Wednesday, May 25, 2016

How I Turned Up Missing

San Francisco was my destination in 1992, now it's the site of one of many May 25 protests around the world about ME/CFS, and the "millions missing," of which I am one. This May is also my 24th anniversary of getting sick, coinciding with my 25th Oberlin College reunion.

In May of 1992, I was waiting around for Oberlin Commencement (I had graduated officially in December of '91) and I had suddenly contracted the ME/CFS "flu-like illness" that harkens the onset of the disease, though I had experienced what is known as "prodrome" (early, shadowy, pre-illness symptoms) in the years before, and in fact almost dropped out of Oberlin and stayed around the Bay Area in the Fall of 1998, when my body seemed to be saying to me stay but I didn't listen.

But let me backtrack to the "prodrome" which -- if research would help us -- could become useful foreshadowing for patients and doctors: I had left Oberlin for a semester off in the Fall of 1988, after only one year of college, because of a lot of weird symptoms including -- most alarmingly and shamefully -- the sudden inability my freshman year to read and comprehend books much of the time, which in a college like Oberlin is a massive liability and something I had to conceal. I had been one of three Valedictorians of my high school class of '87 (over 400 people), so to lose an ability like reading was shocking to a facile brain. I remember sitting in someone's room at Barrows Dorm while a turntable spun aimlessly around -- I think it was actually playing Don McLean's American Pie -- and as I stared at it someone in the room said, "Peggy never has to read for her classes," and I just thought "if only you knew!" I wasn't choosing anything: I was coming close to failing at something I'd always been good at.

My grades were actually nosediving. I kept trying to read about Stalin's great purges for Soviet Politics (I had taken classes that first year not offered in my public high school, like that and an awesome African American History class -- but I was even screwing up my "easy" art classes) and the words literally seemed to snake around the page, practically popping like bubbles in the margins in a hallucinatory fashion, and not until 2001 did I read about this exact visual symptom via an article on "Visual Dysfunction in CFS" profiling ophalmologist William Padula. "Persons with CFS have in essence suffered a neurological event that effects their vision similar to traumatic brain injury," said Padula, describing what he calls "post-traumatic vision syndrome (PTVS)," which includes, "intermittent blurry vision, perceived movement in print and stationary objects, headaches, light sensitivity and seeing words and print run together." If I hadn't dramatically abandoned my oil paintings in the art studio that year, like the autumnal painting I kept making darker and darker like a narrowing visual field, or the black and umber painting of a man facing away in a chair, not making eye contact -- they might have been an interesting study in pathogen-induced brain injury.

I had planned to major in art, but I also had found myself getting toxed out in the printmaking lab my freshman year (the professor who taught that class later died pretty young of cancer: that class was held in a poorly-ventilated basement, where he also had office hours). I would go into class, and -- as with the turntable -- just sort of stare at things, as if seized by a long-running absence seizure, until my professor literally told me that I should drop the class. I did drop his class, and then dropped out of Oberlin for a semester to run off to Berkeley and regroup. I dropped art altogether.

A humble and generous friend of my Mom's had fortuitously inherited a bunch of money, bought a house in the lush and gorgeous Berkeley hills, and she and her partner rented my friend and I the basement bedroom and kitchenette for cheap. I bought a scooter to use for those 6 months that I could fill up with gas for 30 cents, and we both got heavily into lattes and Cafe Intermezzo salads. I rode down to the Cheese Board to pick up bread, or to Peets coffee or the Berkeley Bowl. But I was strangely exhausted, sleeping way more than usual (not "depressed," actually really happy in Berkeley -- but pre-exertional-intolerant) while my friend hiked vertical step-trails up into the Berkeley hills and I just couldn't do it, yet I was able to wait tables for long and grueling shifts that resulted in me being passed by semis on an overpass out of Emeryville, the whoosh of life and death blowing past my vulnerable scooter. I seemed to be on the mend though, and taking a semester off had been good for me.

During those months, I visited UC Santa Cruz -- I'd been there once before -- and thought about transferring. I was still on the cusp of that decision when, one day, I was sitting on the steps of a building at UC Berkeley and I took this weirdly extreme tumble down the stairs that seemingly broke my toe. It swelled up to about three times its normal size, and I was in so much pain I considered canceling my flight home (in what would become a theme, I had no health insurance then, so didn't go to a doctor). I felt like something was telling me to just rest it off, just wait -- as something was still clearly wrong with my body. I had never had bad balance like that. But instead I taped my toes together, white-knuckled the flight (I was never one to go to doctors anyway, a family trait from my mom's stoic farming side), and pursued my goal of getting into Oberlin's competitive Creative Writing major, where I could read short stories and poems instead of longer works and the classes were small and selective like an MFA, and I also staggered my way through French feminist literary theory: its body-focused text became relatable, as did poetry with its stop motion animation of speech that mimicked a sputtering brain. I got highly physically functional again over the next few years, my grades were up (though it took a while to catch up on credits from a low first-year course load) and though never back to my old cognitive self I got good at faking it via creativity and faddish deconstructionism that nicely mirrored my minefield brain. In that era of early identity politics, having a scattered and shattered identity and "redefining labels" held a certain cache, no matter what the source. I began doing more and more cycling through the Oberlin countryside, focusing on body over brain. Nobody would have noticed those subclinical prodrome symptoms since I was able to mask them really well.

Oberlin had a very loose core curriculum, though it's a pressure cooker of a school wrapped up in an activist and artsy exterior. Would it surprise people outside of Oberlin though to learn I took "bike repair" for credit, even audited a student-taught erotic writing class the semester after I graduated? I graduated in December of 1991, resolving to walk at commencement in May of '92 and plan out the future with my friends, then nearly at the top of my game again. Nearly twenty-five years later, I have literally missed every single reunion -- high school and college -- along with every single wedding, and every single commitment ceremony, and every single funeral -- that has happened during these last 24 years (though I managed to listen to my Grandma's funeral on a speaker phone, crying in solitude in a small room). I have been stranded on the East Coast for over 17 years, in literal exile, too ill to travel home again to Illinois (my family pretends this is a choice), or to pass through Oberlin on the way. That's how disabling ME/CFS is. It's exactly what Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University, said when he described it in those early years as "[CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades." It is shockingly disabling, and while I can't name the exact hour I got sick with the ME/CFS sudden-onset "flu," I can name the weeks: right before Oberlin commencement of 1992.

As Cort Johnson recently described on his blog about "The 25% Disease: Is Chronic Fatigue Syndrome (ME/CFS) Unique In How Many People Are Homebound?," ME/CFS -- especially for the lowest 25 percent of which I am one -- fells people more dramatically and rapidly than any other known disease of the under-65 set. People with many other illnesses can still do things -- work, go to graduate school, travel -- with enough accommodation and support, and those of us with ME/CFS most often simply can't, that's where the line is drawn. "One study, found only an astonishingly low 13% were employed full-time," wrote Cort. He continued, "It was no surprise to see that symptom severity/fatigue/quality of life etc. were all significantly worse in the housebound patients. Or that the housebound have a greater propensity to relapse after minor exertion and are more socially isolated." Perhaps the most shocking statistic, relating to the unique symptom of post-exertional malaise, or "PEM" (exercise intolerance) in ME/CFS, is this one: "The almost complete withdrawal from work in all patients was staggering. Even the non-housebound patients spent only an average number of 8 hours over the past month on non-household work. Remarkably, less than 10% of the patients surveyed were employed full-time and less than 20% were employed part-time." This illness is a life of the tiniest snapshots of participation, followed by cavernous, inconceivably limited months and years. Like any severe ME/CFS patient, I was only able to stagger through some part-time work (full-time of 35 hours a week, with frequent sick days, for a period of only 6 months or so) for 2.5 years after getting sick, and I have been on disability since then. The main job I kept during that "working" period was at a psychotherapy center where I was the office manager and grant writer, and where I stealthily lay down on therapy couches for the 50-minute hours when my co-workers were in session, since sitting up all day was impossible.

Commencement of 1992 was surreal. I have no idea who the speaker was. I sat near this guy I had dated a year earlier, who was telling me all about his plans to go to Alaska. I had sea legs in a landlocked space. I felt nauseous, had vertigo. My heart was rocketing out of my chest. I was just trying to focus on how I'd get to the podium to get my degree. My plan to immediately depart on a cross-country drive was daunting, but there was no way out. My student health insurance had ended in December of 1991 with my official graduation. Even now, I look back and think what a miracle it is that I graduated at all. I know of other ME/CFS patients who didn't make it all the way through college because of this disease. The ME/CFS "flu" -- that Alice in Wonderland meningitis-like disease that is nothing like a "flu" and involves tumbling places so unfamiliar there are suddenly no words to describe the symptoms -- had waited on me. In January of 1992, my partner had spun out on the ice with my friend in the front seat and me in the back, all of us driving head-first into a guard rail over an overpass, me flung forward as the only one without a seatbelt. Afterward, standing dazed in a parking lot nearby, contemplating that we'd almost died, my head felt like it was packed with cotton and I just couldn't think. Over the next few months, I had worsening vertigo and other symptoms. But it wasn't until that May of '92 that the ME/CFS "flu" hit -- and it was a night-and-day collapse, right then in the moment of watching my friends disperse scattershot around the country. That same partner, that same friend, were the people I was about to drive cross-country with.

The morning after commencement, one of my Oberlin housemates was putting my bike rack on her car. She was one of two housemates I had from Western Mass., where I'd later end up. "Hey, that's my bike rack, I need it!" I yelled. "I know," she said angrily, in what seemed like elite rage suddenly separating the haves and not-quite-haves at Oberlin again as we departed, and continued to load her bike onto it. I don't know what that bizarre gesture was as I thought we were friends, I just remember it, as if it was the very moment the world turned hostile and I was too sick to fight the distorted, eye-toothed maw that was chomping down as I left that bucolic town for the great outside. A few months earlier, I'd been sitting with two friends on the lawn of the lush, green square that centers Oberlin, talking about how we'd like to bicycle through the Southwest together after graduation. Instead, I was going to drive it, but not until I literally wrenched my bike rack from the hands of someone who had a future. I still have that bike rack, and the same Trek touring bike -- artifacts from my able-bodied life I just can't let go of, since they symbolize hope to me of a cure that still hasn't come. By the time I got to San Francisco, any attempt to ride my bike resulted in doubled-over nausea that took hours to relent, or searing chest pains that likely indicated the cardiomyopathy Dr. Martin Lerner later found in most ME/CFS patients via heart tissue biopsies.

My Berkeley friend -- also on that cross-country trip to San Francisco -- later wrote in a letter for my disability hearing, "When I first met Peggy in the Fall of 1987, I was struck by her warmth and energy. She was very physically active, often leaving me in the dust while biking, swimming or doing aerobics. She was also extremely sharp in academics, while fostering her creativity through the arts. She had an uncanny ability to read over a page of information and instantly memorize it. . . . She also never seemed to get any of the myriad of cold and flus that wiped out the rest of campus." This friend would soon have the closest lens to my collapse. "Peggy's energy level started to diminish noticeably in the Spring of 1992," she wrote. "She often felt weak, and faint, and had begun to complain of severe neck pain a couple of months after a car accident that she, another friend, and I had been in."

The three of us went East first right after commencement -- to see their families, to visit my friend at Brown -- and I lay on her floor in Providence, completely allergic suddenly to her pet bunny, sneezing and miserable, as I think I remember her telling me I should wait to go on. I didn't know how to do that. My traveling companions got there to meet me, and off we caravaned. We stopped in Illinois to see my family -- again, a checkpoint, I could have just stayed but didn't. My travel companions loved Normal, Illinois (my unassumingly-named hometown) -- they had both seen it before, found my family both quaint and lively and eccentric -- and my Dad bought us two old-time CB radios from Radio Shack so we could communicate between the cars, a worried look on his face. My divorced Dad wasn't really worried enough though, not enough to say "I'll take care of you" or something. There was no promise from him, no culture that supported children returning to live with their parents after college (for a Valedictorian, it probably would have been unheard of). That Calvinist, Protestant-work-ethic culture was pushing me onward. I smiled through our departure. We divided into our two cars, rotating driving shifts with one person resting, our CBs blaring, making up silly handles along the way.

We planned to parallel old Route 66, and take I-40 through the Southwest. We rolled out the huge atlases at every stop. We stayed at cheap KOA "Kabins" to glamp our way across the country, but by the time we got to Amarillo, my meningitis-like symptoms were off the charts, and it marked a period of extensions and trip delays as my partner and friend grew increasingly worried -- yet at our young age, with my prior health as they knew it, nobody expected my "flu" to last. I had, notably, the classic symptoms of encephalitis or meningitis though, not really a "flu" and it felt like nothing I had experience before, nothing I had language for. As they hiked a canyon, I just recall how bright and insanely piercing the light got, how close to blacking out I felt, how dehydrated I seemed despite hydration, how much my neck was killing me. They left me on a rock, splayed, while they hiked. This would become a theme for the rest of the trip. I had called my Dad from Amarillo, and he offered to pay for a hotel room for a night or two -- I think it ended up being two -- while I tried to feel better. He never seemed able to link these glimmers of insight together, to see the gestalt of how sick and disabled I already was from that moment on. My friends saw it though. In that letter for disability penned in January of 1996, my friend wrote, "Peggy was fairly incapacitated throughout the trip from a combination of headaches, nausea, and flu-like symptoms.. . . At the time. . .we. . . encouraged her to push herself to keep up. At some point during the trip it became clear to me that she wasn't just being lazy or tired, but that she was physically unable to keep up and was already straining herself in a dangerous way. By the end of the trip, she wasn't even attempting to go on hikes with us, but would rest at the bottom of the mountain."

I remembered the muddied graywater of rest stop toilets, something I'd never seen before but noticed because of the need to rest my forehead on a toilet bowl, nauseous. Rolling into New Mexico, the clouds were a high hat on one side and we drove back, back into a state park that seemed uninhabited, until we arrived at the edge of a giant, pristine lake. At this point, storm clouds were just rolling in, touching the water, and we waded in quickly before the sky erupted. The storm was so astonishingly beautiful and yet, the building pressure in my skull right before that had been so palpable, the contrast of hot and cold as the goosebumps stood up on my legs in that perfect water.

In Albuquerque, staying with someone my friend knew, I was suddenly allergic to everything and the light sensitivity was worsening. My throat was raw with pain. One day they all went to a pueblo and I lay on a futon covered by a tapestry, taking an echinacea tincture the kind host had given me, though it didn't help even marginally. It was, however, a sure sign of how transient we all thought my illness would be. Still, we had a serious conversation at that point about whether we should just stay in Albuquerque and settle there, instead of moving to the Bay Area. But we continued on, and somewhere near Jerome, Arizona -- an old mining-turned-artist town high up in the mountains -- I was pretty sure I was going to drive off a cliff because I just could not see past the glare any more and was practically steering on faith. At some point, there was a feeling of deja vu when the three of us were in a car together, temporarily, driving away from our latest campground, when my lover had what's known as "brake fade" on the mountain and her brakes went out and she steered us precipitously to the bottom. I remember a gas station that seemed nearly swallowed up by the surrounding desert, a man with a sombrero outside, and how I just didn't know how to keep going.

We drove through the LA area where we stayed with my sister's boyfriend, up the coast to Berkeley, where we ended up in the same house my friend and I had stayed in before. We spent a week there, apartment-hunting in San Francisco which proved harder than expected, and finally settled in the Inner Sunset. I was devastatingly ill, really too sick to work even a day at that point, and yet I managed to start a job at a health food store in the heart of the Castro, where gay men were in June of 1992 dying in droves. AIDS deaths in San Francisco in fact peaked during my years there, and AIDS was so omnipresent in the Bay Area right then there really wasn't room for another emerging illness (by the end of my time in San Francisco, I lived on Castro Street, just over the hill in Noe Valley). According to a recent article in the San Francisco Chronicle, in 1981, nine people died of AIDS in San Francisco: by 1992 when I arrived, 30 people were dying each week. In that health food store where HIV-positive men would come in waving special discount cards to buy immune system supplements and weight gain powder, I was too sick to do my job properly and only lasted a couple of months, though I tried to hide this reality from even my HIV-positive boss, the one who had campily exclaimed "you could run for President too!" when interviewing me and seeing I was from Normal, Illinois, since Bill Clinton was currently running for President and pushing his Hope, Arkansas hometown angle in a time of plague-ridden despair.

My friend later wrote in that letter, "it's clear to me that Peggy was still trying to deny the severity of her illness, she would continue to try and keep up, going on bike rides or hikes but she was just not able to do it, experiencing shortness of breath and heart palpitations. She took to sleeping more, needing to lie down at times throughout the day, and taking frequent rest periods when out on walks. She often felt nausea, and weak and disoriented. Her mental sharpness seemed to be dulled as well. For as long as I had known her Peggy was always reading challenging books about critical theory and a host of other topics, would actively engage in heated discussions, and was always impassioned by her writing, but this interest and level of intensity was also decreasing." She added, "Peggy found it difficult to socialize at this time because of her growing list of disabling symptoms, and I started to see less of her. It was often too exhausting for her to get in her car and drive the fifteen minutes to my house."

These last lines are particularly poignant, as I became "the missing" so rapidly then, simply losing my ability to connect to people as any social commerce became so exhausting and a fifteen minute trip was suddenly like a cross-country drive. The more I disappeared due to necessity, the less people witnessed how gravely ill I was. And things, from there, simply got worse. That friend noted her own lack of understanding, kindly, in her letter -- but most of my friendships just quietly popped like bubbles in the margins. "Hindsight is of course always enlightening," she wrote. "And I wish I could say I was supportive of Peggy during this time as she struggled with the growing awareness of the severity of her illness, but I wasn't. Being a young, able-bodied person, . . .it was incomprehensible to me that she was actually sick and physically incapable of being as active as I was. She often pretended or down-played her limitations, or made excuses as to why she couldn't socialize."

In 2010, a family member ranted to a Bay Area friend visiting me in Western Massachusetts, "Peggy was NOT disabled in San Francisco!" My family remains in denial about just how rapidly I was stolen away there, lost to retro communiques over Radio Shack CB radios that dissipated into the desert as I desperately tried to mask my symptoms and still could for awhile. Of course, this kind of familial response was typical of the families of the AIDS patients I saw in San Francisco who wasted so rapidly into bones. A recent article in Out, that profiled a luminous woman named Ruth Cocker Burks who cared for hundreds of men dying of AIDS in Arkansas in those lost years of the '80s and '90s stated, "Burks estimates she worked with more than 1,000 people dying of AIDS over the years. Of those, she said, only a handful of families didn’t turn their backs on their loved ones." My friend came to terms of the reality that I couldn't even travel across San Francisco over twenty years ago without significant relapse, a harbinger of the longer and greater illness crashes to come that would soon become exponentially disabling and permanent. She wrote, "I took it as a personal insult that she couldn't push herself to come and visit with me, when really she just simply couldn't."

My friend's words from twenty years ago are still so haunting, given what I've lost since then. Sudden illnesses are often described as pathogenic "insults," but mine was subtly reframed by others including often by my own family as a personal affront (one of their favorite repeated lines to me in the past decade was "I believe you believe you can't move" about my inability to get back to Illinois) just as AIDS was in its early years without cultural understanding when AIDS patients, like ME/CFS patients still to this day, were bullied over so-called "lifestyle choices" and treated as pariahs for their "choices" or "beliefs" rather than seen as victims of a horrific plague. This language of lifestyle still permeates the research and government response to ME/CFS, as patients organize protests full of empty shoes to connote those of us too weak to ever consider protesting. The damage for my illness remains swept into the desert sands that became scalding mirrors in my infected optic nerves, my former life taking on a mirage-like quality. I revisit the Southwest landscape and San Franscisco in my mind in a flashback format -- though I'm too sick to go back to either. I have recurring dreams of suddenly parking my Airstream in a San Francisco driveway, surprising everyone with the end of an epidemic. These images haunt me, from those places where I made those final, critical choices that likely irrevocably shaped my future -- and in them, I'm trying to hide how sick I am, to change the future. In What Her Body Thought, Susan Griffin wrote, "What you are able to say or even know about your own experience depends in some mysterious manner on the attitude of the listener. Truth comes into being by call and response. The curiosity of the listener is like a magnet, pulling testimony from an inarticulate obscurity." (p. 285). I once could have just stayed put and tried to heal my brain, but I didn't do so because I had no words for my surreal descent, and that "attitude of the listener" morphed into practical lack of treatments and stable care systems going on decades now.

Without curiosity, and with a fixed attitude about "lifestyle" or "choices" that insists on metaphor versus clinical research, the truth of an illness can seemingly stay suspended nearly indefinitely in that "inarticulate obscurity" that ME/CFS remains in to this day. Just this year, Dr. Brian Walitt was named lead clinical investigator for NIH’s intramural study of post-infectious ME/CFS. Walitt has openly called ME/CFS a somatoform illness and fibromyalgia a normal life experience instead of a distinct medical entity, making bizarre hypnotic-spiral statements like "“First let me affirm by saying that chronic fatigue syndrome/myalgic encephalomyelitis are a biological disorder. Research has shown that in every system of the body that has been investigated that there have been abnormalities when compared to healthy volunteers. If chronic fatigue syndrome/myalgic encephalomyelitis is all in your head, it’s only because your head is part of your body.”

As Jeannette K. Burmeister points out on the Thoughts About M.E. blog, "Walitt seems to believe that the abnormalities are being created by the patients’ own thoughts and emotions due to some kind of biochemical mechanism.. . . Saying that one doesn’t believe that symptoms are all in a patient’s head is not irreconcilable with believing that the patient suffers from a somatoform disorder." My family's construct of "We believe you believe you can't __________________ " (fill in the blank with whatever symptom you want to minimize) is pretty much taken right from Walitt's playbook of how to pretend to "believe in" the symptoms while reinforcing it's all in someone's head (it's a line much like the ex-gay ministries "love the sinner, hate the sin" once inflicted on abandoned gay men dying of AIDS). I can't believe people are still brainwashed by these hateful ideologies, but they are. Ruth Coker Burks wants to do a monument for the men with AIDS she helped, reading simply, "they knew they would be remembered, loved, and taken care of." Imagine knowing those things as an ME/CFS patient. This is all that patients, without FDA-approved treatments and viable care more than a quarter of a century into this other devastating epidemic, are asking for on this day of protest.

Friday, November 12, 2010


As a follow-up for my call to action (see last post) please check out The Exit Project! Do you want to do simple activism right now that you can do from your home or bed (or in the streets)? Then submit to The Groundswell Campaign (guidelines below) -- and please volunteer to help by emailing via The Exit Project's website:

Let's make it global -- public actions are encouraged too!


An action of The Exit Project (Eradicate XMRV Infection Today).

Who: Many ME/CFS/XMRV patients wonder what they can do to participate in activism (especially those who are homebound or bedbound). If you’re got a camera (or video camera), and the ability to write a paragraph, you can do this project without much effort, and become part of a quilt of images to engender a groundswell of support for ME/CFS/XMRV. We invite all patients who are “grounded” by ME/CFS/XMRV (in any way) and who want to create a groundswell of support and awareness. If you're able to take it to the streets and make a more public display, even better! The most important thing is to join in.

Why: Few people really understand how wretched this illness can get, and outsiders rarely see what homebound, bedridden, or very ill patients deal with. What succeeded in AIDS activism was depicting AIDS in all of its brutality. Until people see what it really means to be “grounded” for months, years, decades, they simply don’t have a reason to care or get involved. This is what The Groundswell Campaign is about. We want to create a groundswell of support and show what grounded patients are capable of! We also want to show how many human lives are "X"d out by this illness (and do something to represent the fact that XMRV has infiltrated the population at alarming rates -- but you don't need to be XMRV-positive to submit).

What to Submit: Take pictures (or video) of yourself in a horizontal position: lying flat, curled up in the fetal position, slumped in a bathtub, on a sidewalk in front of the FDA, on the floor of a subway train, sprawled across seats in a train station, on your front porch, as part of a public demonstration in which you read The Exit Project's list of demands and lie in front of the capital on top of a big chalk "X," etc. The main thing is that you’re not upright. If you can get outdoors, especially in a public place, feel free to lie in the middle of a crowd at the mall, on the grass, in the water, whatever works for you – or maybe on the edge of an outdoor wedding or event, where you are clearly an outsider, grounded, and viewers can see people living their lives in the distance. You can take the pic on a hospital gurney or in front of a state capital building. It is fine to include others in the picture (your family members, partner, strangers, etc.) who can be upright. Each picture should include a visible letter “X” for XMRV, whether you have XMRV or not – you can put it on your clothes, write it on your skin, make it out of pill bottles, find a naturally occurring X somewhere in your house, draw it in the sand, etc. This will help reinforce the iconography of our campaign so it is easily recognizable, and reinforce the idea that anyone can get X’d out by this illness, and anyone can get XMRV. The more pictures we can get with visible landmarks, the better (for example, if you can take it near a political landmark or in front of a hospital or blood bank, or by a well-known tourist spot where you live). Once you take your pictures, choose your favorite shot, to go with your written paragraph. Follow the instructions below to write your paragraph. You can also submit a short video using the same instructions, and incorporating the X, in which someone (you or another person) is reading the text of your paragraph. It’s that simple! If you want to do this with a group of people, you can each write a paragraph, and post a picture with each paragraph or one picture for the whole group.

What to Do Next: After you have taken your pic or made your short video, write a paragraph on this topic: How has your life been grounded by ME/CFS (and XMRV if applicable)? What were you able to do before you got sick that you can’t do now? What is one comment you'd like to make about your picture and what it represents? What would a groundswell of support mean for you? Or, if you do better working free form, simply produce a paragraph about what it means to be grounded, what your picture signifies to you, and what you would ask of a groundswell of support. Creativity is encouraged! But please keep it short and sweet -- this is for immediate impact, not a medical history! Let the pictures tell most of the story and imagine hundreds of them lined up, creating a groundswell. Ask your friends to do it too. We need bodies!

If you are doing a video, read your paragraph or overlay the text onto the video.

Just don't forget the two rules: have something visible in the shape of an X, and be horizontal.

Where to Send: Post any videos on YouTube, then send videos or photos with text to:

and also to Anthony Fauci at:
And Kathleen Sebelius at:

Also, if you can include more names, please send to any or all of these people as well:

Margaret Hamburg at:
Howard K. Koh, M.D.:
Director Francis Collins:

Friday, October 08, 2010

The best offense is a good offense: what we need to learn from AIDS

According to the CFS Untied blog, the CFIDS Association of America just proudly touted an “advocacy” style for ME/CFS that consists of “using one’s inside voice”:

The president of the CFIDS Association of America said that she heard the announcer on National Public Radio state that "we use our inside voices to bring you the news." She likened that to the "inside voice" of the CAA as they pursue their activities of stimulating research, reporting on the success of their grantees, and sharing information about upcoming events and important publications.

A quarter of a decade into the crippling epidemic of ME/CFS, we have yet to learn what AIDS activists taught us about inside voices or, more generally, about interiority from the perspective of men who had come out of the closet only to be faced with social ostracism and Kaposi’s sarcoma. Those activists didn’t use inside voices unless they were watching a live performance of Angels in America. They shouted, marched, and threw blood. And this is what worked.

Because AIDS struck the gay community with such ferocity, the first line political responders to AIDS were heavily invested in the gay community. So gay culture used its own ammunition: the arts, style, radicalism, intellect, and rooted bodily awareness. This launched an activism that was uniquely queer-ified but opened its arms to all affected groups. The gay male community knew how to finger-snap back at homophobia, and took the weapon that had always been used against them -- bodily shame and blame -- and threw it against their oppressors. They reappropriated derogatory language and smear tactics, so that society could see the smallness of its bigotry -- and conversely, where they faced bigotry or stereotyping, they used it. When the New York Times ran a photo caption about the first ACT-UP action in 1987 that read “Homosexuals arrested at AIDS drug protest,” it likely helped the cause by inciting homophobia: gay men were bleeding their gay disease right there in the streets (!), and all they wanted were fast-tracked drugs (!).

When faced with homophobic religious intolerance, these groups came up with a brilliant re-wording of slogans -- like putting the phrase “right to life” over the image of a condom, until justice-seeking, open-minded religious figures joined them.

A sort of panic ensued from such ACT-Up tactics, the kind of cultural panic that emerges when any ghettoized group invades an exclusionary space. For a brief time, my guess is that the response of government AIDS officials came right out of their own homophobia: they wanted to do damage control, and quickly, to cram the gay plague back into a hidden arena. Not allowing people to be comfortable with the status quo -- in fact, forcing the discomfort of AIDS onto the American public -- was what won the war for AIDS activists.

ACT-UP realized their victory came in part from culture’s phobic response -- and they capitalized on it, brazenly, exposed it and called it out. They went into every space their queer-infused politic would be unwelcome: Wall Street, Trump Towers, Sloan-Kettering, Northwest Airlines, St. Patrick’s Cathedral, the FDA. They pulled in non-gay members of other disenfranchised groups who were being hit by AIDS and ignored, such as prisoners, IV drug users, people of color. These tactics resulted in fast-tracking of drugs, safer doses of AZT, and cost reductions of overpriced AIDS meds. They never let up on the tone of emergency.

By using an “inside voice” ME/CFS patients and activists have done nothing but reinforce the power of those keeping us down. We too have been faced with bigotry -- plenty of it -- and derogatory stereotyping. Look at this cartoon, for example -- we’ve seen similar stereotypes in the media a hundred times, and it’s a disgrace:

Patients who display appropriate entitlement or speak to the tone of emergency, such as Hillary Johnson or Dr. Jamie Deckoff-Jones, are still sometimes treated as an angry fringe.

Dr. Paul Cheney’s recent newsletter stated -- in seeming response to vocal patient Dr. Deckoff-Jones’ blog about her XMRV treatment with antiretroviral drugs -- that we (patients) should not trust anecdotal stories of treatment with such drugs, as they could be reflecting spontaneous cures. While it is true that many anecdote-reported “cures” of ME/CFS fall flat, Dr. Cheney (one of our finest) is dismissing a Harvard-educated doctor’s capacity to document the progress of herself and her daughter. Maybe it was a Harvard education that allowed Dr. Deckoff-Jones the appropriate tone of entitlement she is encouraging of other patients, when she states repeatedly that patients should have the right to make a choice about drug treatment without paternalism standing in the way. She's right, and she's an example of what one person can do.

This is not just about numbers: a lot of shit can be shaken when each participant chooses a bullhorn, a die-in, even a quilting needle instead of an “inside voice.” Here's an article about ACT-UP actions at my small college, Oberlin, when I was a student there:

Tory Dent said something profound with the title of her first book of poetry (written from the standpoint of an HIV-positive straight woman), What Silence Equals. AIDS politics had already figured out the literal meaning of silence (death), but Dent turned it into a more deeply philosophical concern. Silence equals a lot of things beyond death. There is a particular kind of silence that wends its way into the shocked dogs known as ME/CFS patients. While most of us are too disabled to do ACT-UP style activism, I have noticed that many patients also think such activism does not apply to them. “Wouldn’t it be more effective to simply hold a meeting?” a patient-activist asked me recently. I think we’ve held plenty of meetings and -- as thrilling as some of the challenging questions raised at those meetings have been -- they don’t replace the grit and gusto of ACT-UP style tactics. We have to claim our outsider status, and work with it.

Meetings miss the point entirely in most cases, as they show patients acting more healthy than they are. At 41 years old, after publishing three books, I am so cognitively impaired I resemble someone with AIDS neurocognitive dysfunction -- a reality that makes sense if one looks at Dr. Komaroff’s SPECT scans of the brains of people with ME/CFS and AIDS dementia (they look identical) -- and I have a hard time following a meeting. Plus I can't travel. I am bedridden almost all of the time. My life has been whittled down to an arrow-sharp emergency, and I’m not going to use my inside voice about it.

Many of us have been forced into solitude and extreme interiority. But there is another piece of this, the despair, and the idea that we can’t really shake up change. Maybe one had to live in that ground zero of San Francisco in the 80s or early 90s as I did to really appreciate how effective AIDS activist tactics were, and where they came from. As battle-weary as some activists were by the time I arrived in the city in 1992, AIDS was still as ubiquitous in San Francisco as coffee was about to become in Seattle. HAART had not come along yet and people were dying. There was no time to hide these realities of the flesh, and no time to be quiet.

Here’s an ad that the San Francisco AIDS Foundation took out in SF papers in 1992 and another SF AIDS Foundation poster from 1994 and: another.

This is how far even the more moderate AIDS organizations had gone, by the early 90s, beyond an “inside voice.”

And this piece by artist John Davis, from 1992, says it all about amplifying an inside voice: it depicts a nude wasting AIDS patient hiding his face from the camera.

In the Castro, the juxtaposition of life and death in the AIDS era was particularly cruel, because the men who looked so virile and green-drink-purified and gym-toned were window-shopping right alongside the men in wheelchairs with Kaposi’s sarcoma lesions and oxygen tanks. The Golden Gate bridge was constantly repainted a fiery red, and if one took a quick turn off of Castro onto Market Street, one could see the sewing machines in the windows of the Names Project (the AIDS quilt) inviting the same kind of fiery artistry against the fog -- all fog that obfuscated the bloody truth.

But even in a city where half of the gay men were then said to be HIV positive (I don’t know where that statistic came from, but heard it repeated more than once in San Francisco), the epidemic was also remarkably invisible at times. Yes, patients were wasting and dying with visible lesions, but before that they were the well-looking patients coming into the health food store where I briefly worked, flashing AIDS discount cards and buying weight gain powder. At that moment, they were not unlike a lot of ME/CFS patients, even in San Francisco.

It is not that they were not alone, and invisible, but that they spoke openly, honestly, and angrily about this truth, as described in this speech by Vito Russo in 1988: “Living with AIDS is like living through a war which is happening only for those people who happen to be in the trenches. Every time a shell explodes, you look around and you discover that you've lost more of your friends, but nobody else notices. It isn't happening to them. They're walking the streets as though we weren't living through some sort of nightmare. And only you can hear the screams of the people who are dying and their cries for help. No one else seems to be noticing.”

They made themselves visible.

The government tried to give AIDS a belittling misnomer, just as they did with “CFS,” when they called it gay-related immune deficiency (GRID). The acronym GRID seems to encode its secret purpose: to keep the gay plague cordoned off. “CFS,” in its own way, did the same thing: it created a tidy idea for a devastating, chaotic situation -- like a codependent wife trying to diffuse the alcoholic dervish she married through using his tactics of denial, minimizing, and blame.

AIDS patients responded with a savvy ability to seize what was given to them and flip the language around. If the government was going to call it a gay plague, then fine: gay men started the Gay Men’s Health Crisis which morphed into ACT-UP. They seized reductionistic language and twisted it around, with passion and anger. The world wanted to see dying gay men kept in a constrained, leper-colony-style grid: so they decided to “unleash power” and define their own crisis.

A quarter of a century into our epidemic, we still have newspapers shortening their headlines about this illness to “chronic fatigue.” This is degrading language, and we can't let it go unnoticed.

In the current flurry of articles about homophobic bullying and gay teen suicides, it’s important to consider that many of those men with AIDS had been bullied as teenagers, harassed, shamed, and beaten down (literally). Bullies use the same tactics of batterers, and of the CDC -- including “denial, minimizing, and blame” (a classic entry on the “power and control” wheel that describes patterns of domestic violence). The power of ACT-UP and other efforts of a besieged gay community came from the ability of afflicted gay men to recognize a bully and know what kind of bear they were up against. Most of them, sensing the bully was a bear who would try to shrink them down, acted big and rattled pans.

But ME/CFS patients have tended to get sucked into what domestic violence activists call the “cycle of violence,” believing the bullies’ lies that they will change -- lies like “Ampligen will be approved by the FDA soon!” and “the CDC will make a concerted effort to restore the misspent funds to further research around ME/CFS.” It’s time for the abuse cycle to stop. Lundy Bancroft wrote in his seminal book about abusers, Why Does He Do That?, “You cannot, I am sorry to say, get an abuser to work on himself by pleading, soothing, gently leading, getting friends to persuade him, or using any other nonconfrontational method. I have watched hundreds of women attempt such an approach without success. The way you can help him change is to demand that he do so, and settle for nothing less.”

The best way to end Stockholm Syndrome is to get the hell out of Stockholm, or Dodge, or the CDC’s bed.

ME/CFS activism has done far too much pleading, soothing, and gently leading. The bullies that dragged their feet around AIDS underestimated the power of gayness, expecting it to be more passive than it was. They had never been to the Castro, and had not met superhuman men who could lay hardwood floors, bench press a ridiculous amount, fuck like the ship was sinking, pick out the right paint colors, and dress to the nines. But it wasn’t just the gay men: it was artists, other queer folks, anarchists, and growing legions of sympathizers and infected parties. The AIDS movement was like a Harlem Renaissance of arts and culture exploding, and the CDC and NIH and FDA were completely unprepared. They had not really considered what would happen if gay men stopped being their hairdressers and turned their shears on FDA red tape. But this is exactly what happened.

And this was exactly the beauty of AIDS activism: it brought together hairdressers and quilters, junkies and mothers. People found creative ways to use whatever skills they had -- and ME/CFS patients can do this too, even if we can only lie still with a webcam trained on us.

We can’t believe it’s too late to start over, and have a movement that strong. We have to demand change and settle for nothing less.

One reason outsiders joined AIDS politics is that AIDS politics were radical, artistic, and cool. ME/CFS now has a retrovirus that starts with the letter X -- X like an LA punk band, X like the X Games, X like the eyes of the dead in a graphic novel -- and we have a chance to escape the hysterian-invoked stereotypes that have held us down for so long. We have to call this what it is, call it X Disease, call it XAND, and use that X like a medieval weapon.

Yes, we have been living an imposed dormancy for decades. This is our time to wake. I dare say that if Sophia Mirza’s mom can tell the story of her daughter’s death from ME/CFS when her daughter’s last months were spent in complete confinement, or if Laurel can present this testimony to the CFSAC while too ill to speak above a whisper, or if I can write this blog post after spending most of 2009 lying ten hours a day on a bathroom floor as far as I could drag myself from bed, unable to speak and in respiratory failure dying a horrible death, every patient and every family member of a patient can play a role in this struggle.

I want to see the recent email campaigns and other actions take off, but I also want to see a radical politic with a lot of new ideas that loudly speak the awful truth. I want to see patients spray-painting an X over themselves and doing living-death die-ins (Krylon H20 Latex spray paint has much lower VOCs) with signs that say “This living death is XMRV.” I want to see a tech savvy ME/CFS patient put up a virtual quilt video project, where one patient wears a green t-shirt with an X on it and another wears a red one and another wears a blue one as each of them tells a one-minute XMRV/ME/CFS story, and these screens are quilted together on one big web page.

Now AIDS has given us a road map for activism, and it has even given us Anthony Fauci, who Russo critiqued in his aforementioned speech by saying: “And we read on the front page of The New York Times last Saturday that Anthony Fauci now says that all sorts of promising drugs for treatment haven't even been tested in the last two years because he can't afford to hire the people to test them. We're supposed to be grateful that this story has appeared in the newspaper after two years. Nobody wonders why some reporter didn't dig up that story and print it 18 months ago, before Fauci got dragged before a Congressional hearing .”

It was at that moment in history that AIDS activists began screaming for drug trials -- not agreeing that they were supposed to be grateful for one damn story. It's discouraging to see ME/CFS patients get so excited about this "world class virus hunter" heading up the latest XMRV research when no drug trials are underway. If patients need something to light a fire under their activism, I suggest looking at the text of this ACT-UP flyer for their first organized action March 24, 1987 on Wall Street, New York City -- it mentions Ampligen. Yes, that’s right, Ampligen -- the drug found to have efficacy against XMRV that ME/CFS patients can't get except through limited cost-recovery trials -- the drug kept from ME/CFS patients by FDA foot-dragging while no other drugs have been approved by the FDA for this disabling and potentially contagious retrovirus.

So how well have our tactics worked so far?

Flyer for the First ACT-UP Action on March 24, 1987, Wall Street, New York City


Come to Wall Street in front of Trinity Church
at 7AM Tuesday March 24 for a


To demand the following

1. Immediate release by the Federal Food & Drug Administration of drugs that might help save our lives.
These drugs include: Ribavirin (ICN Pharmaceuticals); Ampligen (HMR Research Co.); Glucan (Tulane University School of Medicine); DTC (Merieux); DDC (Hoffman-LaRoche); AS 101 (National Patent Development Corp.); MTP-PE (Ciba-Geigy); AL 721 (Praxis Pharmaceuticals).

2. Immediate abolishment of cruel double-blind studies wherein some get the new drugs and some don't.

3. Immediate release of these drugs to everyone with AIDS or ARC.

4. Immediate availability of these drugs at affordable prices. Curb your greed!

5. Immediate massive public education to stop the spread of AIDS.

6. Immediate policy to prohibit discrimination in AIDS treatment, insurance, employment, housing.

7. Immediate establishment of a coordinated, comprehensive, and compassionate national policy on AIDS.

President Reagan, nobody is in charge!


Tell your friends. Spread the word. Come protest together.
7 AM ... March 24 ... You must be on time!

The AIDS Network is an ad hoc and broad-based community of AIDS-related organizations and individuals.

Saturday, August 14, 2010

My awesome friend Rivka staged a one-woman XMRV protest in D.C. I'm posting some pics and her YouTube video, along with her unedited account of events and explanation of her mission. For those who are well enough to do it, get out and X-ACT-UP!



Aug 14, 2010

Dear Everyone Who Cares About People With ME/CFS,

I just held my one-woman demonstration at the Red Cross national headquarters in Washington DC (Red Cross collects 45% of all blood donations in this country) and at the national headquarters of the U.S. Department of Health and Human Services, and it was a success. Here is the video.

On the first day of our protests, August 13, 2010, our first stop was the Red Cross headquarters. Lots of security showed up within minutes of me being there, but I simply educated them about XMRV. :-) This is how it went: My mom (the designated driver and videographer) started videotaping me standing in front of the front door while people were walking in and out of the building. A security guard walked up to me within two minutes and said I could not videotape and hold my signs there. I said "What about over there?" pointing to the sidewalk, not five feet away, but still in front of the door. She said she could not stop me from doing that. So I stepped five feet forward and proceeded with my signholding and talking into the video camera.

Her supervisor showed up a few minutes later and and spent all of his time on a cell phone describing to someone else what I was doing. I stopped the videotaping and turned around to ask him, "Who are you talking to?" He told me he was talking to his director. So I asked if he wanted me to talk to the director and tell him/her why I was there, protesting. No, was the answer. So I said, "Do you want me to tell YOU why I'm here? Would you like to see my signs?" (Who wouldn't? They are so colorful!) Yes, he said. So I told him about how long I've been sick (20 yrs) with CFS and how, finally, medical researchers may have found the potential cause of my illness, a new retrovirus called XMRV, and that it may already be in the nation's blood supply infecting new people who get blood transfusions. I told him how I was there to ask the National Director of the Red Cross to check the blood supply for this retrovirus.

As this went on, lots of people were walking by and many slowed down to read my signs.

Both the secrurity guard supervisor and the original security guard seemed genuinely interested, and the supervisor relayed all this info to his superior via his cell phone. Now done, I went back to my protest and holding of signs for my mom who was still at the video camera.

A few minutes later, I noticed an older man in a more professional suit-type of uniform watching me from another door. In fact, I now saw that there were a total of four security guards hanging around at different spots along the block. I asked the suited man if he was security. He did not reply. So I asked again, and he mumbled something. So I asked if he wanted to know why I was there, and when he said yes, I shared my story all over again, asking him, too, to tell the Red Cross Executive Director that I was there with my signs to ask for the nation's blood supply to be checked for the new retrovirus XMRV, and to screen all donations for this virus, and that I did not want anyone else to get sick like I have been for so many years.

After I was done, the older suited man, an African American, said, Like Arthur Ashe. "Who?" I said. Arthur Ashe, the tennis player, he repeated. He got HIV from a blood transfusion and died of AIDS, he said. "Arthur Ash!" I suddenly recalled the African American international tennis superstar and racial barrier breaker. "Yes, exactly!" Then the security director for the Red Cross (anyway, that is who I think he was) wrote down "XMRV" on a piece of paper so that he would remember the exact name to tell the head of the Red Cross, and we said goodbye. I finished up my videotaping and my mom and I moved on to the national headquarters of Health and Human Services, a few miles away.

There, it was a different story. This huge building is across the street, literally, from the U.S. Capitol Building. We were going to shoot the video by the HHS sign near the street, on the sidewalk, but it started to rain, so we ran to the building's front door and under the cement overhang. Security was super tight. We were there for about half a minute, getting in place for the shoot, when a security guard said we had to stop. I asked why. She called her superior and about three guys showed up. The head honcho told us we could not shoot the video if the camera was facing the HHS building (and what was the point of shooting the video there if it wasn't?). We were told to move. Period. We did. Nothing. We got nothing on video.

That night, reviewing the less than perfect Red Cross video made it clear we needed to go back. We decided to consider that day's efforts a practice run. So we drove back the next day and we shot it all, all over again -- this time in front of the HHS sign by the street and back in front of the Red Cross. No problem, after all, we were on the sidewalks this time. All legal.

My reason for doing these demonstrations -- my goal -- is found below. In short, I hope to inspire many other one-person demonstrations like this around the globe. With luck and media outreach, we'll get media coverage -- and that will impact the political situation surrounding ME/CFS, the politics that has, for so long, dictated our lives. See my note below, it is the same thing I said in my videos.

With hope for our future,
Rivka (at)

* * *

People with ME/CFS:

It has long been a tradition of our democracy that when a people feel their needs and concerns are not being heard by their government they will demonstrate and protest.

This is a tried and true tradition of any democracy.

If we can have 100s of these mini-protests, like mine (of one, two or five people), happening around the country and globe, in front of our government offices and our blood donation centers and blood banks, we may cause some waves, get some press attention, and get some clinical trials and funding for ME/CFS and XMRV research.

Remember, protests and demonstrations -- holding up a sign in a public place stating your views -- are part of the democratic process. Let your voice be heard!

* * *

Dear Health and Human Services Director, Kathleen Sebelius,

I have spend way too much of the past 20 years bedridden and homebound with Chronic Fatigue syndome, an illness with a belitting name for a disability so severe.

According to the Centers for Disease Control there are 1 to 4 million Americas like me, all sick with ME/CFS.

Every year of the past 20 yrs, I hope and hope that my government will do what a government is supposed to do, and help its people -- help me. But every year I am deeply disappointed.

The National Institutes of Health, the NIH, invests $31 billion dollars annually in medical research for the American people. But of that $31 billion, in 2009 CFS research got $5 million -- about the same as what the NIH dedicates to Hay Fever, and about a 1/3rd of what is dedicated to Psoriasis.

Now, with a newly discovered retrovirus called XMRV that is linked to -- and perhaps the cause of -- CFS, we have an even greater reason to stop ignoring the 1 to 4 million Americans who are so sick, so desperate and so in need of help.

Director Sebelius, please dedicate more money to researching CFS and the retrovirus XMRV. Dedicate more money to clinical trials so we can find treatments. And protect the Americans who have yet to get XMRV from blood transfusions, because this retrovirus is surely already contaminating the nation's blood supply.

Please help us.

Wednesday, May 05, 2010

This is Part III of a 3-part essay. Read Part I here and Part II here.

Strays: Part III

Late Spring 2008

Eight or nine months into treatment, as my heart made slow progress on Rifampin, I hunted around the Internet reading abstracts about bartonella and its related cardiac problems. It was hard to find anecdotal accounts of some of the rarer strains in humans. I began mining veterinary articles, which -- perhaps because the subjects were nonverbal -- included more elaborate description of the physical details of the subjects. These were the first articles I found that truly characterized cardiac bartonella. It was around that time that I found a near-description of my own cardiac symptoms in a veterinary article about twelve dogs with heart problems related to bartonella vinsonii subsp. berkhoffii, a strain of bartonella that had known transmission from animal to human. It had been recognized for some time in coyotes, with documented coyote-to-human transmission. On a parallel track, one world-class researcher in Raleigh, NC, Edward B. Breitschwerdt, was on his own obsessive quest to understand rarer strains of bartonella and their impact on human populations. Among other fascinating cases, he has written about a set of twins who seemingly contracted bartonella in utero: one died of a cardiac defect just nine days after birth. His papers on B. vinsonii subsp. berkhoffii in humans were published over a year and a half after I read the article on B. vinsonii subsp. berkhoffii in dogs, and saw my own symptoms in those purebreds and former strays.

B. vinsonii subsp. berkhoffii is a particularly virulent strain when it comes to the heart, at least in dogs. Alarmingly, eleven out of twelve of the dogs in the first article I read, even with treatment, died -- the dog who survived had been on continuous treatment with veterinary Cipro for three years. Clearly, this strain was a different beast from bartonella henselae. The symptomatic notes on the twelve dogs showed an alarming and dramatic infection that seized the dogs quickly, often before they had a chance to get help. A cocker spaniel, a Newfoundland, a coonhound, and two German shepherd were described as having "collapse," whereas a five-year old bull mastiff and a four-year old boxer succumbed to "sudden death." B. vinsonii subs. berkhoffii has also been found in human hearts, and sudden death -- which occurred in the elite orienteers with bartonella elizabethae, another strain that occurs in dogs -- is often an indicator of myocarditis.

Dogs are actually, it turns out, a better model for understanding human diseases than cats. In fact, it is no accident that I found the most descriptive detail of my heart symptoms in veterinary papers and extremely old medical texts, as those patients often had a more comprehensive, intimate relationship with their doctors that involved longer observation periods. In a recent article by Breitschwerdt's team entitled, "Bartonellosis: an emerging infectious disease of zoonotic importance to animals and human beings," the authors state, "it is increasingly obvious that the dog is a natural model for human bartonellosis and vice versa." This same article, published in 2010 -- a year after I was dying in my bedroom in acute respiratory distress breathing with a ventilator as my condition became more deadly, noted that two dogs were diagnosed with b. vinsonii subsp. berkhoffii leading to acute respiratory distress requiring ventilatory support. Other dogs developed "rapid cardiopulmonary decompensation" from this strain. The authors note, importantly, that a limited understanding of bartonella as "cat scratch fever" (bartonella henselae) does not give a clear picture of more damaging, non-self-limiting strains of bartonella in humans. In other words, when it comes to bartonella species, a cat is not a dog.

I was living a parallel reality to those dogs. My infection, after all, had affected my heart with torturous, crushing, utterly debilitating cardiac symptoms just a few days after I was bit. But B. vinsonii subsp. berkhoffii had begun to sound like a ringer for my heart symptoms, even before I remembered and verified the dog bite. For one thing, the technician at the lab that did my blood smear told me he thought I might have a rare strain of bartonella. On my blood slide, the bartonella organisms are bunched in the middle of the cell, whereas in most slides I have seen of bartonella they are clinging to the side. The technician explained this is a visual quirk, that actually the bartonella must be clustered in the concave part of the red blood cells.

I could not find any images of bartonella vinsonii slides, but I did find a slide of b. elizabethae that looked a lot like mine. So both of these became contenders as strains that might have infected me. Because of its lethality and the descriptions of the dogs just collapsing, I felt most strongly that b. vinsonii subsp. berkhoffii was my strain. It is known to cause endocarditis, myocarditis, arrhythmia, uveitis, choriditis, limping, splenomegaly, polyarthritis, and epistaxis in dogs, and endocarditis as well as neurological problems in humans. B. elizabethae, on the other hand, causes lethargy, anemia, and weight loss in dogs, and endocarditis in humans. I called my friend that day and left her a voicemail that said, "I think I've got doggie bartonella!" and I started barking on her voicemail. She reminded me of this message later, when I had my memories about the dog bite.

Around the time of my veterinary readings, unbeknownst to me, Dr. Martin Lerner announced some startling new data from the previous seven years of cardiac observations on ME/CFS patients. At the ME/CFS Conference in Westminster, London, he said that he had identified two distinct groups of ME/CFS patients: one with a herpesvirus illness (EBV, HHV6, HCMV) with no coinfections, and the other with a combination of herpesvirus infections and a co-infection such as Lyme, babesiosis, adult rheumatic fever, or mycoplasma pneumoniae myocarditis. For the first time that I know of, Lerner was publicly acknowledging a subgroup of ME/CFS cardiomyopathy patients whose hearts were likely coinfected with zoonotic, often tick-borne, infections (Lyme, babesiosis). Remember, Dr. Lerner found T-wave inversions and T-wave flattening on Holter monitoring in 90 percent of ME/CFS patients he studied, declaring this heart damage a biomarker. He also found ME/CFS patients to have abnormal tissue biopsies of the heart, and abnormal contraction of the heart indication weakening of the left ventricle. Meanwhile, Dr. John Chia, an infectious disease specialist from California with an interest in enteroviruses, announced his research that showed 135 out of 165 (82 percent) of the ME/CFS patients he tested by stomach biopsy had enterovirus antigens in their stomach tissue, compared with 7 out of 34 (20 percent) of controls, data that validated Richardson's earlier work on enteroviruses with a cardiac-affinity. While Chia's focus was not specifically on the heart (as Lerner's ongoing research has been), both of these raised an interesting possibility: was my heart first infected by a virus, back in 1992, only to be ravaged later by a dramatic attack of virulent bartonella?

In a particularly prescient moment of emailing my home visit doc in 2007 to convince him of my heart infection, I had sent him an article on the latest cardiac understanding of AIDS along with a letter: "Also notable is the attached article AIDS cardiac issues. The fact that pericarditis, pericardial effusion, and all sorts of heart infections are common amongst AIDS patients – and often caused by unusual factors such as staph – leads me to think that this could be a vast untapped area in CFIDS research where the immune parameters and co-infections are so similar to AIDS. Pericarditis leading to cardiac tamponade is one of the only conditions I could find in which chambers of the heart collapsed, which is interesting as Dr. Paul Cheney has found similar heart collapse in upright echocardiograms of CFIDS patients."

Two years after sending that letter to my doctor who thought that having blood like a dead person was not a cause for alarm, after I had been on an antimicrobial regimen for two years, the Whittemore Peterson Institute heralded the discovery of the retrovirus XMRV in ME/CFS patients, and this threw another curve ball. As it turned out, my letter to my hear-no-evil doctor was right on the money: most ME/CFS patients are infected with a retrovirus that seems to pave the way for secondary infections, just like HIV.

In a Q & A in the IACFS Newsletter (Vol. 3, Issue 1, April 2010), lead XMRV scientist Judy Mikovitz answered several questions about Lyme and other coinfections and their relation to XMRV, stating "The hypothesis that chronic XMRV infection creates an underlying immune deficiency is consistent with many co-pathogens including Lyme." She elaborated:

Q; With the known % of CFS patients positive for Mycoplasma species (~60% in multiple studies), Chlamydia pneumoniae (~10% in multiple studies), HHV-6 (~30% in some studies) and other infections, is there any concordance with XMRV positivity?

A: We have only done those analyses on the 101 in the original study, HHV6A was 10%, EBV ~14% and nothing else more than 10%. We are working with several groups at Lyme and those numbers may approach 30%-40 of those tested.

Q: Do you feel that XMRV could act to cause dysfunction of the immune system, allowing opportunistic infections (such as in 4, above), similar to HIV-1 in AIDS?

A: Absolutely that is our working hypothesis

I was correct in asserting to my doctor that ME/CFS patients, initially infected with XMRV, might later present with secondary infections similar to those of AIDS patients, who often get the spirochetal illness syphilis (similar to Lyme) as well as bartonella. I'm not sure why this reality has been obscured for so long in ME/CFS research, but I'm reminded of the sobering article I read about cardiac implications of HIV/AIDS -- about how they were not well tracked in the early years of the epidemic, as patients simply did not live long enough for their heart problems to become full blown. Having a new chronicity brought on a greater understanding of the illness running a progressive course. Funding and ACT-UP tactics, of course, also helped.

My life was still circumscribed beyond imagination, and by July of 2008, my cardiac symptoms were still quite severe after almost a year of treatment, even though I had had significant improvements from the previous cardiac torture. "The best I can imagine in life is a slow, progressive anorexia of everything," I wrote on July 22. My heart had still not returned to its pre-Cipro state for any extended period of time, and that was a relief, but it still slipped back to that state with some regularity without homing there, and on November 20, 2008 I wrote in my journal "Tonight the effort of breathing felt like it would end me. Death still feels very close, and still I think of little else but playing the game of survivor." It was a few weeks before my 40th birthday, and I had spent almost all of my adult years too sick to have a life.

On December 1, 2008, after my revelation about the dog bite and its connection to my cardiac symptoms, it occurred to me the local animal control officer might know something about where the white dog was taken, what shelter. I did some research and found the officer's name online -- her name, Candy LaFlam, seemed like a drag queen name more befitting of a flamboyant afghan handler than a small-town rabies monitor. My friend called her for me, since I was too weak to speak on the phone. The officer, a friendly woman who ran a dog-sitting business, had an immediate recognition when my friend described the dog that bit me. She said she was pretty sure she knew the dog personally. The man on Ireland street was actually the owner of the dog, she said, and he was pulling the wool over my eyes about not being the owner and about his intention to contact animal control. The man in fact had found the dog and brought it in to the animal control officer and told her he wanted to keep it, so she was mandated to quarantine it for ten days to make sure it was healthy. The dog had some blindness due to old age, with glazed and glossy eyes. It was about 30 pounds, part "miniature Eskimo dog," with dirty white fur, and partially deaf -- a male. After her ten-day quarantine, she returned the dog to the man. At some point later, she found the same dog dead by the Gorge. She brought the dog's body back to the man, not knowing how it died. My friend got the impression that Candy was somewhat unsure of the man's story then, but if the dog had a lethal strain of bartonella, sudden collapse at the Chesterfield Gorge would have been quite plausible.

Finally, I had my answer. The dog that bit me had been sick enough to die at the same beautiful Gorge where I had escaped to in my early weeks in Massachusetts, before it bit me.

At that point, however, I could not get tested for this strain, and had to be content with my general blood smear showing I had some strain of bartonella. Bartonella vinsonii subsp. berkhoffii is thought to be more likely in dogs from rural populations, where there is more tick exposure, and it is one of only a short list of dog strains of bartonella that also infect humans: B. vinsonii subsp. berkhoffii, B. henselae, B. clarridgeiae (Candidatus B. washoensis), B. quintana, B. rochalimae, and B. elizabethae. Human labs were not doing specific testing for most of these strains, so I tried veterinary labs. One veterinary lab I contacted about testing my blood, Zoologix, offers a panel test for the most common strains of bartonella found in both humans and dogs, but Zoologix refused to process my blood. Just this year, Dr. Breitschwerdt's lab,Galaxy Diagnostics, began testing humans for b. vinsonii subsp. berkhoffii, but since I have been on bartonella meds for almost three years, and since dangerous hypersensitivity reactions can be induced by stopping and restarting my bartonella drugs, Dr. Breitschwerdt agreed in a private correspondence that I would have a hard time getting an accurate test for B. vinsonii subsp. berkhoffii or other dog strains now. He wrote me: "the optimal testing time point is prior to administration of antibiotics. We do get positive Bartonella PCR/DNA sequencing for some patients while taking antibiotics, but this is not optimal as these bacteria are extremely hard to detect and antibiotics suppress the numbers and the growth in the enrichment culture step." I may never know exactly which strain I have.

I do know this: white animals have often been seen in mythological traditions as harbingers. The white dove, for example, is seen as a good omen, and the birth of a white bison is meaningful in many Native American traditions, especially amongst the Plains Indians such as the Lakota, who view it as a symbol of rebirth when the people of the world have fallen upon troubled times. I suspect some species of bartonella will be recognized as some of the most virulent, life-threatening infections of our troubled times. Tragically, Dr. Breitschwerdt experienced this first hand, when his own work quite surprisingly jumped species after his father -- a tough-as-nails former ironworker and WWII vet -- got sick with a bizarre neurological disease. His story demonstrates why it was so hard for me to connect the dog bite with my symptoms for years, and why it's so hard for many people to recognize dangers in their own back yards. Dr. Breitschwerdt, a veteran of zoonotic illness research, did not immediately suspect bartonella, despite the fact that his father had previous tick exposures but a negative test for Borrelia burgdorferi, the spirochete that causes Lyme. Dr. Breitschwerdt describes his father's symptoms as "retrospectively obvious" but, perhaps because of the nearness of the situation, he did not see them clearly right away.

Dr. Breitschwerdt ultimately found evidence of not one, but three strains of bartonella in his own Dad -- B. henselae, B. alsatica, and B. vinsonii subsp. berkhoffii -- and his father was treated and released from the hospital repeatedly, but his condition worsened until he ultimately died in a severely encephalopathic state. Despite appropriate and aggressive antimicrobial treatment for bartonella, and the fact that his son was a leading researcher on bartonella, Dr. Breitschwerdt's father could not fight the infection that had invaded his brain. Many of his symptoms, leading to his death, were identical to mine -- he had a lesion on his eyebrow like the one I had on my finger, he went into a stupor-like state that was described as nearly comatose, he had seizures and jerking movements similar to my myoclonic activity. By his final blood draw, just days before his death, his blood was only showing evidence of one strain of bartonella, thus indicating his antimicrobial therapies had worked against the other two strains. The remaining strain in his blood was B. vinsonii subsp. berkhoffii!

Dr. Breitschwerdt's article about his father, and the veterinary article on the dogs who died of bartonella vinsonii subsp. berkhoffi, are frightening to read. I know, from stopping my meds a few times, that my bartonella infection is not even close to being eradicated. My bartonella drugs are liver-toxic. If my liver conks out, I'll have to stop my only working meds. Many of my symptoms in recent years, as well, hint at an encephalopathic state, and Dr. Breitschwerdt's father demonstrated how bad this can be: he had hallucinations, dementia, symptoms initially thought to be a stroke, tremors, nonverbal states, severe agitation, inability to recognize his own family members, and near-constant confusion. Similar neurological symptoms from bartonella have been observed, it should be noted, in much younger patients, so these symptoms were not related to age. I have had many similar symptoms since contracting bartonella, though I have not detailed them here. As I write this today, however, I can barely read through my own words. I have a constant, maddening thumping on the right side of my head that has been almost continuous for the past year. My hyperacusis is still so severe I cannot listen to music and can handle very little sensory input in general. It is hard to open and close my right hand. I read things on the Internet and have to read the simplest paragraphs over and over again to understand them, as they initially appear nonsensical. These are just my neurological symptoms of the moment.

Had I finished this article on bartonella a year and a half ago when I wrote most of it (including the speculation about B. vinsonii subsp. berkhoffii), had the ice storm not come and thrown me into the hospital, then into increasingly severe neurological, immunological, and other symptoms until I almost died of respiratory distress, I would not have known about Dr. Breitschwerdt, his recent articles, and the death of his father. Most of these articles were only published in the recent months. In a moving departure from the overly-technical tone of most scientific articles, Dr. Breitschwerdt makes poignant observations about death and dying and the human medical system -- from his perspective as a trained veterinarian watching his father die. "In human medicine, unlike veterinary medicine, no physician claimed or accepted the responsibility to be my father's doctor," writes Dr. Breitschwerdt. He adds, "I found the human healthcare system to be frayed, if not broken."

These realities were not lost on me, and I am grateful to Dr. Breitschwerdt for validating my reality -- especially the deep emotional pain I felt when no one would take on the responsibility of my care -- both in terms of practical caregiving responsibilities and medical care -- and the tragic, broken reality when doctors finally did help me. My home visit doc unceremoniously dumped me after I sent him a letter requesting that he stop speaking to my family about my case. He wrote back that I had clearly shown I did not trust him, and that he could not operate in a medical relationship without "trust" (he was not willing to take actions to regain my trust, like admit he had been wrong about my Lyme disease). My LLMD later foisted off my case on a primary care doctor, implying that my condition was so serious and complicated it had become a liability. My own life, post-bartonella, has become more and more broken.

"Some years ago in a conversation with my mother," writes Dr. Breitschwerdt in the article about his father. "I suggested that the term natural death may well represent an oversimplification of the processes that end a person's life." Indeed, while hundred-year-old cardiology texts can describe the intimate, painful reality of a "natural death," the term natural death is used in modern society as a way of avoiding and anesthetizing the process of dying. This is exactly why a person dealing with a persistent, chronic, potentially lethal infection that invades the heart and brain but evades detection will face denial, derision, and perhaps a grueling and untimely death without a steadfast advocate fighting by her side. I believe there is another reason why veterinarians might be better at this job than human doctors: they are less hierarchical. They don't see a lowly groundhog as unworthy of human interest. They notice, in other words, what is underfoot. By working closely with animals and witnessing the close bond between humans and animals, they don't harbor as strong of an illusion that humans are above animal, and hence immune to insidious little forces of nature crawling up their pant legs. It is the same type of character that makes me admire the often-unlikable Dr. House: when he exhumes a dead cat to save a patient from a zoonotic pathogen, I want him to drive to Ireland Street for me, invade that man's back yard, and dig.

Natural causes are not inevitable. Adolf Hitler once said, "Nature is cruel, therefore we are also entitled to be cruel." It is true that nature is cruel, and that human nature is cruel, but it is Hitler's use of the word "entitled" that gets to me. I think this is what Dr. Breitschwerdt is getting at about natural death. To use that term to diminish the experience of actual death, of death death, is cruel. To walk away from a limping dog, a complicated illness, a person who needs care, is cruel. To not exhume the cat, in its own way, is cruel. It was not, after all, curiosity that killed it -- but rather a lack thereof. Nothing, in other words, entitles us to speed nature along by denying someone's symptoms and then call it a "natural death." Nothing entitles us to deny the complicated, often protracted process of a person dying.

I find it interesting that some drugs, developed for rare medical conditions, are called orphan drugs, and the conditions they treat are called orphan conditions. I wonder when some of us, trapped in the cogwheel of obscure physical realities, will stop being medically abandoned, orphaned, cast astray? Almost as if by vampirism, I have become that dog with the quivering back legs, the dog that tried to wander from its own fate and thought it was being rescued, then found itself dragged back to near where it would die -- yet in one, life-affirming moment, said no with its teeth. I am thankful for the impulse behind that no, the fight that still lives on in me.

This is Part II of a 3-part essay. Read part 1 here.

Strays: Part II

"If a lion could talk, we could not understand him" -- Ludwig Wittgenstein

December 2004- Spring 2008

It is hard to describe the futility of explaining to people a lethal, fringe reality that it outside of their understanding. Wittgenstein had it right when he said "If a lion could talk, we could not understand him." Talking animals only exist in cartoons, and people would balk at the very idea, just as they balk at the idea of homebound, medically disenfranchised patients presenting their own stories. But Wittgenstein was getting at something deeper: language is borne of one's own physical reality, and a lion's words would always be near-misses to humans. Words are, by nature, a way of pinning down the gestalt of experience, but that process does not translate the life of a lion to the life of a human. This is why the Innuit need a hundred words for snow, and the Aztecs needed few to none.

To save my own life as my heart got worse, I tried to translate the lion's roar of my raging infection to a language my doctors might understand. But I was stopped by limited knowledge of bartonella and the fact that dog-to-human strains of bartnonella were so newly recognized that my infection was outpacing the research. It also turned out to be a stroke of bad luck for me that ME/CFS cardiac issues were getting prominent attention just a few months after the onset of my bartonella infection, when well-known ME/CFS expert and recent heart transplant recipient Dr. Paul Cheney began talking about his new theories of cardiac ME/CFS. This new information threw me off the trail of zoonotic infections and distracted me from the obviousness of the dog bite. As I said, I had dealt with serious ME/CFS cardiac issues for years, but they did not resemble my current horror, nor could I find another ME/CFS patient (I tried) with symptoms resembling mine except one Swedish patient who, I quickly decided, might have bartonella too. Yet I did fit the paradigm of ME/CFS heart damage, so I was eager to read Cheney's new work. My Holter monitor test in 2000 had showed T-wave inversions and T-wave flattening, which Dr. Martin Lerner has demonstrated through heart biopsies are indicators of viral cardiomyopathy in ME/CFS patients. Dr. Lerner, like Dr. Cheney, developed a focus on ME/CFS cardiology after his own heart was in danger, quietly treating himself with antiviral drugs for six years until he could resume treating patients full-time and apply what he learned to the ME/CFS community. He expanded upon the work of Richardson and Hyde, fine-tuning his diagnostic technique of using Holter monitoring to detect viral cardiomyopathy, then doing biopsies of heart tissue to prove the existence of the viruses, and lastly treating his ME/CFS cardiac patients with antiviral drugs. Despite a write-up in the Wall Street Journal after he presented his work at a cardiology conference, Dr. Lerner's work is still not well known to most cardiologists, though ME/CFS patients began to take more interest in it when an antiviral drug trial for Valcyte -- an oral verson of the intravenous drug Lerner had used for years -- started on ME/CFS patients at Stanford. In the year after my Holter test showed abnormalities consistent with Lerner's theories, I tried to hand Dr. Lerner's WSJ article to a cardiologist in her exam room, and she simply refused to open her hand to take it, as I were trying to give her a nightclub flier, and walked out the door, pronouncing me "deconditioned." She told me to go home and exercise.

Dr. Sarah Myhill in the UK has explained how ME/CFS patients in fact go into borderline organ failure every time they even sit or stand, due to reduced cardiac output and mitochondrial damage: "in CFS sufferers the drop may be from 5 litres lying down to 3.5 litres standing up. At this level the sufferer has a cardiac output which causes borderline organ failure." My cardiac output, measured on the test Myhill referred to called the Impedance Cardiography (a test I did manage to get -- in a fragrance free doctor's office -- in the ensuing years after my bartonella infection began), was remarkably low upon standing, 3.1 litres per minute which, adjusted by my size, worked out to an even lower number on the cardiac index (1.8 litres/minute) -- that and my other cardiac parameters were similar to those of a 79-year old woman with Class IV heart failure in one published study on Impedance Cardiography that I found on the Internet. It was also significantly lower than what Dr. Arnold Peckerman found in his study on ME/CFS patients, low enough that he would have called it left ventricular dysfunction, whereas Dr. Cheney would have probably called it diastolic heart failure based on his diagnostic criteria at the time. However, since CFIDS heart abnormalities occur at the level of the mitochondria or heart muscle, they do not typically show up on an echocardiogram -- the gold standard for heart failure determination. Diastolic heart failure in general, often called "heart failure with preserved ejection fraction," can be hard to diagnose with echocardiogram alone.

Bartonella vegetations, I later found out, are also quite difficult to detect on an echocardiogram, so diagnoses of bartonella endocarditis take into account risk factors such as body lice infestation (which I don't have) or HIV status. One study reported that "Compared with other cases of infective endocarditis, cases of Bartonella endocarditis are more fibrotic and calcified, less vascularized, with less extensive vegetation and chronic inflammation." (Lepidi, Hubert, MD et al. "Quantitative Analysis of Valvular Lesions During Bartonella Endocarditis"). Myocarditis might not show up on an echocardiogram at all. Myocarditis can be indicated by an EKG, and I showed these indicators, such as Complete Right Bundle Branch Block, on more than one EKG since the dog bite that seemed to initiate my new cardiac problems. Many cardiologists believe this is a marker of myocarditis. "The presence of right bundle branch block or left anterior fascicular block virtually always indicates the presence of significant myocarditis," writes Leslie T. Cooper, Jr, MD in Myocarditis: From Bench to Bedside. This is seconded by L. David Hillis, who writes, "a complete right bundle branch block may be caused by acute myocarditis. . . On occasion, right bundle branch block occurs in patients without underlying cardiac disease" (Manual of Clinical Problems in Cardiology) and also by a book by members of the American Heart Association's Clinical Cardiology Council, which states "Characteristically right bundle branch block or left anterior fascicular block signifies underlying myocarditis." (The AHA Clinical Cardiac Consult by J.V. Nixon, Joseph S. Alpert, etc.). My EKG from a few weeks after the bite also showed something called an RSR Pattern that can indicate a ventricular aneurysm -- a condition that often happens after a heart attack or myocarditis. My doctor at the time told me the test was normal.

In this endemic Lyme area, where I live in an area of dense vegetation, nobody thought to test me for Lyme and coinfections when my heart got so dangerously symptomatic -- which might have included a bartonella test. With my reduced Q -- or cardiac output -- on the Impedance Cardiography, I was squarely in Myhill's category of patients who go into borderline organ failure each time they stand or sit, even without this additional heart infection. But ME/CFS cardiac issues still did not begin to explain what was going on. I had had trouble sitting and standing for my entire course of ME/CFS, but the crushing/squeezing terror was something on a totally different Richter scale, and it had come on suddenly.

Once I became so incapacitated it was inconceivable for me to get to a doctor, I could not get anyone to treat me. Finally, more than a year and a half after the dog bite when I landed a home visit doctor, he was so incompetent he only held a stethoscope to my chest once or twice, and ignored the dramatic change in my symptoms and the fact that my EKG tests were abnormal -- nor did he help me, despite my pleas, to get a cardiologist interested in my case. I begged him to try and get me access to hand-held echocardiogram equipment so we could test my heart at home, and he wrote it in his notes then did nothing as far as I know. I emailed cardiologists and telemedicine doctors all over the country during that time, desperate for answers. My doctor was so useless that, one day when a nurse was putting in an IV and saw that my blood had turned coal black in the tubes, he didn't call me back for 48 hours, even after speaking to his colleagues who told him they had only seen blood like that in patients who were "already dead" -- and then he just brushed it off and offered me no help, nor offered an explanation for the blood he had called "markedly de-oxegenated." He conveyed all of this in a cheerful voicemail message, that he had only heard of blood as de-oxygenated as mine in corpses. The nurse who had taken my blood said she had never seen blood that color before.

It's hard to describe what it's like to muscle through medical miasma with hardly any strength at all. I was desperate for someone to understand the cardiac horror I was going through. But descriptions of cardiac illness had really staled in the era of sports medicine and defibrillators. I scoured the Internet trying to find others with these symptoms, and though I found some near-comrades in people with ill-defined cardiac symptoms who fit into diagnoses like Cardiac Syndrome X and variant angina, their symptoms were not quite like mine. However, these conditions of unusual cardiac pain both seem related to endothelial dysfunction, and bartonella is known to impact endothelial cells.

Ultimately, the accounts I found of symptoms that most matched mine were in old homeopathy and eclectic medicine and cardiology texts from the 19th and early 20th century -- texts predating the invention of antibiotics and invasive cardiac testing, when illnesses ran a natural course. A homeopathic reference for the remedy Spigelia antheilmia, for example, describes a subset of heart patients with a "crushing sensation" in the chest, "shooting pains" that "stab through the heart," and "a sense of suffocation," all of which are aggravated by "motion." It associates these symptoms with pericarditis and notes that the patients "are often anxious about their heart, their pains, and what the future might hold." The Eclecic Practice of Medicine by Rolla L. Thomas, M.S., M.D., 1907, describes endocarditis patients (many of whom also have myocarditis and some pericarditis) as having "great oppression or a sense of constriction in the chest," and "distress in the precordial region" along with shortness of breath. "In the more aggravated cases, the patient will lie on his back," notes the test, "or incline to the left side. There will be distention of the veins of the neck, with marked cyanosis." Interestingly, this book also notes that "great care must be taken to secure rest and quiet. The patient should be placed between blankets, and all company, or anything that would tend to excite the patient, must be forbidden." My heart symptoms would worsen from the slightest interaction with company, or any stress, to the point that I had to limit human contact to almost nothing, and still do or my condition worsens. Until I read that text, I had no way of explaining to people how I would have increased cardiac symptoms from a simple conversation with someone.

In Dr. O. Phelps Brown's The Complete Herbalist, pericarditis is described as causing "pain, oppression, weight, palpitation, . . . debility, restlessness, and great nervous irritability." With endocarditis, "there is at first pain about the heart, whose disordered action may be violent" and "in dangerous cases there is extreme anguish." Thomas also describes myocarditis: "If, however, there is a sense of constriction of the chest, some palpitation, more or less dyspnea attended by slight pain, and the pulse is rapid, small, and easily compressed, evidences of cardiac enfeeblement, myocarditis would be suggested." Additionally, he writes, "There may be dilatation of the cavities, and if there has been localized myocarditis, weakening the tissues, partial aneurism may result. In the localized or circumscribed form there are areas of necrosis, which are followed by abscess formation. These abscesses may open into the cavities of the heart, and thus enter the blood-stream, giving rise to abscess formation in other portions of the body. A favorite location for an abscess is in the interior wall of the ventricle near the apex and septum. They may empty into the pericardium, resulting in suppurative pericarditis. When they perforate the heart cavities, in addition to poisoning the general blood with an accompanying septicemia, they often give rise to malignant endocarditis. This form usually terminates fatally, though, in rare cases, nature throws a covering around the abscess, the pus is incapsuled, and undergoes caseation or calcification." As for prognosis, Thomas writes, if "the patient can refrain from severe mental or physical exertion, can live in an equable climate, and be much in the open air, the life may be prolonged to its allotted period. Where frequent attacks of angina occur and the cerebral circulation suddenly fails, death may occur quite suddenly." To recover, Thomas recommends "Absolute rest must be enforced in every case; the reclining position should be observed, and nutrition maintained."

In contemporary literature on the heart, it was rare to see mentions of cardiac conditions in which lying down improved the patient's condition, even though for me this was the only thing that helped. Nor could I find any mention of slight mental exertion, visitors, excitement, or other things that made my own heart condition worse. Contemporary descriptions of cardiac illness rely upon measurements -- METs (metabolic expenditures), echocardiographic parameters, electrocardiograms -- with little attention given to the patient's pedestrian habits that seem to help or worsen the condition, except for contemporary habits such as eating artery-clogging fast food. The exception to this is sometimes found in veterinary texts, where behavioral observation is not seen as a suspicious practice, as it now is in human medicine except in cases where patients are shamed for being inactive or fat. With human conditions, behavioral qualities whether they are socially sanctioned or just plain odd are more often shuffled into psychiatry. This has to do with the dualistic focus on cure or death, with chronicity and adaptive technology still seen as largely relegated to an arena outside of medicine.

My family had gone into an increasingly distant orbit, and I could not get the practical caregiving I needed to maintain the continuous bedrest that was the only thing keeping my heart from dramatically declining, though I kept begging my family members for help. Nobody else seemed to comprehend how bad it was except for the rare witnesses I had in my space, who saw a catastrophic situation. As I declined further and further, and was later bitten by a tick in the summer of 2007 that gave me confirmed Lyme and probable babesia, I began a new strategy recommended by a friend of a friend who was a pediatrician. I began writing letters to my home visit doctor so as to create a paper trail, and asked for stronger antibiotics than the Augmentin he had prescribed for tooth pain I was having (my trigeminal nerve had apparently been attacked by the Lyme). Reluctantly, he finally gave me Cipro -- which miraculously eased my heart symptoms by about twenty to thirty percent in a matter of weeks. It was, in a Dr. House-ian drama, the kind of bullseye that completely re-routes a medical investigation.

As I wrote in my journal on 11/3/07, "Cipro has given me a reprieve from death for now, though it is probably damaging my tendons. Nevertheless, this drug is a miracle: the crushing, suffocating sensation in my heart, what a comparable patient described as a horse kicking her in the heart -- has relented, and I can sit up for spells without the symptoms thudding through my body and crushing the life out of me." My home visit doctor admitted to me on the phone around the time of that entry (I took notes) that the only explanation for this was that "a bacterial infection was affecting my heart and Cipro was treating it," even though he had previously written in his medical notes "Pt is fixated on an occult or cardiac or systemic bacterial infection. She is already on Flagyl and Augmentin with broad coverage. I told her that it is very unlikely she is having endocarditis or pericarditis but of course can't prove that since she cannot/will not get tested." (Sept. 13, 2007). In the same day's notes, he writes that he "will comply w/ her request to try a diff/ antibiotic." He notes I'm having "chest heaviness/squeezing, chills, etc." What he does not write is that I had just penned my will, and I had written him letter after letter begging for help in the months before that. He also does not write that he would not help to get me testing at home, to "disprove" my "fixation" on endocarditis or pericarditis, that I was having shaking chills so bad my teeth were chattering, that right then I was so delirious I could not speak in whole words but just grunted out sounds, rocking back and forth as my friend desperately called the emergency room and asked if they would do anything at all to accommodate my severe chemical sensitivities. Within a couple of days of that hospital call, I got the Cipro my home visit doctor had reluctantly prescribed. At first, it gave me a Herxheimer reaction so severe I was briefly almost psychotic from neurological die-off.

A few weeks after getting Cipro, I convinced a Lyme literate doctor (LLMD) to take my case, and finally I found a doctor who listened to me. In the week before I first talked to the LLMD, my home visit doctor wrote in his notes, "Cipro is helping her heart sx's substantially" (this is one of the first times he did not put "heart" or "heart symptoms" in quotes, as if the pharmaceutical suddenly proved their existence). "She can sit up, crushing heart sx's [two arrows pointing downward to indicate reduction], chills gone" (10-25-07). In our next conversation (11-6-07) he notes "Cipro helps her "heart" sx's but now developing tendonitis." Cipro and other fluoroquinolone can cause severe and permanent tendon damage, so tendon problems often force people off the drug, and my tendons were in so much pain they did feel like they might rupture. He then told me he was taking me off the Cipro and would not give me an alternative broad-spectrum antibiotic with similar action. At that point I almost lost it. I was still very symptomatic, and I was terrified of the relapse that would inevitably result if he did not provide an alternative and I had not yet had a full interaction with my new LLMD. He wrote "Plan: Stop Cipro which pt resists saying it is the only thing that has relieved her "heart" sx's & that she is willing to risk permanent tendon damage which is against my medical advice." At this point, in a life-saving moment, my new LLMD ordered a repeat Western blot for Lyme -- which was positive -- and a later blood smear for bartonella -- which was positive. I sent the positive Lyme test to my home visit doc, but by the time I had gotten a copy of his medical notes and the records in his file on me, he had conspicuously removed that positive test from his files. I had had an earlier Western blot, performed just a couple of weeks after my tick bite -- a time frame often considered too early to get definitive results. That test, which had positive and equivocal Lyme-specific bands, was negative, but my doctor said nothing about a retest and Lyme is a clinical diagnosis, based on symptoms and tick bites as well as tests. I had also, at that point, had a positive IFA test for Lyme. In his notes on 10-25-07, before my positive test,Western blot, my home visit doc wrote "pt now absolutely convinced [big circle around "convinced"] she has chronic Lyme disease (although she's never had it & her - [negative] testing)." This notation came a couple of weeks before my positive Western blot for Lyme.

My first test for bartonella by my Lyme-literate doctor only tested for bartonella henselae and not the other strains. It was not until April, 2008, that I finally got a positive blood smear for bartonella, but my LLMD had been steadily treating me for the presumed bartonella infection. She had already rendered a clinical diagnosis of bartonella, based on my bartonella-typical symptoms such as pain on the soles of my feet, myoclonic seizures, and odd rashes -- and my positive clinical response to antibiotics that target bartonella such as Cipro and Rifampin.

It is painful to read through my home visit doctor's notes and feel his obvious derision that nearly ended my life. Throughout his notes, he almost never put the names of other organs or systems in quotes, only "heart" and "heart infection" as if he was taking a medical history of the Grinch, or of someone too dumb to locate the thing beating in her own chest. He wrote down the phone numbers I had given him for hand-held echocardiogram equipment over a year before he gave me the Cipro, equipment that would have enabled heart testing at home, but wrote nothing about follow-up action on those number. He wrote many notes about my crushing and squeezing "heart" symptoms, and my obvious distress over how bad my symptoms had gotten, but he was treating me like a hysteric.

In the Spring of 2008, as I made slow progress on my medications for bartonella, I was still fighting the Lyme and probable babesia that had infected me the summer before, and it was an uphill battle. The Winter before that was treacherous and long, characterized by forced stillness as I tried not to backslide. After a brief stint with Rifampin once I had to stop Cipro due to tendon issues, my liver enzymes were elevated so I had to stop my bartonella-specific antibiotics for two months, and during that time I was slowly relapsing, trying everything I could imagine to cleanse my liver so that I could resume treatment. My heart was getting worse again, the crushing sensation returning. Meanwhile, I took high-dose Amoxicillin for Lyme and a slew of herbal remedies for all three infections. I wrote on January 25, "My heart has been really bad this week and all of January I have slid downhill again. I'm afraid my heart is going to stop. Please God stop the terror and let me have those health gains. Let me keep sitting up for my meals -- a luxury I've waited for for 3 1/2 years, in hell, my heart crushing me." The odd lesion on my right ring finger had reappeared, cracking into an open painful wound that would not heal: a sign that seemed to come and go as bartonella treatments succeeded and failed. In early February, finally, I was able to restart my bartonella meds and my heart again began to experience some relief.

But neuro Lyme started running rampant, just as some of the bartonella symptoms were tamped down. In February, my vision had suddenly and dramatically diminished in my right eye, then gradually returned with acupuncture treatments. An opthalmologist suspected it to be optic neuritis, a sign that Lyme or bartonella had gone neurological. My Lyme doctor agreed to switch me from oral antibiotics for Lyme to Bicillin injections, which are thought to better target neuro Lyme. Soon after that, with the re-addition of another drug, Flagyl, I woke up one day, tapped my fingers lightly on the refrigerator door, and felt lightning-like pain shooting up my arms. I stuck my hand under water and the water felt scorching, like liquid fire. I could not pick up a piece of paper without excruciating pain. I had suddenly developed peripheral neuropathy. For a few weeks, it was unbearable, with water feeling like fire and the task of making a sandwich feeling like someone sticking needles under my fingernails, but the magnitude diminished in time over the next few months. Still, it was debilitating, and once again I was helped by my acupuncturist, who would come into my living room, quietly walk around me as I laid on a mattress on the floor, and stick needles right into the tips of my fingers until they sometimes bled, joking that she felt like both a Geisha as she padded around the mattress with no shoes, entertaining me with stories and tending to my needles, and a torturer.

I had had bartonella for almost four years at that point, and it was not going down without a fight, and in fact was just barely controlled. I still had seizures, coma-like episodes, difficult opening and closing my right hand, and other neurological symptoms, as well as constant reminders that the infection was eager to resume a tighter grip on my heart. The white dog had receded into my memory, along with an entire landfill of former cognitive functions. Bartonella, Lyme, and probable babesia had turned my remaining gray matter into a useless slurry. Aside from the myoclonic jerking, peripheral neuropathy, vision loss, and other obvious neurological symptoms, my brain was less functional than ever. I would often lapse into a stupor-like state that felt like my cerebral vasculature was a series of narrowing mine shafts filled with noxious gas: my brain, as best I can describe it, was just barely wakeful. A sense of complete unfamiliarity would frequently overcome me, so things I once seemed to "know" filled me with a sense of amnesia. I watched TV and could no longer understand social cues, or what motivated the characters. Writing became impossible. Worst of all, the emotional content of language seemed to have been removed as if by a paint stripper, its vibrant hues replaced by a factory-applied gray. Words no longer had the same texture. I also felt irritable all the time, and I experienced hyperacusis. My movements were off. My right eyelid twitched regularly, accompanied by a vibrating sensation in my right temple. I would have lightning bolt sensations, or vibration sensations, course through my body. My brain got stuck in what felt like internal tics, odd jerking sensations in my thoughts that I tried, with great effort, to push to the next frame. I had a pervasive sensation of wanting to flee the cinema of my life: I knew the heroine had very little chance of escaping her predicament alive. Continue to Part III.