FOLLOW YOUR HERX

Well, here I am back on the antibiotics after my Lyme crash in March, when I went off my Samento to do the Lyme test. (The test came back negative, by the way, but since I had horrific symptoms off the Samento, it was clear I still had Lyme bugs in my body.)

In my last appointment with Dr. Ross, he said we are now dealing with “dormant Lyme”—those last few spirochetes that make themselves into cysts or hide in biofilms, or just hangs out deep in your brain until you think you’re better and stop taking your antibiotics, and then they come out to play again. (Disclaimer: that last part about the brain is my speculation—not something Ross said.)

So the question is how to get at the last, nastiest bacteria. According to Ross, I have two options. One is a Samento & Banderol combination that has been shown in petri-dish experiments to kill Lyme in biofilms. The other is the Burrascano approach of pulsing. This means getting a good strong dose of antibiotics until you feel well again, then going off the antibiotics until you feel really sick again, which indicates the Lyme has become active and is no longer hidden in cysts or biofilms. Then you hit them with megadose antibiotics again.

And rinse and repeat. And rinse and repeat. Until Lyme is obliterated.

During my appointment with Dr. Ross, the Samento-Banderol approach sounded way more appealing. I mean, who wants to put themselves through the Burrascano hell? Dr. Ross also mentioned he’s had lots of patients get over dormant Lyme on Samento-Banderol. I’d pretty much decided for that option, although I wasn’t expecting to start it for a few more weeks.

For now, I’m now taking Biaxin (Clarithromycin) and Samento, plus Diflucan, which kills Lyme cysts and yeast. Yeast has turned out to be a component of this sinus infection it’s been taking me so long to kick.
But today I h
ad a brainwave—a brain tidal wave, actually. It happened while I was reading "Cure Unknown" by Pamela Weintraub. Weintraub is a top-notch medical journalist who herself had chronic Lyme disease. I’m reading her book partly because this is just a really good book that anyone with Lyme should read, and partly because she did the Burrascano pulsing and I wanted to get her insights into it.

I got to the chapter on pulsing today. You had to go off the antibiotics until you felt as sick as you’d ever been, Burrascano told Pamela Weintraub, and you had to go back on the meds whole hog, with the aim of getting a nice big Herxheimer reaction. And I quote:

“It was a grave mistake to keep the dose [of antibiotics] low, Burrascano warned, because that would selectively kill the weaker, more reachable germs, leaving a stronger, deeper infection behind.”

Well, in all my years on high dose antibiotics, I’ve never had a full blown herx. I’ve felt the meds hit me, and I’ve had to take extra naps, and worked like crazy to keep my lymph draining. I've had nausea and every now and then a headache, but I’ve never had the over-the-top herx so many other patients describe.

“This is a marathon, not a sprint,” Dr. Ross told me when I started my treatment. Another thing he’s told me, with each new round of antibiotics, is to work my way to the full dose at my own pace. “It’s your foot on the accelerator,” he said.

I took him at his word. I’ve always done things gradually, trying to keep my body—and particularly my precious sleep cycles—in as much balance as possible. There have been times when I’ve even backed down or changed antibiotics if things got too rough. When I was on Rocephin, I stayed on for ten months instead of the full year because suddenly, in the home stretch, my sleep went haywire.

But insomnia is one of my chief symptoms. At this point, insomnia is my toughest, most-hanging-on symptom, the cockroach that keeps surviving the nuclear fall-out. So it dawned on me, I shouldn’t have backed down those times. Maybe my sleep going haywire was a good sign. Maybe I shouldn’t have been so afraid.

I wish now I’d stayed on Rocephin those last two months in 2009, painful as it might have been. It might just have killed off that last reserve, the nastiest of the spirochetes that were screwing with my brain, that are still screwing with my brain.

So I'm rethinking how to take my meds right now. I’ve been easing myself onto the Diflucan, taking just half, then ¾, and taking it separately from the Biaxin because the two at the same time were knocking me down hard.

Now I get it that I want to be knocked down hard. Or rather, I want to knock the Lyme down hard, and to do that, I have to crash myself into the fray. If for no other reason than it’s one thing I haven’t done in four years of antibiotics and ten months of Shoemaker protocol. So it stands to logic I should try it, because what I’ve done just ain’t workin’ like it should be.

With all due respect to Dr. Ross, I’m not thinking of Lyme treatment as a marathon anymore. Lyme treatment is a rugby match. A really long rugby match. Call it a rugby tournament if want. So yes, it’s about the long haul, but it’s also about smashing hard and to that you have to let yourself get bashed up a bit. It's about scrumming it up and jumping into the chaos.

Let’s play.