Improvisations in the Key of B-Flat by Jentri Anders, PhD

In scanning my TV Guide the other day 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. Not every Lymie remembers the tick or ticks that got them. I’m one of those who does.

I’ve lived in the northern California coastal woods and have been bitten dozens of times, at least, to my knowledge. I believe I’ve had Lyme disease for at least 20 years, timing it from the spectacular rash, or possibly 28 years, timing it from the summer I was attacked by tick nymphs, then got sick. I diagnosed myself, then was tentatively diagnosed on the basis of my history by an LLMD (Lyme-literate doctor) in spite of a negative ELISA test and a negative Western blot test (both blood antibody tests). I was finally diagnosed conclusively on the basis of a positive LUAT test and a second, positive Western blot done by a lab experienced in Lyme tests.

On state disability for a year, awarded on a diagnosis of fibromyalgia, I now exist on Social Security Disability awarded on a diagnosis of I know not what, probably depression. I consider myself to be retired from a checkered career that included both journalism and teaching at the college level. An anthropologist by profession, I got my doctorate too late in life to be competitive in the academic world (46, I’m 58 now), but am highly qualified to do scholarly research, including literature in the biological sciences. As a social scientist who has taught “Social Problems in Western Society” several times, and unlike many other Lymies, I am surprised by absolutely nothing about the Lyme political situation. My attitude on that is this: It’s 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 about what is happening to me. All but a handful of the many, many doctors I’ve seen over the years have treated me as if I were nuts and/or lying, ie, a hypochondriac. That matters to me, particularly since all my husbands took the doctor’s approach over mine and accused me of malingering. I chalk up two of my four divorces to Lyme disease, at least in part.

So, because the gold standard test has not yet been invented that can convince the medical establishment that I’m not a liar, I get to have a potentially terminal disease involving lots of pain, while my mind rots. (Ever see the movie 2001? For those who have, a quote. “I can feel it, Dave, I can feel it.”) Meanwhile, I can listen humbly while other people, specifically the doctor who misdiagnosed my Lyme rash, tell me I ought to get more exercise or go talk to my minister. And, please, don’t tell me you get more flies with honey than vineger, because I am really mad about this and the time for honey is long past. If you think I’m exagerrating, don’t forget Lyme can kill indirectly as well as directly, by adding stress to other medical problems and by masking the symptoms of other fatal diseases. A good friend of mine, a chronic Lyme victim, died of breast cancer a few years back. She found the lump too late because it was masked by fibrocystic breast disease, which can be caused by Lyme.

Better-read Lyme patients than myself tell me I have a moderate case. Compared to many, that’s probably true, but so far in my research I have come across only two other people who have had it as long as I think I have and neither of them got rid of either the B-flats or their symptoms permanently. (B-flat is a musical reference I use to amuse myself. It is my pet name for the Lyme bacterium, Borrelia bergdorferi, abbreviated Bb. This is also a way of abbreviating the musical key of B-flat, a key I find hard to play on my fiddle).

Apparently, nobody really knows if I can, at this point, get rid of the B-flats. I’m just hoping to get myself some good, long periods of remission during which I plan to make a real nuisance of myself in the medical community , countering as much as possible the complacency about Lyme disease in Humboldt County. One thing is for sure--having chronic Lyme disease and trying to hold down a fulltime job at the same time is a prescription for death by stress.

These last two years have been a nightmare, as I have tried to keep body and soul together on unemployment benefits, charity, freelancing, temp and PT work, in between bouts of being sick, while trying to get state and federal disability. In September1999, I broke. I was under great stress at the time, doing an insane commute to the only part-time job I could find, doing lots of things that were the opposite of healing and taking the maximum allowable dosage of Tylonal every day (look out, liver, here it comes). I got up one fine morning and found that my legs would not hold me up. I was in great pain, back, neck and legs, and my knees had buckled. I found myself on the floor, able only to crawl. I was then in bed for a week taking the maximum dose of Percocet and getting up only to go to the bathroom and grab something from the fridge to eat and drink in bed. (I live alone.) Even “in traction” (spine straight, knees and neck supported with pillows), trying hard not to move because movement equaled pain, and drugged as much as I could manage, I could still feel it. I realize now, after antibiotics and after starting a serious anti-Lyme symptom protocol, that the September Collapse also included triple-vision and Lyme fog, but I was too preoccupied with pain and in too much of a Lyme fog to realize it at the time.

I had at that time no doctor, no insurance, no savings, no job and was looking in vain for a less expensive apartment. Fortunately, the clinic nearest me took fees on a sliding scale. The doctor who prescribed muscle relaxants and painkillers for me agreed with my suspicion that this might be Lyme disease, but she leaned more toward sciatica. Her assistant suggested I either had a herniated disc or was a junkie faking pain to get opiates. What I got that actually helped was free Celebrex samples. Other anti-inflammatories were out-of-the-question, given my longtime acid reflux problem. The Celebrex got me out of bed and reduced the longtime swellings in my knees and ankles, but I’ve been taking it every single day for over a year. It is now losing it’s punch and I’m very worried about my liver, especially since I was hospitalized in 1994 for hepatitis. (Lyme hepatitis? they said Hep A at the time, but I have since tested as not being immune to Hep A. No explanation for that.) Liver profiles show no liver damage, but, gee, I’ve kinda lost my faith in the infallibility of lab tests after this Lyme experience.

When I was well enough to sit at my computer, I got on the Internet, visited all the wonderful Lyme support group websites, as well as the government ones, did a bit of emailing and finally put it all together. Realizing I may well be really sick the rest of my life, I moved from Santa Rosa back home, to Humboldt County CA , and started trying to treat myself while searching for an LLMD who would take me. The one nearest me and to which I was referred by a Lyme support organization, refused to take me because of my negative Western blot. That came as quite a surprise, since I thought Lyme-literate meant aware of the limitations of the tests. He sent me to an LLMD located in the area from which I had just moved, 300 miles from where I now live. I did manage to get myself some Doxicyclene (30 days) and some Biaxin (8 weeks) by convincing a PA, also a Lymie, that I had enough symptoms to justify a course of antibiotics. (Some things got better while I was taking them, some things got worse and new things appeared. I think I had a Herxheimer reaction, but since I had no LLMD at the time, I can’t be sure.)

I also began using the (very) hot tub of a friend, one of the two other Lymies I mentioned with over 20-year cases. I believe it played a role in those things that got better. My friend swears it is only his hot tub that is keeping him alive and I have wondered if what held off my collapse for so long was the fact that I acquired a hot tub habit while living in Japan in the 60s and took a hot bath in a normal tub every day for years. My symptoms got worse when I moved into a situation where I did not have a tub. It’s worth pondering, anyway.

I diagnosed myself by compiling my medical history chronologically from records and memory and comparing it to the medical literature. This was not easy, given the many clinics and doctors I’ve had and the many places I’ve lived in the last 30 years, not to mention the attitude most doctors offices take when you try to get a copy of your records, but I persisted. Californians, be aware, you have a legal right to a copy of your medical records, get a lawyer if you have to. Most useful to me in the medical literature was the late Dr. John Bleiweiss’s article on diagnosis and treatment (it’s at www.cassia.org) and Dr. Brian Fallon, et al, The Neuropsychiatric Manifestations of Lyme Borreliosis (on several Lyme organization websites). Polly Murray’s book The Widening Circle (available through Humboldt County library) was very valuable as a description of the on-the-ground experience, as opposed to purely medical publications.

A literary version of my medical history follows: In the summer of 1971, I camped out in tan oak and madrone leaf litter in a tent with holes in the floor. This, I know now, is the exact habitat of the Western black-legged deer tick, the Lyme-carrying tick in California, in its nymph stage. I think I first was infected then. All summer, I was pulling tiny, barely visible, tick nymphs (tick babies) off me--makes you wonder how many you didn’t see. Later that decade, when I was kicking around the idea of Lyme disease as an explanation for joint pain, I dismissed it because I could not imagine, as body conscious as I was then, that I could possibly have had even a nymph on me for the requisite length of time (most sources say 24 to 48 hours), and not know n 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 (that one was not the Lyme-carrying species). I also know that, even though I’m one of those people who finds the tick when the bite starts itching, not everyone does feel them and maybe I don’t always feel them. Not only that, but some experts think the tick can inject you with B-flats in as little as 4 hours and if you “removed the tick improperly”, like maybe scratching it off in your sleep, it doesn’t matter how long it was on you, you have just injected yourself with the contents of its body.

Since the Summer of Ticks, I’ve been diagnosed (that is, told that I have, whether it was written down somewhere or not) with osteoarthritis, bursitis, stress-caused back spasms, a possible herniated disc or two, sciatica, IBS, GERT, PMS, fibromyalgia, chronic fatigue syndrome, Hepatitis A and numerous urinary tract infections. Also familial hypercholesteralemia. I’ve come across no one who claims Lyme causes high cholesteral, except through the inactivity that results from pain. But there haven’t been many studies on this and I wonder if Lyme is what keeps it from coming down, since my father, mother, brother and sister all responded well to Mevacor and Lipitor, but I haven’t.

Mentally, I’ve been diagnosed with borderline personality, bipolar -one (that’s the mild version), post-traumatic stress syndrome, early morning depression, light-deprivation depression (SAD) and just plain old depressed depression. Socially, in addition to negative, I’ve been called abrasive, bitchy, thinking it’s all about me, perfectionist, critical, emotional, volatile, “giving me attitude,” and “playing the victim.” Some of these are documented as characteristic personality traits of chronic Lyme victims, lumped under labels like “high baseline irritability”. Not surprisingly, I’ve isolated myself rather well from people in general--another symptom, according to Bleiweiss.

I’ve taken both social and mental diagnoses with a grain of salt, running both through my social scientist/journalist’s analysis of society’s ills first, as well as my analysis of the level of objectivity one might expect from the diagnoser. In general, there are many situations in which I question how one distinguishes between depression and oppression. On the other hand, all those observations may well have reflected the emotional lability and fatigue of Lyme disease, not to mention perfectly normal responses to constant pain and the frustration that results from feeling one’s mind crumble.

The September after the Summer of Ticks, I was treated for a urinary infection with back pain. That may have been my first Lyme symptom. It seems to me I was sick and depressed, one way or another, all winter, but there were plenty of explanations. At least one friend worried that I was suicidal. (Semantics again, I have had periods when I think of suicide as a rational option after all others have failed, but then reject it because you forfeit your right to suicide when you have children. You brought them here, you have to stay here as long as they need you, period.)

During the 70s, I developed heart palpitations (lowered my coffee intake), ringing ears (was playing in a rock band, but the ringing happened days after practice), vague feelings of being off-balance (I sat down on the ground once to keep from falling); occasional sensations of vibrating (this one was so nutty I kept it to myself) and early morning insomnia with nightmares (well, I had nightmares as a child, maybe they’re just coming back). I had my first migraine. My back, neck and jaw went through periods of pain and crepitis.

At one point, I could “snap” (that’s what it felt like) the tendons in the back of my neck, just moving my head in normal conversation and have a second or two of pain and the sensation that I was paralyzed for a split second. I had a neck X-ray the doctor said “would be fine for a woman of 80.” I was 32. 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 reading a million brochures on managing your bad back. At least I could point to precipitating factors, until the September Collapse. That one and a smaller episode a few months before seemed to come right out of the blue, aside from the general stress I was under from having been fired from a professional job for the first time in my life.

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 skin bump I thought was a tiny pimple in my groin before realizing a split-second later that it was a tiny tick. Doesn’t matter how long it was there, I clearly “removed it improperly.” The following day, I started getting sick. By that afternon, I felt feverish, even slightly delirious. I was definitely not thinking clearly. Every muscle and joint in my body was aching. I had a rash and it was growing.

The next morning, I went to the local clinic, where the doctor ruled out Lyme disease because the rash was “not round enough, too uniform in color” and had “appeared too early after the bite.” I remember that, at peak, the rash went from just above my knee to 6 inches below my bra line. Curved edges met on the underside of my thigh--if flattened out, it would have been perfectly round. On my abdomen it looked more like streaks. I can’t be sure what size it was when the doctor saw it. The records say it was 3 cm in diameter, but I ‘m sure it was larger than that. As for “too uniform in color,” the bull’s eye part comes from central clearing and that happens over time--I hadn’t had it long enough to clear. As for appearing “too soon after the bite,” according to the American College of Physicians, the rash can appear within 1 day. Polly Murray observed that Lyme symptoms in her family seemed to occur within hours of a tick bite received by someone already infected. She doesn’t say if that’s a Lyme tick, an infected Lyme tick or any tick. However, I reasoned later, if that is true and I was infected in 1972, it would explain why early-stage Lyme symptoms appeared so soon in my case.

The doctor, by default our local Lyme expert, pooh-poohed my worry about Lyme disease, but prescribed 10 days of erethromycin “just in case, that will knock it right out.” It is now well-known from subsequent research and accepted by the most conservative Lyme doctors, that 10 days is not long enough, even if I had not already had Lyme for 10 years. What the erethromycin probably actually did was screw up the Lyme blood tests I had years later, so that I got negative results until the tests were sent to a lab more hip to Lyme testing.

In the late 80s, I started having mental symptoms. While lecturing on genetics, I suddenly forgot the difference between sperm and semen, an absolutely classic Lyme word substitution. I was able to joke my way out of it, but it really shook me up. My only explanation for it was menopause, but that was 1986, my periods didn’t stop until 1994 (right before the hepatitis). There are many wierd things in the neuro-cognitive category that appeared somewhere in the late 80s/early 90s: topographic disorientation, mental blocks, forgetfulness, getting tongue-tied, losing my train of thought and many more. Scariest for me as a writer/teacher was the deterioration in my spelling. I find it degrading to use Spell Check, as my editors began to insist I do. I also got clumsy, tripping over curbs, my feet getting out of synch with my head while descending stairs, putting things on the edge of the table and thereby spilling them, knocking my glasses off on cabinet doors that suddenly appeared too close to my head. I actually gave myself a black eye by missing a doorway and walking into the side of it. It was dark and I hadn’t turned the lights on, but it was my own home. I’d walked around it many times in the dark. Embarrassingly enough, I planned to attend a workshop on domestic violence the following day and had to skip it because I knew absolutely no one there would believe I really got a black eye from a doorway.

I began to unplug my phone for hours or days at a time because of intolerable anxiety. Not only is my startle reflex so exagerrated that I jump even if I know the phone is going to ring (one of the problems I was dealing with when I got fired), but I can’t stand worrying that I’ll have to speak to someone who will not have patience with my word recall problems and my stammer. I stay at home when I could party, avoid friends, have terminated friendships and have really developed a lot of sympathy for agorophobics. I love the outdoors, but sometimes I can’t bear the thought of seeing any people. Luckily, I live in a very tolerant area near a university, or I’d stand out more.

Then there were the strange injuries that didn’t heal. You twist your right knee and it swells, then your left knee swells! Slight bump to the back of the hand produces agonizing nerve pain that lasts for months. Touch a spot in your wrist and you can feel a worm wiggle on the knuckle of your ring finger. I had a nerve conduction test for carpel tunnel syndrome in my right hand and it revealed nerve conduction abnormalities in my left hand. (Such minor anomalies in both nerve conduction tests and ECG’s can be subtle indicators of Lyme disease, even though doctors will dismiss them because they don’t indicate the problem for which one was being tested.) Doctors were constantly saying, “I can’t explain this, but...” and “let’s just watch it for a while.” My lack of immunity to Hep A, when I was hospitalized with it for 3 days is one of those. Sometime in the last few years I heard my visiting son say, “Mom, what’s all that groaning?” I didn’t realize I groan and limp every time I get out of a chair. My symptoms accumulated over such a long period of time and some of them were so subtle that I am grateful that my legs finally collapsed under me for a couple of days, so that I had to stop and say, “Look, something is wrong with you and you must find out what it is before it kills you.”

Currently, I have worked out a sort of a program for myself in addition to the antibiotics and Flagyl prescribed by my LLMD. After some serious bureaucratic battling, I was able to stop working (big one) so I can, at any given moment in the day, do just exactly what I think my body needs; I try to walk every day I can; I’m taking all the nutritional supplements on Dr. Joseph Burrascano’s list (he has a website) and then some, plus herbal remedies (well researched); I take Trazadone to sleep, but may switch back to Valerain root; I have reduced all extraneous social contact with people who aren’t sick, in an effort to avoid unnecessary emotional stress. I searched diligently and found a local primary care doctor who is not especially a Lyme expert, but treats me with respect (another big one). I’ve alerted my family that I consider myself seriously ill and I’m going to expect tolerance for my apparent eccentricity even if I don’t look very sick to them. I am also pursuing spiritual practices abandoned long ago in my younger days, only because I was too busy, and these are helping me stay this side of sane.

I am filled with worry about financing my recovery, since I am on MediCal and the LLMD does not accept it and even if he did, it’s very unclear how long MediCal will pay for antibiotics. If I should need an IV later, that requires home health care and I doubt MediCal will pay for that. But I’m trying to take it one step at a time. I have three sources of hope. One is that my LLMD does not think I will experience heart block, paralysis, meningitis or any of the catastrophes of Lyme disease. According to him, the Western variety is not as virulent as the Eastern variety, where stories of such crises abound. I have not heard that from any other source. In addition, he claims, if I’ve had it so long and I’m not any sicker than I am, then my body must be fighting it pretty well. Rationally, this one looks to me like a thin straw being offered as better than nothing, but I’ll cling to whatever straws are available. The other is, as he also pointed out, research is ongoing. Antibiotics may bring me remissions and enough of those, maybe I’ll still be alive when the cure is found.

A version of this article appeared in the May/June 2000 issue of “Spotlight on Lyme,” the newsletter of Lyme Alliance, Inc., PO Box 454, Concord, Mich. 49237.