Since May is Lyme Disease Awareness Month, I am posting in three parts a long essay I started before the Ice Storm about my infection with the Lyme coinfection bartonella (which is frequently tick-borne, and people are often infected with bartonella at the same time they get Lyme), and it's interaction with XMRV, ME/CFS, and cardiac issues. I have now been in treatment for both Lyme and bartonella for almost three years but have not been able to edit this essay until now. This is Part 1.
Finding the answer to my medical puzzle in Massachusetts was like trying to narrate a fabulist bestiary out of zoomorphic clouds. It was impossible to articulate. One week I was lying on my porch as raspberry-eating chipmunks squatted on rocks to grasp berries from the bushes, and the next week I was fighting for my life against a zoonotic pathogen that had entered my heart.
My first drive down Ireland Street had seemed like jailbreak, as the side windows of my Volvo framed weather-beaten New England capes. The Hilltowns housed the tougher stock. Ireland Street goes most of the way to the Gorge, until the turn-off by a llama and alpaca farm. I had just moved to Western Massachusetts at the end of July, 2004, from Providence, where I had spent years too ill to walk fifty feet to the end of the block, mostly bedridden and confined to a tiny ten foot by twelve foot room where I had a cot-sized futon, a computer and a 13-inch TV. Even though Rhode Island is the smallest state in the Union, small enough to be spanned in an hour, I only got to enjoy its scenery in my early years there, when I was less sick. An hour was further than I could typically travel after that: fifteen minutes was further than I could travel. Though I promised my dog Rowley until the day he died that we would one time return to the Jamestown lighthouse along the Southern coast, he saw that I never went anywhere. My life was characterized by constriction and constant pain. It took years to marshal the strength to make my move across the state line.
When I first saw the perfectly-carved masterpiece of water and rock known as the Chesterfield Gorge, I started crying. It was emotional for me to be out of my old apartment, at this pristine and barely-trafficked spot. I had this feeling that maybe I was going to escape my hell, even though my heart was thumping out of my chest from the effort of walking from the parking area to the railing overlooking the drop-off, and I had to lie down on the trail to recover. It's hard to describe what it is, after so many years of being so ill and so punished for any motion with horrific symptoms, to dare to feel hope, but I thought I might be recovering a little bit now that I was in cleaner air. People with severe chemical sensitivities sometimes do recover if they are put in a pristine environment, and several people had spent over a month making my house on five acres very green so I could live in it. The Gorge was the my first post-prison landscape. It was like a first slice of blue after years of barred windows.
I was driving down Ireland Street a month or so later -- on September 8, 2004 -- when I saw a frail white dog limping slowly down the middle line, stopping occasionally to wobble like a confused drunk. I slowed my car but the dog showed no signs of leaving the road, waving its butt like a surrender flag. Its eyes were big bowls. When I see its image in my head, I can picture the diseased eye. I think only one eye had signs of not functioning, and the dog's skin looked bad. Its fur was thinned out and the visible flesh was irritated and pink. When I got out of the car, the dog didn't try to run. It could barely hobble. It was on the verge of collapse and seemed terrified, as if an illness had seized it suddenly or it had just been abandoned there. It had a collar but no tags. Its bones were not sticking out so it probably had not been away from food and shelter that long. I recognized some of myself in that dog. For example, it seemed to be avoiding exertion, which is a symptom found in those with mitochondrial dysfunction or cardiac problems, who have excruciating symptomatic payback or even death from the exertions normal people take for granted. In retrospect, I think the dog could have had a damaged heart, because it was not suffering obvious weakness from malnutrition and dogs will attempt exertion until they are in severe pain or will just collapse from it -- or that it was simply at the end of its days. Severe pain did not seem to be this dog's worst problem, as it did not flinch from being handled or wince when it jumped in the car, and it was not panting from distress, as dogs will often do in acute pain. It didn't seem to have the energy for panting. I had a thought the dog might have been attacked, and perhaps that's why it was avoiding the woods and staggering down the road, but it had no scratch or bite marks. It was a scruffy little dog, sweet and scared.
I'm very allergic to all dogs but a few hypoallergenic breeds, so I did not want to put the dog in my car. The nearest house was close to the next turn in the road, and I couldn't run or walk either, so I herded the dog toward my car door. Once the back door was open, I shoved the dog's butt a little so it would jump and it didn't resist, just seemed so weak in its shaky back legs. I had grown up in a family that often picked up strays. I remember my sister, when we were kids, building a habitat for a shivering little mouse out of cardboard boxes so it would not freeze to death beside the grocery store where she found it. My Mom once brought home a cat she found at a donut shop that we named (originally) Donut, and we owned a couple of second-hand dogs before my allergies worsened. Now, I can see the citified hubris of assisting a sick dog that staggers out of the tick-ridden woods, but I was not thinking about a 19th century death. I had lived, for so long, a disability of postmodernity and chemical culture.
I found help at the second house -- a place with a trailer in the yard. I think it was then, when I shuttled the dog out of the car and it began to realize I was going to abandon it and a man appeared in the doorway, that the dog snarled and nipped at me and bit down hard enough to break my skin. I downplayed the bite because I was concerned that if the dog appeared vicious it would be put down. In fact, I did not remember this detail until I found the email I had sent my then-partner about the incident. It was a huge fact to forget all these years. The man at the door had on a wife beater and pants, and I could see movement in the dark space behind him, though he was filling the doorway with his stance, obscuring my view. I heard his wife's voice from somewhere in the din, and suddenly she appeared with a bowl of water. The man had a big charming smile, and he reassured me he knew the animal control officer and would try to get the dog medical care. I decided to trust him, plus I really had to get out of there. I was growing sicker from the dog's dander and also from the laundry fragrances on the man's clothes. I deposited the dog and went home where I wrote the email I later found:
Sent: Wednesday, September 08, 2004 5:17 PM
I just had a sad dog experience. I saw this lost dog who looked really sickly weaving along the road. I picked him up and drove him to two different nearby houses, until the second guy took him in and offered to call animal control. I couldn't keep him or bring him home -- I was having a massive allergy attack and wouldn't have even taken him in my car but I just knew he would get hit. He also snapped at me and broke the skin a teeny bit, so I hope he didn't have rabies or anything. . .
I forgot this crucial biting clue because my cognitive problems prevent me from keeping a steady narrative sometimes. I had learned in over twelve years of illness that few doctors were interested in crucial clues unless they turned over the stones themselves, and I had also lost most of my functional memory. The dog bite should have been memorable, since I have only been bitten by dogs twice in my life and they were both little white dogs -- the other was a vicious, child-hating poodle owned by Great Uncle Leonard and it left a tiny heart-shaped scar on my left hand. But this bite was not a big deal to me at the time. I did not connect the dog and the claw hands and the horrors that followed, not until more than four years later, after hovering close to death most hours in between. This fight for my life is still hard to talk or write about, especially since I am still battling cardiac symptoms that finally feel, after years, that they are not imminently lethal all the time.
When I finally made the connection that the dog might have been the reservoir of disease, I realized how skewed my sense of time had become. I had come to associate my new, screamingly life-threatening level of disability with the state of Massachusetts, since it started here, but actually my first few weeks here were hopeful. Reading the emails from the weeks before the bite, I can't believe how alive I sounded in my first month in this new state, how I could luxuriate over words and how expansive the hours seemed. In the pit-and-pendulum years that followed, all time seemed to be crushed into a thimble, and I could only think of one repeating thought as I dragged my dying body from hour to hour: how was I going to stay alive? How could I get anyone to help me live? There were barely enough hours in the day to choke down one meal, to do some research online to try and save my own life, to beg yet another numb-eared person for help and be rejected like a mangy stray. And sleep: sleep was a long, long poem channeled through a Ouiji board.
I was waking up every day with a crushing, suffocating sensation in my heart that worsened as the day went on, and became excruciating at night, when my heart became as intrusive and violent as a jackhammer. I was desperate for answers, and desperate to stay alive. In one episode of House, a man at gunpoint takes Dr. House and some others in the hospital hostage, demanding that they get to the root of his deadly illness and save his life. As the weeks wore on and my cardiac symptoms became more torturous, I was almost that desperate for some route to viable treatment. Like Dr. House, I kept turning over stones and ruling out diagnoses, but doctors often view such persistence in a patient as a kind of madness, and dying without help brings its own kind of madness. It was clear to me I had no chance to stay alive if I didn't fight, yet I had much less stamina than that dog, who used the simple strategy of throwing himself into the bright light to get noticed. I had to follow that dog's courage in facing more abandonment and rejection as he fought for his own life. I had to throw myself into the light, even if people interpreted my illness as disheveled desperation.
I made very little progress over time, because I was just too sick to do much of anything but try to stay alive. I told a friend it was a "rock hammer pace," to refer to the scenes in the Shawshank Redemption when a prisoner chips away at a wall with a rock hammer to escape. It took a year of antimicrobial medications before I had enough memory to consider the significance of that dog. After a month and a half on a new anti-malarial drug in the Fall of 2008, I began to have vivid flashbacks of scenery from my childhood. To feel momentary luster, even though still horribly ill, gave me a glimmer of hope that my brain was starting to revive. Right then, the sick white dog started to insert himself in my mind with totemic significance. I saw his face very clearly. One aspect of my many years of myalgic encephalomyelitis (ME/CFS) is that I have had some degree of facial agnosia. In the early years of ME/CFS, when I lived in San Francisco, I was one of two witnesses to an armed robbery that occurred at 4:30 in the morning at an all-night grocery store, but I was such a terrible witness that, after bringing me in to look at a lineup, the cop dismissed me as useless, since I could not remember the criminals' faces. I remember they were running with a box, but could not recall their hair color or the hue of their car. My memories are often vague, boxy. Faces slip away, yet they can suddenly reappear in crystal focus, so acute it's as if a synapse just activated, which is what happened with the dog. Though I could not remember the date that I picked up the dog, I did remember I wrote an email about it.
So I ran a search of my saved emails on the word "dog."
And then a search on the words "claw hands."
See, my severe cardiac problems had started the night of the claw hands, and I knew if I picked up the dog before the claw hands there might be a causal relationships between the two events. My new partner and I had just started fooling around. Suddenly, I had ripping pains across my chest and an iron-jawed squeezing around my actual heart. My arms froze and my hands formed into claw shapes -- I could not pry the fingers apart and they were clenched tightly together and turned inward. I wanted to shout for my partner to get off of me but I had suddenly lost the ability to speak and could not even grunt out sounds. My body was rigid. I thought I must be having a heart attack. Though I had had chest pains with much of my sexual activity in the previous decade, this incident was different and absolutely terrifying. From that moment on, for years of incomprehensible terror, I was barely alive with wrenching, suffocating cardiac symptoms. When I reviewed my emails from that period around the dog bite, I learned something remarkable: the claw hands incident had happened three days after I picked up the sick dog. I had described the whole ordeal to a friend, and in my email box there are a string of responses with joking titles like "claw hands puppet theater." On Sept. 12 I wrote to her "I'm glad that 'claw hand sex' is a genre now. But yes, attempted claw hand sex should be a crime. I should be put into some kind of clawcuffs pronto." On Sept. 21 I told her I had an episode of "claw foot" too. While we had a pattern of making fun of our most bizarre symptoms, I was absolutely terrified about my heart and these new symptoms. Something was horribly wrong, and there was nothing funny about it.
In the weeks and months that followed, I also began to have seizure-like episodes of myoclonic jerking, would go into a terrifying, coma-like state where I could not move or speak -- often after seizure activity, and I had a swollen lymph node in my left armpit that would not go away. My partner would often massage the migrating sore nodes in my neck and pelvis, but the single armpit node was huge and unyielding. I also had two odd, scaly patches of skin -- one on my breast and one on my arm -- that did not go away for about a year. Additionally, I had a small, rounded, painful lesion on one finger that soon began to crack, bleed, and refuse to heal. My cognitive problems had also worsened, but the most marked thing was that I simply could not safely do anything for myself -- even the slightest motion would cause excruciating cardiac symptoms, and it was so dangerous for me to try to get food, get to the toilet, make a phone call, eat, or even slightly lift my head.
But the problem -- really, the problem I have had since I became chronically ill -- is that I could not get enough practical help to get through my days, let alone fight the medical system. And having a medical record is like having a police record. New symptoms are more often viewed as suspicious new crimes than important details in a larger puzzle. While Dr. House has a whole team of people to write and cross off postulations on a whiteboard, ravenously searching for an answer to a medical mystery, the real experience of chronically ill patients tends to be much different from this. The chronically ill are the ones who have to sleuth around for answers. They are also the ones who have to prove their own innocence, and assert repeatedly that they deserve some quality of life beyond the status quo. The years of my horrific cardiac symptoms, in fact, mark a period of epic neglect from my health care providers. At the time of the claw hands, I had just begun care with a new physician, and he ignored my abnormal EKG, then later refused desperate requests for a home visit as I grew too ill to get to his office. In my medical file, there are repeated notations of calls from people advocating for me that say things like "She is going into a 'coma-like' state. Can't talk, can't move. Feels that she is close to death" (1/19/05) and "Pt has been 'crashing badly' with CFIDS/MCS. Blood pressure is low and pt is too weak and sick to come to office for IV." (4/7/05). When I finally got a home visit doctor, he was much worse than the other doctor. I barely survived his care. His care was, at best, verging on murderous. When I read his medical notes, I actually do feel like someone confronting an attempted murderer at a trial: I'm filled with the most terrifying sensation that this man tried to kill me, that he ignored my pleas for help until I was seconds from death. Throughout his notes, he writes the word "heart" in quotation marks (which he doesn't do with other, unvalidated symptoms), as if talking about a speculative sighting of Jesus on a tortilla, not talking about the organ pumping life through my body. I can hardly bear to think about those months in his "care."
I had had ME-related cardiac problems that had been documented since the year 2000 even though they went back to 1992, including signs of cardiomyopathy, orthostatic intolerance, tachycardia, chest pains, and post-exertional worsening of symptoms. I had anxiously awaited every bit of attention given to ME/CFS cardiac issues, and my abnormalities were consistent with theories that ME/CFS starts as a viral cardiomyopathy, especially since my onset began as a flu-like illness. Dr. John Richardson of the UK was perhaps the most long-standing ME/CFS doctor studying cardiac causes of ME/CFS. Richardson spent 40 years examining enteroviruses along south bank of the Tyne, following them through generations, with a particular focus on coxsackie viruses, which are known for both ravaging neurological symptoms and devastating effects on the heart (particularly myocarditis, but also pericarditis and valvular dysfunction). Richardson strongly believed enteroviruses could explain the multi-system and organ damage relating to the broad symptoms of ME/CFS. He also found that coxsackie could be easily passed from a mother to an unborn child, leading to fibroelastosis or maldevelopment of the heart, or structural abnormalities of organs including the brain. Right before his death in 2002, Richardson finally published these findings in his book, Enteroviral and Toxin Mediated Myalgic Encephalitis/Chronic Fatigue Syndrome and Other Organ Pathologies (Haworth Medical Press 2001). His work interests me not only because my Mom's father had a valve in his heart replaced, but more importantly because my Mom had polio as a child, and polio is perhaps the most notorious enterovirus. If an asymptomatic mother could pass coxsackie on to an unborn child, why not another enterovirus such as polio? It is possible that I was born with neurological or cardiac weaknesses that went undetected. My mother and I joke about my childhood maladies, such as my insomnia that started soon after birth, well before Kindergarten nap time, or the chronic headaches and flu-like symptoms I began to have at the age of 7. I was mostly a healthy child, but I have noticed some childhood consistencies with other ME/CFS patients who are friends of mine. For example, some of us could not run long distances when we were children or young adults, even if quite physically fit. We would experience sudden weakness or faintness upon running around a track, and shortness of breath that made us different from the other kids. I often tried to train myself, in fact, to run longer distances but I never was able to succeed. It seemed odd that, despite my efforts to physically condition myself through cycling and frequently-used gym memberships, and my steady workout schedule that gave me toned muscles and an enviable resting heartrate, my long-time smoker friend in college was easily about to take a class in cross-country running and push herself to run a mile, whereas I could not do distance running no matter how fit I was.
Canadian ME/CFS doctor Byron Hyde took an interest in Richardson's work when most ME/CFS doctors were more interested in neurology and immunology. "I have found that during the first years of acute onset ME/CFS disability," writes Hyde in the Handbook of Chronic Fatigue Syndrome (Jason, Fennell, and Taylor, eds.), "the incidence of pericardial effusion is unusually high. This seems to settle down with no apparent short-term problem, and after a year, the cases of pericadial fluid decrease considerably. However, the incidence of valvular disease in people in their 30s and 40s appears to be higher than in the normal population." He also notes "several cases of elevated right heart pressure, significant septal defects, and increased myocardial wall thickening," then adds that "Dr. Richardson has identified more than several hundred cardiopathies in his ME practice." These tidbits on ME would have been helpful when, as I fell into acute-onset ME/CFS in 1992, I immediately experienced chest pains and shortness of breath as well as orthostatic hypotension upon exertion (and my doctor did not even do an EKG), but the new symptoms that began with the claw hands brought on a level of ongoing terror and disability that defies description. It was violent and constant and totally new.
It is known now, from research on ME/CFS deaths, that ME/CFS patients die earlier than they should, and cardiac deaths are one of the top three causes of death, but little is known about the exact nature of these deaths, since extensive autopsies are rarely performed. The family of Casey Fero, a 23-year old ME/CFS patient in Wisconsin who died of ME/CFS-related myocarditis, tried to remedy this by starting a tissue bank where ME/CFS patients could donate their bodies to science. Fero had been found on autopsy to have viral myocarditis, but his heart also showed fibrosis, or scar tissue from past infections. Patients with Lyme and coinfections die suddenly and tragically as well, many of cardiac deaths. One example of this was the untimely and eerie death of Leslie Wermers, a 41-year old Lyme patient who died of heart failure in her sleep. Before her death, she had been videotaped for inclusion in the Lyme documentary Under Our Skin, and those videos show her speaking at a memorial for another Lyme patient, saying, "She shouldn't have had to die." In another scene, she talks about how she knew the illness would kill her one day. Could she have done anything to convince doctors of this? I know what she knew in her own body, and I am still fighting to save my own.
Most people would call 911 or go to the ER with a terrifying, life-altering cardiac incident like I had with the claw hands, but I could do neither of those things. It's a basic fact of people with severe chemical sensitivities: emergency medical care is just not an option. Because I had suffered angina-like pain in my chest before, I hoped this was that type of pain on a new level, though it felt completely different. It felt like a momentary heart attack that later turned into a constant heart attack. The cardiac distress was of a greater magnitude than I had ever experienced or ever heard of, and my hands had never frozen into claws like that. It wasn't until years later, when Under Our Skin showed a neurologically-impaired Lyme patient with similar hands, that I saw any example of what had happened to me. The tremendous crushing sensation in my heart started right after that. In my journal, I wrote of the crushing sensation as a trash compactor, those giant steel jaws in the back of a garbage truck that casually and crushingly smashes the cargo. The sensation was horrendously crushing, but not a tree on top of my heart -- more of a heart-shaped lead encasement wrapped completely around the heart, and being screwed tighter and tighter around the organ. I could not imagine anyone feeling this and not dying from it immediately, and I felt like I was imminently going to die. Most of the time, most hours of most days, there was no way to distract myself: the pain was so immediate, demanding, and extreme. It was absolute cardiac agony, all day long, with almost no respite. The only slight relief came when I would lie in an inverted position, with my butt on a pillow and my legs up on a wall. Inversion helped me somewhat, but then, going upright at all -- even to lift my head for a minute to drink some water, wound amplify the crushing sensation tenfold, so that I might spend hours after that one exertion feeling as if a steel-toed boot was kicking me in the heart. I spent most of my days in that inverted position all day. I ate my meals like a sick dog, lying on a mattress on the floor with my body flat and the plate on the floor so that I could lean over and scoop the food into my mouth, since lifting my head even the slightest bit would increase my heart symptoms, sometimes for hours. The level of impairment was bad enough, but the actual physical sensation was incomprehensibly bad. It felt continuously like descriptions I have read of heart attacks. I was often in screaming agony, with a squeezing and crushing around my visceral heart combined with an odd vibrating/rustling sensation of the heart laboring to beat as my neck veins bulging out and global hypoxia filled my body. It was like a corset, boning around my heart, tightened to the point of suffocation, a feeling of constriction beyond description, a small box of hell I cannot adequately depict. All I can say is this: there's no way I survived that. There is no way a person could survive that level of cardiac agony for that long.
So for three years I lived like this. Even with my legs inverted, the crushing around my heart was continuous, squeezing all of the oxygen out of my body, and getting up for water or urination was terrifying as it would make my symptoms so much worse. The distress was so bad I would often spend hours at night just lying on the floor screaming, sometimes calling my family and begging them to not let me die, knowing none of them were going to come and help me as they had lapsed into a chilling denial. I was just in complete terror, the life being violently squeezed out of my body. I had watched my own dog die of bone cancer that had metastasized to his lungs, filling them with fluid that was drowning him from the inside out, and I once knew a guy who was almost murdered by an escaped convict trying to strangle him to death, until his eyes bulged out and his neck was bruised. The sensation in my heart had that feeling of imminent suffocation. I was dying a violent and horrible death, and I could not get sufficient practical help or medical care and was for the most part too ill to help myself, especially since I had to spend almost all day in an inverted position and could not risk exertion as it would cause my cardiac symptoms to worsen so intensely. I had so little oxygen traveling to my tissues. This fact was palpable and maddening. I have read accounts of drownings or suffocation and it had that level of desperate struggle to it, of a person trapped in a car underwater breathing the last dregs of a tiny air pocket as every cell scrambled desperately for life. I could feel it in my brain, my organs, my limbs. My neck vein felt like it would pop, so bloated from trying to compensate for my heart's failings. It was, like cardiac syphilis, a violent cardiac death -- with "violent" being a very important qualifier.
Though patients describe both angina and heart attack (MI) as "severe," "heavy," "squeezing," and "crushing," the difference is often the magnitude and the length of the attack. Myocardial infarction is also described as "deep and visceral" and "the worst pain someone has ever experienced." Women, in addition, often have a "feeling of impending doom" with heart attacks, but of course this "feeling," though an actual symptom, often gets them written off as anxiety sufferers rather than intuitives. However, while an myocardial infarction might last longer than angina and be more severe, neither of these are ever described as continuous. I had these same symptoms -- a severe, heavy, squeezing, visceral, crushing around the heart -- with a feeling of impending doom -- but with few breaks: my attacks were not episodic but rather the breaks between them were episodic. I had, in fact, symptoms of a heart attack nearly all the time. I know this probably sounds inconceivable, but some people have daily migraines too. It was beyond belief. And it was happening to me.
By late 2008, as long as I was lying down and rarely exerted myself at all to do daily tasks, and took several different antimicrobial drugs that I had been on for a year, my heart did not spend all day at that level, but was still quite bad, much worse than it was before I moved to Massachusetts, and with an ongoing tone of threat -- since my crushing symptoms returned with some frequency, and I feared they could again become constant. That was, of course, before the ice storm that pushed me to an even worse state of illness. On proper antimicrobial drugs, my heart was finally getting better -- the same heart my doctor had put in quotes as if I was making it up. My parenthetical heart, on the other hand, was devastated from years of terror.
I now know that the infection causing my heart symptoms is a bacterial infection known as bartonella. Before 1990, only two bartonella species, B. bacilliformis and B. quintana, were known to exist in pathogenic forms, but since 1990, at least 22 bartonella species have been described in the medical literature, and at least half of these are considered human pathogens. Many of these are known to have an affinity for cardiac tissue, both in humans and in dogs. I do not have the most commonly-tested species, bartonella henselae, as I tested negative for it on PCR, but I do have one of the other species, as proven by a positive blood smear that depicts a vivid image of the bartonella bacteria clinging to my red blood cells. My heart has also responded to bartonella-specific antibiotics, which my Lyme-literate doctor knew to be a clinical sign that bartonella had invaded my heart tissue. Bartonella infections of the heart are frequently lethal -- almost always lethal without prompt treatment, and they can be particularly virulent in the immune-compromised, mostly those with AIDS although clusters of bartonella heart deaths have also been found in elite orienteers, IV drug users, and the homeless. Links between ME/CFS and AIDS immunology are well-established and have been written about eloquently by many researchers and writers, so its no surprise I would be vulnerable to bartonella's invasion of my heart.
Since this essay was originally written, and the link between ME/CFS and the retrovirus XMRV was found by the Whittemore Peterson Institute, it is quite possible that bartonella might be more virulent in someone with ME/CFS and behave as it does in AIDS patients. Studies have found bartonella to be associated in AIDS patients with bacteremia, endocarditis, aseptic meningitis and dementia. Interestingly, one recent paper in Medical Hypotheses postulated that acute bartonellosis itself can behave like AIDS: "We speculate that the pathophysiology of the acute phase of human bartonellosis resembles AIDS, with a period of immunosuppression following the infection and later, clinical manifestations of immune reconstitution subsequent to treatment." Constrictive cardiac conditions such as cardiac tamponade and constrictive pericarditis are seen in AIDS patients, from secondary infections. However, and this is important to note, if tamponade (a state where the pericardium fills with fluid and chokes the heart) is appearing in ME/CFS patients, it may go unnoticed unless a patient dies and a proper autopsy is conducted, as patients with hypovolemia often have a different presentation of cardiac tamponade called low pressure tamponade with more mysterious (and less detectable) clinical signs. Streeten and Bell found that most ME/CFS patients have chronic hypovolemia, sometimes with less blood in their veins than someone who has bled to death.
Bartonella is known to cause endocarditis, myocarditis and pericarditis, but its most common cardiac complication is endocarditis, which is where the valves of the heart fill with vegetations. An infected pericardium can also constrict the heart, if it fills with fluid and clamps down. Myocarditis can cause left ventricular dysfunction or even aneurysms that can in turn become infected and might lead to a squeezing or crushing sensation and reduced cardiac output, or just dramatic cardiac weakness and death. I finally got a positive bartonella test, but only 3 1/2 years into the infection. I don't know that anyone else has lived that long without treatment from an active bartonella and highly symptomatic infection in the heart. In fact, most strains of bartonella have been identified in humans after the patient has died and the tissue examined. Attention to this growing public health threat has been slow-growing, but a recent slew of articles compared bartenella rochalimae -- a strain spread by rat fleas -- to the Black Death. "Bacteria that can cause serious heart disease in humans are being spread by rat fleas, sparking concern that the infections could become a bigger problem in humans. Research published in the December issue of the Journal of Medical Microbiology suggests that brown rats, the biggest and most common rats in Europe, may now be carrying the bacteria." ("Rat Fleas Spread Heart-damaging Bacteria" California Science and Technology News, November 25, 2008).
The cardiac involvement was beyond obvious in my case, but my doctors would not listen. With gravely reduced cardiac output, and little oxygen transported to my organs, I could feel every function in my body failing each time I lifted my head to take a drink of water. It was like being trapped under a tree where nobody notices the tree. I even said this to my Mom, who at one point was trapped on her side under a car that had to be lifted off by many neighborhood men. She had a crushed pelvis, and my sister and I had to run and get help when I was only six years old. I asked Mom why she could not see that I was crushed under a car, why nobody would lift the car off of me, and she didn't say much. No metaphor, no literal language, could get through to anyone in my life. I tried to use the simplest phrase to communicate with my sister that I was dying from this. "Please don't let me die," I begged her. "Please come out here and help me."
"We just don't understand what you mean by death," she responded.
"I mean death death," I said.
My father came out to assist me temporarily, but would not stay longer and help me though I was begging him for more help. I was pleading my case to him with tears running down my cheeks, as if before a judge, but I knew I would not be acquitted. I wrote in my journal, a week before he left, "In between bouts of heart terror and rage: near-death sensations in my chest, venous pressure in neck again, heart failure big time. And there is no one and nothing to bail me out." As he stood in the doorway ready to go, my stepmom waved to me from the car. Dad was telling me about the stray she had brought along with her -- a bitch she had rescued from a puppy mill. His face lit up when he talked about this, about the dog making a steady recovery and getting socialized after years of neglect. Then the door slammed and he was gone. Continue to part II