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