Corkscrewed! Me and My Lyme!
Just when I thought there were no other ways to be pathogenically screwed, I have been corkscrewed.
I have spent most recent months in what Pamela Weintraub called, "the gullies of sleep so black that, except for the nightmares, I thought I might be dead," except for me most of this was waking sleep. It's hard to describe the vacuity of my days and nights, except to say this much illness is like losing time while being exceptionally present to it, not a bit dissociated from the torture.
On November 1, I received a diagnosis of Lyme disease in addition to my other ailments, and my latest Western Blot test was positive, indicating the spirochetes have taken hold. With Lyme compounding the already-debilitating brain dysfunction of CFIDS and MCS, my writing has become flat and pragmatic when it comes out at all. One doctor noted "Dead Creativity" as a common personality change of Lyme, but the cognitive problems go beyond that. As Amy Tan (The Joy Luck Club) wrote about her Lyme, "By day, my memory was held together with friable threads, my concentration was as easy to disperse as blown dust, and when I tried to read, I often found by the second page that I had no idea what the book was about. I did not possess any of the skills necessary to write fiction, for I was barely able to traverse the distance of sentence to sentence, let alone keep in mind a narrative that had to span four hundred pages and keep taut multiple intricacies of plot, characters, and thematic imagery."
I've had cognitive impairment for almost sixteen years, so I know what it is to write in the sand at high tide, but the additional assault on my intellect has been brutal.
Before that deer tick crawled up my flesh in June of 2007, things were looking up. I had an upswing from CFIDS and MCS in May. I was feeling slightly better than I had in a few years, except that I still had horrendous cardiac symptoms. I had a continuous sensation in my visceral heart that was almost beyond description. It felt if I were lying on a counter squeezed between the parts of a hand-crank steel citrus juicer, with a muscleperson crushing the two plates around my heart as it lie there like a deflating orange. Sitting up or trying to leave that metal vise – even for a minute – would intensity the feeling until the most crushing, suffocating sensation would surround my heart and stake it to my chest. The sensation was horrifying and continuous and had gone on for almost three years: my worst symptom of all of my years of CFIDS. During that time, I had to eat most of my meals lying over the side of a queen-sized organic mattress on the floor of my living room, so my head would be below my body. I was using an absurd computer setup that looks like an iron lung. My ex built the box that hangs from the loft above and houses a computer screen. My PCA built the heavy frame my single futon rests on beneath the screen. On a typical day, I would crawl between the box and the futon frame and put the keyboard on my lap. I spent most of my time in that uncomfortable place, lying flat with my legs elevated, because my screen doubled as a TV and is hooked to the satellite – and I lived as if I was trapped under a fallen tree. If I tried to be upright for even a few minutes, my cardiac symptoms would get so bad it would feel like the oxygen was being squished out of every corner of my body by a large steam press, and that my heart would be imminently crushed beneath the weight.
But by May my heart was finally – after three years – not continually giving me that crushing, suffocating sensation that I have only read about in old homeopathy literature describing some types of pericarditis and one cardiology textbook from 1854 that stated matter-of-factly that most patients with my group of symptoms die. My upturn was due to a new medication from pig livers (Nexavir), found by Dr. Paul Cheney to help patients like me who have low cardiac output. My standing cardiac output a few years ago was, from the case studies I could find on similar testing, roughly equivalent to that of a 79-year old with Class IV heart failure. My doctor did not seem particularly concerned about this, or by the fact that I was suffering a kind of psychological Crush Syndrome under that tree of my gravely restricted life.
After a few months on pig potion, I was also able to stray outside of the confines of my iron lung desk. I could walk to the garden twenty feet from my porch and watch the seeds sprout. I could sometimes take short drives in my car – not far enough to go to a medical facility but I got to see chickens pecking in yards and goats nuzzling against fences. I wish I could say these things were paradise but I was terrified my symptoms would come back even worse (which often happens with CFIDS). Around the same time, I had gotten back to my mindfulness meditation practice (inverted with my legs against the wall), and it was actually making me have some visionary instincts about my body.
In June, for example, I had a sudden urge to buy a lot of tinctures and purchased herbs I knew little about because I was instinctively drawn to their names, such as Spilanthes and Usnea. A surge of early summer heat drove me outdoors. Recently, I was reading how microbes change one's posture and personality to propagate themselves, or make infected parties susceptible to other microbes. Apparently this worked on me, because once outside I had to lie down, where bugs could more easily have their way with me. I was flat on a blanket in the grass, the breeze tickling up my legs that were elevated on a slight incline leading to some overgrown plantings. A week later, I awoke with a tremendous toothache. It felt like someone was driving a poison-tipped spear through my face. Just as suddenly, my neck hurt, I could not walk straight, and I found myself lilting sideways like I was having a stroke. My cognitive problems were worse than ever and I felt so tired – not CFIDS-fatigued but an odd, poppy field vacant tired. I decided to take an old bottle of Amoxicillin because I thought it would help the toothache. A few days later, I found a tick bite on the back of my skull.
My box of Spilanthes, Artemisia Annua, Usnea, and other tinctures arrived in the mail around that time and I began experimenting with them. I hadn't known when I ordered the herbs that Spilanthes and Usnea are part of a well-known herbal Lyme protocol used by a Dr. Zhang, and that Artemisia Annua is often used against babesia, a common tick-borne co-infection that can occur with Lyme. Having these herbs on hand when I found the tick bite was prescient.
But the bump on my skull gave me an eerie feeling. I had looked into Lyme before. It was on my radar since my partner at the time I got CFIDS had previously had Lyme and she was beginning to experience post-Lyme arthritis when we met – a very painful reality for her since she was a classical pianist. Some activists at one point had sent me speculation about borrelia burgdorfi transmission through body fluids. I didn't probe too deeply, partly out of a protective instinct that I didn't want to burden my ex-partner, who is still my best friend, with the idea that she might have infected me. I did get tested a couple of times, but most Lyme tests are notorious for producing false negatives, and Lyme is a clinical diagnosis based on symptoms as well as test results, so I never got a clear answer with those two negative tests.
The events in May and June in fact happened exactly fifteen years after my flu-like onset of CFIDS, which had started before commencement at Oberlin College and continued on through a terrifying move San Francisco, and had the same eerie feeling of foreshadowing that made them seem like I was watching the events unfold from the other side of a trick mirror. I felt like I was getting another chance during a traumatic revisit of the charred crime scene where I had been suddenly stripped and pathogenically violated. Dr. Cheney believes in moments of gene reshuffling many years into CFIDS, when the genetic hand one has been dealt, in some physiological gamble, can suddenly hit pay dirt. I was galvanized despite my inability to do anything but sleepwalk through the days.
Because of my toothache, my doctor insisted Lyme was unlikely and the balance problems and neck pain were due to a tooth abscess (I later learned that Lyme can cause tooth pain that shoots up the trigeminal nerve). He felt that an abscess could also explain the chills I was starting to get at night. My severe heart symptoms were much worse again too, and I rarely had an hour when death didn't feel acutely present. He increased my dose of Amoxicillin after a temporary experiment with Doxycycline that made my toothache and heart symptoms worsen. He reluctantly agreed to Lyme testing through Igenex lab.
If you're wondering why I did not run out and get a second opinion or go to a hospital, it's because I have severe multiple chemical sensitivities (MCS) and I was conducted the aforementioned business with my doctor over the phone. Having MCS pushes me back into 19th century medicine due to a complete lack of chemical-free and fragrance-free medical services in this country. The doctor I'm speaking of is the only doctor I can find to do home visits. It took another month before I convinced an old hippie dentist recommended by an MCS friend to come to my house and check out my tooth on the porch.
A few weeks after I found the tick bite, I found a reddish plaque on my lower back but it wasn't a classic bullseye rash. Apparently, only about nine percent of the Lyme rashes now have the bullseye (or erythema migrans) shape. I was starting to get pain in my joints, heels, and the soles of my feet. My doctor had gotten the test results and told me in a crisp voice on the phone that I didn't have Lyme and could stop worrying about it. I asked him for copies of the tests but, when I got them, was so spaced out I put the unopened envelope in another room and forget it was there. My doctor kept prescribing antibiotics for the tooth pain and for my cardiac symptoms, and I cared about very little at that point but staying alive. In August, the dentist showed up with a big beaded earring dangling from one ear but did not find any signs of a tooth abscess. I was too exhausted and cognitively impaired to even think about digging out the test results myself until around September. That's when I saw my Immunoflourescence Assay (IFA) for Lyme was positive, and that my Western Blot test had enough positive bands that most LLMDs would render a positive diagnosis (July was too soon after the tick bite to expect a positive WB, but a positive IFA is considered highly accurate). My doctor had overlooked the obvious diagnosis of Lyme disease, even after I pointed at it with a huge neon arrow. My later Western Blot, as I mentioned, was also positive.
By the second week of September, I was indescribably ill. My chills had turned to gripping shakes, my cardiac symptoms were off-the-charts bad, and I was so convinced I was going to die I used a simple template for a will I found online to scratch out my intentions for my literary estate. I begged my doctor to give me something stronger, even though he still did not believe I had Lyme, and he prescribed the post-9/11 superstar antibiotic Cipro. Cipro pulled me back from the white-knuckled edge. Within a few weeks, miraculously, Cipro loosened the iron grip on my heart, and I was able to sit up or prop myself up on pillows for periods of time – for the first consistent stretch in over three years. Cipro also gave me the energy to look over my tests, and I saw the unmistakably positive IFA and positive Lyme-specific bands on the WB. After much searching around, I found a Lyme literate doctor (LLMD) willing to consult with me. This new doctor quickly diagnosed me with Lyme disease based on my symptoms and test results, and told me she was fairly sure I also had babesia and bartonella, two common coinfections.
Getting a positive test for babesia and bartonella (which the Lyme community calls "Babs" and "Bart" as if talking about a Fifties homecoming couple) is very complicated, as there are many varieties of each that don't even have lab tests. There are approximately ten American human varieties of bartonella and thirteen of babesia but the tests only cover a few of these. Because bartonella is notorious for causing (frequently lethal if left untreated) cardiac infections in the immune-compromised, and is the only organism of the three that responds well to Cipro, my LLMD concluded bartonella was the most likely culprit in my heart, especially given my other bartonella-specific symptoms such as pain on the soles of my feet. I had probably been infected with it when my cardiac symptoms started, and the Lyme this past summer was most likely a reinfection. Even Dr. Skeptical admitted that the Cipro was treating an infection that seemed to be affecting my heart. If I hadn't found my way to antibiotics that helped my heart, I don't know where I'd be now, if I'd even be alive. From the deepest wisdom of my body I can soberly say: I doubt I would be writing this. Both Lyme and bartonella carditis can be fatal.
Repeated infections with Lyme and its coinfections are not uncommon, and one might acquire different strains of Lyme or new coinfections with subsequent tick bites. One recent study found a recurrence rate of 3-28 percent of Lyme in endemic areas, and found substantial evidence that most of these recurrences were due to reinfections with new ticks. There are probably genetic susceptibilities as well. Bernese Mountain Dogs, for example, are freakishly susceptible to Lyme when compared against similar breeds.
The coinfection conundrum surely does add fuel to the reality that more CFIDS cases than expected may actually be chronic Lyme coupled with other infections. There has always been quite a bit of jumping back and forth between the CFIDS and chronic Lyme communities, and until recently I believed Lyme was just another of a slew of infections that CFIDS patients often tested positive for, along with HHV-6, CMV, various mycoplasmas, chlamydia pneumonia, and others. Some CFIDS patients I knew came back positive for Lyme years into their CFIDS diagnoses and began identifying as Lymies, relinquishing their former identities as PWCs. I felt vaguely betrayed by them. Lyme patients, as bad as they had it, seemed to possess the privilege of those with known causal pathogens – something CFIDS patients didn't have. I knew a little bit about Lyme politics – and had ordered Michael Christopher Carroll's book, Lab 257: The Disturbing Story of the Government's Secret Plum Island Germ Laboratory, about the infamous Plum Island germ lab on Long Island that is said by many to have disseminated Lyme. I already had a peripheral fascination with the government's interest in chronic-illness-inducing zoonotic pathogens as biowarfare agents, and my aforementioned ex-partner had gotten ill with Lyme on Long Island so her proximity to Plum Island intrigued me. With further reading, I now know the history of Lyme eerily parallels the kind of stuff in CFIDS exposes like Osler's Web and The Extremely Unfortunate Skull Valley Incident: government cover-ups, corruption, beloved doctors under threat, and the flat-out denial of the existence of the sickest patients. The difference between CFIDS and Lyme is a stirring sense of hope in the Lyme community, because there are known pathogens and known treatments – if one is lucky enough to get properly treated. But there is also righteous anger and plenty of suffering.
Ultimately, patients with chronic Lyme, just like patients with CFIDS, are in hell, fighting for their survival and livelihood. Lyme is still treated by most doctors as limited and easy-to-eradicate. Patients who progress to chronic Lyme are largely ignored, or their existence officially denied. As Dr. Daniel J. Cameron wrote in a letter to The New England Journal of Medicine this month, there is a decided publishing bias toward researchers and clinicians who don't believe in chronic Lyme or long-term antibiotic treatment. "It is time the medical community acknowledged Lyme disease as another example of 'clinical equipoise' – an absence of consensus within the clinical community – and established publishing standards accordingly," wrote Cameron. Meanwhile, Lymenet is full of horror stories about mothers passing Lyme on to their babies, with pictures of adorable children taking antibiotics with sippy cups. Lymenet is quite educational about this elusive beast only pioneering doctors really recognize. The threads have ominous titles like, "Just woke up from coma," "Lyme obituaries," and "PICC line infected again."
Personally, my greatest education has been around the issue of coinfections. A large percentage of chronic Lyme patients are infected with babesia, ehrlichia, or bartonella. A tick can be infected with numerous pathogens, including rarer ones such as tularemia, rocky mountain spotted fever, and relapsing fever, and transmit them all in a single bite – significantly increasing the likelihood of a protracted and severely debilitating illness. Since the treatments for coinfections may involve stronger antibiotics, antimalarials, or other altered protocols, the coinfected patients often receive ineffective treatment and relapse into new waves of mysterious symptoms. As Dr. James Schaller, M.D. prophesized, "The year 2007 will mark the death of the expression 'co-infection,' because increasingly patients have awareness that Babesia and Bartonella are not little addendums to Lyme disease, but are often far more serious than Lyme disease. Any physician who is not well-versed in these two killing infections will not be competent enough to treat patients with flea and tick infections. These infections do not circle around planet 'Lyme' like small moons, instead, they are their own huge planets that cause massive consequences to the human body."
Tick borne illnesses are increasing dramatically as the medical establishment lays on the grass with inaction and the bugs continue to breed. The CDC reported a 40 percent increase in reported Lyme cases from 2001 to 2002, for example. That's a massive leap. In Massachusetts, as evident as the epidemic seems to be, most doctors seem fairly ignorant about proper testing, and Lyme literate doctors are very hard to find. Someone I know with CFIDS and MCS contracted Lyme last summer, as did a sick friend last Spring, and another MCS friend the summer before (and her dog). I know of a young man who was given a serious psychiatric diagnosis after sudden onset symptoms, yet his doctors did not think to test for neurologic Lyme, which can cause transient schizophrenia and other psychiatric phenomena once it invades the brain. It's horrifying to think how many people are ignored, iced out, or even institutionalized because the pinhead-sized tick in the haystack is just too small to be a suspect.
Meanwhile, as I lay finally-not-dying (I hope), I'm undergoing not just migrating cognitive problems, but a paradigm shift. I'm struck by the fact that, even after having CFIDS for so many years, I can experience new varieties of fatigue, pain, cognitive problems, and other familiar symptoms I thought I knew so intimately. It just goes to show how broad the physical landscape is, and how narrow it's lexemes. I hesitate to use the word "fatigue" anyway, since I'm really talking about a level of neurological, intracellular, and deep-tissue pummeling that most people never experience. People with CFIDS have long referred to fatigue as "the F word" because of how it has been misused against us. But if the other F word can mean so many individual things, why do we insist on narrowing all physical experience to such a limited questionnaire of medical "complaints" that rarely lead to the gestalt of an experience?
As I type this, the battles known affectionately as the "Lyme Wars" rage on. The warring camps are the Infectious Disease Society of America (IDSA), which maintains an establishment viewpoint that Lyme is a discrete illness easily treated by a short course of antibiotics, and the International Lyme and Associated Diseases Society (ILADS) which holds that Lyme is a complicated illness with unreliable testing and the need for long-term aggressive treatment strategies. Many patients are perplexed why our government agencies stick to the IDSA agenda, and they speculate that insurance companies fear the cost of long-term antibiotic treatment. But it's actually more than neglect, since physicians who treat chronic Lyme patients with long-term antibiotics are not simply ignored, but censured. The most recent case of this is Dr. Charles Jones, a beloved Lyme pediatrician in Connecticut who is being dragged into court by the Connecticut Department of Public Health on charges that he treated patients deemed "low-risk" for Lyme disease (some with a history of known tick bites) with antibiotics. This would make sense if the man was a crook, but his patients love him so much they are raising funds for his medical defense, showing up in court to support him, calling him a saint, and sending him fruit baskets. This battle is not just about insurance companies restricting long-term antibiotic use. If Jones were a dermatologist prescribing tetracycline to acne-ridden teenagers, I don't think any of this would be happening.
On the flip side, the visibility of children with chronic Lyme, or the deaths of teenagers with Lyme, would be terrible PR for the IDSA.
Many people find it hard to believe the government might intentionally squelch the facts of an epidemic, but this idea is old hat to CFIDS patients. We witnessed the foot shuffling and misappropriation of research funding and outright mockery around our illness for decades. Still, it's hard not to turn to the powers-that-be for help when so many are suffering. I find it fascinating and ironic that a patient written up in Southern Medical Journal whose Lyme had crossed the blood-brain barrier and who began, as a result, to hear incessant musical hallucinations, heard only patriotic music – when so many official agencies deny the life-altering severity of neurologic Lyme. But without borders we are too permeable, no longer immune: this goes for national borders as well as the brain's borders.
I have an unusual perspective now, traversing the politics of three maligned illnesses so that I can see the patterns of disbelief and neglect, as if I'm watching them from an air ambulance. Because of this, I don't foster many illusions that either medicine or government is necessarily out to protect me. Our country, after all, has a deep history of medical experimentation on non-consenting subjects. It wasn't that long ago that spirochetes were studied non-consensually on poor black men in Alabama, in the form of the Tuskegee Syphilis Experiment. Many have written about the military industrial complex's ongoing fascination with incapacitating illnesses, with more investigative thoroughness than I can't muster up right now. In World War II, for example, brucellosis was studied by the military because of its known ability to cause chronic disability. The authors of The Extremely Unfortunate Skull Valley Incident support an argument that military brucellosis research could have been linked to the emergence of CFIDS (and brucellosis can also be spread by ticks). The borrelia genus of bacteria, which encompasses Lyme disease, was studied by Unit 731, a notoriously sadistic Japanese biowarfare experiment station in WWII. Soon after that, the Plum Island Germ Laboratory was founded as a lab to study zoonotic diseases that could be used as biological weapons against the food supply. It was criticized for poor safeguards and controls, and accused of releasing some of these zoonoses to the human populations along the eastern seaboard, particularly Lyme disease. Lab 257 contains an alarming map that shows bird migration patterns from the lab to the primary epicenters of Lyme in the Northeast. Carroll writes, "You can pinpoint cases of Lyme disease on a map of the United States by drawing a circle around the area of largest infection. Now you can tighten that circle until a single point is reached. That point? Plum Island. Spokes radiate outward from this point and pass through neighborhoods boasting the highest rates of Lyme disease contamination in the nation."
Tick-borne co-infections have been biowarfare favorites too. Take Q Fever, or coxiella burnettii, a pathogen once tested on Seventh Day Adventists by the government, as well as at the infamous Ft. Detrick testing facilities in a project known as Operation Whitecoat, which also tested tularemia. This is declassified information, so the U.S. Government had an admitted interest in Q Fever as a biowarfare agent, and even somewhat carelessly played with it – although Q Fever (Query Fever) is one of the most infectious diseases in existence, and has been researched in Australia and Croatia and Japan and the UK for its ability to produce a long-term illness that meets the diagnostic criteria for CFIDS. One can get Q Fever from a single bacterium, and coxiella burnetii can live for long periods of time in dung or wool and be spread by wind, giving it the type of potential America's forefathers saw in smallpox and blankets.
Our nation's medical atrocities resemble the maneuvers of a batterer who is both charming and malevolent, following the classic three-stage batterer Cycle of Violence. In the "tension building stage" there are cold wars and stockpiles of biological weapons. In the "explosion stage," the Atomic Energy Commission tests radiation on non-consenting human subjects. In its "honeymoon stage," someone issues an apology for the horrors of the past, puts together a website or hands out antibiotics, and promises it will never happen again. Then, as the snarling lip of tension building begins to overshadow the fragile honeymoon, the brain continues to pledge allegiance. And allegiance, in its own way, is pathogenic. I think it is naïve to assume the cycle won't continue, that it isn't continuing right now.
Of course allegiance to truth is another story, and we all owe ourselves that, along with an ounce of prevention against these illnesses that are so easy to deny. I hope as I lay down these words from my snow-globe-shaken-brain, I can at least offer a little of that.
This is not intended as medical advice and I am not a physician. Also, my brain is pretty wrecked, so though I've fact-checked as carefully as possible, I certainly would love to hear feedback about any misprinted or contested facts.
A concise explanation of the Lyme-biowarfare history can be read here and here.
There is a great deal of controversy about the way Lyme is diagnosed. For more on this, please visit and download the guidelines from the ILADS here and read Dr. Charles Crist's opinion on how to interpret the Western Blot here.
Please do not reprint or reproduce any of this without permission.