In scanning my TV Guide yesterday for something to watch while in pillow-supported traction, I came across the SciFi Channel Saturday movie, “Ticks.” Horror, of course, how appropriate. I passed. I’m one of those people who remembers the tick or ticks that made me sick. I live in the northern California coastal woods and I’ve been bitten dozens of times, at least. I believe I have had Lyme disease for 36 years (as of 2008). Over a period of about 10 years, starting in 1988, I tested negative three times on those blood tests for Lyme known as ELISAs, or more commonly, Lyme-titers. Then, I used the correct lab (IGenex), the best test and a knowledgeable doctor and tested positive. I was positive even by extremely rigid Centers for Disease Control (CDC) standards on the FDA-approved Western Blot blood test and I was positive by IGenex’s not-FDA-approved Lyme Urine Antigen Test (now replaced by an updated, also not FDA- approved urine test). I have subsequently had several more positive blood and urine tests, so there can be no doubt, even in the minds of Yale-school Lyme conservatives, that I am one of those long-untreated, now-incurable, late-stage cases even THEY admit exist, but claim, on the basis of bad statistics, are “rare.”
My attitude on that is that it is not a question of whether Group A of the world’s famous physicians can agree with Group B on something it’s obvious none of us knows much about. It’s a question of whether or not I’m lying or misled about what is happening to me. If I’m not lying or misled and I am sane, then I should get the same kind of respect and assistance from the medical, insurance and social welfare establishment that a person with ALS, MS or AIDS gets. With all of them, and many other diseases accepted as serious and real, symptoms are vague and intermittent and you get sicker and sicker…slowly or rapidly. But, because the “gold standard” test has not yet been invented that can convince these worthies that I’m not a liar or mentally incompetent, I get to, unassisted, have a potentially terminal disease involving lots of pain, while my mind rots. Meanwhile, I can listen while people tell me I ought to get more exercise or I’m faking it in order to get drugs, or malingering, or getting into victim-hood or that I’m a hysterical woman and/or a hypochondriac with the intelligence to really research it. And, please, don’t tell me you get more flies with honey than vinegar, because I am really mad about this and the time for honey is long past.
Here is, more or less, my story. I am an anthropologist, but I got my PhD too late in life to be competitive in the academic world (46, I’m 72 now, 2015). Between that, my gender (the wrong one) and balancing motherhood against career, my hard-earned education turned out to be a major exercise in futility, at least from the standpoint of ever getting a job as a professor. But, I have always worked, part-time or full-time, blue collar or pink or white, except when my children were very small. Being able to support myself, me-not-my-husband, has always been a point of honor for me.
In April, 1999, I lost my last full-time job. I was fired six weeks into it, after a conversation about my negative attitude. Although I have taught high school and have been adjunct faculty at community colleges and universities, I had been forced, in the five years preceding my diagnosis, to work as a reporter. My “negative attitude” fits right into a newsroom, but it was definitely not appropriate to the job I lost. That job was as a public relations representative for a software company. I couldn’t market my way out of a paper bag and learned all my computer-related skills patchily on my own, rendering myself about as unqualified for selling software as you can get, but I really needed the money. (My boss hired me in spite of my full disclosure on these matters. I now realize it was an act of charity inspired by his wife, to whom I had complained about the sexism I was and had experienced in my professional life, or lack of professional life.) However, even with those caveats, I realize now that I might have made it if I had not had Lyme disease. There were other factors attendant to my short tenure at the software company, but I could not overcome them and deal with Lyme symptoms at the same time.
Politically, I’m a lifetime peace/women’s rights/anti-racism/environmental activist. How fitting, I often think, that I should have a highly controversial disease and find it so hard to get help because of the doings of the scientific/medical/industrial establishment. I have so long criticized. Unlike some other Lymies, I am surprised by absolutely nothing about the Lyme political situation. The conflicts of interest bending objective science, the death battle between conflicting egos, the tush-covering to protect medical reputations and the complete denigration of patient input—it all makes perfect sociological sense to me in the context of my academic and activist background.
Other writers have called Lyme the “do it yourself disease.” Right on. It’s also the people’s disease. Looks like we, the people, are going to have to help each other deal with it and together change out relationship to what we aging activists used to call The System. Fortunately, the people have been right there for me. The help I received instantly in response to my first terrified emails and phone calls are the only help I received for a long time and I am deeply, deeply grateful. Thank you, thank you, all you Lymies, for your websites, emails and phone calls, without which I would have blundered around God knows how much longer, believing I could not have Lyme disease because of those three negative blood tests. My mission in life now is to pay that compassionate assistance forward.
Other Lymies tell me I have a moderate case. Compared to many, that’s probably true, but I’ve had it much longer than all but a tiny percentage of Lymies, as far as I can tell, given the flawed statistics. So far in my research, I have come across only a handful of references to anyone who has had Lyme this long, let alone someone who got rid of the B-flats after hosting them this long. (B-flat is a musical reference, a handy visualization tool and my endearing little name for Borreliosis burgdorferi, the Lyme bacterium. It is abbreviated Bb, which is also a way of abbreviating the musical key of B-flat, a key I found hard to play on my fiddle, when I could still play my fiddle).
It is true I was able to put off using a power wheelchair until some years ago and can, even now, often walk short distances or dance a little on a good day, but before I got my chair, I was for a long time looking longingly at people using chairs, walkers or canes at the supermarket while I leaned on my shopping cart in great pain, taking tiny steps and groaning while trying to remember through Lyme fog where the produce department was. When I received my disabled placard for my car, I cried with relief, whole vistas of possibility now being opened to me that were closed before because walking the width of even three parking spaces was an exercise in agony. Of course, that doesn’t mean much when you pretty much cry about everything, a state called “emotional lability” and recognized by those in the know as a symptom of Lyme-caused brain damage. When you find yourself in the middle of this nightmare, words like “moderate” and “severe” lose much of their meaning and the only words that really fit it are “get me the hell out of this.”
What the Bleep is Wrong With Me?
In October of 1999, five months after I was fired, I collapsed. I was under great stress at the time, doing an insane commute to the only job I could get (not much call for 57-year-old “entry-level” professors or reporters, ageist employers always called me entry-level if they employed me, in order to pay me less or “overqualified” if they didn’t want to employ me), doing things that were the opposite of healing and taking a lot of Tylenol. I was also, at that age, attempting to keep my place in a performing amateur bellydance group, having been an amateur bellydancer for 20 years. I got up one morning after a weekend of performances, expecting possible back spasms, an LD symptom I’d had for decades, and found that my legs would not work. I could only crawl.
I was in great pain. As soon as there had been any weight on them, my legs had refused to hold me up and had just plain buckled under me. The pain in my neck, back and legs was the worst I had ever felt, counting childbirth. Doctors have subsequently reacted to this story by condescendingly telling me of course you don’t want to walk if you are in pain. To which I’m usually too bumfuzzled to reply, “No, doc, I’m telling you, my legs would not work. The pain was secondary to that.” It’s infuriating, but true. Your own observations are as nothing to your doctor. She/he will believe only what she/he sees.
I was in bed for a week taking the maximum dose of Percocet (left over from previous back spasm episodes), getting up painfully only to go to the bathroom and grab something from the kitchen to eat and drink in bed. (I live alone, then and now, having survived four divorces, two of which I now know were caused by LD.) Even lying still in bed somewhat immobilized by appropriately placed pillows and drugged, I could still feel the pain. I realize now (after antibiotics) that the “October Collapse” also included very blurry vision and thinking problems Lymies call “Lyme fog,” but I was too preoccupied with the pain, too drugged and too much in a Lyme fog to realize it at the time.
In addition to having no real job or savings, I had no doctor, no insurance and almost no cash on hand, not to mention no income and no permanent home. Fortunately, the clinic nearest me took fees on a sliding scale. The PA there said “herniated disc, but to prove it, we’d need an MRI” and, boy, are those expensive. I was not impressed with her reasoning, so I went back the next day and asked for the doctor. She said “sciatica” but agreed with me that I might have Lyme disease and gave me a supply of Celebrex samples. (I did not realize until much later how fortunate I was to have stumbled into the office of one of the few doctors who would not laugh me out of the room when I suggested I might have Lyme disease. It may not be all that surprising, since Sonoma County was the first county in CA to report Lyme Disease to the CDC.)
Taking Celebrex, I was able to get up a day after that and move around enough to take care of myself. It is the only anti-inflammatory I could take because of GERD, also a Lyme symptom. I stopped taking the Celebrex, however, advertised as having been developed for people with tender stomachs, when I saw a TV ad for it that said it could cause stomach bleeding without warning. (!) Now I can only take Tylanol for pain, but I restrict that, too, because longterm use can damage the liver. I’m worried about my liver because I believe it was damaged by a round of what was called Hepititis A in 1994, a round that was subsequently verified by my Lyme-doctor, on the basis of medical records, as Lyme hepatitis.
When I was well enough from the October Collapse to sit at my computer, I got on the Internet and finally put it all together. I dug out my copies of all my medical records going back to 1971, which I just happened to have through a fluke, arranged them chronologically and compared them to numerous Lyme articles I read from both the Internet and the public library. I also called the Marin County Lyme Disease Support Group and had an hour’s conversation with a merciful angel named Lee Lull, who validated my suspicions and helped me assess my situation. At that point, I knew if I tried to work and cope with this disease at the same time, I would break even worse than I already had –heart attack, burnt-out esophagus from reflux, cancer or other things too terrifying to mention. So my first problem was feeding and sheltering myself in the context of my poverty, while researching the people’s thinking on how to deal with the people’s do-it-yourself disease.
The first year after that was a nightmare, as I tried to keep body and soul together on unemployment benefits, charity, freelancing and temporary and part-time work, in between and not-so-in-between bouts of being sick, while my mind unraveled. (Ever see the movie “2001”? For those who have, here is a quote. “I can feel it, Dave. I can feel it,” what Hal the Computer chanted as Dave the Astronaut systematically broke all his connections.) In my researching, I learned that nobody knows how much antibiotic I would have to take to get rid of the B-flats after this long time of harboring them, whether I even could get rid of them that way after all that time or just what it might do to the rest of me, in the long run. (Some researchers now believe that you can’t get rid of all of them after five years of infection—you can only go for a remission.) Realizing I might well be really sick the rest of my life, perhaps unto death, I moved back home (Humboldt County, California, from Guerneville, California), into a lean-to built onto a barn and owned by a good friend with Lyme disease in his family, and started trying to treat myself, while looking for a Lyme-literate doctor (LLMD) and saving up money to pay for her/him.
A longtime very smart friend who believes he has had Lyme disease since childhood called a local PA for me and explained Lyme to her. It wasn’t hard. She’s a Lymie, too, as are, I have found, an enormous number of other people in Humboldt County. She prescribed 30 days of Doxycycline, which did little. She followed it with 8 weeks of Biaxin (clairethromycin), which lowered my symptoms enough that I was able to work as a reporter at the local newspaper for three months, first 30 hours a week, then 20. Some symptoms went away, some didn’t, and new ones appeared.
It was shortly after this that my financial situation, the failure of the Biaxin to cure me and the end of my lean-to situation required me to make some key decisions. I offer the details because I happen to know that many Lymies are stymied in getting treatment as much by poverty as by lack of Lyme doctors. Much of this part of my story is a function of either pure dumb luck or angels watching out for me and I don’t know how to generalize that, but here is what happened. In March, 2000, while still working part-time at the local newspaper, I made a doctorless judgment call one day when I could barely walk or work my computer-mouse arm. I declared myself too sick to work, quit my job and applied for county welfare. I was not eligible for unemployment at that point not only because it had run out, but because I was too sick to work, a situation that disqualifies one from receiving unemployment benefits but does not necessarily qualify one for state disability. I wonder how many Lymies locate this “crack” the hard way and then fall through it. The county supported me for a month while my state disability claim was processed.
Miraculously, when the disability claim was granted, the amount was based on my salary at the six-week job from which I had been fired, the highest salary I’d ever made in my life. My disability payments were more per month than any salary I’d ever earned, except at that six week job. My joy at this good luck (I certainly didn’t plan it that way) was soon tempered when I realized that my MediCal co-payment (with disability you get MediCal, ie, MediCaid in California) would be figured by subtracting $600 from my disability payment and declaring anything above that to be my co-payment. The assumption, apparently, was that a person could live on $600, other than under a bridge. MediCal, therefore, was practically useless. Most of the “excess” went for medical expenses, as I bumbled around from office to office looking for someone who would either corroborate my Lyme self-diagnosis or explain to me rationally and knowledgeably why it was incorrect, and then offer a better diagnosis. Ultimately, it paid for some, but not all, of my Lyme tests, for treatment and for some, but not all, of my appointments with the LLMD (Lyme-literate doctor) I finally found, ironically enough, 40 miles from where I had just moved and 300 miles from my new home in Humboldt County. (I had by then moved into a trailer in Trinidad, another Humboldt County town 100 miles north of Redway. The trailer was purchased with divorce settlement money I finally just happened to win right then, after 12 years of trying.)
The year and a half of disability payments, nevertheless, supported me while I processed a claim for Social Security Disability. The latter was made possible (since you need a lawyer to claim SSD and few chronic Lymies can afford that) by the fact that Humboldt County at that time had specialists that did nothing but process SSD claims for anyone who was on county welfare and had a doctor’s certificate swearing that that person was too disabled to work for the county. The doctor who signed that form for me “frisbeed” my list of Lyme symptoms across the desk at me without looking at it, while laughingly declaring “Oh, you don’t have Lyme disease!” But, he did sign the form. He based the claim on arthritis, degenerative disc disease, depression, Chronic Fatigue Syndrome (CFS) and fibromyalgia, all of which were well- documented in my medical records and all things LD can cause or imitate.
When I diagnosed myself, I had used both my medical records and the medical literature–all of the medical literature, not just that part of it controlled by the conservative Lyme establishment. (Most useful were articles by Drs. Joseph Burrascano, Brian Fallon and the late John Bleiweiss, but I read and still read, everything I have energy to read.) As a social scientist, once I understood the conflicts of interest involved in Lyme research, the role of drug and insurance companies, their connection to government agencies and the stultifying, insular and self-serving culture of the medical profession (which many doctors consciously reject), I understood that my only hope was finding an LLMD with a social conscience. (That’s redundant. You would only risk being an LLMD if you had a social conscience.) In September of 2000, I found him by requesting a list of LLMDs in my area from the Lyme Disease Foundation. The list had one name on it, a doctor 200 miles from me. He was infuriatingly arrogant and would not take me as a patient because the referral my primary doctor sent him did not meet his expectations, expectations he refused to reveal to me when I called again to ask him about it, but, in the midst of his fulminations, he did give me the name of another LLMD 100 miles further down the road and that doctor did take me.
The first doctor, I subsequently learned, had once had a social conscience, but had lost it somewhere along the line. When I went to the second doctor, a man of great compassion and patience (don’t ask me his name, he’s now retired), I went well-prepared with my symptom-chronology and a second copy of all my medical records. Unlike the doctor who threw my list back at me across the desk, this doctor thanked me kindly for my efforts (I had by then seen so many doctors since my first Lyme symptom that it would have been near impossible to get all those records from the doctors themselves) and spent two hours walking me gently through my medical history. At that time, it was still recommended even by the CDC, that Lyme disease be diagnosed clinically, with tests as a supplement. That is no longer the case. The mainstream medical protocol recently established by the Infectious Disease Society of America, now will accept a diagnosis based only on the highly unreliable blood tests.
In compiling this symptom list, I was utterly floored by the number of symptoms and lab reports I found that, taken in combination, clearly indicated Lyme disease. Many of them were accompanied by doctors notes indicating that even though the cause was unknown, that particular symptom was not abnormal enough to worry about. These included abnormal EKGs, urine tests far too alkaline, a bad case of shingles—a seniors disease—in my early 30s, a cholesteral count of 350 at age 31 that never came down until statins were invented, abnormal neurological tests for carpel tunnel syndrome, unexplained knee and ankle swelling, abnormal post-natal fevers, extreme hay fever unto asthma, intractable breast cysts—the list goes on and on. When I showed it to my LLMD, including the fantastic lab reports on my “Hep A” hospitalization, he validated them all and complimented me on the thoroughness of my research. He concluded that I had “a classic case of Lyme disease, California strain.”
Into the Mist-Tick (apologies to Van Morrison)
Here is the history the records reflect. In the summer of 1971, having just dropped out of grad school at UC Berkeley to become a committed back-to-the-lander, I camped out in tan oak and madrone leaf litter — right on top of what I have now learned is the habitat of the Western blacklegged deer tick. I’m sure I first got infected then, as did my neighbor within earshot of me, who died years later of cancer. My neighbor was lucky enough to get a rash, but not lucky enough to get adequate treatment. Our symptoms paralleled each other’s for years, until she first got cancer.*
All that summer I was pulling tiny little tick nymphs or larvae off me. Later on, when kicking around the idea of Lyme as an explanation for joint pain, I dismissed it, because I could not imagine, as body conscious as I was, that I could possibly have had even a nymph on me for 24 hours—the widely publicized time it allegedly takes for a tick to transmit the B-flats– and not have known it. Now I’m a little more humble and I know more about ticks. I know I once had one in my armpit for days that was only discovered by the doctor trying to figure out why my hand was numb. (Since that tick was engorged, it could not be identified, so there is no way of knowing if it was the Lyme-bearing species. However, since I remember an expanding rash creeping out of my armpit and down my arm at about that time, shortly after I held a goose newly imported from the east coast under that bare armpit, I suspect that it may have represented my first Lyme infection.) Even Dr. Body Consciousness here can have a tick on her and not know it. Plus, everyone doesn’t think it has to be on there for 24 hours, especially if it is “removed improperly” and/or is a western deer tick, as opposed to an eastern deer tick, the tick most of the research has been done on. There is some indication that one third of western deer ticks carrying Lyme disease may be able to transmit it as soon as they break the skin.
The September after the Summer of Ticks, I was treated for a urinary infection with back pain. I don’t know what the lab work said, it is one of the few lab reports I don’t have, but that may have been my earliest Lyme symptom, other than the curious expanding rash around the tick bite in my armpit. It seems to me I was sick and depressed, one way or another, all winter, but there were plenty of explanations, from sexual and political harassment out of grad school to lingering postnatal depression to the fact that I was living in a remodeled tool shed with my one-year-old while my house was allegedly being built. Some friends worried that I was suicidal.
(Point of information–I’m not suicidal in the strictest sense because I believe you forfeit your right to suicide when you have children, period. You brought them here, you’re responsible to help them be here, as long as they need you, period.)
A word here on the mental symptoms of Lyme disease—for many, many people, psychological symptoms appear before any physical symptoms appear or in conjunction with the earliest symptoms. This places the Lyme victim into a dreadful bind in seeking treatment from doctors ignorant about Lyme disease, especially if they have any history at all of psychological problems, no matter how spurious or far back it may be. They are at great risk of being labeled mental early on and that will bias most doctors forevermore, especially if the patient is female and the doctor is male. Add in other sociological biases and both doctor and patient are facing diagnostic chaos.
Since the Summer of Ticks, I’ve been diagnosed with bursitis, osteoarthritis, stress-caused back spasms, sciatica, bulging discs, irritable bowel syndrome, nervous stomach, acid reflux, Premenstrual Syndrome, chronic fatigue syndrome, fibromyalgia and hypercholesteralemia that could be either genetic or Lyme-caused or both, and that doesn’t even cover all the growths, injuries and conditions the doctors did not even attempt to diagnose. (When I say “diagnosed,” I mean that’s what the diagnoser said to me, whether or not he or she wrote it down in my medical records.) Every one of these chronic symptoms has been described by some healer somewhere as psychosomatic. I myself have attributed them to genetics (my mother had arthritis), menopause, normal aging, overwork and stress related to poverty.
Mentally, I’ve been diagnosed with insomnia, borderline personality, manic-depression (now called bipolar disorder), early morning depression, light-deprivation depression and just plain old depressed depression. One doctor even diagnosed possible Alzheimer’s. I hasten to mention that the two counselors I’ve seen since being treated for Lyme regard all but the depression diagnosis as complete bullshit. One of those has a child who suffers from chronic Lyme and the other has a number of clients with Lyme disease, so I trust their judgement far more than I do the earlier ones, who may be assumed to be Lyme illiterates. I mention that not through any prejudice against mental illness, but lest the information provided here be summarily dismissed–it happens–as suspect, as the work of a mentally incompetent person. Even in the case of depression, I have never been prescribed anti-depressives, though I have been prescribed low dose anti-anxiety medication (Ativan) for insomnia.
Socially, in addition to negative, I’ve been called abrasive, malingering (ooo, that one hurts for an overachiever raised on the work ethic), hypochondriacal, “playing the victim,” “giving me attitude,” thinking “it’s all about me” and bitchy. That’s the short list. I have taken the social definitions about as seriously as I’ve taken the mental diagnoses, running them both through my own diagnosis of society’s diseases first. (I’m required to do this. I’m a doctor of philosophy and these philosophies need doctoring.)
So, until way late in the game, I never connected my so-called “depression” to Lyme because a diagnosis of depression has such a strong sociological component and I’m such a sociological wild card. In short, I question how one distinguishes between depression and oppression. Philosophical questions aside, though, the repeated diagnosis of depression over the years, in my case, could have been the doctors’ attempts to describe the malaise, insomnia and fatigue caused by the B-flats. Had either I or my doctors been up to speed on Lyme disease, on even the research available in the late 70s, all of these psychological diagnoses I was getting, in conjunction with the fact that I had lived in tick brush for three months, might have set off the alarm that got me at least whatever treatment was then available and alerted me to watch out for more signs down the road. It’s a social dynamic to keep in mind when seeking a diagnosis.
During the 70s, I developed heart palpitations, ringing ears, vague feelings of being off-balance and early morning insomnia, with nightmares. All tests were normal or near-normal enough not to ring bells, except the high cholesterol (325 then, 425 at worst, 201 now, after antibiotics and statins.) I had my first migraine of about a dozen I’ve ever had. My back, neck and jaw went though periods of pain and/or crunchiness. At one point, I could “snap” the tendons in the back of my neck, just moving my head in normal conversation, and have a second or two of pain and a sense of paralysis my then-husband accused me of over-dramatizing. At 35, I had a neck X-ray the doctor said “would be fine for a woman of 80.” I started having episodes of back spasms that would put me in bed for a week. They seemed to be brought on by factors I later learned to control, after I read a million brochures on managing your bad back. At least I seemed to control them until the October Collapse of 1999.
If I didn’t get Lyme in 1972, I certainly got it in 1981, when I got The Big tick bite. Half-awake, in the middle of the night, I squeezed a pimple in my groin before realizing a split-second later that it was a tick. It could have been on me 24 hours, but that doesn’t matter, because I “removed it improperly,” to quote Lyme brochures. The following day I started getting sick. By that afternoon, I felt feverish, even slightly delirious, with the feeling Lymies often describe as whole-body pain. I had a rash around the bite and it was growing. By morning, the rash went from just above my knee up to just below my bra line. Two curved edges met on the underside of my thigh –if flattened out it would have formed a half-circle. It was uniformly pink there. On my abdomen, it looked more like red streaks. (Streaks in the Lyme EM rash are now believed by some researchers to be an indication of co-infection with Bartonella but, even though the streaked rash is characteristic of Bartonella, their co-occurance with an early Lyme rash has only recently been mentioned in the literature.)
Next day, I went to the local clinic. The doctor in charge, by default our local Lyme expert, ruled out Lyme because the rash was “too big, not round enough, too uniform in color, had appeared too early and the tick hadn’t been on long enough” to infect me. I subsequently found all of these criteria to be inapplicable in my case, debatable or invalidated by later research. The initial rash can cover your whole back; it will be uniform in color until the center begins to clear (mine cleared later); it doesn’t matter how long the tick was on you if you break it as I did squeezing it and it may appear within hours if you are already infected with Lyme disease and this is an additional dose. I protested feebly through the fever. Wouldn’t it make a difference if you injected yourself with the contents of the tick? More germs or something? He was characteristically condescending about that suggestion. He said it would make no difference, but “never mind, we’ll give you 10 days of erethromycine, that will knock it right out.” Or not. It is now well-accepted that erethromycine has little effect on Lyme disease and 10 days of anything is not enough.
In the late-80s, I started having mental symptoms that could be called collectively “mental confusion.” For instance, in 1986, while lecturing on genetics, I suddenly forgot the difference between semen and sperm, closely related 5-letter words starting with “S.” I later learned that this kind of confusion is a classic word substitution, characteristic of Lyme disease. I was able to joke my way out of it, but it really shook me up. My only explanation was the onset of menopause, but my periods were fine, then. They didn’t stop until 1994, the same year I had Lyme hepatitis. Menopause, I have found, can be a major source of muddied diagnostic waters, as well as a major stress factor triggering a relapse or flare-up.
There are many weird things in the confusion category that appeared somewhere in the late 80s/early 90s–spatial disorientation, mental blocks, forgetfulness and many more. Scariest for me as a writer/teacher, was the deterioration in my spelling. I find it degrading to have to use SpellCheck. But, after one of my editors insisted I use it on my copy, I did and saw his point. Math skills, same thing. In 1980 I took the Graduate Record Exam and scored in the 55 percentile on math and logic. In 1990, I took a test to be a 4th grade teacher’s aid and completely flunked multiplication, long division, fractions and decimals. (I did work as a PT auditor at a local hotel later on, but I got to use an adding machine for that.)
During the 90s, my grown children began to notice. They would insist I said so and so and I would insist I said something else. They started teasing me for not being able to figure out technical things new to me–contour sheets with the elastic on the sides instead of the corners; battery powered car windows operated with sliding levers instead of manual winders (I still maintain the levers are installed backwards); refrigerators, telephones and sound systems with digital readouts. (The job I was fired from involved learning many new computer programs and going from MAC to IBM, on my own. I was in computer illiterate’s hell, the stress of which surely contributed to my “negative attitude” as well as my increasing symptoms.)
Sometime in the last 6 or 8 years of the century, I noticed just how neurotic I was getting, how impatient, emotional and irritable. I was returning to behavior I had had in my early 20s that I now think was caused by malnutrition, poverty and post-traumatic stress syndrome. I’ve always been a crybaby, but my reasons for crying made a lot more sense in the 70s and 80s, the years between malnutrition and late-stage Lyme disease, than they did in the 60s or 90s, when one or the other was the underlying cause. These neurotic and emotional symptoms have cleared up almost completely now, after antibiotics and holistic rehabilitation, so I have empirical proof that Lyme disease was the cause the second time around.
I began to unplug my phone for hours or days at a time, something I still do, partly because I can’t stand worrying if I’m going to have to deal with something through a Lyme fog and partly because I’m so nervous that when the phone rings, I jump out of my skin and/or become nauseous, a weird Lyme symptom described frequently in the literature. I stayed at home when I could have partied, avoided friends, terminated friendships and really began to understand agoraphobics. I did not want to go outside my home, not because of fear of the outside, but because of fear of other people. Luckily for me, I lived and still live in a community of oddballs or I’d stand out more.
The fog got so bad after the October Collapse of 1999 that for a long time, I had no confidence in my ability to speak publicly or teach. As a reporter, I made too many “slips of the pen” that got by my editor and caused me or someone else grief. My work may still have met the journalistic standards of others, but it certainly did not meet my own. Most of these symptoms, too, have gradually disappeared after two and a half years of antibiotics, but they are the ones whose return I most fear.
Then there were the strange injuries. I twisted my knee badly in 1993, and treated it with cold compresses and heat. It’s been noticeably swollen since then, painful off and on. I wondered why it wouldn’t heal. Then the other knee started hurting and swelling, too. (I realize now I probably fell and twisted my knee because both knees were already compromised by LD, which explains why the other one swelled later on.) It was the first time that I began to notice how many absolutely weird things go on in my body and how often, whenever I make it to a doctor, I hear the words “I have no explanation for this, but..” After years of serious scholarly research, I now can explain or at least theorize about dozens of “X-file” experiences I have had in the last 30-plus years, by referring to the effects of Lyme disease.
1994 was a plateau year. There was a Hepatitis A epidemic in Humboldt County. Six hundred people were diagnosed in a two-year period. Three were hospitalized. I was one of the three. (I wonder now if the other two also had Lyme hepatitis.) The day I appeared as Earth Day speaker at the University of Oregon in Eugene, hoping it would lead to some kind of a professional break, was the day I came down with hepatitis. I clung to the podium and shuffled notes and rambled on, running a fever and fighting nausea. I shudder to think about it. It was not the most sparkling speech anyone ever heard. It has seemed to me that I never really recovered from that bout with hepatitis. Those symptoms just bled into all the other ones. I was unable to work at all for eight months (county welfare again) and then barely able to work for two years. My metabolism was permanently changed—I had been what some people would call painfully thin. When I could eat again I craved fats and sweets and gained 40 pounds that lingered for years after my treatment. Unexplained weight gain can be a Lyme symptom, for sure.
Currently, the list of my symptoms is still long, often mystifying. On a list of 45 risk factors/symptoms, I checked 31 and put question marks by others. In diagnosing myself, the ones I thought least likely to be something else were too many floaters in my eyes for my age (per one optometrist who remarked on it spontaneously), numb spots/weird nerve connections called “trigger points” and random little needle-lightening pains that last a few seconds and have no visible cause.
*Although there has been no study showing Lyme disease actually causes cancer, there is a statistical increase in all kinds of growths in Lyme patients, including cancer. In addition, there are studies indicating an increase in tumor necrotic factor (an anti-cancer immunological response) in early Lyme patients. Those suggestive studies aside, there is no doubt that Lyme disease can mask cancer symptoms by imitating them, thereby delaying cancer treatment, thereby increasing the fatality rate. I, myself, have delayed in getting a mammogram because I believed the lump was a cyst caused by Lyme disease and have had the radiologist complain that my breasts were so full of cysts that he could easily miss a tumor. Nevertheless, I have had two breast biopsies that turned out to be lumpectomies. Both tumors were benign, but my own experience suggests to me that having Lyme disease can logically increase one’s probability of dying of cancer. I believe that, although there is no doubt that my friend died of cancer, the underlying cause of death was actually complications of Lyme disease.
After hearing my medical history, verifying what was verifiable in my medical records and receiving positive test results from both blood and urine tests done correctly and sent to the correct lab, my LLMD put me on 4.5 grams per day of amoxicillin and I took that for two and a half years, sometimes supplemented with Flagyl. I know from my own research that many doctors would have prescribed IV antibiotics followed by oral antibiotics, but my doctor explained that he had found, in treating more than 500 patients at that point, that long term oral antibiotics worked as well with less danger, if the presenting symptoms were not life-threatening. He said he would have put me on IV antibiotics when I was in the hospital with hepatitis, but he did not want to do that now. So relieved was I to be receiving any medical attention from a medical practitioner that knew more about my disease than I did, that I heaved a huge sigh and said, sincerely, “you’re the doctor.” I did everything he said while I was seeing him.
Then I stopped, on my own volition, simply unable anymore to face the 600-mile round trip I had to make to see him every two months, driving alone for four days and sleeping in my car. In addition, I could not get from him a clear answer as to how much longer I would be on the antibiotics. He would only say, “you can stop when your symptoms plateau out.” I needed more specifics to continue. And, it was frustrating to me that he was almost completely uninterested in any new symptom, simply stating, “oh that will go away as we treat the Lyme.” Some of those symptoms were terrifying to me, including heart pain and one Morgollan’s lesion in conjunction with a Herxheimer reaction. Plus, I had a raging systemic yeast infection, although I had been religiously taking the probiotic he recommended and “friendly yeast,” S. boulardii. One day I just said, enough, I’m going to stop the drive, stop the boulardii, stop the antibiotics and do everything I know how to do holistically to deal with remaining symptoms. (I reinstated the boulardii years later after a colonoscopy found a Candida overgrowth. I never stopped the multiple-species probiotic, on the theory that 2.5 years of high dose antibiotics probably ruined my gut activity forever.)
As of this writing (2015), have been off ABx for 13 years, following a very strict, very complicated, more or less holistic regime I developed and continue to refine. The emotional, psychiatric and cognitive symptoms are mostly gone, unless I am very fatigued. MRIs have shown some brain damage, as well as verifying disc damage. I control arthritic and fibromyalgic symptoms with nutritional supplements, sleep medications and regular exercise (walking when I could still walk, then aqua-aerobics, which allows one to exercise without the pain caused by gravity.) Without meds, I still have insomnia. It took me a year to control the yeast infection, which may or may not have been encouraged by the fact that I failed to refrigerate the probiotic as directed. (Typical Lymie mistake, take them out of the fridge at the store, put them away in the cabinet at home. Never caught it until the very end.)
I do not currently have an LLMD, but I do have a sympathetic, intelligent, open-minded and respectful primary doctor who is willing to work with me on controlling symptoms and exploring options as I unearth them. She, unlike any other non-LLMD doctor I ever had, actually READ the copy of Dr. Burrascano’s guidelines I made for her, or at least looked it over enough to fake having read it when I saw her.)
Many LLMDs, I know from my reading, would put me on IV antibiotics immediately even now, if they were treating me, since I clearly am a neurological case and still experience many symptoms. However, I have decided to return to antibiotic use only if I get much worse and have exhausted all other viable alternatives. Truly, I would have to be, again, at death’s door before I would go back to antibiotics, but I continue to insist even to my friends deeply into natural healing, that you must start with antibiotic treatment, especially if you think you are having early symptoms from a first-time bite. You have a short window during which the right antibiotic can actually cure you and save you from all the long-term chronic symptoms I have had. I believe the LLMDs who say that only antibiotics can do that. I continue to monitor ongoing research and assess how it might be relevant to my case and to hope that the activities of the many Lyme activist organizations will result in furthering Lyme research that will produce an effective treatment for late-stage Lymies like me.
Sometime in the last few years before my diagnosis, I heard my visiting adult son remark,“What’s all that groaning about, Mom?” I didn’t even realize I was groaning every time I got up out of a chair. You get used to Lyme disease over the years, if it stays chronic, undiagnosed and low-level. Lyme therefore can sneak up on you psychologically, in terms of self-esteem, if you have it long enough. I can find good sociological reasons why I failed at my profession–female, poor and socially conscious–it’s a bad combo. And, there is comfort in knowing I’m only a failure by standards I don’t validate. (Is that a quote from Oscar Wilde or Groucho Marx? Anyway, well-said and applicable.) So, I’ve been able to hold off for a long time the thought that I might be a failure because I really am a failure. But I did eventually start thinking that way.
The upside of finally having a diagnosis, as all we Lymies know, is that now instead of being a shiftless bum you actually have a disease that caused it. The other upside is that one can stop worrying about having any of the much worse diseases that Lyme is often confused with or can cause–that alone lowers stress, and stress is a major factor in making Lyme disease worse. Now that I know what I have, I also know that I am incurable, in the sense that there will always be B-flats living in my body. But, more so than ALS or MS or Alzheimer’s, there are many things that I can do to feel better, starting but not ending with antibiotics. Once you are diagnosed and treated with antibiotics, even if they don’t cure you, there is much that can be done to prevent relapses and to support your body’s intrinsic healing powers, but you have to be willing to recognize the seriousness of your disease and you may have to completely redefine your social and financial world to do it.
What has saved me, to the extent that I am saved, has been a combination of research, realism, optimism, the support of other Lyme victims and a willingness to redefine my life around the balance between my needs and the needs of others with a legitimate claim to my life (in my case, adult children and their children, only.) It’s a scary diagnosis. It’s a serious disease. It can kill you, but taking responsibility for myself at the point where the doctors wouldn’t, I believe, has possibly saved my life and certainly kept me sane and somewhat ambulatory. Had I not become educated about Lyme disease and dared to differ with the doctors I saw, I might well have followed the lead of my four friends who I believe may have died because their doctors did not sufficiently consider Lyme Disease. It takes courage to face down the establishment, but doing so, in this case, can mean your life.
Distributed by the Northcoast Lyme Disease Support Group, Jentri Anders, PhD, Coordinator. This article was originally written for Spotlight on Lyme, a now-defunct publication of Lyme Alliance. Versions of it appear online and in P.D. Langhoff, It’s All in Your Head: Around the World in 80 Lyme Patient Stories, Book II, 2007.