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!!!