Thursday, February 18, 2016

Progress and discovery: an update

My friends,

You continue to be my most favorite cheer leaders. Today I received this in the mail:

A friend who is very well-acquainted with the horrors of disease sent this to me, along with a note reminding me that laughter is wonderful medicine. What a delightful gift (and oh! I love The Far Side!). My mail prayer a few weeks back has been answered far above and beyond anything I imagined, and I have many of you to thank for that. Thank you for listening to the prompting of the Spirit, and thank you for using your resources to encourage me. My cup is running over, cascading, pooling, refreshing my spirit.

I'm really thankful to report that my health has taken a couple of tiny steps forward over the last couple of weeks. Of course I'd love to see big steps forward, and I'd especially love it if I could avoid taking steps backward; but as per usual, this journey is more like the cha-cha than a hurdle race. One step forward; one step backward; and every now and then, two glorious steps forward. I continue to learn to live patiently in the moment, scouring it for glimmers of God's goodness. This week I'm especially thankful for the sunlight that falls across my bed each afternoon, and the breeze that tousles the palms outside my window.

As I rest and recuperate, I've been trying to put together a working theory explaining why I've regressed so much this winter. Last fall I experienced healing to the extent that I was able to maintain a [part-time] work life, social life, and church life. I gradually became more active, and although I still had many bad days and weeks, I had a handful of days on which my body felt almost normal. I was on a good trajectory, which is why this recent flare-up is just so strange and unexpected.

But the doctor I talked to two weeks ago had good theories that have since been corroborated by my research and observations of my body.

Here's what he observed: the two new medications I tried in late December and early January were very high in sulfur, as was the autoimmune paleo diet (the Wahls Protocol) I began in January. Normally, these high-in-sulfur treatments have terrific results in people like me, but my doctor suspects I have a genetic mutation impeding my body's ability to eliminate sulfur. Here's the thing about sulfur-based treatments:

"When the body metabolizes sulfur compounds it produces ammonia as a byproduct.  Ammonia is toxic to the body but most individuals are able to easily excrete it through the urine. Unfortunately, some individuals have particular genetic mutations that do not allow them to effectively metabolize and eliminate ammonia." (Read complete article here).

So here's our working theory:

I can't eliminate sulfur, nor can I eliminate ammonia. Thus, I've had poison (ammonia) circulating in my body for several weeks now. The presence of the ammonia has thrown my immune system off balance which has allowed the viruses and bacteria in my body to activate. The doctor also thinks I have an upper G.I. tract infection that's the source of many of my neurological symptoms.

At this point, taking an antibiotic seems like one of the worst things I can do, so we're having to very carefully and systematically address these problems with creative medical alternatives. Our first steps are to try to clear the sulfur and ammonia. I think we're making incremental progress in this area. At least I'm hopeful we are. Sometimes the steps forward are so small they're virtually imperceptible, so I'm asking God to give me eyes to see them.

The G.I. tract infection makes eating very difficult. The foods I can eat are also limited by my current sulfur intolerance (SO many foods have sulfur!) and my additional, long list of allergies. Right now, there are about 5 foods I can eat. As a result, my body is not getting the nutrition it needs, and I'm seeing some of my symptoms grow correspondingly worse. I'm considering getting nutritional IVs, but my body is so sensitive right now, I'm not sure it could handle them.

So I'm stuck between a rock and a hard place in a number of ways, which is why I need your continued prayer. I think I'm going to start a new tincture this weekend, and I'm hopeful it will help my G.I. tract infection. If it's going to make me worse, however, then I want to stop taking it immediately. Please pray for wisdom for next steps.

And finally, many of you have been praying God would give me wisdom about whether or not to proceed with my PhD studies this semester. Thus far, I feel like God is directing me to continue them. It's actually pretty wild how he's enabled me to keep at my studies in the midst of such a horrible flare-up. It's not uncommon for me to feel scarily sick one day, and then, the next day, have enough strength that I can push through my symptoms and attend class. And boy, I'm loving being back in the classroom as a student. I feel like a fish thrown back into the water.

Okie doke, I think that's it for now.

Thank you for your prayerful support, gifts in the mail, and notes of encouragement.

You are my favorites.

Love you all,


© by scj

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