wait quietly

Well, here it is 2 months after our appointments. Better late than never! :)
I find that I'm either too fatigued to write and on the days that I do have enough energy, that I don't want to write because I want to be up and about.
We came away from our appointments feeling encouraged, focused, better informed, and glad to be on the same page as our doctor.

Petrova the Purple PICC Line also came home with us.

And that's okay. She's sticking around for some good reasons.

for NON IV antibiotics reasons!

Yup, no IV antibiotics. Haven't been on any since MAY.


It's been difficult for me to articulate a summary of our appointments. I've really been struggling cognitively. Especially in the speech and writing compartments. There have been instances where I've literally spent HOURS staring at ONE sentence, trying to figure out how to make it make sense.

It changes hour to hour. Sometimes I can speak normally and write alright. Others I can barely speak or write at all. We've had some good laughs at some of the things I say - misplaced words, bizarre wording and arrangement of said words when I'm attempting to explain something, etc.

I am, however, doing so much better at READING! Writing is so hard, trying to convey things, but I'm doing better at taking in and processing info.

And actual talking has become easier. but writing, I don't know what it is... it's so hard and slow going!

Okay. back to the appointments.

You know what, my mind is muddled. I really can't explain it. I WANT to explain the whys and hows and get really detailed. But for now, let's just look at the basics:

- I'm on oral abx. different ones. gentler, so that my body can recover and detox after such a rough summer.

- while I haven't made progress by leaps and bounds, I am a great deal more stable. No backsliding and we can tell my body is continuing to slowly heal.

- Dr. J was pleased with how I'm doing overall. He is still concerned about how sensitive I am and how complex my case has been. HOWEVER, when we asked him about where he thought I was in the treatment/recovery process, he said I am slightly OVER the peak of the mountain. Still precarious, but the worst is very likely behind me! This was such an encouragement!

- We also asked him about how much longer he thought I would need treatment. He said that realistically, it would likely be another couple of years. We kind of expected that, but it was hard to hear. But I have to remind myself that these two years will become less and less intense as I continue to heal, with more and more good days. Treating lyme really is a marathon. Not a sprint.

- The super tough parasite protocol I was on over the summer has been adjusted as he has observed how patients were responding. He now has a better idea of how the different antibiotics were nailing various bacteria and parasites and how that all interacted with our immune systems.

- I love that he is constantly researching and staying on the cutting edge to help us fight lyme & other co-infections as effectively as possible!

- my physical exam was okay. still had tremors and some issues with my weakness in my legs and hyper reflexes (a neuro related issue). since the appointment though, as I've stabilized on these gentler abx, my tremors are so much better overall! I still have days where I'm jerking and twitching a bunch, but those days have been fewer and fewer. (yay!)

- I have one more cycle of these more mild antibiotics and then I will restart the parasite protocol, this time it's adjusted and should bring better results. I have a phone appt with him in December.

- Dr. J is also very pleased with how Spencer is doing. He wants him to continue a low dose of antibiotics every 4-5 weeks. Basically he is doing 3 days of abx a month. Dr. J explained that he typically likes patients to do maintenance abx for 2 years. So Spencer has a bit less than a year left.

- we all agreed that although having the PICC line is a pain and I don't HAVE to have it since I'm not doing IV abx, I definitely benefit from the infusions of fluids to keep me hydrated and flush out toxins. My body copes so much better with treatment. I also can't seem to absorb enough magnesium orally, so IV magnesium has been a great help to keep me from being deficient. I'm also doing IV glutathione to help me detox since my body is unable to make much glutathione on its own.

Well, my mind is drawing a blank on what else... It's taken days and days to write this. It really was a good, encouraging, productive appointment though. We're on the right track!

I've been having some really "good" days and a few really tough days. Usually after a really tough day I'll need several days to recover...pretty much bedridden for a few days. And on my good days, I'm prone to overdoing it, which also results in me needing days after to recover on the couch. It's hard finding that balance, but I sure cherish the good days. My latest victories: doing a few loads of laundry and some dishes. Seriously, I LOVE being able to help out a little with household chores. It's such a blessing to do the simple things that I was unable to do for so long!

Oh, and random, the thyroid med I've been on has been helping some with the chronic, often debilitating fatigue, but fatigue overall continues to be a huge problem for me. Our local doctor recently ordered blood work to monitor my thyroid and got the results last Friday. Things still aren't quite balanced, so she had me up the dose. Hopefully that will give me an extra boost.


Thank you again for your prayers, encouraging emails and letters. Your kindness does not go unnoticed or unappreciated. It means more to us than words can express.