I saw my LLMD last week. I also finished my second round of glutathione IV treatment (total of eight IVs). I think that the glutathione helped a little. I'm now back at my baseline energy level (20% or so of normal/healthy). The glutathione may have cleared cytokines (created by die-off of Lyme bacteria), and with liver detox. For now I'm pausing on the glutathione IV treatment (I'm still taking glutathione precursors along with my other meds), but it remains an option if I start to decline again.
Since my "improvement" has only brought me back to baseline, it's time to start looking at other issues that might be slowing down my healing process. The first thing we're going to look at is possible heavy metal toxicity--especially since I grew up near a large Superfund site.
This morning I took 1500 mg DMSA, which is a chelating agent. Over the next six hours, I get to drink a lot of water and collect all of my urine in a bright orange jug. Then I shake up the jug and take a smaller sample and mail it off to be analyzed, the theory being that if I've got heavy metals in me, the DMSA will get them moving and I'll pee some out and we can figure out what's there (if anything).
I get to keep the bright orange jug, and I'm thinking of turning it into a flower planter for my balcony. Because that would be funny.
We're also looking at neurotoxins/biotoxins. Normally, your body can filter and excrete toxins. However, Lyme disease and the treatment thereof can release toxins that, in some people, are not fully excreted. The toxins, or some portion of them, can be reabsorbed in the bowel.
To address this potential problem, I've started taking modified citrus pectin twice a day. It's basically a soluable fiber that can help remove fat-based toxins. This is the milder approach. The more aggressive approach is to take a prescription medication called Questran, which soaks up all sorts of things--toxins and pretty much anything else. Which makes timing difficult. You've got to schedule it around your antibiotics and supplements, because you don't want the Questran removing the "good stuff" along with the toxins. And since my medication schedule is already a nightmare, we're going with the more gentle pectin approach for now.
The other bit of news is that we've started using the overseas Bicillin, or benzylpenicillin. Nick and I have only injected it once so far. It was a little difficult figuring out the best way to handle the process. We ended up with some benzylpenicillin sprayed over the bathroom mirror. And then during the injection, the needle clogged. So I had to get stabbed again. But Nick didn't stab hard enough, so the needle just bounced off my skin. (This needle is FREAKING HUGE.)
When Nick finally got the needle inserted and the injection moving...oh my. There was some cursing. "Are you actually biting the pillow?" Nick asked. I think I yelled something very rude back, not at all suitable for polite audiences.
So, yes, the actual injection was more painful than the pre-mixed U.S. Bicillin. However, as soon as the injection was over, the pain dimmed very quickly, and I wasn't as sore as I usually am with the pre-mixed stuff. And it was totally worth $40--approximately how much we're saving per dose by ordering from overseas. I mean, if someone came up and offered me forty bucks to endure that amount of pain for that duration, I'd totally do it. I mean, forty bucks!
I am such a cheap date.
So for $40 per injection, I'll endure. For now. I reserve the right to change my mind.
Monday, May 11, 2009
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My mom's been on Questran for years. She has uncontrolled diarrhea from her Crohn's disease (she's now 63 and has been sick since 16). It is hard to schedule it around other meds, but it really works for her.
ReplyDeleteI love your ice cream blog and I really really hope you get well soon. Getting back to baseline of 20% is better than nothing but you deserve far better!
Kathy in MD