GOING TO ELEVEN

The backyard, a place for yoga and in general doing things slowly

            A week ago I had a day that didn’t go as planned, thanks to Lyme, but I managed to jot down these thoughts in the evening. So here’s another post, a bit overdue!

  

From Weds August 12:

I pulled myself out of bed this morning feeling far too spaced out—not the regular morning aches, but a floating, almost loopy feeling that I recognized. It’s my brain’s way of disconnecting from how at the bottom of it all, there’s something crummy going on. Although it was a weekday, my boyfriend had spent the night because he was going away in the afternoon, and we’d both been hoping for a bit of connection in the morning. Knowing I wasn’t capable of even a few minutes meaningful of conversation, I encouraged him to get an earlier start on his trip than he’d planned. It didn't make any sense for him to hang around, with the way I was feeling.

Alone, it was a little easier to face the complicated tasks that lay ahead—picking up the dog’s leash, for example, and putting it on the dog; pulling the door key from my pocket, inserting it in the front door and turning, then walking out to the sidewalk with the dog. These things are not hard, but this morning they seemed far too much for my brain and body. It  was as if my surroundings were a giant boulder and I’d woken up as Sisyphus—yes, again, this morning, again. My soul and the world were not one.

            It was a day for doing everything slowly. After I managed by a small godsend to make myself coffee, I opened the story I was working on and wrote at a meandering pace while I ate an apple, setting aside the goals I’d had for getting certain things written. An hour or two passed while I inched along like a sloth, and I dropped my plans of doing errands. It wasn’t that I was tired so much as it felt like my brain was living in one world and my body in another, and how was I to get the two of them together into the car, and after that go shopping?

            I do a kind of mind-body therapy called Self Regulation Therapy (SRT), and my angel of a therapist calls this feeling dissociation. When we reach the point of dissociation, the brain is simply overwhelmed with whatever’s going on in the body, and often vice-versa. Which brings us to the question of why. Why today, in particular, was I feeling what I was feeling? I had some suspicions. My Lyme meds probably needed readjusting, for one. I don’t sleep well if I don’t have enough Lyme medication in my body, and over the weekend I found myself wide awake at 3 a.m. I’d scaled up on one herbal tincture perhaps a little too much in order to get to sleep, so I probably now had an excess of toxins from dead Lyme bacteria in my body, more than I could comfortably handle.

            That might answer the question on the technical level, the Lyme disease level, but these technicalities usually just leave me feeling rotten for a day or two. Why the dissociation? At another level I knew it was my body’s reaction to too much stuff going on--meaning not enough attention to the illness I’m living with.

I tend to be reclusive, spending my days at home where I can write and at the same time hide from all the loud noise and toxic fumes and demanding social interactions of the greater world. At the end of the day, I usually come out of my turtle shell and go for a long walk or swim with a friend, or to dance class. Then I come home and eat insanely healthy food for dinner, followed by a 40 minute medical routine that includes counting out three or four different herbal tinctures drop by drop, mixing up powdered supplements, some in water, some in juice, taking a wide array of pills, making herbal teas that I will drink during the night, and finally giving myself an injection. (Yes, it all seems crazy to me too, and I do it because it works and keeps me off antibiotics.) After all that medical stuff, I'm exhausted, so I go to bed.

But this year (the year I am 42, for all the Douglas Adams fans reading this) the Universe has been throwing me a few loops. The Universe has been coming on strong, messing with my hermit-writer-chronic-illness-management routine. The Universe has been asking me a lot of questions that have only one answer: Yes.

            Would you like to take a week long, all day writing class with one of your favorite authors?

Would you like to date an extremely cute, intelligent, and interesting guy?

            Would you like to get a literary agent?

            Would you like to be one of the lead dancers at the start of the Fremont Solstice Parade? (For non-Seattlites, that’s the city’s big, annual arts parade.)

And make your own dancing girl costume, with feather headdress?

Would you like a visit from one of your dearest friends that same weekend?

            Yes yes yes yes yes.                           

            The Universe threw in a few other socially demanding activities, like changing roommates and hosting a fundraising party for said Solstice Parade—and then just when it seemed things would chill out for the 4^th of July, instead I spent the holiday meeting many of the cute guy’s numerous relatives—well, none of it’s been bad. In fact it’s all been pretty wonderful. It’s also quite a lot for a quiet, reclusive, writerly-type.

It’s been as if Nigel (to use another mythic number from pop-culture) has just cranked his custom-made amplifier all the way to eleven and has kept it at eleven for months and months.                                  

            It was almost inevitable that one day I was going to wake up feeling dizzy. Instead of errands, I had to slow things down, and do something that would allow my mind to reconnect with my body. I set my timer for thirty minutes and did yoga at a lingering pace.

Calves-hips-breath-brain.

Brain-breath-torso-toes.

Brain, say hello to Body. Body, say hello to Brain.

Inhale-exhale, bend and straighten, and over again, as slowly as I needed. And then it came, the connection. Everything felt awful. My brain hurt and my body felt like it was made out of gray, murky, unpleasant muck. The dizziness was gone.

So why do it? Why not just stay dissociated? Spaced out and dizzy isn’t so bad, right?

I know from experience that no good will come of it. The spaced-out feeling only gets bigger, until everything seems impossible, including all-important dancing and writing, and the paramount of activities, sleep. And the reconnect, when it does come, feels like Armageddon.

The reconnect today was unpleasant, but only about a four on the scale of unpleasantness. Four, you might ask, out of what? Well, I’m realizing I don’t know. The scale of unpleasantness might go to eleven, or eleventy-one, or one thousand and eleventy-one. But I do know that a four on the unpleasantness scale isn’t so bad. There was still plenty of goodness around, and I was thanking it.

I thanked goodness for the dishwasher—most beautiful invention!—and I thanked goodness for my own particular dishwasher because it needed unloading, a realistic goal at that moment, hard but not impossible. I thanked goodness for having a life that allowed me to go at the slowest pace on days like these, plate by plate and spoon by spoon. I thanked goodness for the dog, who keeps me company when it’s too much to have people around, and soon I thanked goodness again for the dog, who requires me to get up and walk a little bit every few hours, no matter what. I thanked goodness for my house that can sometimes look a little disorganized and shabby, but is always bright with daylight.

I thanked goodness for the backyard, full of things that grow, quiet and green.

And I thanked goodness that I’ve been through days like these enough times to have faith it would get better. So I made my way through the next few hours, until it was time to rest. I lay down on the bed and listened to someone on a podcast read Michael Cunningham’s story, “White Angel,” and I marveled at Cunningham’s beautiful sentences. Before the story could come to its sad ending, I fell asleep—the kind of sleep that overtakes you with indomitable force, the kind of sleep that feels as heavy as iron dragged from earth’s core. I woke out of that deep blackness, realizing oh so gradually that I was myself: I was Noelle.

I was in my own bed. I could feel the bed beneath me. (I think this is called coming to your senses.) I didn’t even have to remind myself to be thankful for the bed. I just was. I felt the thanks and the goodness throughout my body, a feeling of peace and comfort between my body, my brain, and my surroundings. This is why it’s important to slow things down, as hard as it can be sometimes--because there is simply no substitute for it, and because it makes all the difference.

UPDATE

It's been six months since my last blog post. A busy, happy six months that might possibly justify my neglect of this blog.

I've struggled so long with ups and downs of Lyme treatment, and it seems natural to keep the blog up when Lyme is more at the forefront of my life. When I'm feeling well I want to push Lyme to a corner of my brain so I can work on my short stories and find an agent for my memoir, not to mention dance, read, run, and bike up to the pool while I yak away with my buddy Emily (then swim for 45 minutes and take the long way home, yakking away again).

Dancing with my friend Estela in the Seattle Solstice Parade this June. (I'm on the right. Yes that is a band-aid on my leg from giving myself a heparin shot right before the parade!)

Then I got a gentle reminder that when I'm feeling strong and the universe is showering me with luck, I should remember my blog.

It came when I put a profile up on OkCupid. Yes it was time to start dating again! I'd been gearing up to date for a while, even taking some selfies when my hair was looking good because I knew I would need photos.... But I was mostly putting off online dating because the thought made me nervous. By early September, though, the time was ripe. I gathered my best photos and typed OkCupid into the search engine.

I've been sick for so long that I've racked up some experience dating while chronically ill. Not that I have any idea what I'm doing, or have a sure-fire strategy for explaining this confusing illness to potential boyfriends. But one thing I do know is to be upfront about it. There are plenty of guys out there who probably don't want to take on this added complication, and I'd rather not waste my time meeting them. So I mentioned Lyme disease once or twice in my online profile.

To my surprise, within 24 hours of putting myself "out there," I was fielding messages about Lyme disease. And I don't mean, "You're so beautiful and intelligent and I don't mind at all that you have an illness." I did in fact I did get that type of message, but these were not what flummoxed me. What threw me were messages asking me who my doctor was, what type of testing I'd had done, and specifically how I was treating Lyme.

Help! The separate worlds were colliding! I was just trying to maybe have coffee with someone single and attractive, and instead I was getting sucked back into the quicksand of the Western Blot and the Burnher Protocol? Would I ever escape Borrelia Burgdorferi, for even just a second?

And then I calmed down. It was only two guys. One was in the process of getting diagnosed and had randomly come across my profile, he said. The other seemed to have done a deliberate search for Lyme on OkCupid because, he figured people on dating websites were clearly doing better than so many people out there with Lyme. Pretty damn smart of bachelor # 2.

And then I remembered how starved people are for information about what works. And how few people who get better take the time to share their success strategies with others.

I remembered that on this blog, my posts on medicine get the most hits (no, the world at large is not so interested in my personal life or my humorous stories about friends, family, and pets). People are looking for information. I know that. I was there myself. Support groups can sometimes be great, and sometimes make you feel like someone just destroyed every map that was ever made. Certainly this is an illness with no good map.

So here's what I can share.

I am no longer trying to beat this illness into complete submission. At this point it doesn't seem realistic. I'm accepting with as much grace as possible that Borrelia Burgdorferi has a partial hold on my existence.

It's not so bad, compared to where I started. For years I spent all day in bed, often crawled on hands a knees to get to the bathroom, or on 'good days' walked one full block for exercise. Yes, my current relationship with Lyme is far better.

Currently, Lyme is still woven throughout my day. Scarcely an hour goes by that I don't think about it in some way or other. I count on dedicating ten hours each night to sleeping--although I'm not asleep the whole time, I need that much time getting ready for bed and in bed in order to sleep the eight or nine hours I need. I also take a couple short naps/meditation sessions during the day.

I have the luxury of pursuing my career from home and my house is a carefully controlled place, with no toxic chemicals, no mold, vacuumed to the hilt. (And somehow there's still dog hair flying around!)

As for Lyme-killing meds. YES. I am currently on a combination of anti-microbial herbs:

Teasel
Pau D'Arco
Samento
Cumanda
Banderol
Neem

My hero of a scientist, Dr. Eva Sapi, has done research on Samento and Banderol in combination and found them to be more effective than certain antibiotics, in certain Lyme scenarios. (I am paraphrasing one of my doctors here. Please don't take this as bona fide medical information--just trying to explain how I got to this combination of medicine.) My naturopath, Nesreen Medina, suggested including the Teasel, which made a huge difference for me in my allergy/congestion symptoms. We added the Pau D'Arco because I have a history of parasites from my time in Mexico. Neem, ditto. Also it seems to help with sleep.

Before I started these herbs, I was on very high doses of antibiotics, for years. I don't think the herbs alone would have been significantly effective to kill off Lyme. Not for me. But they are good at keeping it in check and helping me make slow, noticeable progress. (Less brain fatigue, longer runs and swims, etc.)

At any one time I'm on 5 out of the 6 of the herbs. This allows me to rotate, which is important because we know this bacteria is really good at resisting whatever you throw at it. So the rotation keeps beating it back from different angles.

I take these things before I go to bed. They are liquid drops and I have to count them out, which is annoying at the end of the day, but so be it! When I first switched to herbs, Dr. Marty Ross prescribed them to me twice a day. I tried taking the second dose before getting out of bed in the morning, or at lunch--meaning right before my afternoon nap. Either way, that second dose had me essentially unable to function for a large part of the day. So I cut it down to just one big dose at night. This has me sleeping through the night (mostly) and (mostly) alert during the day.

I also take lots of other pills: vitamins, anti-inflammatories (quercetin and bromelain), and herbs such as burdock to support my liver. I'll explain these in another post. That's it for now. It's time to go running.

Recent photo while organizing my medicine. Yes, it's still complicated! And it's worth it.

MEDITATION WORKS

Meditation by Odilon Redon

 

I just went through one of the most physically stressful weeks of my life. I didn’t run a marathon or climb Everest. I flew back to my house in Seattle, which should have been ready for me to live in, but in fact was still full of fumes from my recent renovations.

 On December 21^st I wrapped up my indoor renovations, and made colossal efforts to get a new ventilation system installed before I left for DC. That way, I could leave it running for a month until I returned, making my house healthy for me again. It turned out the ventilation system had not been turned on, although BelRed Heating, who installed it, assured me it was set to be working 24 hours a day. It also turned out BelRed had installed the system incorrectly, so that once I turned it on (on January 21^st instead of December 19^th) the system was ineffective.

So it was that I was exposed to the construction chemicals in my house every day last week. (I slept on my friend Ghusun's couch, but for various reasons needed to back to my house for short intervals during the day. I also kept trying to convince myself the air in the house was better, until I felt sick enough to know it wasn't.) In addition, I spent far too much time driving or simply riding in cars; I spent the day in noisy places desperately trying to find a temporary place to live by typing on the maddening keys of my iPhone; I had a hard time sticking to my diet and taking my round the clock pills on time. Finally desperate to get out of my circumstances in Seattle, I gave up and flew back to my parents’ in DC, thus making two cross-country flights in eight days.

 

During the week in Seattle, all my Lyme symptoms returned—fatigue, insomnia, anxiety, panic attacks (these when I was breathing the air in my house), and lastly a general sense of despair (yes, I chalk this up to a chemcial exposure/Lyme symptom!).

It has been years since I’ve had a regular practice of meditation, but I boarded the plane back to DC so worn out I no longer cared about anything but being able to rest, and do exactly what my body needed every hour of the day. My daily habit is to start writing as soon I can, usually while I'm still eating breakfast. Yesterday morning, I was far too tired to write anything. Instead I sat at the comfortable chair in my sunny room in my parents' house, and I meditated.

During that hour, I felt tension slipping away from my body, again and again, as I let my thoughts go in order to follow my breath. After an hour, time felt entirely different. It was rich and full, no longer hurried or agonizing. My body and brain knew how to rest again. Last night I slept deeply, and woke with a sense of peace.

NAP 22

The Lyme support group meets today. It is good to go to the Lyme support group. Only due to Lyme Disease, I can't go to the Lyme support group. Although I may no longer have Lyme Disease, my body is still recovering from having had Lyme Disease.

Which means I need to take a nap every day. And the Lyme support group meets at nap time.

"Flaming June" Frederick Leighton 1895

THE RESULTS ARE NOT IN

I had my long-awaited appointment with Dr. Ross today to discuss my low hormone levels. He consulted with other doctors and decided he needed to run more tests. There is a possibility I have gone into early menopause. There is a possibility my pituitary gland is not working, therefore creating problems with my adrenal and thyroid function.

There is also the possibility that these problems have been caused by all the medicine and supplements I was on. Which means there is the possibility that a few weeks from now my pituitary gland will start to work as it should.

I have now cut out almost everything I was taking, with the exception of anti-yeast supplements (Candex), probiotics, the anti-inflammatory quercetin, and my adrenal/cortisol supplement (isocort). This last I have cut in half.

This week I put more pills back in bottles than I took out!

I stopped using my two biggest pill boxes, and later in the week I eliminated one more box. Plus, no injections, powders, drops or liquid medicines!

I wish I could say stopping everything else as of a week ago made me instantly feel better. It has not. It has, however, given me more time and way, way less hassle throughout the day. I am still dealing with quite a bit of fatigue. Not the crippling fatigue that had me in bed for years, but my legs feel heavy and my brain lethargic. I'm still going dancing and for long walks, as usual. I run sometimes, but for two miles instead of the four I used to do regularly. I concentrate in spurts, but I'm not exactly in the zone for writing these days, either.

And it's all OK, given there are still issues to work out and still things the tests are picking up.

Dr. Ross also told me today I also have high viral markers: CMV, EBV and HHR6. This in itself could cause the fatigue.

But the hormonal mystery comes first. I need to deal with viruses from a place of strength. I will wait a few weeks to give my body a chance to recalibrate after all the medicine, and then I'll get the tests for my pituitary, thyroid, adrenals, and cholesterol.

Thankfully, I'm still sleeping plenty these days, and now it's time to go to bed.

GETTING OFF CHOLESTYRAMINE

THE SECOND INSTALLMENT IN THE "GETTING OFF" SERIES

On Thursday, March 14 I stopped taking Cholestyramine. Cholestyramine was supposed to help with my liver. According to testing I had done in 2011, I have a genetic liver impairment that makes detoxing Lyme die-off and molds extremely difficult. It explains why my insomnia got worse as my Lyme treatment went on, and it explains why I developed a terrible allergy to mold along with Lyme disease.

I started Cholestyramine in August 2011. My insomnia improved, but I stayed on Cholestyramine far too long. I kept taking it at a half dose while I dealt with a mold issue in my apartment, and then went back on meds after a relapse of Lyme. I needed it to detox, the thinking went.

The times I tried to cut back, I slept poorly and got tense in a way I couldn't remedy with meditation or breathing or any of my other tricks. So I stopped trying to cut back.

But I lost weight on Cholestyramine, around twenty pounds. The last five pounds were not good ones to loose. I stopped getting my period and had next to no body fat. Cholestyramine was originally a cholesterol lowering drug, and it helps with detox by pulling fats out of your body. Great if you've got fat to spare. Not so great if you don't.

I stayed on it because I was just too afraid of insomnia and fatigue and of not kicking Lyme this time around if I didn't get the detox right.

I was doing OK on my Lyme meds, still running four miles several times a week and going for long walks. I didn't miss not having my period. But in January the fatigue expanded, not just requiring a nap, but also a rest after breakfast. In February the fatigue had cut into how much I could exercise. I was swimming less, running less, concentrating poorly.


As last when I got a haircut, I saw the back of my head in the mirror. My beautiful thick hair now looked pathetically thin. That scared me. It was more eloquent than anything else about I was feeling. I stopped taking Cholestyramine the next day. I was prepared for insomnia, allergy flair ups and more. None of that happened.

The fatigue even got a little better--better, but not gone. Dr. Ross ran tests, and indeed my hormone levels are all low. (I'll talk to him about the results next week.) My naturopath had already told me my lack of menstruation must have been linked to low cholesterol and low body weight. Meanwhile, I'm assuming my job is to get my good cholesterol levels up, fast.

Fried eggs, anyone?

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?

WINTER SLEEP

The last few days have been simple and sweet. I've just been doing whatever my body needs, whenever it needs it. I've slept enough every night, had patience with detoxing, energy for exercising, and a few hours in between for writing. One of the best parts about writing again is while I'm doing all my detox tasks, my mind wanders around in my stories, thinking about my characters or how I should revise a sentence. So much more fun than ruminating on which supplements I've taken.

The Poet and I have been trying to have a meal together, but it gets difficult while I'm on the Shoemaker protocol. So many times I end up eating dinner at 9 at night because the cholestyramine, my naps and exercise push my eating schedule later and later. Finally yesterday we agreed to stop trying. "We're good," we said, "we're spending time together anyway."

The first snow of the winter was today. I went for my usual four mile run, grateful I could run again after so many years of illness, and enjoy the big, wet flakes stinging my cheeks and covering the ground like powdered sugar. My book group was cancelled, so the Poet and I ended up having dinner together. We managed, at last, to be hungry at the same time. He cooked simple vegetables and fish-- it was lovely. And now I've found this wonderful illustrator, Jackie Morris. The picture of the woman and the bear sleeping is hers.

DR SHOEMAKER, OR HOW I STOPPED KVETCHING AND LEARNED TO LOVE DETOX

I had a wonderful day today, and I have to thank Dr. Ross and the twenty-four hours of soul-searching he put me through. It's not that I'm following his advice. To the contrary, I've decided definitively and happily to carry on with the Shoemaker-protocol-plus-extra-detox I've been doing for the past four months. Dr. Ross might be surprised if he knew, but my experience as his patient tells me he would entirely respect my decision.

Those who are close to me know I've done my share of complaining about my current medical program, and even as I complained there was this part of my brain going--but weren't you the queen of accepting your circumstances? Didn't you do all that Buddhist stuff so you could get your soul in line with life-as-suffering? Why isn't it working anymore?

Well, for a long time it wasn't. I'd felt so close to completely better that a year ago I said 2011 was the year I'd be through with Lyme. And when Lyme, or Post Lyme, suddenly took over again, I just couldn't get my head around it. At my parents' house for Christmas a few weeks ago, I wept on my mother's shoulder for all those lost hours I'd spent just dealing with being sick.

But suddenly, yesterday, when faced with the alternatives, I felt at the most visceral level how deeply I still needed to keep on the detox plan. Because detoxing means rest and sleep, and I need that more than anything else in the world, more than the happiness writing brings me. or the joy of swing dancing, or the tempting trap of getting on with my life sooner rather than later. So what if there are a few more months when I don't do much besides drink teas and take naps and give myself enemas? Compared to a couple months of insomnia and a possible lifetime of managing sleep disturbance, I can afford to be patient.

Yesterday, something in my spirit just shifted, and my mental battle against the detox tasks melted away. I sank onto the couch in the afternoon and drifted in and out of sleep, I did a water enema before bed and slept soundly through the night, taking my regular dose of Cholestyramine the one time I woke up. In the morning, after the Poet's alarm went off, I stayed in bed, took more supplements and dozed for another hour. When the thought that I might be doing something more satisfying drifted among the half-dreams, I told myself no, this was the most important-- to give over to rest, to retrain my body to sleep all it needs to.

And when I did get up, I had a lovely day. Even though I spent quite a bit of time on detox, there was some time for writing, too. Nothing felt hurried, nothing felt out of joint.

NOT SO FAST

Yesterday Dr. Ross laid out a plan for me to stop all my supplements-- just go cold turkey. And why not? After all, my physical energy level is good, my mental concentration is good, and recently my sleep is good. The thing that is keeping me from having a normal life is the detox protocol-- or is it?

Last March my sleep, which hasn't been good since I got sick, worsened and worsened, until by June it had been months since I'd slept eight hours a night. Six was the norm, seven a victory (although it never felt all that victorious). I woke up most mornings after six hours of rest thinking, "please kill me now."

In July, diagnosed with a genetic liver disorder, I went on Cholestyramine. But the Cholestyramine alone had me still pretty miserable, so in addition my naturopaths added in all sorts of support—Bentonite clay, herbal teas, fiber, enemas (because the Cholestyramine made me constipated), herbal sinus sprays, saunas, Epsom salt baths. It worked. I was no longer having insane allergic attacks, I wasn’t wiped out with exhaustion or constipation or aching limbs. By the last week of August I was sleeping eight or nine hours half the time, seven the the other half. I went through a rough bit again in November, but by December, eight had become the norm.

But to sleep, I've had to keep doing the detox. And the detox is so time consuming that it obliterates most everything in its path, particularly writing, which means particularly my soul. As my hours of sleep have increased, so has my level of frustration.

But when Dr. Ross said I should first cut down my Cholestyramine, then go off all my detox meds, my first reaction was apprehension.

Why would my dream of being free of my detox prison make me feel tense? My body was saying I wasn’t ready.

But Dr. Ross explained I might have developed physiological dependence on all the supplements. My body was just so used to having herbs and supplements pumped into day and night it that it didn’t know how to operate without them. Logically it made sense. By the end of the appointment he had me convinced.

“It will take three to four weeks for your body to adjust,” Dr. Ross said. “In the meantime, you could be pretty miserable and have trouble sleeping, so just wait it out.”

Of course, it could be a low level of active Lyme disease causing my continued need for the supplements. But we won’t know until my test results come back in three months. Or I could need the supplements for detox support, but I wouldn’t know that until I was through the four weeks of cold turkey.

“There are some people who are just left with sleep disturbance even after they get over Lyme disease,” he said we were winding things up. “We just manage it with meds.”

“Ugghh,” I said. “That’s not an acceptable possibility for me.”

I called the Poet after my appointment and he psyched me up to go off the supplements.

“This stuff has been making you miserable, sweetie. Ross is right. Just stop them all,” he said. “It might be brutal, but don’t worry. I’ll support you through it. Take the month, don’t worry about whether you sleep or not. Your only goal should be to watch as much Netflix as possible. It will be like a vacation for you.”

It didn’t sound like a vacation. A vacation would be waking up rested, writing every day, going to a dance class in the evening, or for a long run, and sleeping nine hours each night. But maybe I’d get there if I dove off this cliff into the cold-turkey canyon.

Yesterday I took the first step and cut my Cholestyramine in half—was supposed to do that for a week before I deep-sixed the rest of detox. I woke up this morning way too early with my body taught as a high wire. Things got worse from there.

At 9 I called my mind-body therapist, Jeanette, whom I’d been working with for years. Luckily, she had time to do an appointment with me at 10:30. I thought the relaxation therapy would help my body adjust to the decrease in meds, but as I talked things through and paid attention to how my body reacted, it was clear I needed more than that.

“I’ve worked so hard just to get things normal, to clean the mold out of the apartment, to find new clothes that fit me [I lost weight on the Cholestyramine], to clear away the sinus infection and do all the detox so I can sleep again, and now that I am sleeping Dr. Ross wants me to go through insomnia again. I just want things to be stable.” Just the thought that I would be starting on another round of physiological upheaval had me in tears. Willingly putting myself through more insomnia felt like psychological sabotage.

“I almost feel like if I put myself through more insomnia now, I might do permanent damage to my sleep patterns, and I’ll never be able to sleep well again.”

Truly, I just needed things to be dependable again. I don’t like the detox routine, but I know it, and by now there are dependable things about it—sleep being a big one, and my daily routine of when I eat and exercise and nap being the other. Just flying home for Christmas had disturbed my routine enough that I hadn’t slept well. Now that I was back in Seattle, I’d really been looking forward to things being normal, with no hurdles or upheavals or changes in routine.

Jeanette agreed.

By the end of my appointment with her, I had no doubts. I would do what I had to do to sleep, so that I might just have two or three consecutive months of normal sleep—something, I now realized, I needed more than I needed time to write or freedom to go on a trip or any of the other things I fantasize about doing when I’m done with Lyme.

Because I’m sure eventually I will be done with Lyme. So sure that I don’t need to rush it. The thing is, when I get there, I want to be done with Lyme and done with sleep disturbance, too.

IS THIS IT?

Dr. Ross suggested a radical thing at my appointment today: it might be time to go cold turkey on my medical protocol.

PART A

After four years of antibiotics for Lyme followed by six months of post-Lyme clean-up (Shoemaker protocol), my daily workout has changed from walking two blocks to the mailbox and back to running four miles through my hilly neighborhood. My mental concentration is good, and although my chronic sleep troubles have not disappeared completely, most nights I get around eight hours of sleep. This last has come at the huge cost of spending the bulk of my waking hours keeping up with a crazy routine of liver detox drugs, nasal sprays, heparin injections, face masks, stints in the sauna, epsom salt baths and enemas (both to stimulate liver detox and to compensate for the constipation caused by the liver-support pharmeceuticals. (And this is with me keeping it simple: I've refused to do the neti-pot, mix my own bulk teas or make thrice-weekly colonic appointments, all of which have been suggested to me more than once.)

For the past five months on the Shoemake protocol, I felt like I spent my days sprinting on a gerbil wheel, sweating it out just to stay in place.

But the truth is I haven't stayed in place. While I felt like I was running in circles, I was spiraling up toward the light. Because now ti's pretty much normal for me to sleep eight hours out of every twenty-four. And while I still have chemical sensitivity and some level of mold allergy, during my Christmas trip home I could sit on my parents' perfectly normal couch without going into a sneezing attack, ditto for snuggling under a down comforter, two things I could not do a few months ago.

So maybe I am done, but I might not know until I try.

I certainly feel like I need all the supplements. Each time my sleep gets a little worse, it's invariably adding a new supplement, or often adding back a supplement I tried to drop out, that makes me sleep better. And when I forget to take my magnesium my legs ache, and when I later remember to take it my legs stop aching, and I feel all tingly and relaxed, which then leads to sleepiness.

But as Dr. Ross said, it could be the combination of supplements that creates the need for each one of them, and it could be that my body is just so used to being pumped full of vitamins, herbs and minerals that it's developed a physiological dependence on them.

What is undeniable is that my chief complaint right now vis-a-vis my illness is not that I'm tired or can't concentrate or am in pain, it's that all the medical stuff I have to do takes so much time I can scarcely do anything else. I am living in a virtual prison of supplements and detox procedures.

PART B

There is also the possibility that the reason I feel like I need all these supplements is I that I do, in fact, still need them, because I might still have active Lyme bacteria in my body.

AMAZING NEWS

Those with Lyme know all about the trouble with testing. Well, Dr. Ross informed me today there is a new Lyme test with 80% accuracy. In Lyme testing, this is tantamount to a miracle. So far so good. But here's the wrinkle: although the test is amazingly accurate(compared to other Lyme tests) it isn't all peaches and cherries. It takes a full eight weeks to get the complete results, and I can't have had even a drop of herbal microbials in the month before I take it. Given that I took a drop of Samento (an anti-Lyme herb) yesterday morning, I'm looking at three months before I see the lab reports.

So my work is cut out for me:

1. Stop anti-Lyme herbs
2. Cut Cholestyramine (liver pharmaceutical) by half for a week to see if I'm ok at that lower dose, then if I am I move on to
3. Go cold turkey on all my other meds and supplements, and then
4. Get the new Lyme culture test done and wait for results

I will record my progress on the blog

A LITTLE BETTER

About seven weeks since I was diagnosed with a genetic liver disorder and started the Shoemaker protocol for it, things are getting better. Clearly, I have a long way to go on this treatment plan—months more, for sure—but for the past ten days or so, the majority of nights I’ve slept over eight hours. The best my sleep has been in half a year!

The prescription drug Cholestyramine is at the heart of the Shoemaker protocol, and I’m only taking slightly more than half of the full dose it (3 grams 3 times a day, instead of 4 grams 4 times a day). After talking with my naturopath, I am resigned that this is probably all I’m ever going to take. My body just can’t handle more. I’m also giving myself a coffee enema every three days to further detox the liver, and this key. The night before the coffee enema is invariably the night I am short on sleep. I wake up and do the enema, am sure to get enough exercise that day, and I sleep well again for two more nights.

I am also downing liver-detox herbs round the clock. Ditto with magnesium citrate and Perque Potent C Guard (vitamin C powder), in order to keep my bowel moving. I am meditating again, and ratcheting up my relaxation exercises and my deep breathing. Basically, it’s back to 100% focus on my health now, and it’s starting to pay off.

THE EVIL NATUROPATH

“Go see your naturopath,” Dr. Ross told me at my last appointment, “and cut down on as many supplements as possible.”

Yippee! At last some relief from the endless gerbil wheel of pills, powders, bulk teas, injections, ointments, lozenges to be dissolved under the tongue, and end perhaps even the enemas. Dared I hope for that? The coffee enema, which requires making coffee, cooling it down in the fridge, cleaning a system of tubing, setting up said tubing, laying down towels, washing towels, washing tubing, washing my bottom, washing the coffee pot…. I called my naturopath’s office as soon as I got home from Dr. Ross.

My regular naturopath, Nesreen Medina, is out on maternity leave, so saw the naturopath who had stepped in for her, someone I didn’t know. I brought along my pills in their big black bag, a full-bodied eco-grocery tote, filled to the brim.

I wasted no time explaining to the naturopath that I had been diagnosed with a genetic liver disorder and had just started cholestyramine and gone off my antibiotics.

“At this point it looks like I might be over the Lyme, but I need to detox and then the next step would be to see if I have a sinus infection that might be dumping more toxins into my system.”

I told her about the insomnia, and how I’d been taking more and more time-consuming supplements in the last six months, to the point where just doing medical stuff was eating up almost all my time, and I was only barely managing to get enough sleep to keep from going crazy. “I really need to simplify the routine because I can’t stand it anymore.”

“All right, sounds good. Let’s cut down on your supplements.”

“Great!” And the next thing out of her mouth was (I swear to God):

“Have you ever tried the neti pot?”

I was a half millimeter from screaming. Did this woman not understand the word 'simplify'? I told her as much, as politely as I could, although what came out of my mouth did include the word ‘scream’ in close conjunction with ‘neti pot’.

“OK, I understand,” she said. “Maybe we can give you a nasal spray instead. That would be easier.” She explained that she was quite familiar with the Shoemaker protocol, and in all likelihood I did have the sinus infection. “So you can do all the detox and liver support you want, but if that fungal infection is still dumping toxins into your system, you’re not going to feel a whole lot better.”

Got it. Very good to know. Burn out is burn out, however. There was still no way I was going to start using a neti pot—yet another vehicle for forcing a liquid up an orifice of my body that is not designed for having liquids forced up it; said vehicle and liquid also requiring preparation and subsequent cleaning.




It just wasn't happening. Give me the nasal spray!

At the end of the appointment I had two new nasal sprays, a new powder to be mixed in water before drinking, and instructions to buy a machine that cleans away mold spores by dispersing bee pollen into the air (don't ask me to explain this one). True, she had not forced the neti pot on me (and that is not me in the above picture, by the way!) and she had cut down my supplements by two thirds, but everything she cut was a pill. This will save me money, but not time. The twice daily injection and every powder that requires mixing, bulk tea that requires brewing, and lozenge needing to be absorbed sublingually was still in the mix. And I had instructions to increase the coffee enema to three times a week.

“I had hoped I wouldn’t need the coffee anymore, but it makes sense to keep doing it,” I said, trying to be cheerful. The coffee enema is a powerful liver cleanser. I always feel miraculously relaxed after doing it, so I couldn’t argue against it.

“Keep in mind that cholestyramine causes constipation,” the naturopath said. “So the enema will help with that. Actually, what would be best is a colonic. Do three colonics before you leave for DC.” That was six days away. If I told her I would scream with the neti pot, what did she think would happen when she asked me to get a colonic every other day?

I drove home stewing about all the new things I would need to add to my daily routine, trying to sort out when I would get them done. By the time I parked on my block I'd come to the conclusion that the naturopath was delusional. There's only so much a person can reasonably do to get better, no matter how desperately they want to be healthy again. I did not order the bee pollen machine, and I did not get three colonics before I left for DC.

And yet, despite the title of this post, the naturopath was not evil. The nasal sprays and the powder turned out to be quite useful. I increased the coffee enemas, and even did a salt water one (the poor woman's colonic) and all of it is helping my body unwind from years of antibiotics and six months of toxic hell. So I realized the naturopath was simply the messenger, and the message was one that was hard to hear: even off the antibiotics, there is more work to be done. I’m not free from aggravating medical tasks yet. It’s undeniably a lot of work, and the other part of the work is to make peace with the work, so it becomes less aggravating.

It can’t go on forever, I tell myself. Soon, I will get my time back, get back to finishing my memoir, which has been on hold for months. Be patient, I tell myself. Meanwhile, I am sleeping eight hours a day, last night it was more than eight, and that is a relief.

RAINBOW

My appointment with Dr. Ross started like any other.

“On a scale of 1-10, where would you say your energy is now?” he asked. And I came back with my usual reply:

“7, but that’s not what my issue is now.”

How could I convey what my life has been like? On Saturday morning, when I got out of bed after only six hours of sleep for the nth time in the past six months, I felt desperate and teary. It wasn’t just the standard why-don’t-I-just-kill-myself-now that can pop up on these occasions and that I know how to steel myself against. This was a physical sensation, of being physically battered, imprisoned in my body, and with it came the need to fight back, without knowing how.

“I just want to break my body!” I sobbed to the The Poet. “My body is torturing me!”

And now, in the appointment with Dr. Ross, I said. “I have physical stamina, but I can't function like a normal person. I can’t be on any schedule other than my body’s, or it’s extremely painful. I can barely function if I don’t take naps during the day, and I’m taking so many supplements, brewing tea and mixing powders in water, that it takes up half my time.”

“How many supplements, roughly? Twenty?”

“Thirty. And I get terrible headaches and I’m now giving myself a coffee enema twice a week. It’s the only thing that clears up the headaches and allows me to get barely enough sleep.”

I wanted to ask him if he knew anything more about the Shoemaker protocol. Even if I didn’t have the liver condition that I’d been hoping for, there was still the chance of the nasal infection that could be treated. But Ross was interested in the coffee enemas, took a few notes on what I told him.

“I have some new information for you,” he said, putting aside his laptop. He picked up a book, and on the back I recognized Dr. Ritchie Shoemaker’s photo, the same one as on his website. Ross got up from his chair and sat in the one next to mine, so I could see the page he'd opened in the book. He also opened my medical file to my lab tests, the ones from May, with the HLA-DR liver typing.

“I finally talked to Ritchie Shoemaker,” he said. “And I pinned him down about how to interpret these tests.” He showed me a chart in the book, and how certain numbers on my lab results matched up to the ones in the chart. I had a perfect match, three out of three.

“So this means I have the genome for the weak liver you were talking about?” I asked.

“Yes,” Dr. Ross said. “It means your liver doesn’t make the correct enzymes to get rid of toxins, especially mold and Lyme toxins.”

So it was true after all. My liver wasn't working the way it should be. I let the news sink in, the air around me felt lighter, brighter. It almost shimmered.

Beautiful surprise. As thrilling as when I got the e-mail that my first short story would be published--even bigger than that. Everything would change now. Stupendous.

“For real?” I asked.

“Yes.” Dr. Ross was crossing the room, back to his usual chair so he could make notes on his laptop.

“So I have the ‘dreaded genotype’?” (Amy Derksen had used this phrase.)

“That's what Shoemaker calls it.” Ross looked like he wasn’t sure whether or not to smile.

“Oh my god, Dr. Ross! That’s wonderful! I want to hug you!” I jumped up from my chair and threw my arms around him, and we both burst into laughter.

"OK, let's talk about treatment,” he said once we'd regained our composure.

“Cholestyramine?”

“Exactly,” I sat back down, reached for my notebook to start taking notes again, still in amazement. I knew at last why I’d been suffering so much. I felt tears in my eyes and turned my face down to my notebook until the moment passed. To hug my doctor was fine, but to then start sobbing would have been too much.

We discussed Cholysteramine—a prescription medication that will bind up the toxins my liver isn’t processing correctly and pull them out of my bowel.

“And I want you to stop your antibiotics,” he said.

“You do?”

“Yes. At this point, I’m not even sure you still have Lyme. It could all be caused by liver issues. Let's let the cholestyramine work on its own. And go see Amy Derksen again so you can cut down on your supplements as much as possible.”

I walked out of my appointment transformed. I might be able to break out of this prison after all.

THE CHAOTIC TIME OF YEAR

My last post was over two months ago! Not surprising, given everything that’s been going on: installation of a multi-tiered network of soaker; picking up my friend Kelly’s dog from doggy daycare twice a week, since Kelly had a stroke and couldn’t walk him for a while; reducing, organizing and storing The Poet’s hoard of books that had taken over every square foot in the second bedroom, in order to set up a bedroom for my stepson, David, which required buying new furniture; and, since April, practicing and for the Fremont Solstice Parade. All of this culminated in Daniel’s arrival on June 11 and the parade itself on June 18th.

Throughout it all, my body has been on its own break-neck healing schedule. I got up to the full dose of 12 amoxicillin capsules per day, plus two tetracycline and one giant diflucan pill at bedtime. There’ve been killer headaches, and the insomnia has persisted. Everything I’ve done to get myself sleeping again has worked—for about three or four days. Then the insomnia bounces back—after increasing Vitamin D, stopping monolaurin, restarting monolaurin, increasing quercetin, doing coffee enemas, drinking liver detox tea, adding Sacro B…. Needless to say, the steps in my Lyme treatment routine have become baroque lately.

By early June my ever-expanding to-do list became so overwhelming I had to write out not just a daily list on a palm-sized note pad as I usually do, but create a multi-tiered flow chart that showed which tasks were highest priority for the coming week, and which could be put off until the week after. Said chart took up an entire page in my writing notebook. Doing this actually made me feel calmer, since the tasks were no longer swirling around in the whirlpool of my brain on five hours sleep, but instead anchored to a sheet of recycled wood pulp, where I could clearly see which ones I had to worry about today, which next Wednesday.

There were times when I caught myself longing for the good old days when I had just started my antibiotics, back when my life was much simpler—when I was too sick to write or care whether The Poet was turning the apartment into a mausoleum for moldy books, or consider landscaping a garden. This was before I had the energy to take on things that approximate a normal life, something I’ve done over the past couple years as I’ve gotten stronger and had more energy and sleep has been fairly reliable. Back before all that, my big event of the day was walking the four blocks to the mail box and back, at which point I’d finished my to-do list and gotten all the exercise I could handle.

UPDATE ON SLEEP

I slept 7.5 hours last night, and am about to go back to sleep again now that I've had my heparin injection, breakfast, antibiotics and supplements. Since my appointment with Dr. Ross I've made some improvements in my sleep. Here's what I'm doing:

1. Increasing quercetin. I've only needed three caps a day until now, but I doubled it because of Dr. Ross's theory about inflammation.

2. Starting Sacro-B. This is the "good yeast" that your gut needs, and it's on Dr. Ross's list of basic steps to reduce gut inflammation.

3. Coffee enema! (More on this in a future post.)

4. Getting to bed early

5. Meditating, staying calm, giving myself all the time I need to fall asleep-- even if it takes an hour of meditation in the morning just to fall asleep again for half an hour. It's worth it.

A NEW APPROACH TO INSOMNIA

As I mentioned in my last post, times have been a little tough here at Lyme Story. (To wit, I am writing this post on six hours of sleep, which, more often than not, is all the sleep I get.) After years of antibiotics almost all my energy has returned, but my other big Lyme symptom, insomnia, has not improved. Over the past four years I've gone through a cycle of insomnia every few weeks-- sometimes it comes on after a couple months' absense, sometimes ten days, sometimes three weeks. I can usually get over it in a few days by adjusting my supplements. Perhaps I need more vitamin C, or to take monolaurin to help with the viral load that accompanies Lyme, or even to increase my antibiotics. Until now, I've always gotten back to solid sleep by making these adjustments.

But starting three months ago the insomnia has been stickier than that. No matter how I change things around, the insomnia comes back after a day or two. So I went to see Dr. Ross yesterday and told him how badly I was doing, not sure if he would have any new ideas. To my relief, he did. He had just attended a conference on the weekend and heard a lecture by Dr. Ritchie Shoemaker.

Shoemaker has an entirely different approach to chronic Lyme and Dr. Ross said he wants to try it on me and his other patients who are stuck in their treatment. (I am ready to admit that right now I'm stuck!) It's not about killing the Lyme bacteria, but about reigning in the other reactions the body has to Lyme disease. To summarize Dr. Ross's explanation:

1.Chronic inflammation: Lyme creates inflammation, and the inflammation creates cytokines, and the cytokines create oxidizing agents, and the oxidizing agents create cytokines, and the cytokines create oxidixing agents....

2. Toxicity: Is the liver strong enough to get toxins out of the body? If not, the toxins can enter the brain, effect the hypothalmus and interfere with sleep.

It turns out I am doing pretty much all the basic first steps toward controll inflammation in the digestive tract, where the biggest problems can be. (I am taking tumeric, Vitamin A 5,000 iu's or more, Vitamin D 1,000 iu's, I am on a gluten-free and anti-yeast diet and of course I take probiotics.) That leaves one more thing to check, which is wether I have a nasal staph infection that could be causing inflammation. I will do that once Dr. Ross's office has the test kits for it. And I got a blood draw yesterday to check if my liver is strong enough to be doing its job. (This test is called HLA-DR typing.)

Meanwhile, Dr. Ross gave me a couple new supplements. If they help, I will report on that. And I decided on my own to increase my quercetin, a supplement that keeps inflammation in check. I've been taking three capsules a day, which up to now has been adequate, but maybe I just need more for whatever reason right now. I will update in the next few weeks on the outcome!

PS: Due to my lack of sleep, I haven't put in many links on this post, but Ritchie Shoemaker can be found online, and there is more info on this blog about the anti-yeast diet.

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.

AND NOW FOR A TREAT WE'LL HAVE, UM, NOTHING, also known as THE ANTI-YEAST DIET

Today is day eight of the anti-candida diet that my naturopath Nesreen put me on. Yeast, or candida, is a fungus present in everyone's digestive system that thrives on simple sugars. So for this diet you can't eat refined flour, sugar, juice, maple syrup, or even fruit. And also no kombucha tea, no soy sauce, and no unfiltered vinegar.

According to my doctor, Dr. Martin Ross, Lyme Disease and yeast reinforce each other, and being on the antibiotics harms good intestinal bacteria, giving the yeast room to multiply. That's why before Dr. Ross started me on antibiotics, he put me on an anti-yeast medication. Now I've always assumed that I'm good in the yeast department because for years, even years before my Lyme diagnosis, I ate no sugar and no white flour, and I had no yeast symptoms.

But I've always had a few sweet things, as long as I saw the nutritional value: ginger bread sweetened with molasses and honey, pomegranate juice for the antioxidants, and recently, as I've been to busy writing to bake, and the Flying Apron gluten-free, vegan, organic sustainable bakery opened a few blocks from my house, I've been relying on their muffins (sweetened with maple syrup) to get me through most days. Actually, the amount of maple syrup (for the trace minerals) and frozen berries (for the antioxidants) and dark chocolate (for the antioxidants) I consumed each day was creeping up and up.

But that was OK, because I love vegetables above all else, and compared to everyone else I know, who eat cookies and ice cream and drink vodka, I am a food saint. Virtue is practically my middle name.

Or so I thought until Nesreen brought me down to earth a week ago Friday: No fruit or sweeteners for one to two weeks.

It just so happened The Poet had started a similar diet, for different reasons, a week earlier. So I went home and told him we'd do the diet together.

"That's great, sweetie, it's a really good diet," he said. "Let's do it together until the end of the month." Without thinking, I agreed.

After one week, I now know I was never, ever, a food saint before this. This no fruit thing is the toughest diet I've ever done. Before now I've stopped eating the aforementioned sugar and white flour, and wheat, and even for long stretches soy, or dairy, or chicken or eggs. None of it was hard. This is.

Without anything sweet at all, without even vinegar or soy sauce to flavor your food, time moves differently. It slows down, it feels undifferentiated. Weirdly, the savory foods I've always loved-- kale sauted with garlic, goat cheese, buckwheat noodles flavored with sesame oil and sea salt-- just aren't that exciting without the contrasting splashes of sweet throughout the day.

On the other hand, I slept really really well this week. Nine or ten hours every day. And my energy was even and steady, my concentration clear throughout the day, and yes, when I went dancing, I was spontaneous and graceful. I truly had one the of best nights for dancing I've had in a very, very long time.

So Nesreen said try one or two weeks, and The Poet said let's do it for three. As of today, I've decided to go for two weeks.

Do I really need to take an afternoon nap?

For the past ten years, the afternoon nap has been sacred. I cannot function without it, and the few days here and there when I was forced to skip it did not come out well, not at all.

A nap is a good thing. My naturopath tells me a short nap can be equivalent to three extra hours of sleep. I always wake up feeling refreshed, even I'm asleep for just five minutes. I also have to plan my day around this. Between the hours of one and three, I can't just be out anywhere without a bed handy.

But yesterday, I postponed my nap to work on the float for the parade. Everyone in the dance group is supposed to pitch in, and 1pm was the only time I had. I ate lunch and forced myself out the door, feeling a little groggy. By the time I was at the float construction station, five minutes later, I had a spring in my step.

It was a beautiful day. I worked energetically for an hour, then helped everyone clean up and walked back home, feeling strong and alert.

"Boy, I don't need a nap at all," I thought to myself. I took my antibiotics, which I usually take right after lunch, and I immediately started to feel sleepy. I lay down and slept for an hour.

And again today, I walked over the library after lunch to pick up some books, and didn't feel sleepy at all. I have yet to take my antibiotics, but when I do, I'll probably need my nap.

So am I safe to conclude that if it weren't for the antibiotics, I might get by without a nap?

Perhaps the point is moot, since I am, in fact, taking antibiotics right now. It gives me hope, however, that someday I won't need the antibiotics or the nap, which means I could do things-- like say, hold down a job, or go to an all-day dance workshop, or go to an all-day anything. It just might happen.

(This picture, "Sleeping Woman in Blue", is by Konstantin Somow.)