom.

Between the seizures and hallucinations and being too dizzy to sit up or even lift my head, the Sunday and Monday in the middle of my two week course of abx were very scary and difficult.

Dr. J increased my dose of Lamictal to better control the seizure activity I've been struggling with. So far, the increased dosage seems to be helping. I've been less twitchy/jerky this past week.

Dr. J's triage nurse (whom we love!) relayed to me that based on the intensity of the die-off symptoms that I'm experiencing 11 months into treatment, Dr. J says that I am a really sick girl.

It was sobering to hear that over the phone. We so desperately hoped that we'd be seeing at least some improvement by now. That I wouldn't still be described as "profoundly ill" or "very sick" by my physicians.

But, take heart: the severity of my die-off reactions and lack of improvement thus far don't indicate treatment failure! These infections have a very strong hold on my body. Stronger than any of us initially realized. That, in combination with my body's crippled ability to rid itself of toxins, makes treatment a tricky, complicated, long process.

We are grateful to have such a skilled, knowledgeable, compassionate physician in charge of my care.

Dr. J wants me to continue to do rounds of 4 different oral abx in hopes of slowly beating the infection load down enough to get me stabilized. He reiterated that I'll need IV treatment to really make significant progress, but that can't happen any time soon with how unstable and weak I am.

It was also mentioned that if I continue to struggle so much, we may have to resort to IV just to keep me from spiraling further downward.

It's one of those "between a rock and a hard place" situations. I need aggressive treatment, but am too weak to handle it. But in order to get strong enough, I need aggressive treatment. *sigh*

It's frustrating and disheartening to have this be an ever increasingly long process. We're feeling a little numb. In survival mode. But doing our best to trust and wait and be content in ALL circumstances. This passage has been on my mind a great deal lately.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. 2 Cor 4:16-18

Thankfully, earlier last week I had some pretty "good" days. Less pain and sleeping better. I also had a few horrible miserable days, but I am so thankful for those few days of respite. A ray of sunshine in an otherwise dark pit that is my body.

This week, Spencer and I both begin new rounds of treatment.

Speaking of that amazing husband of mine... It's his birthday today! :) Oh am I ever glad he was born! He's doing okay. Continuing to improve. slowly. He's worn out from work and taking care of me, but continues to push on.

Feb 2008, Trinidad Head

I feel SO BLESSED to be his wife. He sets aside his needs and wants in countless ways in order to serve me, never complaining. I can't wait to be well enough to do more for him. Please pray for him, for stamina and encouragement.

At the very end of his last drug holiday, he began to feel a lot worse. His headache got really bad. But once he started treatment, his symptoms calmed down. There was something that was beginning to come back while he was off treatment.

That round of Babesia treatment brought on more die-off reactions, but thankfully not too severe - extra fatigued, worse headache, dizziness, increased brain fog, sweats - miserable, but he is able to push through it.

Well, there it is. I've gotten an update posted. way too long. No profound ending. but at least I'm posting something :)

Please continue to pray for us, especially as we both begin new rounds of treatment this week. We so appreciate your prayers.