GAME CHANGERS POST #2 ANTIBIOTICS

I am not writing these posts in any particular order. If I were, this post would be number one. The #1 game changer in my treatment has been antibiotics.

Please, Lymies, I beg you, take your antibiotics! Every article I’ve read, and every story I’ve been told of people recovering from Lyme has included antibiotics. At this point, the consensus from doctors on the front lines seems to be antibiotics are crucial, and if the diagnosis is at all delayed, then more than the standard 21 to 30 day course is necessary.

(Some tags for this post: biaxin, clarithromycin, metronidazole, amoxicillin, doxycycline, bicillin, rocephin. plaquenil, success stories, how long do I have to take antibiotics for Lyme)

The problem with antibiotics: They are not fun. A lot of patients stop taking them.

Yes, I know you will feel worse when you start on these meds: this is called the Herxheimer reaction. Yes, the herx can be gnarly, but hang tough. Be strong, take your meds.

You can do it, I know you can! I’m rooting for you, Lymies! Once you get through it, you’ll feel better.

I had to dig deep into my old boxes of medication to find
this long-ago expired bottle. Why? Because I don't take abx
anymore. You'll need these nasty meds, Lymies,
but fear not, they're not forever. 

LET'S GO INTO DETAIL

This was going to be a short-and-sweet post, but—well, I tend to write a lot.... Read on if want more on my personal experience, or if you’re still in doubt about taking antibiotics. Or if you want reassurance and bucking up that it's really worth it.

Once I was diagnosed, I myself wasn’t sure if it was the right treatment route for me. I talked to as many people as I could about it, and hindsight I'm very glad I chose antibiotics. In hindsight, it seems like a no-brainer. At the start, I had a lot of doubts. This is natural.

Doubt can come from some deep part of our brain that does not want to be sick. Just getting to acceptance that this is happening can be hard. From there, i

I saw this in pattern in a woman who showed up at a Lyme support meeting. This woman had been diagnosed within a few months of the onset of her symptoms, she'd been taking antibiotics for two weeks, but was ready to quit. Everyone at the meeting was telling the woman she needed to stick with the antibiotics, that they would work. But this woman kept saying no, she was feeling so much worse on the antibiotics, she thought it just wasn't worth it. (Yes, easier to tell yourself it's not such a big problem. Maybe you should just take some vitamins and work on positive thinking.)

Also at this meeting were people in wheelchairs, people who had been so unfortunate as to have gone far too many years without a diagnosis, or without the correct treatment. Yes, if Lyme goes untreated on for too long, it can get you to the point where you can't walk. The people in wheelchairs were telling the woman to take her meds and stick with them, before it got really bad, but the woman in doubt seemed incapable of putting it all together.  

The longer you wait and delay treatment, the harder it is to beat the illness back. Given time, the Lyme bacteria has a way of rooting itself into places the medication can’t get to. (Not yet, anyway. This is something researchers are working on.)

The woman in doubt didn’t understand how lucky she was. I wanted to pick her up and shake her and tell her how blind she was to the tremendous luck she’d had. She’d walked into a standard doctor’s office and gotten a diagnosis right off the bat, with the Elisa test! I would have given anything to be able to turn back time to the early months of my illness, to have had that early test come out positive instead of the false negative I got. Give me a time travel machine, and this is the first thing I’d do: Get myself diagnosed on time, and give myself early treatment.

I went eight years without a diagnosis, with the illness slowly, steadily progressing. Meanwhile, based on incorrect medical information (that I didn't have Lyme disease) I went on an endless quest from one doctor to another in search of a reason for why I was so sick. If I’d had a timely diagnosis, I would have gotten a decade of my life back.

GOING DOWN A RABBIT-HOLE

I hardly ever think along these lines, because I have an incredibly good life right now. but I’m going to lay it out, in case you’re someone who’s in the early stages of infection. In case you're someone who feels a little run-down, has some weird symptoms (like trouble sleeping, mixing up words when you speak, sensitivity to noise, trouble concentrating), and you're wondering if this Lyme diagnosis is worth it. 

Feeling like hell, but looking fabulous (as everyone told me).
Groan--that was a bad insider joke for the chronically ill.

Here’s what probably would have happened in my life in that decade, but didn’t, because I had Lyme that went undiagnosed and untreated:

THINGS THAT DIDN’T HAPPEN TO DUE LYME

-Continuing my job/career

-Going to graduate school

-Getting married

-Having children

-Continuing to live independently (i.e. not at my parents’ house)

Instead I was having Lyme. Yes, in my parents’ house, dependent on them to do everything for me. And yes, at the start, like this woman at the support group, I wasn’t bedridden. I limped along through work, exhausted but getting by. I could still read, I went on short walks, but going running was leaving me wiped out and things were getting worse. In time they were a nightmare.

If this woman would stick with the antibiotics, she could knock the bacteria out of her body before it took root. She’d likely go on to have a healthy, normal life. An entire room of people were telling her this, but she was having a very hard time hearing it.

Why not turn around if you see this up ahead?

It was as if she was driving along the highway, saw a giant conflagration of a ten-car pile-up in front of her, and decided to keep driving her car straight into the wreck, because 1) it was going to be really inconvenient to turn the car around and find a different route, and 2) she wasn’t feeling all that bad right now.

Please, people, take your antibiotics!

This is how a lot of medicine works: Medicine it is short-term inconvenient, but in the long-term, it's extremely convenient.

If you were diagnosed with cancer, would you skip chemo because it makes you feel bad?

I understand how hard it is to come to terms with having a difficult illness and a difficult treatment. I hope this was all this poor doubting woman was going through. She just needed time to get her head around it. I hope she went home and gave it some thought, and the message from the support group got through to her, and she stuck with her medication.

MORE ON MY STORY, ANTIBIOTICS-WISE

I was at last diagnosed with Lyme in 2007 (my symptoms started 1998 and became overwhelming in 1999). I’d finally found a great doctor (Marty Ross) and I also have had wonderful naturopaths helping me through. (Amy Derksen and Nesreen Medina, and Carolyn Humphreys.) I took heavy-duty antibiotics for three and a half years. If I’d started the treatment at the onset of my illness, no doubt I would not have needed quite so many years of antibiotics. If it had been caught right away, I might have only needed a few months of medication. 

My doctor, Marty Ross, worked with me to ramp up each new antibiotic, so that the herx was what I could manage. He also explained very clearly that the improvement I’d see wasn’t from day to day or even from month to month. The change would be gradual. After the first six months, he told me, I should look back to where I’d been at the start and see if there was a change.

Yes, he was right. At six months I wasn’t cured, but I could easily walk for a couple of miles. That had been impossible half a year earlier.

Rinse and repeat.

This is me on top of a mountain. I climbed it myself.

So eventually you might be hiking on snowy mountain tops,
and your dog will come too.

HANGING TOUGH

Yes, at one point I gave myself my own giant, painful shots in the butt for some of the antibiotics. The first was for an antibiotic called Bicillin. I thought I could never manage it, but I did. (A little more about that here.)

Rocephin is the antibiotic that seems to help people the most—the famous IV antibiotic. Because I have chemical sensitivity, when it came to Rocephin—I couldn’t have the plastic IV line in my body, so I did a daily shot of Rocephin as well. In that form, the needle is wide and the antibiotic is like sludge, which meant I couldn’t do the injection myself. I had my boyfriend and family give it to me. We went to the doctor’s office and had the nurse teach my boyfriend how to do it. It hurt like hell, each time. I did the shots for 11 months, and at the end of the time I was running and swimming again. It was, literally, a miracle.

Thumbs up for another cute dog picture: Cleopatra
swims with me, too. Part of the miracle!

However bad the antibiotics make you feel, remember it’s not forever. You’ll get better and you’ll get off them. I’ve been off antibiotics since 2011, and I’m doing fine. I’m on an herbal protocol to keep the Lyme in check. Keeping myself healthy is not always simple, but my life is a world away from what it once was.

On more note on Marty Ross’s “gradual ramp up” approach: I know doctors believe in pulsing, and I’ve read this is also very effective, but yes, the herx can be rough. Whatever your choice, please Lymies, TAKE YOUR ABX! Keep taking them until you feel the change! Don’t expect the change to come quickly. Have faith that it will come. It will.

Do your best to patiently explain to friends and family what you’re going through. It might help to have articles printed out to hand them to friends and family, so you don’t exhaust yourself talking about it. Lymedisease.org is a good place for that information. And don't hesitate to ask people to support you, especially in specific ways—small things that have beginning and an end. Like bringing you dinner, or picking up some groceries for you, or coming over to watch a TV show with you.

If you want to do rife, homeopathy, herbs, supplements, acupuncture—yes, go for it. But don’t skip your antibiotics. Apart from rife, I’ve done all these things, and while they have been helpful, my experience has been that they aren’t a substitute for antibiotics. TAKE YOUR ANTIBIOTICS!

THE NO-TICK-NEWS BLUES

(I wish I knew who did this illustration, so I could give credit!)

It has been three weeks since I found a tick had bitten me, apparently while or right after I was swing dancing in urban Washington DC. The next day I FedExed the tick to Igenex, Lyme medical labs extraordinaire, to be tested for Lyme and other diseases. I started taking antibiotics immediately, and thought I'd hear back from Igenex in one week's time.

But as of this moment, there's still no word. The receptionists at Igenex (I've now called several times) have told me it may take up to three weeks, and taking into consideration that today is July 4th, Monday July 8th is the most likely day I'll get my results.

Meanwhile, the doxycycline and biaxin Dr. Marty Ross prescribed have put me right back into the dark heart of Lyme disease-- fatigue, stiffness, psychological misery, and brain fog. Samsara, Sartre, Sisyphus, the works. All this could be die-off from the Lyme germ that took up residence in my body some fourteen years ago. Or it could be the result of killing off the new infection. Without the lab results, there's no way to know.

Four weeks on antibiotics is the most conservative approach to prevention after a tick bite. Much as I'd like to be in a happier place, I decided yesterday in my appointment with Dr. Ross that I'd keep taking the antibiotics, given the lack of information. Even if the Igenex results come back negative, I'll have no regrets. This isn't the time to take chances.

PROGRESS REPORT: SAMENTO & BANDEROL

Last May I started the Samento-Banderol protocol for Lyme disease. According to recent research, these taking these two herbs in combination is extremely effective at killing off “dormant Lyme,” meaning that last little bit of Lyme bacteria that’s so good at escaping the antibiotics. These two herbs are so effective, they’re actually better, in lab tests, than antibiotics are at killing off Lyme in a biofilm. (And the biofilm is part of what makes Lyme such a tough enemy.)

One of the early signs of effective Lyme antidotes is the Herxheimer reaction, which is when your symptoms of disease increase as the medication kills Lyme and floods your body with toxins from dead bacteria. (Here's a beautiful illustration of the Samento plant!)

Judging solely by the Herxheimer reaction I had when I started Samento and Banderol, they have to be just as good or better than antibiotics. I have also been deliberately going for as big a Herxheimer reaction as I could, based on a theory that this is the best way to kick an entrenched case of Lyme. Instead of increasing my Samento and Banderol liquid herbs at the recommended rate of one drop every other day, I increased by two per day. By July I was on the full dose, and by August the big “Herx” reactions seemed behind me. So far, so good.

Enter my naturopath Nesreen. When I told her about the maximum Herx theory, she agreed. “You have to feel worse before you feel better,” she said. She also admitted it’s a tough sell. She’s lost patients who simply won’t, or can’t, go through the healing-by-fire method.

(And I realize that Herxing on Lyme meds is in fact a luxury in our screwed-up world. Try doing that while taking care of kids, holding down a job, or keeping up with homework assignments. Until our society recognizes Lyme for what it is and your friends and family rally round with casseroles and babysitting and the world at large accepts that you cant keep up with your job or your school work, the way it would if you had any number of other serious illnesses, turning the volume up to eleven on your Lyme symptoms—so you can actually get over this disease—will remain a luxury.)

At Nesreen’s suggestion, I added the herb Teasel and this has cranked up the herx even more. More on that in an upcoming post!

When I lived in Mexico these dried Samento pods (una de gato) were for sale on the street as amulets. They were said to ward off evil, and I actually wore one around my neck for some time. I'd love to get another but they seem hard to come by in the States.

SHORT PAUSE: CHASING THE HERX DAY 21

Yesterday I finished the first final draft on parts one and two of my memoir. I say "first final" because I'm sure there will be a second and third final draft, quite possibly a fourth. But the point is I made major changes based on feedback from someone who knows what she's doing. Up next is the third section. But before I started, I just wanted to say, "Hooray for me!"

I've been trying to make myself feel as sick possible on my Lyme meds, and I've found this to be a pretty unpredictable process. Yesterday, for example, I thought I'd feel OK, based where I was in my detox/medical schedule. Not so. Sometimes whole days are really rough. Other days I'll feel good for a few hours, then awful for a few, then good again.

Still, everyday I've had at least a half an hour when I can focus enough to do a little work on my memoir. For the past few weeks that's meant going through the manuscript and looking at just one aspect of it for coherence and consistency--how I describe a certain friend and tell her story, for example. This has leant itself well to the type of short windows of concentration I have right now.

The most important thing, which I have to keep reminding myself over and over, is that I can't put writing before medical considerations. Not now. I'm fighting to get my life back once and for all, so every decision has to be about hitting Lyme as hard as I can. I've told myself I have to increase the Lyme herbs, as tempting as it has been at moments to increase them slowly so that I can focus better on writing the next day, or have energy for babysitting my neice and nephew. But that's not where it's at right now. I want my whole life back, not just parts of it.

Still, it's nice that incidentally I've gotten a little work done.

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 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.

BACK ON BIAXIN

Looking back at my last post, I am struck by how peaceful it
was, and by how much has changed in the nine weeks since. It was just about
then that I agreed to do another test for Lyme because I should have been done
with the Shoemaker protocol and off most of my supplements by then, and I
wasn’t. Dr. Ross said active Lyme might possibly be the culprit. This was
exciting in exactly one way—that there now is a non-antibody test for Lyme with
80% accuracy.

Before the blood draw, I had to I stop taking my one-drop/day
dose of Samento, a Lyme-killing herb, and a couple other herbs I’d been taking
that had an anti-bacterial effect.

And so began my further descent. I slept less, tried to
solve it by detoxing more, got nowhere but exhausted. I worried the lurking
sinus infection, which I’d been trying to get rid of for six months, was
causing all my trouble. I redoubled my efforts to clear it out, which took more
time from my day.

More than ever, I felt from the moment I got out of bed that
I was racing the clock to get through all my medical tasks-- injections to
powders to pills to enemas. And now the nasal sprays and essential oils on
q-tips inserted into my sinuses, which I found myself doing at 11pm, because I
couldn’t get to it sooner, which is hardly a way to induce a good night’s
sleep.

I did the blood draw, the lab mixed up my test results, I had
to stay off my herbs for two more weeks until I the replacement test kit
arrived.

And then came the day I lifted my arms to braid my hair, and
I felt an all-too familiar feeling: that horrible, domineering, sluggishness I
lived with for eight years before my diagnosis. My arms were made of liquid
lead and I just couldn’t lift them for more than five seconds.

“This feels like the bad-old days,” I thought.

Mind you, I was still going running and to dance class and
doing my grocery shopping by foot, but the absolute feeling of Lyme took over
my body from time to time. Sometimes it was a just a passing moment, a few
mornings it was a good two hours. There is tiredness, there is sickness—such as
food-poisoning or the flu—and there is Lyme. It has its own particular feel.
You can say “flu-like”, but the feeling, for me, is subtly and entirely
distinct from the flu. It has a particular flavor, its own color, as unique as
the face of an old friend. You may not have seen that face for a few years, but
you would not call it by any other name.

I put myself back on Samento—one drop, then two drops per
day—felt wiped out enough to call it a die-off reaction.

So I was in Dr. Ross’s office last Monday declaring that I
could not wait six more weeks for test results. (Yes, this amazing new Lyme
test takes time!) I also told him just how stubborn this sinus infection was. I
left the appointment with a prescription for Biaxin (generic name Clarythrosmycin
for all you anti-biotics geeks), which would treat the sinus infection and the
Lyme.

Dr. Ross reassured me that people in my situation bounce
back quickly—I haven’t gone back to square one. And this week, despite the
waves of nausea and other die-off unpleasantness, I’ve felt a bit better than
the week before.

THE TIME OF CAMELS AND HORSES

True confessions: the last couple months have been pretty difficult for me. I’ve been largely silent on the blog, in part because I’d rather not write when I’m down. It’s too easy to cement feelings of frustration in words, building them into sky scrapers that overshadow all the gains made, all the good times that slip so easily from my mind when I’m down.

But today I’m going to admit to how hard it’s been recently: insomnia three or four days out of the week, headaches that have all but paralyzed me, and in the middle of it all, just as a little bonus, food poisoning. Yes, there are consoling thoughts, like my worst now is still so much better than it was four years ago, and the notion that this is a herx, that it must mean this latest round of antibiotics is penetrating deep into my system, perhaps into my brain the way Dr. Ross suggested the high dose of Amoxicillin would.

It’s just that as I approach the four year mark of antibiotic treatment (this July), the question at full volume is, can it really take this long? Evidently yes.

The second question, posed by a thoughtful reader a few days ago, is are you worried about all the antibiotics? Yes. And also no, because what good does that worry do me? One thousand times greater than my worry is my gratefulness for them. Thank you, antibiotics, for making my life into something more than an empty shell, my body into something more than a 130-lb prison!

And yet it’s been just plain hard these past two months. It’s felt like a prison again, although a more mobile one. The insomnia is horrible, and the worst is the time it takes up. Contrary to what you might thing, not sleeping takes time. So much time lying in bed, trying this or that combination of supplements, getting up to do a heparin injection, stopping on my way back to use the bathroom, lying down again, not sleeping, putting on headphones to listen to books on CD in case that will lull me to sleep, realizing twenty minutes later that it hasn’t and so deciding it’s now time to try some vitamin B, then fifteen minutes later more vitamin C, and then another quarter hour later the herbal drops the naturopath gave me last week.

All this while the Poet is in the bedroom with me, in various stages of sleep. I reach for all my pill bottles as silently as possible, but it hardly matters. Pills rattle, bottle tops squeak as I open them. Vitamin C fizzes as I mix it in water. The discman clicks and whirs when I hit play. The Poet often snores through it, but when my noise wakes him up I feel terrible.

So Saturday morning went, from six a.m. on. He was lying in bed reading, and I was busy not sleeping, having coaxed my body into slumber after midnight the night before. I didn’t know the Poet was hoping to read himself to sleep. I thought he was just reading, not minding my little noises that echoed all over our little room, until after an hour he said something.

By noon, when we had been up and dressed for quite some time, and pretending to ourselves we didn’t feel quite as crabby as we did, we started squabbling. But we’ve grown by leaps and bounds in this situation, and a full-blown argument did not ensue. Hooray for us!

And yet as we worked our way through our differences, heading towards reconciliation, I broke down and cried. It’s got to be tough for him, surrounded by this illness all the time. And yet this is where it gets tough for me. After all, I feel I’m about 40% an interesting, energetic person and 60% Lyme disease, percentages varying from day to day, of course. And how attractive can that be? I know there are so many women out there, and I worry the Poet will just get tired of me, or tired of my noise that keeps him awake, and say enough.

“I never imagined,” I said, “that this treatment would take so long, and that it would be this awful even when it's been almost four years. If I had known, wouldn’t have asked you to come along with me.” The tears slid down my cheeks as I talked.

“Oh sweetie,” he said. “I’m glad I came along with you. I don’t ever regret it, not even today. You’re such a rare, rare person. Nothing else matters.” Of every compliment he’s ever given me, this one meant the most. This is the one I will always remember.

“Sometimes,” I told him after kisses and a few more tears, “I worry that I’ll never get better.”

“Don’t think that, baby. You know how things have ups and downs,” he told me. “Illness is that way. Lots of things are that way. When people are working hard to lose weight, they have times when they gain a few pounds. And in the Egyptian revolution, there was a day when the enemy sent camels and horses into Tahrir Square. How crazy was that! So maybe this is your time of camels and horses. You just have to stand your ground and keep fighting, and eventually you’ll get Mubarak to stand down.”

So I’ve been telling myself since then. My time of camels and horses. I can hang tough, especially with a poet in my corner when it matters most.

LIFE AS A PETRI DISH

There should be an expression for herxing similar to ‘when it rains it pours’. Something along the lines of ‘when it herxes, it berserkses.’ (Well, that could use some improvement.)

I don’t know about anybody else, but the herbal Lyme killers give me the worst herx reaction. From Samento I get a splitting headache, ditto for Graperfruit Seed Extract, with an added bonus of vomiting.

I discovered this last phenomenon two weeks ago. I was having some insomnia, as I often do, and my naturopath suggested I increase my GSE from three to four pills per day. It worked beautifully—I slept soundly for four nights, and on the fifth I woke up at 3am with a devastating headache: like little goblins had put steel bands around my head and were tightening them every ten seconds. Plus the god-awful nausea and subsequent hurling.

Needless to say, I stopped taking all GSE for about five days, then added it back in to my pill boxes when I felt I needed it. Of course I did need it; it's part of my current treatment plan.

Well, as Dr. Ross said in my last appointment with him, “you are your own best Petri dish.” (Thanks, Dr. Ross. I've always longed to be called a Petri dish!) Meaning, I can go to him or my naturopath Nesreen all I like, but in the end I need to find out what works for me by putting it into my body.

Unfortunately, it’s this trial and error method that works best. So it was that I added GSE back into my anti-Lyme mix, first one, then two, then three little brown pills per day. At three I was back up to my original, non-herx-inducing dose, mind you. And that day the die-off headache started again. Once it starts, in my experience, it just keeps going on its own schedule, no matter how fast you stop taking whatever pill it was that set it off.

That was this past Friday, the first day of a weekend-long class on how to find a publisher or literary agent, and how to market a book once it's published. I’d signed up six weeks ago and had paid $269 for it.

As the Mexicans say, ni modo. Or, as the Americans say, screw it. I went anyway.

It was all quite bearable on Friday evening, when the headache was in its nascent stages. On Saturday, however, I was operating on four hours of sleep and in addition to the crushing headache I had a jittery sort of feeling, as if the goblins had now got a hold of my molecules and were ripping them apart at break-neck speed. (Well, at least I wasn’t vomiting.)

The weekend actually marked a turning point for me. Until now, I have always put the the well-being of my body first. As I got out of bed on Saturday, I considered staying home. The added strain of being in class wasn’t going to help me get over the herx, I knew. From a health-care point of view, it would have been better to meditate, do yoga and take a good, long nap in the afternoon.

But screw yoga. I decided the class was way more important. Yes, I felt so trampled by 5pm on Saturday I could barely see straight, but I held it together for the duration of the class, and the class turned out to be invaluable.

(This was Alice Acheson's class. Take it if you are a writer.)

By Sunday I was feeling only slightly trampled by elephants, and I was quite a bit more articulate during class. Now that it’s Monday I feel as if almost all my molecules have been sewn back together again. So herxes come and herxes go, but I’m still not planning on taking Grapefruit Seed Extract for the foreseeable future.