On that note, I'm going to talk about my digestion now and I want to be clear that nothing I'm going to say is a metaphor. My nausea isn't existential angst. I spent over a year trying to get through that little book and I still can't say the word without thinking of it. I also usually think of Buster and Lucille II on Arrested Development. "It's our nausea." That makes me feel a little better.
After my post last week I was really in despair about my digestion problems. I was getting far below my lowest weight ever, and I was afraid that soon my ribs would be visible through my sweater. I left a distressed voicemail for my gastroenterologist and fired off a hastily written e-mail to Dr. Cheney's assistant, urging them that there had to be more we could do. Blood tests, something. I heard back from the gastroenterologist a few days later that I should keep taking the carafate and we'd talk after my ultrasound Monday. I stopped taking the carafate anyway because it seemed clear it wasn't helping. And I slept through my ultrasound Monday and still need to reschedule, which I will do once I think I am capable of getting to the hospital by 9am. It seemed possible last week when I made the appointment but now I'm so weak, presumably from lack of nutrition, I lie in bed for hours before I move to the couch and I don't do much then either. I really wanted to go to that ultrasound though. The night before I was lying in bed imagining how they'd find something terrible, nothing less than a fist-sized tumor, and that half my intestines would have to be taken out. But they probably won't find anything.
What I've been wondering is, how many other CFS patients have this much trouble eating? I know GI symptoms are supposed to be common, but this bad? Especially since Dr. Cheney said my GI test results were "pretty good" compared to the rest of his practice. Is the rest of his practice losing a half a pound a day? Are they all in severe pain every time they drink a cup of broth? I tested negative for yeast and fungi, and according to the notes he wrote on my results my Total Intestinal SIgA at 235 was "not bad" and my gut dysbiosis was "moderate." There was even a place where he wrote "pretty good". The only other part circled was "low" chymotrypsin, a marker enzyme for pancreatic exocrine output.
So what is it that is causing terrible nausea whenever I eat anything? I've been eating a lot of raw vegetable salads, and recently found out that Dr. Pimentel, local bacterial overgrowth expert, considers them bad for overgrowth. But I always felt the least nauseous when I ate them. But now sometimes they make me sick, sometimes not. When I first started the goat kefir it was fine, but by Saturday I realized the nausea was worse and worse every time I drank it. It's supposed to be easily digestible, but apparently not for me. I'm back to the coconut now which is ok so far. I wonder if it was the animal protein in the kefir that was hard to digest? To be safe I've been sticking to brown rice and tempeh for protein.
There is so much I don't know about digestion. I've had the wikipedia page on it open in my browser for a couple days now but I haven't gotten to it yet. Somehow I don't think it will provide any insight. 2008's Six months of nausea has left me with the impression that the entire field of gastroenterology has no idea what's going on either, unless you have an ulcer or diverticulitis. The one I'm seeing now, who says he understands Chronic Fatigue Syndrome had me wear a 24 hour holter monitor. I don't understand why yet. He doesn't think my "moderate dysbiosis" matters or that there's anything to bacterial overgrowth and good and bad bacteria.
I got a little upset with my mom on the phone. She asked how much I weighed now and when I told her she gasped and said, "Oh Alison! You have to do something about that!" As if I hadn't been trying. As if it hasn't been my number one priority. As if I wanted this. She said that's not what she meant, and I know it wasn't but it felt like a very accusatory reaction and reminded me of my gynecologist visit last month:
"You've lost 5 pounds since your last visit. You can't afford to lose anymore weight. What are you doing about it?"
"Well...I'm seeing a new doctor now for Chronic Fatigue Syndrome and I'm on his GI protocol..."
"Well clearly it's not working. Have you been to a gastroenterologist?"
"Well I went to a lot of gastroenterologists in 2008 when I was really sick and none of them could find anything wrong with..."
"Have you been to see Dr. Pimentel?"
"Yes, he thought I might have AI pancreatitis, but then I didn't. And..."
"Well you have to do something. See another gastroenterologist. You can't lose anymore weight. You're skinnier than me."
I wondered what her excuse was but didn't ask. I was still reeling from my interrogation. How sick does a girl have to be to escape suspicion of being anorexic? Did she not understand that there was no cure for CFS? That you can't just walk into a doctors office and have your symptoms taken care of? The irony is that when this all first started in 2008 that's exactly what I thought. "Oh, nausea! Something normal and concrete that I can go to a doctor's office and get medicine for."
I told my mom I didn't really have any hope of any of my doctor's finding anything and that I'd probably just keep wasting away until they had to feed me through a tube. This upset her, understandably, so I had to explain that that was only my worst case scenario, and that it was far more likely things would work out like last time. I'd slowly start getting better by accident, or for an unknown reason.
Doctors and therapists are always asking, "What do you do to make your fatigue better?" and I want to laugh at them. Why not ask me what my favorite dance moves are when I want it to rain? My acupuncturist will give me a treatment for fatigue, and when I come back a few days later she'll ask, "How has your fatigue been?" and judge the success of her last treatment based on my answer. I always try to tell her that that's impossible. There is so much that can effect my level of fatigue, and most of it is a complete mystery to me. There are some things I know. It's "cyclic", that word's often used to describe the unpredictability of CFS. I know there's a cycle around my period, I feel worse before it and better after, but there's a whole other mysterious cycle besides that. Something on a much grander and more complex scale. But what controls it? I have no idea. Or is it actually lots of little cycles all going on independent of each other? It's like trying to calculate the orbits of all the planets around the sun without calculus.
Last year when I was reading The Canon, "a whirligig tour of the Beautiful Basics of Science", I was surprised to find a discussion of alternative medicine in the section on probability. It's quite interesting:
John Allen Paulos proposes that regression to the mean could explain the legendary Sports Illustrated jinx: the long-standing observation that quite often, after an athlete appears on the cover of Sports Illustrated, that person goes into decline, fumbling the ball, botching the serve, assaulting the fans. Such unstellar turns could result from the pressures of fame, or a superstition subsumed into self-fulfulling prophecy but Paulos thinks otherwise. "When do you appear on the cover of Sports Illustrated? When you've done extraordinarily well for a period of time and are at the top of your game," he said. "By implication, you're not going to be able to maintain your outlier status for very much longer." You are going to start regressing, however slightly, back toward the mean streets of the mean.
The same might be said for many a miracle cure in the annals of alternative medicine. People often resort to alternative therapies when they have been ill for some time, and have failed to find relief in a mainstream medicine chest. They are at their wits' end, desperate for relief. A friend recommends bee pollen, or shark cartilage, or powdered bear carbuncle, and they decide to give it swallow. A week later, they're largely healed; after two, enzealed. Why didn't their physician recommend bear carbuncle in the first place? Was it because the pharmaceutical industry can't patent or profit from it and so hasn't distributed educational literature and free samples? Or was the doctor too narrow-minded to consider a therapy that looks like the sort of thing you can order through the back pages of the Utne Reader? Perhaps. Or perhaps the cure had nothing to do with the ingested novelty item, and instead represented another instance of regression to the mean. After many weeks precariously poised on the outlier tail of illness, people slip back into the comfortable lap of health, the physiological norm that our immune system grants us most of the time and that we take for granted until it is gone.
Of course with CFS, the comfortable lap of health is gone, but I still keep adjusting to new means, or baselines, each slightly lower than the last.
This phenomenon is why, when it comes to cause and effect with this disease, I've come only to trust measurements in the extremely short or long term. If I have nausea for six months, I take a pill, an anti-fungal, and immediately feel a change that slowly progresses, then I will attribute it to that pill. (A gastroenterologist who did not believe a fungal infection could possibly be causing my symptoms said it must have been a coincidence. It looked like it was hard for him to say.) If I do an exercise test and feel poisoned the next day, I might feel safe in attributing the poisoned feeling to post-exertional malaise. As for the really long term, it's useful for showing how I am progressing, (or not progressing). How I feel now compared to how I felt a month ago doesn't tell me nearly as much as how I feel now compared to how I felt a year ago. It's the time I'm logging here, the weeks and months, that don't really matter. They are diagnostically useless. Still I have to live in them.
That said, it was a great relief to get this e-mail from Dr. Cheney's assistant on Monday:
Per Dr. Cheney:
1. Protease can cause nausea. Discontinue it.
2. Use Wormwood only. Swish and spit. (meaning don't take the artesunate)
3. Hold Kefir for now.
4. Try Diflucan 200mg per day for 10 days and see if it helps.
5. Be careful with your diet.
6. Have blood work done. (We will send script.)
7. Schedule phone call after blood work results are in.
Yes! A plan! With numbers! And bloodwork! Is that shimmering I see just over the next hill the Glimmer of Control?
I'm a little uncomfortable stopping protease, since it is supposed to help with pancreatic enzymes, which I am low on. And I'm not excited about stopping the artesunate since I'm taking it to kill pathogens, but...if it's hard on the stomach then fine. I took my first diflucan, the anti-fungal that helped last time, this morning, but I'm not really hopeful. I haven't gotten into it here, but this 2010 nausea is a little different than 2008's.
Anyway, after a week spent in agony, and a weekend spent in bed, these last few days the nausea has been a lot more tolerable. Is it because I stopped the kefir? Is it because I stopped the protease? Or was it something else? A little drama inside me, mysterious, of completely unknown and unfathomable etiology, beginning, climaxing, and fading away?
I have no idea.