Still have the nausea. Reminded of someone who knows my pain:
(Guiseppe Zangara let's out a wail of agony)
John Wilkes Booth: You know you really ought to do something about that stomach.
Zangara (heavy Italian accent): (enraged) I do everything about the stomach!
Booth: (still calm) Oh yes?
Zangara: I give up wine. No good! I give up smokes. No good! I quit my work. No good! I move Miami. No good! I TAKE APPENDIX OUT! No good! Nothing no good! Nothing! Nothing! Nothing!
Booth: Have you considered shooting Franklin Roosevelt?
Zangara: (suddenly hopeful) You think that help?
Booth: It couldn't hurt...
This is the dialogue leading up to the song "How I Saved Roosevelt" on the Assassins soundtrack, a Sondhiem musical where famous assassins get together to party and they each have their own ballad. Well, something like that. I've never seen it but I have the soundtrack. This song's been in my head a lot lately because Zangara laments throughout it "the sickness in his stomach" in a bouncy Italian way that's quite catchy. Maybe on some level it lets me conflate unbearable nausea with a lively Italian wedding party.
Based on the song, I got the idea Zangara tried to kill Roosevelt because he was driven mad by nausea and wanted to take his revenge on the world. I sympathized. When I first heard the song last year I wanted to know more about his plight, but his wikipedia article was just a stub and made no mention of his stomach. The proper fate for an assassin perhaps. However, I just looked him up again and I'm happy to see his page has been thoroughly updated:
Zangara, a poorly educated bricklayer, suffered severe pain in his abdomen, later attributed to adhesions of the gall bladder. These were later cited as a cause for his increasing mental delusions. It became increasingly difficult for him to work due to both his physical and mental conditions, and in his fevered mind came to believe that the President of the United States was supernaturally responsible for causing his pain.
He missed Roosevelt, but killed the mayor of Chicago and was executed by electric chair. Last night, while in the throes of my after dinner nausea, I imagined the path of my future, laid with the same doomed bricks of Guiseppe Zangara's. But my appointment with my gastroenterologist this morning has actually left me with a reason for hope. The reason?
First of all, let me say that I've mentioned this gastroenterologist before, unenthusiastically. Our first two appointments left me unimpressed. His website was lackluster, and he just wasn't communicating very well. He had me wearing a 24 hour Holter monitor but was reluctant to explain why, and the carafate he prescribed for gastritis wasn't helping any. I'd gotten his name from Dr. Cheney's GI Protocol blog, thinking at least here was a gastroenterologist who understood CFS, but after our meetings, he seemed like just another gastroenterologist. I met with him again this morning after my 9am ultrasound, the one I was supposed to have two weeks ago but slept through. (I almost slept through this one too when my iPhone alarm somehow got set to silent.)
The ultrasound results were normal, as expected. No gallstones or giant tumors. Next he wanted to discuss my Holter results. Turns out he was using it to confirm that I had dysautonomia, malfunction of the autonomic nervous system. I've never been tested but I've always assumed I had it since it's sort of standard with CFS. He showed me charts of my heart rate that showed my sympathetic and parasympathetic nervous systems were off. Specifically, my parasympathetic nervous system was not activated when I was eating. In contrast to the "fight or flight" response of the sympathetic nervous system, the parasympathetic nervous system is for when we "rest and digest", a phrase I first heard two weeks ago from my yoga teacher.
He went over my GI test results from Dr. Cheney again. He said the only abnormalities it showed were moderate dysbiosis, (which he said last time might not mean anything) low SIgA, and an equivocal result for amoeba. He'd had me do another saliva test for amoeba, which he told me came back equivocal again, and to him two equivocals equals a positive. So I have an amoeba. Well, lots of them.
The other thing he focused on that discouraged me at our first meeting was my low iron and anemia. He wanted to treat it with IV iron, but after talking with Dr. Cheney I decided against it because he was against it. He said the anemia was not causing my fatigue, and of course I agreed. The gastroenterologist brought up the IV iron again though, he said my levels were as low as he'd ever seen in anyone. Actually, despite eleven years or so of fatigue, the anemia has only been going on a little over a year. I know because I was tested for it over and over whenever I told a doctor I had fatigue. "Do you know what the amoeba eats?" he asked me. "Red blood cells" (anemia is marked by a deficiency of red blood cells) "You'd have to have had the amoeba a long time to get this anemic."
Maybe he could see that this still wasn't making much of an impression on me, so he kept talking. "A lot of doctors think you have to go to India or something to get an amoeba like this, but it's not true." He went on about NAFTA and cross-contamination. It was then I realized that if I had this amoeba, then I had gotten it from produce. Suddenly it all made sense. I told him how I used to subsist mainly on Ramen Noodles and Stouffer's French Bread Pizza, but in 2008 I gave up processed foods and started eating a big bowl of raw vegetables every day. Six months later the nausea started. "There you go," he said.
My mother had been concerned from the beginning about me eating so many raw vegetables, her argument being that we cook food to kill bacteria so we don't get sick from things like salmonella. This argument was always brought up in all the new raw food cook books I was buying, and also quickly dismissed because optimal nutrition and enzymes were more important to our health than killing all the bugs. Maybe on the Oregon Trail dysentery was a major problem, but modern diseases were caused by too much processed food and not enough fresh produce. I took the raw foodist's side over my mother's because I really felt better after I changed my diet. Maybe not significantly better, not noticeably. I loved eating fresh raw vegetables every day.
So now I'm a little scared. Should I never eat uncooked vegetables again to ensure against contracting another amoeba? No, but I am going to start washing my produce better. I know that's not a guaranteed way to get rid of bacteria but sometimes I don't even wash them at all, such is my faith in the pureness of vegetables. So OK Mom, you win. You will never shriek and grow faint upon seeing me start to chop an un-scrubbed zucchini again. I've also been buying more of my produce at farmer's markets, so I know the blended avocado I'll be eating today wasn't shipped here from Chile, something they're actually boasting on the Albertson's commercials.
So what does one do about an amoeba? To paraphrase my doctor, we are nuking it with a two week course of antibiotics. At first I was reluctant, because when this all started I tried a lot of antibiotics, including Flagyl which is supposed to be the strongest and they didn't make any difference. I'm also reluctant to take antibiotics in general, but I consider this an acute situation, an emergency. I will be taking Alinia aka nitazoxanide, a drug that, according to my doctor, was made legal only recently in the US because of 9/11 and that it is the only drug that works against bio-terrorism agents. He also said the Flagyl people had been working hard to keep it out of the country. "Flagyl, he said, "will work against the amoeba 50-70% of the time. Alinia works 100% of the time" He also said it's not new, they've been using it in Europe 10 or 12 years and he himself has been using it for almost as long in his own practice and has published about it. I'm having flashbacks to the lyme disease doctors, but I think this is different. When this is done I can take another saliva test that will come back saying "negative" instead of "equivocal."
During the end of my visit with Dr. Cheney, he said something like he thought that the weakest part of his plan was the GI protocol. That when people don't get better it's because of issues in the gut. That his colleagues say he should be more aggressive with antibiotics and they might be right, but to him it seemed that it tends to make things worse. It was something like that he said. I was with him then, no antibiotics. But now I figure, what the hell, one last shot.
So if everything goes according to plan, I am starting this über-antiobiotic tomorrow. I'm still not going to take probiotics because Dr. Cheney says they're bad for CFS, but I'll make sure to keep drinking coconut kefir every day to try and minimize further dysbiosis. I really hope my hunch is right, that this amoeba is there and that these meds will kill it and that it will help my digestion. I'm not expecting any miracles, the Alinia won't kill the XMRV, but this really makes sense to me. If I can beat this amoeba, maybe, just maybe, my health can go back to how it was before the digestion trouble. I was still sick, I still had CFS, but I wasn't as bad. I'd say now I'm about a 30 to 40 on Dr. Bell's disability scale, and before the nausea, I was at least a 60. The post-exertional malaise would catch up with me and kept me out of school, but I was still able to shop for clothes when necessary and was even applying for part time jobs.
I know I could very well be getting my hopes up for no reason, but I can't help it, they're up.