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?

ANTI-YEAST DIET, ONCE AGAIN

As of yesterday at noon, I am back on the anti-yeast diet. When I did it in 2011, I lost ten pounds. Six months later I went on the Shoemaker protocol, and lost ten more pounds. Six months later I did another round of anti-yeast and lost five pounds.

At that point I wanted to hang a sign around my neck that read "I DON'T HAVE AN EATING DISORDER, I HAVE LYME DISEASE."

Recently, I have been noticing the connection between eating fruit and the congestion coming back into my sinuses. The anti-Lyme herb Teasel has been wonderful at getting at the nastiness I felt buried back in my ears and other corners of my head, but now that I'm on the full dose of Teasel, I am still struggling with that one last remnant of something that's leaving me congested. I suspected yeast, but really didn't want to stop eating fruit again. It's hard enough to maintain my weight as it is. A couple days ago I was eating a tangerine and immediately the infection in my sinuses flared.

(The painting to the right, btw, is by Lucas Cranach, c. 1530.)

So here I am back on anti-yeast. I will only do it for two or three days, because I have no extra five pounds to lose this time. I've been relying heavily on berries, apples, and grapefruit for carbohydrates (I can't eat gluten and on the Shoemaker protocol corn and potatoes have also become difficult to digest) and with the way I was craving fruit last night and even this morning when I woke up, I made the right decision.

"Dorothy Seton-- A Daughter of Eve" 1903 by James McNeill Whistler

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.

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!

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.

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

ALLERGENS::MY APARTMENT as SUPERMAN::KRYPTONITE

My last post was Sept 10th-- almost four months ago. I keep a pretty strict policy not to post when things are going badly—to protect my own mental health as well that of my precious readers. Writing about how bad I feel just isn’t cathartic for me, and I’m sure reading about it isn’t therapeutic for anyone else.

My primary reason for not posting, however, has been even more basic than that: no time.

At the end of September, I flew back to Seattle after two months at my parents’ in Washington DC, and the Poet flew back from two months in Egypt. I arrived at our tiny apartment (a little gem of a place with a view of Lake Union, a shimmering emerald back yard, and in walking distance of anything you need) to breathe in mold.

To clarify: MOLD, the thing I am most allergic to in the world, so allergic that I have suicidal thoughts after a few hours in forced air heat or air conditioning, or—perhaps the more palatable alternative—become a raving, sobbing lunatic after said exposure. Don’t even talk to me about basements. To cop a metaphor from the title of this post:

Kryptonite:: Superman
as
Mold:: Naomi

except with way more melodrama in the mold-Naomi scenario.

Back to my story. While the Poet and I were away, condensation on the old, single-paned windows had created mildew on the decrepit paint of the window casings. The spores in the air had overwhelmed my air purifiers, which I’d been smart enough to leave running, but not smart enough to get new filters for. I’d also left strict instructions to our house sitters to keep the windows open, or at least cracked, but this clearly hadn’t been enough. The moldy, musty smell (ie mold spores) had gotten into every textile in the apartment.

So I spent September 27th through November 20th or so dedicating my every free moment to coordinating the mold patrol (house cleaners armed with bleach) and then getting rid of bedding, clothes, curtains, pot holders, papers, art supplies notebooks, and wood book cases, and my futon couch. I had such a steady stream of giveaways set out on the corner that neighbors asked if we were moving.

While this was going on, I had some terrible allergy attacks, one when I had to run out of the apartment with my teeth chattering uncontrollably as tears streamed down my eyes and I shouted incoherent things to my mother, whom I happened to be talking to on the phone. Thank god for that happenstance, since she is one of two people on this planet who could immediately understand what was going on and talk some sense into me. She got me to call my naturopath, Nesreen Medina, who came up with a wonderful solution:

SHOEMAKER PROTOCOL/MOLD ALLERGY TIP #1

1. Bentonite Clay. Nesreen was such a sweetheart she actually brought me this stuff on her way home from her office, since I was in no shape that day to drive to pick it up from her. It calmed me down quickly, and I was even able to go back into the apartment after I’d had my first dose of it. I’ve been taking it every day since then. According to Nesreen, it binds to “neurotoxins,” that is, the mold and other junk those of with Shoemaker livers can’t detox on our own. I love you, bentonite clay!!!!

So, after that crisis, I was able to go back inside and keep stripping things out of my apartment, until, with the passing of time, winter was coming on and I was left with the 15% of my clothes (the summer 15%) that I’d managed to salvage by running through washer countless times with industrial quantities of Seventh Generation Essential Oil of Lavender Blue Mountain Purer than Pure Eucalyptus and No Added Chemicals Laundry Detergent, and these precious clothes were stored in plastic laundry hampers in the kitchen, and I was sitting on the new organic cotton meditation cushion I’d bought at the Soaring Heart Futon and Mattress store (yes, that’s the real name), shivering in a summer sweater while I awaited delivery of a new air purifier filters and a new futon couch and read the instructions to my new Dyson vacuum cleaner.

(AN ASIDE:

DOMESTIC TRUTH #1:

It is an infallible principle of Newtonian physics that no matter how many plastic laundry hampers you have, they will always be in full use. I would like to note that two Decembers ago, after the freak snow storm that sequestered Seattle, the Poet and I used our plastic laundry bins as sleds, to excellent effect.)

The allergies until then had always been the sideshow of Lyme Disease, the bearded lady, so to speak, but now that I was out of the big tent, away from the clutches of the Ring Master, with all his fatigue and brain fog, it was time for me to take a good long look at the bearded lady, and then duel it out.

So I had my Dyson, and I had Ghusun (remember Ghuson—no?—well, she plays the role of kick-ass, no nonsense friend; if you don’t have a Ghusun in your life I suggest you go get one) who took me in hand and told me I had to allergy-control the apartment. No papers exposed to air, no clothing stacked on open shelving just because I was allergic to the dresser I’d tried to buy a couple years before at IKEA. No dust building up for years under the bed, no book creep as the Poet snuck more and more used books out of the extra room and into the comfort stacks next to his living room easy chair, no waiting until next week to vacuum.
Basically,

Ghusun:: Bearded Lady
as
Kryptonite:: Superman

I couldn’t have taken on the sideshow without her. I could not found my way out of IKEA without her, I could not have Dysoned under the bed without her, nor pulled the musty boxes from the way back of the closet without her there. And then she got a job.

So enter Susan, whom my mother found through a personal assistant agency. Susan was an angel disguised as a part-time nursing student. While I kept up with the Shoemaker protocol, she brought her sewing machine and hemmed the new curtains, made cushion covers for the bed, assembled a new set of drawers, organized closets, carried away boxes and boxes of books, sealed up the vents of the forced air heating system (which we’ve never used but nonetheless was putting dust into the apartment), and washed and dried and folded and organized and Dysoned everywhere as she went. Not to mention that every hour or so, she said, “This job is so much fun!”

And then the apartment was finally allergy resistant. We gave Susan a big hug goodbye, and it was time for David to arrive for Thanksgiving.

The bearded lady? Please. Don’t make me laugh.

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.

SWEET REASSURANCE

Extreme foods I’ve been eating lately: Watermelon rinds and sprouted buckwheat. My stepson’s friend showed me this summer how you can eat the rind of a watermelon. He took just a few bites from the slice he had in his hand. Last week I chopped up the flesh of the organic farm-share melon, froze it for later, and put the rind in the fridge. Have been eating a piece or two each day. Full of nutrients and perfect to get my cholestyramine-laden digestion moving! And the crunchy buckwheat is wonderful in yogurt.

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I have a policy of not going to the blog when I am down, because I can really write my way even further down, to the very bottom of the well of self-pity, and because I doubt anyone out there wants to hang out in the bottom of the well with me. (I’m sure whining and melodrama creeps into few of my posts anyway, but I do my best.)

So now I am coming clean: the first month on the Shoemaker protocol sucked me in like psychological quicksand. I was fatigued, I was overwhelmed with little medical chores that extracted my soul by the end of each day. I was barely sleeping more than I had before I started the protocol, and insomnia is scarcely a recipe for health and optimism. To make it worse, I am staying at my parents’ house, scene of my previous helplessness at the hands of Lyme disease, and I couldn’t help but wonder if time really was circular.

And I didn’t have any explanation for what was going on. I was supposed to be feeling better, and suddenly I had lost all the ground I’d gained from four years of antibiotics. Could all my progress vanish in a matter of weeks?

Yesterday I had a phone appointment with my naturopath, Amy Derksen. She reassured me all my symptoms were normal for someone starting Cholestyramine: the fatigue, trouble sleeping, over-the-top flare-up of mold allergies, yeast symptoms, continued need for blood thinners, etc.

“This just means this detox is a really big deal for your body.”

Which makes perfect sense. Two years living in extremely polluted Mexico City, then ten years of undiagnosed Lyme disease, followed by four years of industrial quantities of antibiotics while living with a compulsive collector us musty used books, and all of it, I’ve just learned, on a genetically handicapped liver. The detoxing would unquestionably be a big deal, and I guess this is just what it feels like. You’ve got to feel worse before you feel better, pain = gain, etc.


Just knowing what’s going on is enough to make me feel optimistic again.

Amy knows her stuff forwards and backwards, and she had quite a few suggestions for me, the first one being, increase your adrenal support—those poor adrenals are shot. So I’m back up to 9 Isocorts per day (had dropped it down to six a couple months ago and cheered at my progress). Other suggestions: a new technique for the enemas that helped quite a bit with digestion issues, and adding back in some neurotransmitters at bedtime, and some chromium to help with blood sugar regulation. All easy enough, all supplements I had just lying around since I’d optimistically stopped taking them a while back.

So yes, time is cyclical. I’ve looped my way back to the old pills I thought I wouldn’t need again. (Time is very frugal that way.) Time is also linear. I’m still heading in the direction of full health. Time, then, is shaped like slinky, and the bottom of the stairs is coming into sight.

CHOLESTYRAMINE

On July 20th I learned my liver does not break certain toxins down into water-soluble molecules but instead dumps them into my colon as fat-soluble molecules, where they are reabsorbed into my bloodstream. This created the toxic back-up that eventually lead to chronic insomnia for the past six months.

To treat this problem, Dr. Ross has put me on Cholestyramine. I drink it down before meals, and once it’s in my intestines it absorbs the fat-soluble toxins as they exit my liver.

After I first took Cholestyramine I felt a little drowsy, so I lay down on the futon and took a little nap! After months of insomnia, any sleep, even for a few minutes, is a godsend. I took this as a sign the stuff was doing what it was supposed to.

I am now at the end of week four on it, and here are some observations:

The regular Cholestyramine you’ll get at your drugstore tastes like Tang—one of my favorite drinks when I was eight years old. Yum! From the label, I saw what I was drinking was actually about 40% Cholestyramine and 60 % sugar, preservatives and flavoring. If, like me, you are taking Cholestyramine to support your liver, this is not a good thing. Probably, like me, you have chemical sensitivity and you can’t tolerate sugar or food additives.

(Under normal circumstances, I would not come near anything that tastes remotely like Tang. Anything that even smacks of a food additive—and that includes the “natural flavors” that are in the ingredients list of practically every packaged food, including organic foods—makes me feel ill. But for prescription medications, what can you do?)

After a week at a half dose of Cholestyramine, it was giving me a little headache each time I drank it. At three-quarters dose, the headache was intense and round-the-clock.

It turns out you can get Cholestyramine from Clark’s Pharmacy, in Redmond, WA, without all the sugar and additives, and thus without the accompanying headaches. I ordered mine as soon as my naturopath told me about it, and was never so happy to get a package in the mail.

In it’s pure form, Cholestyramine is a white powder that smells like fish. When you mix it in water, it’s the consistency of wet cement. In your bowels, it turns into dried cement. All around, it’s a very pleasant medication!

The best thing I’ve found to mix it with is tomato juice, or Knudson’s Organic Very Veggie Juice. It’s pretty pulpy, so it suspends the cholestyramine and ameliorates the sandy consistency. If you add some cumin and cayenne pepper, it’s a pretty tasty drink!

Once you have a few rounds of cholestyramin in your intestines, you can feel pretty uncomfortable. I’m already on Vitamin C, magnesium citrate and the coffee enema to prevent constipation, but there have been days when I still felt like I had my whole street’s worth of sidewalk paving squares in my bowels. I’m now taking fiber capsules with Very Veggie concoction, and that helps. My naturopath has also told me to take up to four capsules of magnesium citrate 30 minutes after swallowing the cholestyramine. I’m trying it today.

THE COFFEE ENEMA

There are two types of people: those who view coffee as a drink and those who go to great lengths to put it up their butts. Once, I was in the first group. Now I am in the second.

So how did I cross over to the dark side? My naturopath Nesreen Laham Medina first suggested I try an enema. I was so desperate for sleep at that point, I was willing. She didn’t say coffee—I’m sure I would have balked if she had.

“A water enema,” she said. “We’ll give you the equipment, and you can do it yourself in the bathtub. You can hang the bucket from the shower head so that gravity helps the water into your colon. It’s very easy.” So I went home with a special little bucket with a small spout at the bottom, and a bunch of flexible tubing that connected to the spout.

It turns out that hanging the enema bucket from the shower head is not a good idea—at least not with my type of shower head. I got everything set up and was lying the bathtub with the tube up my butt when the bucket came crashing down on my head. All right then. As my stepson says, “do-over.”

I de-tubed myself and washed everything out and looked around for another solution. In my bathroom there is a slowly dying spider plant on a four-foot high plant stand next to the toilet. In no time I had said spider plant on the floor and the stand next to the bathtub, with the enema bucket on top of it. It was sufficiently high off the ground to get the gravitational effect I needed.

The water enema was a success! I slept really well for the next couple nights. But the second time I tried it, it didn’t have the same effect. (This was in fact, a pattern over the past six months—anything I tried to get to sleep worked well once or twice, but then, as the toxins kept building up in my system, the insomnia overrode any minor detox effects I’d achieved with these baby steps.) But I had a powerful intuitive hunch that the water enema had me headed in the right direction.

So what to do? I had this vague notion about a coffee enema. I’d heard about it somewhere. That wasn’t quite recommendation enough—a hazy idea that people somewhere for some reason put coffee up their butts. But someone—a doctor, a friend into health stuff, must have mentioned it to me, because it was floating around in my head, and surely I didn’t put it there. I may write stories about people who keep pet vampires, but I couldn’t have come up with that, even in my wildest imagination. Looking over the instructions that came with my enema kit, I saw they were in fact for a coffee enema, not a water enema! My next appointment with Nesreen wasn’t for another week, and once again I was desperate for sleep, so I thought, why not?

That first coffee enema was transformative. I did it about 11 am, and for the rest of the day I felt wonderfully relaxed, also desperately thirsty, and I could feel a tingly, pin-prickly buzz in my arms and legs as I felt the effects of the enema pulling stuff out of my body. I can’t tell you why, but it was a distinct sensation of things coming out of my cells. Usually when I feel a healing buzz, for example when I take Vitamin C or B12, it feels as if things are going in to my muscles and cells. It feels nurturing. But this was inarguably a sensation of extraction—an extraction that needed to happen. It was sweet relief.

I slept well for the rest of the week. In fact, I was so relaxed I spent a great deal of time on the couch, watching TV or just spacing out. I couldn’t really move, I was so relaxed. The way you might feel after months of tension have been washed away. And it’s been true love-hate ever since.

So here’s the short of it on detoxing: you can take all the cholestyramine and charcoal and chlorella and liver flush herbs you want, but nothing beats the coffee enema. I wish it weren’t so, because this is surely the most time consuming solution I’ve found so far for my Lyme-and-liver woes, but I’ve also come to be quite fond of the process, simply because it works.


TIPS AND TRICKS FOR THE COFFEE ENEMA:

1. Don’t hang the enema bucket from the shower head. Use a plant stand, night stand or tall kitchen stool next to the bath tub.
2. Take your time—and do what you have to get it. Tell your family you will need privacy in the bathroom, lock the bathroom door, ask your spouse/partner to take the kids for a bike ride, or let the kids play video games. Whatever it takes so you know you won’t be disturbed.
3. The first few times, give yourself a full hour. This will include set up and breakdown, and plenty of washing of the enema equipment. I run hydrogen peroxide through the bucket and tubing before the enema, and wash with lots of Dr. Bronner’s liquid soap afterwards, and use hydrogen peroxide again on the red tube (the one that’s just been up my butt). As you get more practiced at the enema, you can get the total time down to closer to forty minutes.
4. Buy the biggest container of hydrogen peroxide you can find. It’s cheap and is the safest, most non-toxic way to sanitize.
5. Plan ahead. Make the coffee three or four hours beforehand so it can cool to room temperature, or put it in the freezer for an hour to cool it down. Perhaps this is obvious, but: do not use hot coffee!
6. I use a full coffee grinder’s worth of coffee and brew it in a 28-oz French press. This makes about 24 oz of coffee and I use most of it for the enema.
7. Do the enema after you’ve had a bowel movement, so it’s easier to get the tube up there and don’t feel cramping, but also do it as early in the day as possible. If you do it after 12 noon, it can keep you up at night.
8. Use a chemical-free lotion to lubricate the tip of the enema tube, such as one of the Alaffia Shea-butter based products. Put a folded towel in the bathtub and lie on your back while you give yourself the enema.
9. Once the coffee is in, hold it in for up to fifteen minutes. (Ten is fine at the start if that’s all you can manage.) Set a timer, lie on your back or on your right side and read a book or listen to something that relaxes you. Since your organic lotion is handy, use it to gently massage your stomach in a counter-clockwise direction, starting at the lower left pelvis and going along up under the ribs and back down again on the right side. This helps keep the coffee in, pushing it up towards your liver. The instructions that came with my enema kit advise against keeping the coffee in for more than fifteen minutes, and from my own experience, I do too.

It’s not dangerous if you keep the enema going for a minute or two more, but the times I’ve done it for closer to twenty minutes the detox effect has been over the top--almost like I'm on a drug. (I feel fabulously relaxed, yet my brain is going 90 miles an hour and I can't keep a thougt in my head for more than five seconds. My senses are intense, and on high alert, but also quick to flip into edginess.) This usually leads to trouble sleeping that same night, and if you do it repeatedly it will put a strain on your system and wear you out! I'm not saying never do the enema for more than fifteen minutes--for example, if you've got a terrible detox headache and think doing a longer enema will help, go ahead. But don't do it regularly.
10. After fifteen minutes (or less), the coffee has done its work on your liver and you’re ready to expel. Again, take your time. It might take a few minutes for everything to come out.
11. Plan to get a good dose of exercise later in the day, even if you’re just doing the ten minute version. This will help move the coffee out of your system and help you sleep.
12. Drink plenty of water, and add electrolytes, because the enema pulls them out of you. If you don’t have electrolytes (and I don’t mean Gatorade!), call 877-CRAYHON and ask for Peltier Electrolyte Concentrate.

LIFE IS FULL OF PLEASANT SURPRISES

I have been without internet for quite some time, but meanwhile life on the Shoemaker protocol has inspired me to write a few more blog entries. I will be posting them here over the next few days.


August 5th


I arrived at my parents house two weeks ago, where I’ve been sequestered here with my French press, my enema tubing, and my array of powders and teas. I am dealing the new medical regimen. Despite Dr. Ross’s optimistic suggestion that I “cut down on my supplements” (see last post), high speed detox is not easier than antibiotics. We’re talking two naps per day, coffee enemas, neti pot (yes, the dreaded neti pot) and nasal spray and bulk herb teas, etc, etc. It’s pretty much a round-the-clock job, and I have to schedule it when my body wants to do it, not when I want to.

After a day of all that, it just seems too complicated to pick up the phone. All I want to do, really, is get back to writing my short stories and eventually my memoir. By avoiding the Motorola and heading instead to my laptop (as soon as I get a break from the medical stuff, that is) I’m managing to eke out a half hour or hour here and there. Not much, but enough to polish a couple stories and think about where to send them for publication.

In short, I haven’t seen anyone since I got here but my mom and dad, and The Poet via Skype. It’s so easy when I’m here to go into Hermit-of-Lyme-Disease mode!

But eventually there comes a day when I feel really down. Yesterday started out just fine—the high point being about 11 a.m., right after I did my coffee enema, when I felt the tightness in my body swooshing away, followed by a cascade of relaxation so glorious it bordered on euphoria. But within a few hours the relaxation had shifted to heaviness that stubbornly refused to give over to sleep when I lay down for my afternoon nap. And once I got out of bed, for my supposed writing time, nothing worked—the internet connection was so slow I couldn’t look up the facts I needed to finish a short story. So frustrating!

By the time my mom and I had walked back from picking up the CSA at 5pm, I was despondent. The excess of vegetables felt like the weight of the entire world hanging over my head, an obligation to cook when all I wanted was a few hours—even twenty minutes!—when I could use my brain—read, write, anything. I put tomatillos and zucchini and bell pepper and onions and okra and cucumbers in the fridge, which in itself seemed to take forever, wearing on my worn-thin patience for menial tasks. And also I had to get outside—I’ve barely been outside all summer, and I desperately need to get the sun on my skin. I changed into my bikini. Whatever I would do in my one task-free hour of the day, it would be outside in the sun.

Not by coincidence, the day before I’d gotten one more rejection of a story I’ve been trying for eight months to get published. Rejections are part of the game—usually I shake them off in a split second. But this one managed to sink just a bit. My life makes little sense at those moments—mind-numbing medical tasks all day, and then the suspicion that writing, the thing in life that makes me happiest, might be just a pathetic dream after all.

If I just had someone my age to talk to, I thought, I might feel better. My mom’s great but it’s like she’s practically the only person I’ve seen (duh, she is practically the only person I’ve seen)…. If there were someone else around, a friendly face…. And finally I remember I do have friends in this city, and they do have phone numbers!

So I called people, and got their voice mails.

I took my book out to the sunny back patio. I read in waves of concentration that alternated with tsunamis of despair—times when I put my head down and just felt how tired I was, how tired my brain was. And worried about my changing symptoms—like, how tired I get after the coffee enema, and irritated my sinuses are. I can’t even sit on the upholstered living room couch anymore (once a favorite refuge) because the cushions are now, suddenly, so musty to me I can’t stand to be near them. What’s up with that?

So should I call Dr. Ross and ask to test for the sinus infection—and possibly go on more antibiotics? So should carry on with the herbal remedies and neti pot? Could I find probiotics for my nose? Maybe I could look it up on the internet—doh! The internet isn’t working.

And so on.

And then, at 9:30pm, I tried checking my e-mail. Lo and behold it worked! And I learned I won an award for a short story I finished a year ago.

!!!!!!!!!!!!!!!!!!!

I’m not supposed to say what award, because it’s supposed to be confidential until the publication comes out, and it’s not a Pushcart or an O’Henry or anything like that, but does sound pretty fancy!

Hooray!!! Hooray!!!! A big dollop of joy and a sprinkling of redemption. I’m not just a crazy woman who spends half the day putting coffee up her butt. I am a writer who puts coffee up her butt and who has won an award!!!

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 SHOEMAKER PROJECT

When I last saw Dr. Ross, he was excited to try a new approach, pioneered by Dr. Ritchie Shoemaker, which focuses on chronic inflammation caused by factors other than Lyme. That would be (as Dr. Ross explained to me) low Vitamin D, a sinus staff infection, and liver issues. When I ran the tests my Vitamin D was in fact low (see above), but when it came to my liver test (HLA-DR typing) Ross said he needed to do more research and talk to Shoemaker, but he was 90% sure I didn’t have a genetic liver problem.

I was really, really disappointed I didn’t have this. Yes, I know well and strangely pickled when you find yourself wishing for irreversible genetic typing that corresponds to health issues, but that’s where my life is right now. I’m up to my eyeballs in liver detox herbs (five at last count!), liver flush teas that need to be brewed daily, coffee enemas, vitamin C and fiber that need to mixed thoroughly in water before I can take them (three or four times daily)…. It goes on and on, until I feel like 75% of my waking hours are taken up by fulfilling these thirty-second to ten minute tasks—all for the purpose of detoxing, recovering from antibiotics, getting the Lyme die-off out of my system. And as soon as I slack off it means I won't sleep! So the genome typing would have explained a lot of things.

As for the sinus infection, the test kits for it are unavailable for now. I’ll go see Ross next week for a follow up. Here's hoping he's got that test kit.

In the interim, I went back to my old naturopath, Amy Derksen.

“At this point, I’m surprised at how things are going,” I told her. “I’m at the four-year mark on antibiotics, and I’ve made tremendous progress on physical stamina, but the other symptoms, especially insomnia, won’t budge.” She agreed with me, and said she thought the Shoemaker protocol would be helpful. Given the rate I’m needing to do coffee enemas, she said, I have major detox issues, and it’s time to ask whether all of the toxicity is coming just from Lyme or if there are other causes. She changed a few supplements, adding a couple to speed up detoxing, but again she wasn’t familiar enough with Shoemaker’s work to launch into it full on right now.

So I decided to take matters into my own hands. For August and September I will be at my parents’ house in DC. Since Shoemaker is in Maryland, I looked him up on the internet so I could schedule an appointment. It turns out this is not as simple as I had imagined. There was no phone number on the website. I had to fill out an online form requesting an e-mail reply that will give me a phone number to call in order to schedule the appointment. I have yet to receive the e-mail, but the info on the website explained I should be patient—it can take up to two weeks before they send it. So now I am on the wait-list for an opening in the schedule of the appointment scheduler! Now that's a doctor in demand.

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.