IN THE GROOVE: CHASING THE HERX DAY 13

It's day 13 of trying to herx as much as possible. It's day 5 on Banderol, meaning I am doing the Banderol + Samento combination, and the Clarithromycin + Diflucan combination. I woke up today feeling very Lyme funky. It was nausea that woke me up, actually. Fatigue built up throughout the morning as I was writing. After a couple hours of slowing-to-a-crawl work, I called it quits and went into detox mode.

And this is what I mean by detox:

Water enema
Coffee enema
Vitamin C
Liver detox drink (Charcoal, Cholestyramine, Bentonite Clay, fiber, veggie juice, cayenne pepper)
Plenty of Magnesium, Quercetin, electrolyes, and 90 % dark chocolate (all this after lunch and long after the Cholestyramine drink)

Lunch was a giant plate of collard greens, raw beets, a little goat cheese. Dessert meant devouring half a lemon, including the rind. My diet isn't always this extreme, but on detox days I go with what I'm craving and it's usually maniacally healthy.

I rested for an hour after lunch, and that meant primarily icing my ear and back of head so the swelling in my lymph nodes will go down (I dozed off for a few minutes in the midde), went swimming at 4:15. It was like swimming with cement arms for the first twenty minutes, so I told myself not to worry about going fast (Ha! As if I could have!). By the second half, it was easy to pick up the pace.

After dinner I felt so normal I didn't even think about how I was feeling.

I've had this ongoing project of making injera-- Ethopian flatbread-- from scratch, including the sourdough starter, with 100% teff, which is the traditional Ethiopian flour. This is not an easy thing to do. Almost all injera Ethopian restaurants is made with refined wheat flour and therefore inedible for me.

I'd already botched the injera twice with dubious recipes I found online. This was my lucky third recipe, lucky third time. I'd started the whole process, with the sourdough fermentation and all, last Wednesday. Tonight was the night to cook it, so after dinner I set to work. I was so preoccupied with whether the sourdough part had worked and if I had thinned the batter enough and how long to cook the bread before putting the lid over the frying pan that and how long to keep the lid on the frying pan that I forgot entirely to think about whether I was herxing.

Just in case you've never felt the fatigue of Lyme disease, it's impossible not to think about the fatigue of Lyme disease unless you aren't actually feeling the fatigue. Trust me. I've got years of experience in this department.

I was so caught up in the beautiful fact that I was actually, successfully making injera, that it took me a full 45 minutes to notice I'd also pulled out of the herx. Completely. So completely that after letting the bread cool, layering it in aluminum foil and storing it in a tupperware in the fridge, I'm now spending twenty minutes writing this post instead of crawling to bed.

So take that, Lyme disease!

Now it truly is time for bed. In half an hour I'll have swallowed my next round of Lyme meds and be lying down to sleep. By morning I'll be back in the Kung Fu fight. I'm almost looking forward to it.

IN THE CRUSH: CHASING THE HERX DAY 6

It's been almost a week since my Eureka moment last Wednesday, when I decided I needed to get as big a Herxheimer reaction as possible, for as long as possible, in order to finally kick this last bit of Lyme. Since then, by ratcheting up my Samento (herbal drops) and Diflucan (prescription meds) I've managed to crank up the fatigue, joint pain, rapid heart beat, and noise sensitivity.

I've even had little shimmers of brain fog--when I couldn't quite put sentences together or mixed up some pretty basic words. I was sending a text to my mom yesterday and realized I didn't know how to spell "heaven." I think that qualifies as brain fog. I gave myself a silent cheer. Good for me!

I'm coming to realize that one of my biggest Herx symptoms is the crash depression. This one I'm not so good at cheering for. I suddenly get overwhelmed by how lonely I feel, how desperate my situation is, how terrible it is to have illness keep me from writing enough, how high the chances are that Lyme will ruin my relationship with The Poet. And on and on.

I try to just wait these times out, let myself cry, then get some exercise or do my detox routine. It helps a lot to have learned from Pamela Weintraub's book, "Cure Unknown," that it is very common for Lyme patients to experience increased psychological symptoms when they go on antibiotics. So yes, the even the depression is part of the Herx. I should welcome it as part of the healing process. Easier said than done!

CHASING THE HERX DAY 3

It's here! At about 7pm the fatigue slammed me, plus I have an aching low back, slight headache, am even mixing up words at times. All it took was increasing the Samento to 16 drops twice a day, and one more drop after lunch put me over the top. Now I have to be brave and stay on this high dose.

CHASING THE HERX DAY 2

I stayed up on the non-approved high dose of Diflucan today, approx 600mg. Made a BIG difference with my sinus/ear infection. I feel like something deep in my ear is finally shifting and my jaw is loosening up.

My sleep hasn't been too bad, but it's been intense-- like I'm going down to the bottom of a well while I'm alseep. I usually wake up spontaneously around 5:30 a.m., so this is when I take the Clarithromycin and Diflucan combo, plus the Samento. This morning on the high Diflucan dose I fell back asleep hard, and had almost-nightmares. One was that I was in charge of my stepson, David. He wanted to go shopping with me (this had to be a dream, right?) so I told him to come along. Then I completely forgot about him and he got lost. (Strange thing about that is I've written a short story with the same underlying plot line. No, I there's no shopping involved, but due to a bizarre illness, the protagonist loses track of her stepson and has no way to contact him. When I woke up this morning I made the connection.) The other dream, involving The Poet, was actually worse-- pretty terrible.

The funny thing is when I'm awake and take this same combo of meds my reaction is to fall into a vicious depression. Ha! I'd actually rather be asleep and have vicious dreams. At least when I wake up it's over and I feel rested!

I also got myself up to 15 drops of Samento 2 times per day (or per night in my case). No headache yet. A bit of fatigue, but I did my coffee remedy and went for a good long run with plenty of energy. Where's the herx?

CHASING THE HERX DAY 1

In the last twenty-four hours I increased my Samento by 4 drops, took the full dose of Diflucan at the same time as my a.m. Clarythromicyn because in combination the meds hit me harder, and I even took a 1/4 pill extra Diflucan. (Because I'd kept myself at a half dose for the first week, I have a few pills left over from this months' supply and I decide to put them to good use. And NO, I did not OK this with Dr. Ross, so he has absolutely no responsibility for my decision.)

I actually slept a little longer and harder than most days this past week. By the afternoon my legs felt pretty heavy-- perhaps the start of a herx. I went swimming for my usual forty minutes all the same. I didn't push myself to go fast, but by the end I had the energy to do a few laps at a quick pace.

As I'm going to bed, I can feel big changes in my sinuses, back inside the ear where the infection has been hanging on, impossible to kick. Now it's feeling as if things just might be loosening up there. I'm goind to stay on this illicit, slightly higher dose of Diflucan for a few more days to see if I can kick the sinus infection once and for all.

A BIG SHOUT OUT

Laurie is in the house! The house of Lyme, that is. My friend Laurie was in agony for years with a nightmare fibromyalgia diagnosis-- debilitating pain and migraines round the clock with no hope for recovery. Dr. Marty Ross just ran her Western Blot and it came back positive! You go girl! She's already on meds and herxing, but it's good to have some test results that say for sure she has Lyme, fair and square. She can now give fibromyalgia the raspberry. Here's to Laurie, and to a good, strong recovery and the end of pain!

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.