backsliding

we're not exactly sure why. (is there ever any certainty with this disease?! :) I enjoyed several weeks of feeling fairly "good" the second half of August and I think I overdid it, so that may be part of it. ever since the end of my last treatment cycle on 9/3 (IV merrem + HBOT), I've been really struggling. symptoms increasing in intensity. some symptoms that we had gotten under control previously, back full force.

The fatigue is crushing. My neuro symptoms such as seizures, poor balance, dizziness, hallucinations, etc are flaring. PAIN. Lots and lots of nightsweats, more than I think I've had...ever. So I'm back to spending most of my days wilted in bed, exhausted, but no amount of sleep will help. I've had a few days that haven't been so rough. thankful for those :)

I don't know why, but this banana slug that I found several years ago
comes to mind as I try to illustrate how I feel.

Dr. J has a few ideas about why this "setback" is going on. I'm too fuzzy mentally to go into much detail. I know he talked about me having a much stronger, longer herx because we added HBOT (hyperbaric oxygen therapy), which makes the abx much more potent. meaning it was able to reach and kill a lot more bacteria. Also something about my immune system being revved up. And me being toxic, so he had me do more HBOT "dives" during drug holiday to help my immune system out and help my body detox.

I don't know if that makes sense. The HBOT is really fascinating and we're hopeful it will make a difference in the long run. I'll have to go into more detail about the benefits and how it works when I'm more lucid.

So we'll see. I just completed the first half of IV cycle #10 (3 consecutive days of IV merrem, oral mycobutin, & HBOT), and am feeling rotten, but that's to be expected. I'm hoping I've been feeling miserable for the past month because of a super long, intense herx (meaning lots of critters have been DYING) rather than actually losing ground.

It's discouraging to be slipping backwards after such exciting improvements. I'm trying to remember that overall, I have been improving these past few months. This is just a dip in the ups and downs of the disease and treatment, which is anything but certain. I am certain, however, that God is good no matter the condition. What comfort to know I'm safely under His wings, the Lord of the universe, throughout this journey.

Do you not know?
Have you not heard?
The LORD is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.

He gives strength to the weary
and increases the power of the weak.

Even youths grow tired and weary,
and young men stumble and fall;

but those who hope in the LORD
will renew their strength.

They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint. Isaiah 40:28-31

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