Thursday, May 17, 2012


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.


Anonymous said...

I love your metaphor about Lyme recovery being like a rugby match. I am herxing hard right now and I'm finding that a really helpful image to hold on to, because I feel so smahed up it is tempting to stop the antibiotics - but no, I am going to keep on with them while I have them.

Any kind of antibiotic treatment is very hard to get where I live in the UK. The health service here doesn't believe in chronic lyme. We don't pay for our health care at the point of use, which is good, but there are few options if your doctor won't treat you. Private, self-financed medical teratment in UK is out of reach for most people, including myself, because its so expensive, and anyway it is usually just our National Health Service doctors moonlighting for extra cash, You get the same thing as you would get for free, just a bit quicker if you can pay for it.

But in either private or state provided medical sectors, UK doctors just don't believ in chronic Lyme. As a result it's next to impossible to get any recognition of your sickness at work for example, so you just have to keep on going. Sometimes I feel so ill I feel like I will just collapse at work. I look awful and my boss thinks I'm a waste of space. He just refuss to understand that I'm seriously sick.

I've had neurological damage show up on MRI scans, de-myelination which my doctors claim has nothing to with Lyme, cardiac symptoms which my doctors claim have nothing to do with Lyme: all this despite positive blood tests for Lyme, and a marker for chronic inflammation in my blood which is always showing up as extra high, while the doctors just go "hmmmmm" as if it was vaguely interesting, but not that relevant to my condition (which itself is apparently neither interesting nor relevant to anyone but me.)

So thank you for the image of the rugby scrum. Every day I wake up exhausted, but I know I may have to go into battle yet again against the ignorance of doctors and employers as well as struggling to keep up my epic battle against Lyme itself. But you are right that there are phases to this illness and to trying to get better.

There are times when you can do very little but the bare minimum you need to do in order to survive, whatever that means in your individual case, and that will very, depending on the people you have around to support you, or whether there are people you have to support, however ill you feel; for example if you have aging parents or young kids or just a very demanding boss who acts like he's had an empathy by-pass.

But every now and then you have to push back hard, get down and dirty in the scrum. It's a great image! So here I am, herxing and hurting, but also still hoping.

I hope you keep on pushing back when you need to. Good luck and don't give in!

Noelle Catharine Allen said...

Dear Anonymous:

Good for you for carrying on! It sounds like quite a trial for you to get the treatment, and then yes, it makes you feel like hell for quite a while before you start to feel any better.

For me antibiotics were the difference between being trapped in bed and being able to get up and walk for miles, (and now run and swim and dance). So yes, it's worth it.

Things are starting to change in the US, but our health care system has prevented and is still preventing many patients access to treatment for Chronic Lyme. Good for you for managing to get antibiotics, and to stick with treatment.

I wish you many virtual scrum-mates to wrap their arms around you and push along with you!