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.

LINKS

Ok, so I haven't been that great on putting useful links about Lyme disease on here. I'd just like to point out, however, that there are quite a few followers on this blog and many of them have very useful links to sites with good information about Lyme. Thank you, followers! And thank you for reading!

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.

THIS IS WHERE I GOT BITTEN BY A TICK

Pretty, isn't it? This what you see from the porch of my parents' weekend house. I was bitten here in March of 2000, and in all likelihood once before then, probably when I was teenager. I haven't been back since I moved to Seattle in 2004, both because once I was in Seattle I began to suspect I had Lyme disease, and because I have terrible, kill-me-now allergies when I am inside the house, which is built on top of a cache of mold of WMD proportions.

With hindsight, I know it wasn't just the tick bite that brought on all my health problems. Although I undoubtedly had Lyme disease, it took going to Mexico, where I got parasites and exposed myself to tons of pollution, to set it off. I also now know I have a congenitally weak liver (see my posts under the label "Shoemaker protocol" for more on that), which I'm sure contributed to the downturn.

Still, I've avoided the place until last Friday, when loneliness got the better of me. My entire family, minus me, goes here at least a few times a year for the 4th of July, etc. My parents go every weekend, and in the summer my brother and his family usually join them. And last week, after two weeks of living like a hermit, I decided I just had to go so I could be with my family-- mom, dad, bro, sister-in-law, neice and three-month-old nephew. It was just this overwhelming desire to be part of things. I decided it was worth the risk to go for the afternoon. I stayed in or right next to the pool, where it's paved, always wore my shoes when I cross the grass to the house, and no, I didn't get a tick bite. I also had a lot of fun.

I think it's worth a repeat. Today I will also order Daminix, something I've been meaning to do
for a long time, because it reduces the risk of anyone there getting exposed to Lyme, and although my family seem oblivious to it, I don't want them to be running that risk either.

So here's what happened when my two and a half year-old niece, Maggie, painted her toes (nail polish compliments of the other grandmother!)

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.

SPROUT CRAZED

My co-op stopped selling sprouts, so I learned to make them myself. How happy this makes me!!! (A much better health-nut kitchen project than home brewed kombucha, at least for those of us with yeast/fungal issues.)

There's an infinity of stuff on the internet about how to sprout, so I won't add to it. I'll just say that when I eat sprouted lentils, I immediately feel energized. They're packed with enzymes, vitamins and proteins, and they taste delicious.

My favorite so far: sprouted buckwheat, toasted to a nice golden brown and mixed into yogurt. Yum!!

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.

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.

Yesterday I rode my bike a couple miles over to Dandelion Botanical Company to attend a support group called "Dudes and Chicks with Ticks". I've only gone once to a support group and it was a disaster. Way too much complaining, not enough constructive information sharing.

But the meeting yesterday was called "Lyme Success Stories" and we were told to bring positive attitudes, so how could I not go? We all sat around a table in the upstairs conference room and shared what had worked for us in our treatment, and it was really great to meet others with Lyme who had a positive attitude.

At the end of the meeting, two women who were in remission spoke about how they had gotten there. (Remission, in this case, means they have finished their Lyme antibiotics and are feeling completely recovered, but they still take care of themselves with naturopathy and diet.)

Some comments these two women made that stuck with me:

Anna: "Being stubborn is good. You need to be stubborn to beat Lyme."

Malia: "It's not a few little things, it's a hundred little things you need to do to get through this treatment. But I kicked Lyme's ass.... And you all know that the phone gets very heavy when you have Lyme, but we need to learn how to pick it up ask for help."

It changed my thinking to learn Malia was on antibiotics for five years, and now she's in remission. As I approach the four year mark of antibiotics, and even with all the progress I've made, I've had some moments in the past month when I've thought "Will I be on antibiotics for the rest of my life? What if I just stop making progress and I'm stuck in this half-better, half-sick state, and I never get a full night's sleep again?"

Hearing that it took someone five years changed that. So what if I'm not 100% yet? It doesn't mean I won't get there if I keep trying.

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.

THE ANTI-YEAST DIET DAY 60

Back in early January I started the anti-yeast diet for what I thought would be two weeks. I'm still on it two months later and intend to stay on it for as long as I can.

It is the best diet I've done in my life. As soon as I started, I was sleeping nine and ten hour per day, which, given my chronic battles with insomnia, felt like manna from heaven. But the best part was what it did for my concentration.

Brain fog was one of those things I didn't know I had until it was gone. I never had the outsized brain fog I've read about-- forgetting words, losing my way when driving, etc. But I did have times when I just couldn't concentrate very well. Even though most of my physical energy had returned to me, it was hard to keep working (writing) throughout the day because my thoughts would get slow and mushy at times.

That is gone on the anti-yeast diet. And so, despite a few difficult days in the middle (more on that in the next post) I'm sticking with it.

1:41 A.M.

The Poet and I went out for dinner to the Japanese place that serves brown rice. Both of us had cooked salmon with brown rice, although I could only eat about 1/4 of the rice because they had put soy sauce on parts of it. I was still hungry when we got home, and had little snacks all night-- fried tofu with miso, popcorn cooked in ghee, avocado, a piece of cheese. I finally stopped feeling hungry, was exhausted and fell asleep by 10pm.

12:45 and I was awake again, hungry.

Now the thing about this diet is that it does make me very hungry, and I have lost some weight on it, which was definitely not my goal. I'm eating as many high-fat foods as I can manage so I can keep my weight up. (The Poet is skipping most of the high-fat stuff and losing weight, but that is what he wants).

But what is real hunger and what is the hunger of the yeast? Because I've realized in the past month that these are two different things.

And then there is the third kind of hunger, which is when I need one of my supplements, or I've forgotten to take a round of pills, I can sometimes feel hungry too, even if I've had enough to eat. It sounds crazy, but this is how my body tries to remind me to take those pills I forgot. (Doesn't always work-- sometimes I just end up eating more and not realizing I should be taking pills.)

So I reviewed if I'd taken all my pills: yes. I then tried taking some Vitamin C, and then my charcoal, although it was early in the night for that. Lay back down again, still hungry, not falling asleep.

The Poet, fast asleep, made this panicky noise he makes sometimes when he's sleeping-- a sort of half-cry of fear, half-wimper. I always assume he's reliving something terrible from his childhood at those moments, and I try to get my arms around him as fast as I can. So I jumped from my bed and into his, put my arms around him, he clung to me, snuggled around me, turned over and went back to sleep. Or maybe he never woke up. So I kept holding him, and thought, OK, I'll lie here and fall asleep. Nothing helps me sleep better than lying next to him (assuming he's not kicking me, which he does half the time, which is why I sleep in a different bed).

Fifteen minutes later and the Poet is snoring, and I am still HUNGRY!

So I decide it is real hunger and get up. The clock says 1:41. How can this be? I moved around very little today, due to exhastion I attributed to yeast die-off. I ate a big bowl of popcorn, some avocado slices and cheese right before I went to bed. It makes no sense to eat in the middle of the night like this, but if I don't sleep, tomorrow will be ruined for working as well.

So here I am. I've eaten yogurt, quinoa, carrots (yes, carrots) and cashew butter. Still feel a little hungry, but I think I will be able to sleep. Tomorrow I will give in and cut open the kabocha and steam it up. I can have it Saturday for breakfast. Four days of extreme diet is enough.

ANTI-YEAST DIET DAY 27: PARING IT DOWN

Over the past two days, I realized that my anti-yeast diet has been flawed.

That is not to say the diet wasn't working. It was working. I was getting benefits from it. But was I implementing the diet the maximum extent possible? I was not.

The culprits were kabocha squash, sweet potatoes and lemon juice. I thought these things were ok because my naturopath Nesreen told me I could eat no fruit, but any vegetable was fine, and I could have lemon.

I understood this to mean lemon juice was good, anti-yeast-wise. I was having a lot of lemon juice, filling an eight ounce glass with half lemon juice, half water, and drinking that twice a day. I would drink it at the end of lunch and dinner, when despite all that I'd eaten I still felt hungry. I thought the lemon juice must have been doing something kill off the yeast.

But what Nesreen really meant was I could get away with a little lemon here and there, in salad dressing, etc. Downing four ounces of lemon juice at one sitting was, I've now concluded, actually feeding the yeast.

Since Tuesday night, I've cut out lemon and also sweet potatoes and squash. I went to bed hungry, despite having eaten a good dinner plus popcorn after, which usually fills me up. I woke at 4 a.m. starving, ate yogurt with brown rice and beans and went back to sleep still feeling starving.

All yesterday morning I was so hungry I could barely concentrate on my work. I had snacks and then lunch, and when I was still hungry after that, I decided it must be the yeast screaming out for lemon juice, a carrot, anything the least bit sweet.

I was way too tense to sleep, started crying while I listened to a BBC report of the events in Egypt, and decided I should go for a walk. It was a sunny day, and path along our corner of Lake Union, underneath the soaring Aurora Bridge, was as gorgeous as ever. As I walked, I told my body to calm down, I took long slow breaths whenever I remembered, and I thought about my feet, which always, for some strange reason, eases tension. By the time I got home I wasn't feeling hungry anymore. I took my Vitamin C and slept for an hour, woke up feeling like I'd crossed a bridge into the land of calmness.

By the evening, I had the tell-tale die-off headache. I'd starved out a stubborn hoard of yeast.

No more lemon for me. I will see if I can make it a few more days without squash or sweet potatoes either. I know these things are low on the glycemic index, so I was telling myself they were ok. But I looked on line yesterday for more information on this diet. As usual, the internet is full of conflicting opions, but one website definitely said no sweet potatoes, no carrots, no corn.

Does this sound easy? It does not. Do I really, really want to eat some squash? Yes, I do.

I'm telling myself I can do anything for a few days, anything if it helps me get over Lyme.

THE ANTI-YEAST DIET DAY 25

The two week mark came and went, and I am still on this diet. I have quite a few motives for staying on, one of which is to support the The Poet, who is on a diet that excludes everything mine does and quite a bit more. On the days when I wanted to quit, the thought of bringing and apple into the apartment made me feel so guilty I couldn't do it.

But an even bigger motive are the results. I am still sleeping nine or ten hours a day, still have better concentration, and at about the two week mark I noticed my lymph felt better.

Poor lymph drainage has plagued me since I've been on the antibiotics for Lyme, and I often felt as if it were getting worse than ever. If I hadn't exercised enough, and in the right way, to drain my lymph, I couldn't sleep, and even then eight horizontal hours were difficult. I took to sleeping a chair for part of the night, or I would wake up with my head and armpits so congested (yes, my armpits can get congested) that I couldn't get back to sleep if I didn't get up and flap my arms around like a chicken.

The Poet once woke up in the middle of the night and saw me doing this and said "Heaven save me!" But I digress....

Funny how there are some things you don't miss when they're gone, don't even notice that they're gone when they're gone. My lymph problems were one of them. It took me more than a few days to realize I didn't need to do my arm weights for twenty minutes in the afternoon in order to sleep at night, that I was waking up in the early hours, taking my pills and going right back to sleep without even thinking about my lymph.

I still feel my sinuses draining from time to time, but not constantly and at an alarming rate the way it was three weeks ago. I'd alway attributed this to the pressure on my lymph system from the Lyme die-off, but now it's clear the yeast was a big part of it. I thought I had no yeast problems. I did.

I had a few days that were rough, right around the two-week mark-- headaches, difficulty sleeping, and I was tired and cranky after I exercised. I went to Nesreen and she put me on a B-12 supplement (Perque B-12) and that did the trick. I'm sleeping again, I'm running for miles and feeling good afterwards. I'm happy again.

So for now, I'm staying on this crazy diet. I've even gotten used to it. Sure, I'd like an apple, but I'm no longer pining away for one, or thinking endlessly about blueberries and mangoes. Yogurt and purple cabbage and sweet potatoes are interesting enough. It helps that Nesreen gave me permission to have dark chocolate again-- not the one I used to eat, but the 91% cacao bar made by Theo (the chocolate factory in my neighborhood!). It tastes sweet, and about one square centimeter every other day is all I can handle. That's how food virtuous I've become.

But mostly around here, we're not thinking too much about our tandem diets. We've been watching and reading and talking non-stop about what's going on in Egypt. The Poet is Egyptian, and he has been bursting with wonder, pride, excitement, impatience and joy this past week. Leave, Mubarak, leave!

RANT: PLEASE DON'T STAND SO CLOSE TO ME

Why does anyone douse themselves with perfume before they go the gym???? And why do they then chose to use the stair stepper next to mine, forcing me to breathe in the said perfume until I finally abandon my beloved, addictive exercise machine for the lowly stationary bicycle????

Why do people not know that there are many people in the world allergic to perfume??? And that the others who aren't allergic to perfume do not want to smell it from two exercise machines away???

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.

New Year's Resolution Remix

If you read my last post, you know my resolution for the new year was to make my own kombucha, as soon as I returned to Seattle. I came back Thursday, feeling pretty horrific from a herx as I tried increasing my Amoxicillin from ten capsules a day to eleven (making me one capsule shy of the full dose).

This Friday morning, before my appointment with my naturopath Nesreen, and before I'd had a chance to do anything about the Kombucha Project, I opened the refridgerator for breakfast. I pulled out the yogurt and scooped some into a bowl. Then I pulled out the bottle of maple syrup I usually put on my yogurt. I was already hungry, but when I saw the maple syrup, my stomach lurched with hunger. I was a strange feeling-- as if something inside me saw the maple syrup and was yelling "gimme gimme gimme!" I poured the maple syrup on my yogurt, the way I always do, and ate it.

Meanwhile, The Poet had come back to Seattle a week earlier, seen his own doctor and started a strict detox diet. No gluten, no fruit, no tomatoes, no nuts besides almonds and pumpkin seeds, no vinegar, no dairy, no... well, it's basically chicken, fish, turkey, vegetables and quinoa.... I said I would do it with him, but I wasn't really considering cutting out fruit, yogurt or maple syrup. I figured I'm virtuous enough since I never eat wheat or any refined sugar.

So I was explaining all this when I saw Nesreen later that day, even the part about the small monster inside me wanting the maple syrup. And guess what she said? I should do the diet with The Poet. Not just a symbolic giving up tomatoes and salad dressing.

"No fruit, for real?" I asked.

"No fruit, no sweeteners, no vinegar," Nesreen said. "You have yeast and you need to get rid of it. This diet will do it."

"No maple syrup?"

"Absolutely no maple syrup. For at least one week, two if you can do it."

"No grapefruit?"

"Grapefruit is a fruit! No grapefruit."

"Dark chocolate?"

"Nope."

"What about kombucha?" I asked.

Nesreens eyes widened. "No no no no! No kombucha!"

She explained that while kombucha is a probiotic, it usually contains yeast, due to the fermentation. That sediment at the bottom? Yeast.

So my resolution went out the window, only to be replaced by a harder resolution: the anti-candida diet.

While making kombucha at home sounds like fun, even hip, even glamorous (my twenty-three-year-old Manhattanite cousin was all over the kombucha idea), eating no fruit or maple syrup or vinegar is just boringly difficult. Now I really understood how disciplined The Poet was being with his diet for the past week.

Interestingly, all I could think about for the rest of Friday afternoon was how tragic it was that I couldn't eat any blueberries or frozen mangoes. Now on day three, I'm starting to get used to the all-veggie thing, but after every meal I find myself thinking "and now I'll have a piece of fruit." Or I start to make a grocery list, and the first thing that pops into my head is orange juice. And so on.

To compensate, I've been fantasizing how the anti-yeast diet will in just two weeks leave me focused when I write, speedy when I run, graceful and spontaneous on the dance floor, free of that clogged-lymph feeling and of the tight muscles and lingering tendonitis in my left calf.

And if it doesn't happen, I've promised myself a certain cardigan sweater I've been longing for, if I can make it through the whole two weeks. But then again, at the end of two weeks that first taste of dark chocolate will be its own reward.

A GOOD YEAR

Time was, this part of the year had me in bed with the covers over my head as I cried myself to sleep. Christmas, my birthday, New Year's--all markers of one more year gone, one more year of nothing but illness to look back on.

But I can look back on 2010 and say it was a truly good year. The Poet and I had many happy moments together, I had two short stories accepted for publication, I danced in the Fremont Soltice Parade, I started running and riding a bike again, and I passed many content hours working on my stories and my memoir.

And yet, when people ask me how I am doing and how I spend my time, this is only part of the picture. The truth is, I still spend hours and hours a day being a Lyme patient. The routine I go through just to get to bed (Heparin injection, endless pills, several glasses of Vitamin C and Alkaseltzer Gold, plus brushing teeth, etc) takes 45 to 60 minutes! Many more minutes go by during the day taking pills, calling pharmacies, going to the doctor, getting myofascial release so my legs don't cramp up, and of course the daily nap and 90 minutes devoted to exercise so my lymph system doesn't clog up and keep me from sleeping.

It seems so crazy, almost impossible to explain-- how can I be so much better and still have so much of my time taken up in these seemingly trivial tasks that in my mind should take no time at all? Why does taking a nap and exercising each day mean I can't also spend a full day writing, or holding down an actual job?

The truth is, after three years of treatment, I still spend over half of what I consider 'work' hours on Lyme, and it's no less complicated than it was.

But now the hours when I am free from Lyme are truly mine. I'm not watching TV, or staring out the window in a daze, or sewing because it's all I have the energy for. I am strong and focused, I am zooming around. My sister-in-law, who has only known me after I got sick, said last summer when I arrived at her house on my bike, having just been swimming and now ready to babysit, it was as if she saw the real me for the first time.

Time was, on New Year's Eve I would always say the same thing: 'let this be the year, please please let this be the year I get better.' Now I now that in the coming year I will get better. I am still working with Lyme, or working my way around Lyme, but now I have other hopes for the coming year that have nothing to do with Lyme disease at all.

NEW YEAR'S RESOLUTIONS

I'm generally of the opinion that you don't need a new year to tweak yourself, but this year I happen to have two big resolutions.

1. Eat Slowly Again.

I used to be a very slow eater, still on the main course while everyone else moved on to dessert. This worked out well since I don't usually eat dessert. But in the past year I've been eating faster and faster. Why? Because now that I am feeling better, I am back to trying to squeeze more out of my day, feeling the need to hurry up most of the time. And also because The Poet eats very fast, and when he's done he starts eating the food on my plate. To defend against this I've started eating fast. Life should not be this kind of competition!!! I will eat slowly again and tell The Poet to get his own food.

2. Make Kombucha

Here's one I've been resisting for some time. Yes, people have told me you can make it at home. One guy at the grocery store, who saw me buying a $3.29 bottle of the stuff went off on a monologue about how he brews it up in his bathroom. "Yuck!" I thought. "I'll just keep buying it."

For those who don't know: kombucha is this fermented drink full probiotics. You can get it at Whole Foods or you organic co-op, but it's pricey. And it disappeared for a few months this summer after the Bureau of Alcohol, Tobacco and Firearms advised stores to pull it from the shelves because the alcohol content (natural result of the fermentation process) might possibly have been above the legal 5%.

Kombucha fans know how expensive a habit it is, and hard core fans might suspect it's just not as good as it used to before it took its hiatus and came back in government regulated form.

Meanwhile, the massive doses of Amoxicillin I'm on are doing a number on my digestion. I've been going through $50 bottles of probiotics like they're bowls of popcorn. Kombucha also helps, but how can I afford to drink it every day?

So when I saw an article in the Washington Post on how easy it is to brew Kombucha at home, I knew it was time. I'm in DC now visiting the family, but I'm back in Seattle next week, and day 1 at home is day 1 for Kombucha brewing. I'll keep you posted.