This is a long story, and I don't know how to make it short. It was born from a journal I began when I was descending into the underworld of a malady which challenged me to a profane and mysterious duel. It began as a way to keep myself sane. But the ending is definitely still up in the air.
On the morning of May 19, 1998, as I stood in front of the bathroom sink brushing my teeth, I suddenly lost the use of my right arm and hand. A quivery, ticklish feeling traveled like lightning from the shoulder to the fingertips; paralyzed, the arm dropped down into the sink, hit the enamel hard and broke the skin. I didn’t really think I was having a stroke - I had no other symptoms at the time, and no risk factors - so, stoic and thinking positive (which hasn’t always been the case), I slipped the arm into a makeshift sling and went to work. Shortly after arriving there and explaining things to my worried co-workers, I felt a similar (though much lesser) weakness and shakiness in my left arm, and then painful spasms that started in the neck and ran down the entire outside of both arms, effectively pinning them down, completely helpless. When I broke out into a cold sweat and felt nauseous - who wouldn’t? - a friend insisted on giving me a ride to the nearest walk-in medical clinic. With mixed feelings, I took her up on it.
After waiting three hours, a physician’s assistant and a doctor checked me over, but could make no sense of the problem. Not surprised, I went back to work, but couldn’t use my right arm and hand at all - without the sling, the limb just hung limply by my side. I had no strength or motor control in my hand; I could not even grip a pencil, much less write. My arm was too weak to hold up a thin piece of paper. This was getting mighty alarming. The next day, I was able to get an appointment with a local physician who, I guess, fancies himself a neurologist. He sent me for x-rays of the cervical spine, diagnosed a pinched nerve in the neck, and prescribed physical therapy - though he had no useful suggestions as to how I’d get this without any medical coverage!
Since I knew there was a PT department at the local hospital’s satellite clinic and the hospital has a “charity care” fund, I applied for this and was accepted. My arm, though slightly improved, was so weak I could not lift it by itself to hold it on my stomach during traction, and I had an uncomfortable sensation of a “band” pulled tightly around the arm halfway between the wrist and the elbow. I could eat with the right arm only if I supported it with the left; I could type with the right hand only if I used the index finger to control the middle finger. I had a “tired” feeling between the shoulder blades, as if my neck would not support the weight of my own arms. My right hand was cold and purplish; I had a “ripping” pain along the outside of the right forearm; the ligaments in the back of my right hand quivered and rubbed. Whatever was happening here was entirely unnatural.
A former Fine Arts major in college, I was now severely uncoordinated. Fastening buttons with my right hand was out of the question, nor could I manage to write anything more than my signature, and only then with enormous difficulty. My fingers simply wouldn’t work; I couldn’t turn a page, tie a bow, or pick up a coin from a smooth surface, even if that coin were a gold doubloon! As a stroke or accident victim might do, I was trying to compensate with the lesser-affected left side. All at once I was tremendously compromised, and very frustrated, not to mention worried.
Most of the time I held my right arm up in front of me, fist balled like a claw and facing inward, and was very self-conscious about it. How could I answer so many people’s questions about how I’d “hurt” my arm? How could I allay the fears of those who cared about me, when I didn’t have a clue as to what was happening? As a library technician who used her arms and hands continuously, I began to feel completely useless to anyone. I wasn’t certain that the physical therapy was helping me, either, but I was loathe to give it up, since aside from shrugging his shoulders or raising his eyebrows and saying “I have no idea,” this was the only help my “neurologist” was providing.
Within just days of the incident with my arm, however - before I had even started the PT - odd things started happening to my legs. I had numbness and tingling in both calves, and very little feeling or strength in the right leg and foot - I could barely feel the pedals or pick up my foot when driving. Often, my ankles had a stiff, "foreign" feel. The sensation was like limbs that had “fallen asleep,” and now were half way back again - the most uncomfortable stage; instead of lasting just a moment or two, however, this was constant. When the tingling progressed to pain and I couldn’t sleep or even rest, I went back to the doctor. This, as I’ve said, proved completely fruitless. All I got was the brush-off. (Why do doctors so often make you feel that it’s a foreign concept to seek aggressive help when you’re feeling ill, and to do whatever you can to get better? Makes you wonder why they’re in business to begin with.)
With no other recourse, I simply hoped everything would go away, as so many odd things I’ve had have eventually done. I concentrated on the beautiful late-spring weather, packing for a long-anticipated, long-term move to Southern California, and making myself as productive as possible at work. But in the mirror my eyes looked frightened, and my face was strained. Around this time I saw my family doctor, a really sincere guy who figured the leg problems were due to compressed disks in the back. Additionally, a knee problem had arisen by now - both knees were crunching loud enough for me to hear when I climbed stairs or arose from a sitting position, and the left knee wavered between stiffening up completely and feeling as wobbly as Jell-O. Sometimes I felt like I had to hold this knee in place when I drove! This, my doctor said, was no doubt arthritis, a fact of life once we’re over 40 - which I was, barely. But how does arthritis happen in the very blink of an eye?
Then, by early June, the entire left side of my face went numb, as if I’d been shot full of Novocain. This went into the left side of the jaw and along the tongue, up the cheek, and toward the nose. My chin hurt, and felt “ticklish” - as if something were blowing on it. I had trouble swallowing, and a “gagging” sensation on the left side of my throat; I couldn’t move my mouth properly and had difficulty talking. My jaw was clicking audibly when I spoke or ate. In addition to this, my limbs, head or body would sometimes jerk convulsively - not so violently that anyone else would notice, but jarring and unmistakably abnormal. (Oddly, this happened only when I was resting!)
At this point, I decided to pursue these symptoms with another doctor, and made an appointment with a neurologist whom a relative with back trouble had recommended. (I wasn't even sure if a neurologist was the right specialist to see, but it sure seemed it at the time, though I was only guessing.) To try to get the most out of this appointment - I had saved up my paycheck for this visit - I summarized everything on paper, and handed it to the young doctor to read before he examined me. He suggested a brain MRI to rule out MS, and if that were negative, a cervical MRI to check the peripheral nerves.
A few days after the test, the doctor called me at work. By now, newer and even more unrelenting, exhausting symptoms had surfaced: I kept looking down at my upper arms to brush off the hair or cobwebs on them, and realized there was nothing there. Nonetheless, I had unrelenting “crawling” sensations just below the shoulders, and, over Independence Day, had developed what would prove to be one of the most difficult, most disheartening, most trying problems of all: around my mouth, all around the lips and down into the chin, a vibrating, biting, humming itch, as though there were a thousand bees swarming over my lips and the majority of them were stinging. My mouth literally throbbed with pain; under my bottom lip, the skin began to be worn raw by my constant rubbing at something that was there, but that couldn’t be seen. One area felt as though someone had taken a pointed instrument, heated the tip in a burner, and was now jabbing it at my lip. Even my nose hurt and tingled, as though it were frostbitten. On top of this, I started to have a peculiar urinary incontinence - hardly making it in time - and thought "God, I'm too young for this!"
By this point, almost two months after whatever it was first hit, I was going downhill. I was putting in a day’s work, trying to be normal about it, then going home, wrapping up in an afghan in 90 degree weather, and violently shaking. I had been on a diet, but was now losing weight rapidly, and could barely even choke down a popsicle. I prayed, desperate, when what I wanted to do was put my fist through a wall. Normally strong and good-natured, I sat in my supervisor’s office and sobbed on the phone to this neurologist - “If I have to live like this for the rest of my life, I think I’ll lose my mind. Do you think there is anything you can do to help me?” The brain MRI was normal, he said, ruling out MS (though I myself never felt that this was a real probability, even though I did have some rather suspect symptoms). So what now? “Well,” he answered, polite but chilly, “I don’t really see any need to pursue things - I think it’s psychosomatic.”
The room grew dark; my heart turned over, frozen, in my chest. My eyes, had anyone seen them, may have looked like they’d caught fire. This doctor never had a chance for a rebuttal. “This is a not a road I’m interested in going down,”I shouted. “I am ashamed of you, ashamed that doctors are still graduating from med school with these ridiculous ideas. As if I have time to sit around and think up ways to make myself sick! You are mistaken. I know my body. I know there’s something wrong, but anyone who thinks it’s in my head is a whole lot sicker than I am.” (Later, I read in a book that when “middle-aged” women present with a written list of symptoms - especially vague neurological symptoms, such as difficulty swallowing, double vision, and numbness in the mouth - it’s common for doctors to assume their complaints are psychosomatic. Well, I’m guilty of all this, but I’m also guilty of disliking beets, having small hands, and not knowing every verse of “Just Like Tom Thumb’s Blues.” In other words, what of it?)
Backing down, the doctor offered to send me to Yale or UConn for a consultation. “I’d hate to think you might have something terminal that I’m overlooking,” he said condescendingly. “My office will be in touch.” I never heard from him, of course, except to get a bill for a balance of $90, which I returned with a letter stating it wasn’t my practice to pay for services not rendered, and I hoped he could serve his subsequent patients better; his mistake was not in stating his opinion (which he did both brazenly and bravely); his mistake was in not believing me when I told him he was wrong.
Frantic at this point, I called Columbia-Presbyterian Hospital in Manhattan, where my mother had been going for help with neuropathy. I couldn’t get in to see her doctor, but was given the name of another neurologist there. This doctor mentioned brachial plexus neuritis, something also suggested by an RN who did volunteer work at our library (the brachial plexus is a bundle of nerves - literally - just below the shoulder). The only problem was he couldn’t tie the arm thing and the leg stuff together, much less the mouth. Well, that’s Occam’s Razor. We all look for common links to make our jobs that much easier. What I didn’t know at the time was that there was, in fact, a glaring commonality to all these problems, and to others as well, but it would be a while longer until we found it. The neurologist sent me for the cervical MRI suggested and then dismissed by the previous doctor, but aside from some bone spurs (cervical ribs), nothing untoward showed up. With a sinking feeling, I got to the library early and devoured the Merck Manual, a book I'd never picked up before in my life. Was it vascular strokes? Thoracic outlet syndrome? (This was the working diagnosis for purposes of physical therapy.) Some type of inherited sensory neuropathy? Could be. But it was anybody’s guess.
My legs had become so painful I could no longer stand in the shower; my ankles and the long bones in my calves and shins burned and seared with pain - not an ache, but a feeling that someone had scraped the skin away, thrown salt into the raw tissue, then set it on fire! The “fat” part in the back of the calves was virtually untouchable. In despair, I resigned my job prematurely; though my supervisor had done everything humanly possible to accommodate me, I was dazed with this physical assault, and falling to pieces. I dragged myself to bed, rubbing liniment on my legs and holding ice to my mouth, and woke up angry in the night that I hadn’t just died. Even the thinness of a sheet was too painful for my legs - never mind jeans. At times, my feet felt hot, as though I’d stepped barefoot in fresh tar. Often, my legs and the bottoms of my feet would “pulsate” - as if someone were snapping their fingers all over, stinging, from the inside out. My right leg and foot were twisted, curved inward, spastic. I was walking on the side of my foot - without shoes on, I could not walk normally.
It was all completely baffling, and friends, family, and the library staff and patrons were appalled, sympathetic, and tremendously puzzled. One after another, they began to rise to the occasion, trying to find ways to help me - a competent, funny person who was falling apart before their eyes. “Are you sure,” they asked - one by one, they asked - “Absolutely, positively certain that you don’t have Lyme disease?”
I had asked my family doctor about Lyme disease. “Is it possible,” I’d asked him, “That once you have it, even if you’ve been treated, it could stay in the body?” He was adamant. “Absolutely not,” he said. “Once you get the treatment you’re cured. Besides, your symptoms don’t suggest Lyme disease.” I believed him. I wanted to believe him. Would you want to entertain the possibility that there’s this terrible illness out there that you live in a pandemic area for, that almost everyone you’ve known has had at least once in the last ten years, and that it can’t be easily eradicated, no matter the stage? I have two wonderful nephews who live in a heavily wooded lot, for Pete’s sake! So I believed him, especially when the blood test I’d asked for (if only to satisfy everybody around me) came back negative. “Nope,” I said despairingly - “Had it once, guess it was cured.”
But one person wasn’t satisfied with that answer - one person who, like me when I’m functioning better, doesn’t take kindly to ambiguity. She gave me the name of a local fledgling political activist - a wife and mother who works part-time, and who had finally been diagnosed with (and treated for) Lyme after ten years of being terribly ill. I waited several weeks until I had some time alone, and then, still convinced that Lyme disease wasn’t anything for me to hang my hopes on, made a call. I ended up talking to this grassroots organizer for two-and-a-half hours; the very first thing she asked me was, “What’s your story?” For that, I realized I had to go back almost fifteen years. I took a deep breath, and cleared my throat; “It started,” I told her, “One day in June of 1984...”
One day in June of 1984, I woke up feeling crummy - that “off” feeling you get when you’re coming down with something. Within a few days I developed a nagging headache and figured it was some type of virus or “summer flu.” I was young, strong, and (up until now at least) healthy, and wasn’t about to let something like this keep me down. Heading home from an errand one night, however, the headache turned fierce - I could barely keep my eyes open well enough to drive. By the time I reached my house, I was blinded by pain and had chills so violent they shook my whole body and made my teeth chatter uncontrollably. I was astonished to find that my temperature was 104°!
Within hours, there was no part of my body that didn’t ache, from the back of my neck down into the shoulder blades, along both arms and into the hands and fingers, radiating down the forehead and chin into the chest and around to both hips, into the thighs and calves, all the way to the ends of my toes. Even my throat hurt, and my ears were ringing incessantly. By the next day, I had started to vomit. I needed a doctor, but was too sick to go to one (!) and besides, my family physician had recently retired. Finally, my mother got in touch with a young GP who agreed to make a house call.
The doctor arrived and checked me over; he said he wasn’t sure if it was viral or bacterial, but I was definitely “working on something.” He opted for a wait-and-see approach. In my memory, I can still see him standing there at the foot of the couch with his black medical bag, chatting congenially with my mother. He represented hope - whatever it was I had, however ill, surely there was help. How odd that the last memory I have of being a “well” person took place when I was so sick! In the blink of an eye, my life was changing just as surely as if I’d been shot with a powerful bullet. Though no one knew it at the time, I would never be the same again.
Two days later I was feeling no better, and on top of this, was having some difficulty breathing. My mother, who had faithfully been giving me Tylenol and cool compresses and holding a basin for me to throw up in, called and asked the doctor to come back. While we were waiting, mom noticed me scratching my left thigh incessantly. “What itches you there?” she asked. “I don’t know,” I said miserably, “I’m too sick to look. You look.” She did. And then from her lips to God's ears. “It’s a red rash,” she said, “Funny - it’s perfectly round, with a little bump in the middle - like a bull’s eye. I bet it’s some kind of bug bite. I wonder if it has anything to do with you being so sick?”
We showed the rash to the doctor when he got to the house. “I thought as much,” he said, and immediately diagnosed a rather severe case of meningital Lyme disease, although in his notes from then, he refers to it as a “ricketsial illness from a tick bite.” Lyme was (as far as anybody knew back then) a fairly new disease about which not much was known, but which was appearing in our part of Connecticut (just across the river from Lyme) in epidemic proportions. I actually felt a little smug to be the first one in the family to have this interesting, “happening” new affliction.
The doctor prescribed a 7-day course of Doxycycline. It took a couple of days before I was able to keep a pill on my stomach - I was close to being admitted to the hospital for “fluid replacement and parenteral [intravenous] antibiotics,” per the doctor’s notes (would that this had only occurred!)- but when I was finally able to keep the Doxycycline down, I began to feel rapidly better (although I had just twelve pills in total - yup, 600 milligrams altogether). Things were complicated by a sudden, dramatic episode of otitis - fluid in the ears and Eustachian tubes - but within a week, I was completely back to normal. I was 28 years old. I thought all was well. I was beginning a journey into Hell.
In July I started a demanding new job, and no one could have guessed I had ever been so sick. But I did notice a lingering aching, stiffness, redness and swelling in the toes of my right foot. I assumed it was a small “leftover” from Lyme, and since it didn’t bother me much, I didn’t give it a thought. Little did I imagine that I would soon become ill with myriad, mysterious and multiple maladies that would disrupt my work, threaten my sanity, fracture my life, and cripple me, maybe for good. I think we are all braver than we realize, but in all honesty, if I had seen the worst of the future, I'm not sure that I wouldn't have killed myself right then and there.
By the winter of 1984-85, though I wasn’t feeling ill, my hair was falling out. It fell in clumps every time I washed or brushed it, but I was in denial. I had thick, fine, glowing brown hair, cut in a long shag style; every time I used a blow-dryer, I would see more pink scalp on top of my head, and cast my eyes downward. My mother was horrified. “You’re losing your hair,” she declared. “Am not,” I argued. When you’re not even 30 years old plus you’re female, I guess you don’t want to admit that you’re going bald! Furthermore, I was planning a trip overseas, had a new boyfriend, and was just too damned busy for all this nonsense. Finally, my hairdresser expressed his concern and suggested I see a doctor. I reluctantly agreed. Still having no doctor of my own, I made an appointment with a local internist.
In light of the fact that this guy couldn’t pin down a physical diagnosis, he took the foolish way out, suggesting it was all in my head. He diagnosed stress. (This wasn't difficult, considering, as I had noted, I was 28, female, and losing the hair on my head every time I bent forward. Somewhat stressful? Yes, indeed.) Actually, I half believed this at the time - I didn’t feel particularly stressed out, but I didn’t feel sick, either, and hated to think I had some serious, hidden ailment. My hairdresser suggested I see a dermatologist. Our family has had its share of skin problems, and I called a doctor whom we’d all seen one time or another. He was mortified. “I have seen hundreds of cases of stress-related hair loss,” he told me. “This isn’t it.” Nor did it fit the patchy pattern of alopecia areata. I was sent for bloodwork, and showed a high “sed” rate - a measure of infection or inflammation somewhere in the body. “See a different internist,” he advised me, and recommended a female doctor a few towns away.
I went overseas in the summer of ‘85 just as I’d planned - to Scotland, to visit relatives and trace the roots on my father’s side. By now, however, things were simply not right. I was beginning to feel nothing short of dreadful. I was in a deep depression and in the course of a year had lost about 50 pounds - considering I’d put on a lot of weight after college, this wasn’t bad, but I was overwhelmingly nauseous, with bouts of extreme dry heaves. I kept a basin handy in the kitchen and one under my bed; at work, I’d feel my mouth fill up with saliva and run to the bathroom, hoping no one heard me retching in there. I was dizzy and felt “grayed-out” when rising from a sitting or bent-over position.
My balance was off as well - I would sway just standing still - but what was perhaps most frightening was a peculiar shortness of breath, a sense of almost having to “remember” to breathe, rather than having it be the untroubled, automatic function it would normally be. I also developed an odd sort of apnea - a sudden "gasping" for air just before falling asleep. In addition to this, sometimes my breathing would seem frighteningly slow - the opposite of hyperventilation. Still, I was working, enjoying a social life, and remained firm in my conviction that eventually - soon, I hoped - all of this would be straightened out and cured.
I liked the woman internist, who did more bloodwork and sent me to countless specialists for other tests. Though she couldn’t figure out what the problem was, she was scornful to the point of anger at the thought that this was psychosomatic or hypochondriacal. She asked me to come back for regular monitoring of my symptoms, hoping that eventually, something would “declare itself.” Before long, though, I was beginning to question my own sanity. As well as generalized anxiety and intrusive, obsessive thoughts, I started having panic attacks - something I’d never had before getting Lyme disease. These were classic, with the rapid heartbeat, tight chest, feeling of doom and unreality and of losing control, and they hit at random times in random places - my car, my office, my own living room. I had an extreme, over-sensitive reaction to familiar noises (an exaggerated "startle reflex")- the sudden ringing of a phone would cause me to jump and gasp, my heart racing madly.
The kicker, though, was the virtually unexplainable difficulty in writing, typing, speaking, and thinking. I’d use the wrong letters, hit the wrong keys, stutter, reverse things, and find myself unable to say the right word. Everyone does this occasionally, but this was consistent and unrelenting. I felt like something poisonous had taken over my brain, and it was a lot more than stress or a broken typewriter keyboard.
In early winter of 1986, while sitting at my desk, I had the first of what I call my “seeing stars” attacks - a buzzing sensation in my head, being able to see and hear but not speak, almost as if someone had come up from behind and hit me with a baseball bat, but no pain. These were seizure-like, lasted less than a minute, and came without warning. When I told my doctor what had happened, she admitted me to the hospital for a week of tests and observation. (Oh, those good old days when doctors could do stuff like this.) I got rested, but we got nowhere.
By 1987, I had seen three internists, a dermatologist, two neurologists, a cardiologist, an orthopedic surgeon, a gastroenterologist, a pulmonary specialist, a urologist, and an ear, nose, and throat man. Dozens of tubes of blood had been drawn; I’d had an EKG, a Holter (24 hour) heart monitor, an EEG, an MRI, a CAT scan, a visual evoked potential, an EMG (nerve conduction test), a glucose tolerance test, various ultrasounds, a barium swallow, a sigmoidoscopy, a lung scan, a pulmonary function test, a test where water is squirted in the ears to simulate vertigo, and several other things I don’t even remember. I was suspected, at varying times, of having (among other things) epilepsy, lupus, benign tachycardia, a brain tumor, blocked carotid arteries, ulcers, MS, mitral valve prolapse, thyroid dysfunction, diabetes, hypoglycemia, mono, chronic fatigue syndrome, and leukemia, as well as some as-yet unnamed, unheard of, unrevealed, mystical condition (which was nevertheless as benign and uninteresting as white bread, to be sure, and goodness, I'll just have to deal with it, won't I? After all, I look pretty good!) Except for testing positive for the Epstein Barr virus (which I was assured was a normal finding for just about everyone), borderline low blood sugar, a slight magnesium deficiency and that elevated sedimentation rate, everything came back normal. (And I was supposed to rejoice at this.) A far cry from the lifestyle I had envisioned for my 30's!
The instant something was ruled out, the doctors dismissed my complaints or said they were sorry but they couldn’t be of help. The woman internist was frankly frustrated. “I know there’s something wrong,” she told me, “I just don’t know what it is.” I had been told by other practitioners, sometimes cruelly and sometimes kindly, that I was either making myself sick (a 28-year-old female decides to go bald?), that I was “acting out,” (just acting like I was bald, I guess) or that I was imagining things (I was only imagining I'd lost half the hair on my head). I needed a new boyfriend/a new job/a new hobby/you name it/ad nauseum (to a person for whom there are normally not enough hours in the day). As others have done, I found myself purposely denying or not mentioning some of my more esoteric symptoms in a desperate effort to sound more credible to my physicians - when in fact the information should have been helpful to them. In the long run, I'll never know if this was counter-productive.
In the winter of 1986 I had reached the breaking point; I figured that if this was indeed “all in my head,” then someone, somewhere, ought to be able to fix my head. Desperate for help and unable to function, I checked myself in to the mental health unit of the local hospital. I stayed there for a month. This was of no benefit or advantage to me or to anyone there. The patronizing young staff spent the majority of their time having coffee behind closed doors, shacking tired patients out of their rooms and into the smoky, unventilated kitchen, and standing at a podium ringing a medicine bell. I felt that I was rapidly losing ground; something was terribly wrong, and this was not the place to start fixing it. I signed out, moved in with a friend, and was out of work for another four months. Luckily, I had good insurance and payroll protection. (Looking back, it is a miracle to me that I was able to work at all, and yet I did, and even did well, though it’s a very hazy memory to me now.)
The next unfriendly thing to hit was irritable bowel syndrome (mistaken at first for a case of giardiasis - talk about hearing hoofbeats and thinking zebras! - but, to be fair, I had in fact been camping in a remote area near the Canadian border, and drinking from and washing up in a spring) and, on top of that, esophageal reflux - often, I would wake up in the night choking and gasping for air when something went down the “wrong way” in my sleep. I also had interstitial cystitis (or maybe it was neurogenic bladder) - I’d have all the signs of a bladder infection: pain, pressure, frequency, but a negative test. I developed asthma and began to have constant small nose bleeds and nasal and sinus infections. I had an inexplicable dry, hacking cough - I could not take a breath without coughing furiously. I had spasmodic bronchitis, and literally felt my chest and throat close up when I coughed. I had laryngitis - not the kind that makes you lose your voice, but the kind where your vocal chords swell and you can barely breathe. Strange skin rashes appeared in different places, especially red, pin-prick hemorrhages on the arms and legs, and bruises the size of small dinner plates. Friends and family couldn’t help but notice these big black-and-blues, and they were often very scared at the sight, thinking I was bleeding internally from some undetected, life-threatening disorder. And by this time, I hardly cared.
I was hit with a low-grade (99-100 degree) fever which lasted for at least a year. I had chest pain, rib cage pain, and painful breathing, which was diagnosed as pleurisy. My knuckles were swollen, painful, and very red (a doctor commented that my hands looked “awfully white;” in contrast to my knuckles, of course they did!) I had a bad stiff neck with breathtaking, "stitch"-like pain radiating through the upper back, as well as sciatic nerve pain and a sensation of a tourniquet wrapped around my right leg. My female internist looked at me strangely when I made a casual comment about "those jabbing, shooting pains we all get;" bewildered, I realized then that we don't all get them, but I did. I had occasional Reynaud’s phenomenon, and severe pain in the balls of the feet; I could barely make it downstairs in the morning - it hurt to put any weight on my feet at all.
I felt so ill and so terribly nonplussed; before, any time I’d been sick, I’d gone to a doctor and gotten treatment, or gone to bed for a day or a week and gotten up, all better. This wasn’t happening now. I was spending the majority of time considering that this must be how it feels when you’re run over by a truck. I was turning down invitations from friends and family (who, to their credit and mine, never doubted for an instant that I was in anguish), saving my energy for work; I had to make a living, but any plans of striking out on my own or forming any permanent relationships were blurs in the background. My life was on hold; my existence was one of savage mystery.
Finally, my female internist decided to test me for Lyme disease. “I wonder if maybe that time in 1984 it wasn’t completely eradicated,” she said. In some excitement, the doctor’s office called to say the test was positive. But there was no “Eureka, there’s a God in Heaven after all!” reaction from me - none that I remember. I wasn’t shocked or surprised or even inordinately pleased; this was meat-and-potatoes stuff - okay, put me on drugs already so I can get on with my life. And so she did - mega doses of Penicillin. Then the office called back and said they’d sent my blood to the almighty CDC for confirmation, and it had come back negative after all. Now, thinking back, I wonder: why was everyone so very quick to conclude that the negative test was the correct one?
As the 1990s approached, I was still extremely ill and nowhere near a diagnosis. My woman internist had left her practice and gone on to be a corporate physician; I found a new family doctor, who stated that I was one of his stranger cases, though happily he never mocked me or suggested I was making things up. But there was nothing we could do to cure or even alleviate this sickness. I - a person so afraid of drugs I would often go back and sit in the doctor’s office after filling a prescription, in case I had some sort of horrible side effect - had been put on nearly every type of medication: Tegretol for the “seizures,” Carafate and Zantac for the esophagitis, Reglan for nausea, Bentyl for the IBS, Inderal for the rapid heartbeat, some sort of calcium channel blocker, Elavil for depression, Tranxene for anxiety, Feldene for muscle and joint pain, Macrobid for the bladder symptoms, Antivert for dizziness and balance problems, bronchial dilators for the asthma and shortness of breath, steroids for the hair loss, asthma, sinus attacks and pleurisy, and countless short courses of antibiotics for the sinus infections. After I changed jobs, lost my insurance and had to start paying for these drugs out-of-pocket, I managed to max out three major credit cards!
Interestingly, the steroids didn’t made me feel worse, though they are by all accounts contraindicated in Lyme disease. However, antibiotics often did make me feel worse - at least at first. (Sometimes, in fact, I would feel lousy enough to question whether they were even working.) Was this a "Herxheimer" reaction? Were they, in fact, killing off spirochetes, a few here and there, enough to "damp down" this illness and probably prevent me from ever showing another positive antibody test to Lyme, although I was never truly cured? At one point, I told my doctor to knock Ceclor off the list of antibiotics he could prescribe for sinus, since every time I took it, I'd have a mildly crawly, itchy feeling under the skin on the upper arms. I assumed it was an allergic reaction. But a crawly, itchy feeling on the upper arms also hit me along with this new onslaught of symptoms in the summer of '98 (though it was far from mild) and no Ceclor was involved then. So...now I wonder.
By this time I did indeed have chronic, crippling fatigue. I started out by having to stop and rest halfway through a shower and ended up by having to crawl from the couch to the bathroom - I did not have the strength to breathe and do something else at the same time. Sometimes, I would be overcome with sleepiness and the need to pull over while driving. Not only was I getting night sweats, I had drenching cold sweats in the daytime, with or without exertion. At times, these sweats were so annoying I had to stuff a towel down the back of my blouse. Sweat would also bead up on my chin just below my bottom lips, and in back of my knees. Sedentary, I would have a normal temperature, but spike a fever the moment I got up and started moving. One day while cleaning house I was struck by a feeling of hot water being poured into my lungs, and a week later, coughing and exhausted, was diagnosed with mycoplasmic pneumonia. After this, one lung or the other would often feel like it had virtually collapsed - that there was no air moving in or out at all.
I had sudden bouts of hypothermic body temperature, too. I would start to feel chills and begin to shake, and would find my temperature very below normal - the lowest reading was a scary 95.5°! My face, in contrast, would be flushed and burning hot when this happened. I’d cover myself with as many blankets as I could - an electric blanket if possible, it worked faster - and ask someone to make me something hot to drink, even if it was hot water from the tap. As soon as I could, I’d take a hot shower. This worked to raise my temperature to a manageable 97° or so. This occurred independently of environmental temperature, or for that matter, of anything else.
By now I was gaining weight - in fact, in ten years, I gained about 75 pounds (though to my credit, I’d given up smoking along the way - and I’ve finally lost it again). At times, I had what could only be described as an “icy” pain in the breasts, though a mammogram showed no abnormalities. I had gingivitis, an episode of trenchmouth, a painful spot on the roof of the mouth I was told was an epithelial ulcer, oral thrush, and tiny red sores along the tongue. I had trouble swallowing food, and developed a habit of waiting until there was a beverage on the table before I took a bite, to help wash everything down. I had muscle twitches in the eye area, and fasciculations (visible rippling under the skin) in the upper legs and the backs of my hands. One disturbing manifestation - thankfully short-lived - was trigeminal neuralgia, sharp, stabbing, “icepick” pains in the temples.
I had whole-body stiffness in the morning and one attack of extreme weakness (almost a paralysis) in both arms - I had to “prop” them up on the typewriter at work. This unusual phenomenon lasted several days. I had a painful spot in the right side of the base of the neck and was often unable to sleep on my stomach because it pushed my right arm backward, aggravating the pain. I had a “tightness” and a pulling sensation in the index and middle fingers of the right hand, and a general stiffness in that hand. At times, my right arm was so painful I couldn’t lift it to wash my hair. My legs were persistently heavy and weak, and I felt I had to hold onto something (a wall, a railing, a grocery cart) when walking. (A friend at work asked me once why I was dragging my foot - I didn’t realize I was.) The floor often felt like it was “rolling” beneath my feet, or that I was on an elevator or a boat, going up and down in waves. (I finally broke down and obtained a “handicapped” parking permit, although - not to make light of things - admittedly an upcoming Jimmy Buffet concert in a large outdoor venue had a lot to do with this. I wonder if the Hartford Meadows sprays for ticks?!)
I developed dry-eye syndrome, keeping a bottle of artificial tears in my purse and on my bedside table. Vision problems started with seeing “trails” of objects, i.e. my own moving limbs or doorways I walked through, and eventually progressed to double and triple vision in the right eye (made for confusion at traffic lights!) I was told I had “nystagmus” - my eyes would flicker spontaneously - as well as ocular stiffness and a “low blink rate.” My perspective was awry; I had terrible spatial confusion, typically placing a glass too close to the edge of the counter or setting it down too hard and breaking it, or missing a step (whether going up or down) and subsequently falling or jolting my back. This “spatial dyslexia” translated as well to a habit of turning on the wrong faucet, flicking my signal light the wrong way, or turning a lamp switch, thermostat, or jar lid in the wrong direction. (More than once, I’ve woken to a 90° house or tackled a dishpan full of dirty dishes to find that I’d filled it with ice cold sudsy water!) In addition to this, I began to have difficulty “recognizing” things when driving - familiar landmarks lost their meaning; I stopped at green lights, made wrong turns, or drove past my destination, even in territory close to home. I could rarely remember how to get to the same place twice. My short-term memory, retention and concentration became so limited I felt stupid and flummoxed, constantly apologetic.
In 1996 I was at a tag sale when my hands began to burn with sudden “pins and needles” and a true heat sensation; the only thing I could think of to do for relief was to plunge them into a bucket of ice. I actually asked other people to feel the heat arising from my hands, but of course, to my amazement at the time, they could not. For days afterward, my hands felt like they were being pelted with sleet or freezing rain. I could not hold onto anything properly. I was on Doxycycline at the time for a sinus infection, and I assumed it was a sun sensitivity reaction (though the sun never bothers me, except to burn my very light skin if I let it). A little more than a year later, in Ensenada, Mexico, I had an identical occurrence, and though it only lasted a day, it then developed into an itchy, bumpy red rash on both hands and arms. Again, I’d been taking Doxycycline. Allergy? Sun poisoning? Or Herxheimer??
I had high-pitched ringing (really, a squealing) and hearing loss in the left ear and unusual chemical sensitivity, especially to odors - even pleasant ones, such as aftershave and air freshener. Often, exposure to these would cause not only headaches, but burning in the windpipe and a feeling of anxiety. One day, while riding in a friend’s car, I developed a sudden numbness in the chin and along the left side of the mouth and jaw - a precursor to what would come years later. Drooling and aggravated, I went immediately to my family doctor who diagnosed it as Bell’s Palsy, though the eye was not involved. In a few days it went away.
One important thing my new doctor did do was refer me to a local rheumatologist I hadn’t seen before. The rheumatologist, too, was gracious, and wasted nobody’s time suggesting that I was inventing or imagining things. In fact, he strongly suspected a non-specific connective tissue disease akin to lupus - maybe mixed connective tissue disease, maybe dermatomyositis, maybe even lupus, though repeated (and very extensive) tests were negative for this. He did find that in addition to the high “sed” rate, I had an elevated “CPK” level - CPK stands for an enzyme thrown off into the blood by wasting or inflamed muscle tissue. But we had no real explanations.
Though eventually the crippling fatigue abated, it never went completely away, nor did any of my other symptoms; they simply waxed and waned. I’d have a period of good days - a “remission” - and then sit back in resignation while whatever this thing was moved in again. Thankfully, my hair stopped falling out, but would never grow back. I wasn’t the only one around who had bizarre, annoying, bothersome symptoms; all too frequently, I’d speak with a friend or acquaintance and hear puzzling recollections and theories from frustrated, often incapacitated people, and though I was more severely affected, it seemed that something in the area was in some way attacking us all. You would hear of a sudden stroke - a close call with heart block - a disfiguring arthritis, even (and most tragically) in young children. In so many cases, the “attacker” was found to be Lyme disease. Were we really in this much trouble???
I’m pretty self-actualized, I think. In the years since I’d first gotten sick, I’d moved through the seven stages of loss: shock, denial, grief, anger, depression, bargaining, acceptance. If this was the way it was going to be, I had to live in spite of it. But I never made plans too far into the future. Along with all the damning physical perplexities, I continued to have anxiety, panic attacks and, now, night terrors; tremendous (and understandable!) irritability, overreaction, and easy distraction; depression that would later be found to be bipolar; difficulty concentrating and memory loss; and a haunting, all-too-vivid recollection of a summer day in June of 1984 when afterward, nothing was ever right.
The rheumatologist was sympathetic to the ferocious new symptoms that appeared in the spring of 1998, especially since they followed a fairly long period of me feeling good - really, better than ever. I wouldn’t have considered a cross-country move in my wildest dreams, otherwise! (What caused these sudden problems after an almost total resolution of symptoms? Well, I’d been on a constant and extensive regimen of antibiotics for seemingly never-ending sinus infections, but had felt so great I’d gone for months without them prior to this flare-up. A friend familiar with Lyme theorizes that that was just long enough for something to get a foothold, which is a very frightening thought indeed.) When the neurologists I’d seen couldn’t come up with anything, and I went back to this doctor in total despair - a side of me he’d never seen - he quickly got me an appointment at the Neurology Clinic at Yale. “This is more than I can handle,” he said, “We need to get you down there, get some tests done, at least get some things ruled out.” He now suspected some variant of adult-onset muscular dystrophy. Crazily, neither of us brought up the possibility of long-term tick-borne illness.
I was now on State medical assistance and pending Social Security Disability, a situation I couldn’t have predicted even in my wildest dreams or worst nightmares; I’d lost out on the perfect apartment in California and forgone a promising job interview; and, there was not one minute - not one second - when I didn’t have indescribable pain. While feeling bad was a long way from terra incognita for me, I had no map for this country, and my compass was spinning out of control. I had thought there were dark times in my life before, but this was proving the darkest time of all.
I saw a personable, patient young associate professor at Yale’s Neurology Clinic, and was impressed and relieved at his serious attitude toward what was going on. He drew blood again, scheduled me for another EMG, and mentioned the possibility of a muscle biopsy. During the EMG he invited my mother and sister-in-law into the testing room, and explained to us in detail what the needles and electrodes were doing, and how this testing worked. Basically, the EMG was normal - apparently in my case the nerves were sending the muscles the proper impulses and at proper times. “Now we know you don’t have MD, Lou Gehrig’s Disease, or Myasthenia Gravis,” the doctor explained. In addition to this, my bloodwork had also been unremarkable - in fact, for some unknown reason, both the sed rate and the CPK level had dropped! “At this point, I don’t know if I’d want to proceed with a muscle biopsy,” the doctor said - “I have a feeling it won’t show us very much, and it is an invasive procedure.” (As if I cared about that!) “But there’s no reason why we can’t try to treat your pain,” he continued. “There are medications that we can use the try to make you feel human again, and there’s the pain clinic, too, if all else fails.”
I had called my family doctor and asked him for painkillers long before this, and though he knows I’m afraid of this type of medication and wouldn’t ask for it unless I was truly desperate, he suggested I take Nuprin. Now, finally, someone in charge seemed to comprehend the seriousness of the situation - I’d had to quit work, for Heaven’s sake! - and was offering at least a palliative remedy. I had wondered (and still do) why no one seemed able or willing to help me, when I was ready to consider amputation if all else failed, weighing the disadvantages of pain over no legs at all.
I was put on Neurontin, an expensive anti-convulsant that has shown good results in controlling deep nerve pain. Though I felt slightly drunk and sleepy and developed an incredible appetite, I did notice an immediate - though not dramatic - response in my legs and ankles. Nothing was helping my mouth, but I was finally able to sleep at night and could carry on a conversation without feeling weak with pain. Searching for alternatives, I had also experimented previously with a Canadian herbal supplement called “Km,” with my own researched vitamin and mineral regimen, and, now, with the ancient Eastern practices of acupuncture and magnet therapy, and got good results from what I could afford. I was also learning a brand new vocabulary - words I wish I had no use for, like “dystonia” and “myoclonus” and “hyperperacusis” and, most painfully, “Bannwarth’s syndrome.”
Still, I was disappointed that no one had hit on the cause of the problem, a treatment, or a prognosis. My family felt powerless to help. Calls poured in from friends, who offered luncheon dates, rides to doctor’s appointments, and a sympathetic ear. They were also indignant that no one seemed able to get to the bottom of things. “Are you sure,” they asked - one by one they asked - “Absolutely, positively certain that you don’t have Lyme disease?” I was pretty certain - but I was about to get the education of my life.
When you have been alone in a dark place for almost fifteen years, a place of grim astonishment, bewildered denial, and incomprehensible pain, and someone or some thing walks in and suddenly snaps the window shade up, you can’t get enough light. Here at last was someone else, a living, breathing, human being, who had walked for miles in my shoes. Talking to a fellow sufferer was exciting, exhausting, enlightening, and entirely reassuring. I was not alone. Yes, there were other people with these symptoms, and more - and yes, of all things, these people did have Lyme disease.
Two-and-a-half hours passed with us interrupting each other, shouting “Yes!” and offering support through anguished recollections of doctors who did not believe. (One doctor had suggested to this woman that she was “obsessed,” and “needed to spend more time on her husband’s boat.” Would a physician suggest this to someone with strep throat, appendicitis, or a broken leg?) I learned that my new friend’s own doctor (who incidentally refused to consult with me because I was a "state" patient and she was in the process of discontinuing state patients) had had Lyme disease, and had spoken of crawling and stinging (and even “humming” and “buzzing”) around the mouth - apparently a common effect of cranial nerve involvement (in fact, I would learn that a great many people with latent Lyme have numbness of the mouth, with or without Bell’s Palsy - and that a great many of my symptoms, not just this one, could be explained by multi-cranial nerve inflammation or infection - the double vision, the difficulty swallowing, and ringing in the ear, to name a few).
I learned that it’s not uncommon for infected patients to test negative until they’re treated - only then, when you kill off the spirochetes, do the bound-up antibodies free themselves to float in the blood and be detected. (There are numerous other reasons, too - recent medications, a tired-out immune response, a history of steroids and/or short-term antibiotics, dormant spirochetes, different forms of the disease, non-standardized lab criteria, etc.) I learned that there are several tests which can be done to help nail down the diagnosis of a tick-borne illness: a spinal tap, an antigen urinalysis, even something called a SPECT scan - something I’d never heard of. (Apparently it’s as difficult to culture spirochetes from blood or tissue as it is to find a needle in a haystack, though.) I learned that there was most certainly a reason for positional dizziness, low body temperature, and having to “remember” to breathe - that the autonomic nervous system, in charge of these functions, is only too apt to be attacked by Lyme. The inability to find the right word, to remember facts from one room to the next? Classic Lyme disease! (There’s even a name for it -“Lyme fog.”)
In fact, I learned, there is no part of the body that isn’t vulnerable to Lyme, and it is a lot more than a skin rash and a few swollen joints that can be easily cured with a couple of weeks of antibiotics. Lyme is, I believe, the greatest of the “great imitator” diseases. And, in talking first with this quietly persistent peer and then with others at a Lyme disease support group meeting, reading books on Lyme, and checking out the Internet, I also learned of the shocking and unforgivable politics of Lyme disease.
“It might not be their fault,” someone said; “Doctors may just be ignorant about Lyme, and not realize that it’s as big a problem as it is. Or they might just be close-minded, and refuse to believe it.” Don’t get belligerent, we were advised - if we perservere, we will change their thinking and their practices, one doctor at a time. But a ridiculous number of doctors and hospitals are on the payrolls (ostensibly, as “consultants”) of HMOs and insurance companies who don’t want to pay for extended Lyme disease treatment - especially IV therapy, which can easily cost thousands of dollars. This clouds the issue unmercifully. And real estate values and all-important tourism could drop dramatically once the word gets out that this is a dangerous place to visit, and you might not want to live here. So patients suffering from Lyme disease find themselves doctor-shopping and having to urge, manipulate, threaten, goad, plead, persuade, and beg even “good” doctors to help; guarantees aren’t necessary, but when they see firsthand the effect this illness, combined with this manifesto, has on the Lyme patient’s physical, financial, and emotional well-being (or if they themselves, or someone in their family, suffers Lyme), some doctors do try. Far too many more do not.
I spoke again to my Yale neurologist - advising him that what I was going to talk about may be “fightin’ words” to a Yale physician, since Yale is notorious for their initial enthusiasm in fighting Lyme and then a sudden, head-in-the-sand reversal. Surprisingly, he agreed that latent, chronic Lyme disease (a non-existent entity to many doctors) was very much worth pursuing in my case - and he agreed, while defending the Western Blot as a very accurate test, that numbers of patients were showing positive results after commencing treatment when they’d shown negative ones before. “If your rheumatologist recommends it,” he said, “I’ll refer you for treatment of Lyme.” (Later, though, I learned that absolutely no one at Yale will treat you with antibiotic therapy without that only semi-reliable Gold Standard: a positive blood test.)
Like the death of someone you love, this is sinking in gradually. I reach a point where virtually nothing surprises me, and then -- !! But is “the devil that you know” better than the devil that you don’t know? I’m still not quite sure. After years of being told that I was crazy and then, suddenly, that I had some type of autoimmune connective tissue disease - which, incidentally, I always felt was triggered by the Lyme - it now seems almost unreal, that it’s probably been nothing more (and certainly, nothing less) than an uncured, undertreated Lyme disease infection all along (although I don’t much doubt that I had Chronic Fatigue Syndrome along the way, as well, whatever its curious vector might be). There’s hope, again, now. If I’m lucky there’s treatment. And - although, at my stage, it’s somewhat dubious - there might even be a cure? This brings me to my knees, and I weep with the impact. How sure am I now that I have had a tick-borne illness - very probably Lyme - for the last fifteen years? My God, I could be the Poster Child for Lyme Disease! (Go ahead - you be the judge.)
I am loathe to jump on a bandwagon, and I look at most things with an open but skeptical mind. I have talked, I have listened, I have looked, I have read. I do not blame every odd thing I’ve ever experienced, or am experiencing now, on Lyme disease. Nor do I regularly complain about my less bothersome, transient symptoms, such as the faintness when arising, the dry eyes, the bruises. I don’t want to make any illness my newest hobby. However, while one misguided doctor writes in his book on Lyme that the more widespread and peculiar the symptoms are, the more likely the complaint is psychosomatic, I’d have to say that the more widespread and peculiar the symptoms are, the more likely that the problem is Lyme disease. And if you live in Connecticut, by all means, this goes double. In 1994, in California - considered to be an epidemic area for Lyme disease - there were a little over a hundred cases of the illness reported. In tiny Connecticut, there were over a thousand that same year. Sadly, I believe you have more chance of winning the Powerball in Connecticut that you do of dodging a bite from a Lyme-carrying tick. People are suffering. I am one of them.
I didn’t rush to make an appointment with my rheumatologist after speaking with the doctor at Yale. Part of me wanted to go on a while longer envisioning a “best case” scenario - a heartwarming “Oh, my God, of course, that’s it!” kind of epiphany, and the forming of a partnership, a joint effort to eradicate this horror, to bring me back to the way I was, back to the parallel universe of wellness I’d left behind in 1984. I am not an “unhealthy” person. In fact, while I accept the fact that I had Chronic Fatigue, I can’t call it CFIDS (Chronic Fatigue Immune Dysfunction Syndrome). I’ve never felt there was anything wrong with my immune system; I can go years without a head cold, and usually escape whatever flu is going around; plus, I heal quickly. If anything, I probably do lean toward the autoimmune continuum - my immune system seems pretty “revved-up” for the most part (witness the 104° with the Lyme disease). Unhealthy? No. Just sick.
Almost to a person, Lyme sufferers seem to pop from patient to political activist without stopping to take a breath. (I seem to be no exception.) When I bring up the subject of Lyme, I am constantly surprised; not only are people only too willing to listen, they don’t want to stop talking! There are all kinds of frightening theories abounding as to why Lyme disease became epidemic when it did, along with Chronic Fatigue Syndrome, Fibromyalgia, Gulf War Syndrome, AIDS, and the still debatable Candidiasis. There are innumerable questions - why do some people, bitten by infected ticks but never symptomatic, appear immune to Lyme disease? What, if anything, aggravates existing Lyme? We know that Lyme can be transmitted in utero - are there other potential means of transmission? What's the real key to prevention - to knocking out the borrelia spirochete before these bloodsucking agents even get anywhere near their pound of flesh?
What constitutes the controversial “post-Lyme syndrome” - and how do we deal with it? (My doctor happens to believe there is such a thing - that the body is sometimes so damaged by Lyme that even after being cured, problems continue, or perhaps Lyme leaves some sort of inert substance behind to do its dirty work - especially if you’re already prone to autoimmune processes, which unfortunately appears to be my particular bane. This, he states, may be one reason why some people, suffering Lyme symptoms, are not helped with antibiotics, or why some who are helped - often dramatically - are being helped by the medication’s anti-inflammatory, rather than germ killing, actions. It sounds unfortunately all too plausible to me. And I'll be more than happy to entertain the notion that this is what I've got - just as soon as someone points out exactly where, along the way, I had the opportunity for ample and proper treatment to eradicate the original infection!)
What’s the difference between “chronic” and “recurrent” Lyme? Does Lyme aggravate or even activate other conditions? Do other conditions somehow predispose a person to Lyme? How long must a person remain on antibiotics to effect a cure or remission? (Lyme patients are as aware as anyone of the dangers of overuse or misuse of antibiotics, and would be happy not to have to take them at all, with their cost and potential side effects. However - maybe we ought to be asking the all-knowing insurance companies this - is there any other choice?) Which antibiotics are best for killing tick-borne bacterium - bacterium that cloaks itself in surrounding cells, that mutates into resistant forms, that feeds on whatever it can find in the body, that brings in malevolent co-infections, that lodges deep in tissues, joints, nerve and bone? As was the case some years ago with PMS, some people are now blaming Lyme disease for criminal acts! Is this reasonable? Is it likely? Will it continue?
There’s a newly approved Lyme disease vaccine - mysteriously rushed to the market even as some volunteers are still in the middle of clinical trials, touted on TV as the end of our worries, even though it isn’t guaranteed effective and isn’t even given to children. Who’s lending their financial and public relations support to this particular project? And why the rush? Okay, call me paranoid, but echoes of the Tuskagee Study rumble in the distance; it seems purposeless, but I suppose it’s actually possible that the powers-that-be are pooh-poohing the threat of Lyme not just because of the bottom line, but also because - in some experiment that went abominably awry - our government has accidentally done this to itself. These are the faces and the products and the politics of Lyme - which we can not afford to ignore. Do we wait, powerless and despairing - in some cases, dying - while chivalrous snippets of the scientific community posture for research funding? There are more things going on in the world than little old Lyme disease - aren’t there? So why is everybody spending all this time on debate? Is it our future that's at stake - or our pocketbooks??
A quote from Seneca says “A disease is also further on the road to being cured when it breaks forth from concealment and manifests its power.” If this is true, then Lyme disease should be wiped out any minute, since not only is it showing its face around every corner, it is also making no secret of its incredible, formidable, and awful strength. Physicians who dismiss Lyme’s threat, then, are not only hindering important medical discoveries, they are dismissing the Hippocratic oath’s important tenet: “First, do no harm.”
All ages suffer from Lyme disease and every generation has its pet cause, but many of us spring from an era of particularly fervent activism. We were not raised to take things sitting down. We are not comfortable taking “no” for an answer. In researching Lyme, horror stories surface not only of patients’ woes, but of persecuted physicians, hounded by state medical boards, threatened by the CDC, harassed by the board of health, and sued by insurance companies; frightened of seizure of their medical records and facing the possibility of loss of licensure, they “throw up their hands in frustration,” according to one well-respected author on Lyme disease. (Besides, there’s a form involved in the mandatory reporting of this illness, and it seems some doctors say that’s just too much paperwork.) Thus an “underground” network has evolved, with “Lyme-friendly” doctors who apparently throw caution to the winds, bravely practicing Lyme detection and proper treatment anyway. Forgive me, please, if I do not bow down and deify these heroes, or if I don’t cry a river of sympathy for their tormented colleagues. No more excuses, people. Get with the program. If patients can band together for strength, so can practitioners (including the doctor who told my activist friend that if one gets too involved in all of this, one won’t be available to treat patients any more. I thought long and hard about that and decided it’s a rather uncreative cop-out). Physician, defend thyself!
I haven’t bothered to look up Webster’s definition of “hypochondriac,” but I’d assume it’s someone who exaggerates and complains about minor discomforts, or thinks every headache is a brain tumor. By strict contrast, Lyme patients tend to underplay their symptoms and to plow through all of the pain, functioning under unimaginably difficult conditions. Some researchers think this results in the underdiagnosis of Lyme. We don’t always need to be so phlegmatic, I guess, but that’s typical New England (not to mention survival) behavior. There are many, many moments when I come close to “losing it” - to just giving up, and not wanting to go on like this any more. But then that moment passes, and I live until the next one. Though I did long ago accept the fact that I am imprisoned in a land of pain and uncertainty and made a decision to try not to dwell on it, I never, ever gave up the quest to find an answer, and in doing so, to find some concrete help. (Whether or not "down time" is actually beneficial to Lyme sufferers has never been one of my options to explore, I'm sorry to say!)
Do I really think that the first time I got Lyme disease was in 1984? Of course not - I grew up here, and was outside most of the time; there were just too many odd summer “viruses” among us - too many unexplained sore throats and swollen glands, stiff necks, headaches, rashes and fevers - to be coincidence. Have I been bitten and infected again since 1984? I’d say that’s extremely likely. In fact, my whole family has been bitten by ticks, diagnosed with and treated for Lyme disease - hopefully successfully, though I am not unconcerned. My mother's neuropathy, which now necessitates her walking with the help of a cane, is idiopathic, and both her mitral and aortic heart valves were so completely destroyed she needed mechanical replacements; my father has odd skin rashes that respond, now and then, to antibiotics, and the slightest, lightest touch to his face sets off intense itching, far more suggestive of neurological rather than dermatological involvement. My brother has noticeable permanent damage from two severe episodes of Bell’s palsy (once on each side) and my sister-in-law, who was bitten while pregnant with her last child and treated with Amoxicillin, gave birth to a beautiful baby boy - albeit one with a mysterious fever; my newborn nephew needed IV treatment with Gentamycin prior to discharge! Not all of us were tested, but of those who were, only I came up positive - and then, only with the lowly ELISA. The main thing is we all want a chance to be well again, and we’re not backing off.
I would have loved to have been able to make this story shorter (at least twenty pages if you’re ready to hit “print”), but how in the world do I encompass a decade and a half of history in a page or two? I also realize that this is an awful lot of reading about physical symptoms, and that might be trying or boring, but in order to get this story told, I think it's necessary to document these symptoms before attempting to deal at length with other issues. Reliving this was neither unemotional nor easy, especially since I'd long ago learned to make the best of things - until this latest rude and rampant assault.
When I went to look for a graphic to put with this story on the Internet, one of my nephews suggested a mountain climber; “I picture you at the summit,” he said, “Holding a flag.” Yeah - there was a time. We found a guy instead who’s half way up. I know that if you’ve read this far, you have a passionate interest in Lyme disease or you care for someone who’s sick. One thing to remember: my story is my story. Some Lyme sufferers have done much better; some are vastly worse. Bear in mind that you might very well be just fine. I have walked in and out of hell. Chances are you won't. To plagiarize the Grateful Dead, “What a long, strange trip it’s been” - and my journey continues. As I write this - 1/99 - I am waiting to commence three weeks (!!) of IV antibiotics - finally - an empirical trial from my good-hearted and willing rheumatologist, who’s impressed enough with my history and symptoms to initiate this protocol (not a long enough time to cure things, I’m sure, but hopefully, the beginning of winning the battle for real life again). I welcome your e-mail comments, and I promise to keep everyone updated! Please, wish me luck.
Lots of Links on Lyme Disease
International Lyme & Associated Diseases Society
CFIDS/FMS/MCS/GWS/Lyme Information Page
Lyme Disease Foundation
When To Suspect Lyme
Lyme Disease Testing
The West Coast Connection
The Lyme Disease Page
Lyme Disease Symptoms
Lyme Disease Information Resource
Lyme Disease Audio Network (formerly the Fine Print News)
Chiari (Cerebellar Tonsil) Malformation
Lyme Disease Resource Center
The Lyme Disease Conspiracy
The Lyme Disease Bookstore
Center For Complex Infectious Disease