Sunday, July 31, 2011


“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.

Friday, July 29, 2011


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!!

Wednesday, July 20, 2011


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.


“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.

Tuesday, July 19, 2011


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.

Tuesday, July 12, 2011


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.