Sam Donta, a well-respected doctor in the field of Lyme disease and a modest but eloquent speaker, says that “if you take antibiotics for Lyme and you get better, that’s wonderful. If you take antibiotics and you get worse, that could be a new manifestation of the illness or it could be a Herxheimer reaction. But if you take antibiotics and nothing happens, good or bad, then we start to worry.” Make no mistake about this; I was worried. I thought nothing was happening. No signs, no signals, no validation. Nothing good, nothing bad, nothing to speak of.
Just goes to show how wrong a person can be.
JANUARY, 1999: Dutifully, and yet so astonished at the suddenness of it all that I am removed, standing somewhere else watching myself, I offer my arm to the infusion nurses at the local hospital; gloved and masked, they scurry around, open sterile packages, take my vital signs. Swabbing my skin with antiseptic, they push an IV needle in and hit trouble - I’m cold and I’m nervous, and my vein disappears. “Might be a bifurcation,” one nurse says. I think this means my vein branches off at some point into two directions, but have no idea how I would know this unless I heard it mentioned once on “ER.” Alarms are going off, the phone rings, a pager chirps from one nurse’s pocket - they want her in the emergency room for a child who’s having seizures. “I can’t,” she says, “I’m right in the middle of a procedure.” (Genetic memory spins me back forty years; in this hospital, on a warm summer night in the late 1950s, I was the child in the emergency room having seizures.) They wrap warm towels around my other arm. I’m in a spa, I think - Canyon Ranch, or the Golden Door - me, Sharon Stone, and Buffy the Vampire Slayer. I think warm thoughts. This time, things go right, and the thin tube of a mainline catheter is threaded gently into my vein. I lay there hooked up to the Rocephin, which is going directly into my bloodstream. And why not.
It doesn’t occur to me to bring someone along for moral support. These kinds of things - taking someone else to the doctor’s with you, making a bit of a day of it, maybe having lunch - happen early on in chronic illness, before you are bowed to the plodding inevitability of it all. Nonetheless, my friend the activist has volunteered to come with me; now, she sits beside me in the cramped cubicle and holds my hand. “What a great documentary this would make!” she says. “Why didn’t we bring a camera?” How unusual, I think, to have other people in charge of me - to close my eyes and surrender to the protocol, to be talked over. To be “under observation.” It takes about twenty minutes for all of this medicine to empty into me, for the cold flush of saline and the Heparin lock. I feel no different, and am not sure if this should be a relief. My arm is wrapped with gauze, taped, and covered with a cloth sleeve. We walk out, go down to the cafeteria and order lunch. A frequent flier always, I am embarking again. I feel like George Bailey in “It’s a Wonderful Life.” I want to frame the outpatient admission paper I signed that says “Lyme Disease.” I am beside myself. I own this now.
For the next twenty days in a row, I drive to the hospital’s satellite clinic and sit in a recliner watching re-runs of “Dark Shadows” while the antibiotic drips in. I look up at it sometimes. I focus on its innocuous clarity, the enormity of its cost. I cheer it on. Some days, other people are there; cancer patients getting blood transfusions, neuropathy victims getting gamma globulin, a woman with too much iron in her blood is actually bled. One kind woman who has trouble with her hand gives me a pen with an open, sloped stem she got from a “medical specialties” catalog. I squirrel it away deep in my purse - I can write with this. By the same token, I am disconcerted - I have not yet given myself permission to be incapacitated, to join the realm of the infirm, not even after all this time. And I am lonely - there is no one else here with Lyme disease.
On the weekends, the nurses put me out in the hall, give me old copies of Vogue to read, offer blankets. My father comes with me “for the ride;” he dozes, wakes up and lifts the tubing high above our heads to get the last of the medicine out. One day I feel extraordinarily ill, and surly. It is very hard conjuring up the strength for pleasantries. I wonder what people think. On the fourth day after I start the Rocephin, I wake up at 3:00 AM, feeling vaguely and suddenly uncomfortable; sitting up in bed, I find that my nightgown is drenched with sweat. Shivering, I take it off and change it. You could wring the material out. It happens again a couple of days later. I e-mail my Lyme friends about this. Must be a reaction to the Rocephin or something to do with the illness, I say. Couldn’t be a Herx reaction - could it?
FEBRUARY, 1999: A few days before the IV is scheduled to be discontinued, I have a doctor’s appointment. My rheumatologist is not playing it cool - he doubts that the drenching night sweats are anything but a Herx reaction. Too fast, too fast, I think. Slow down. Excitedly, he writes out a prescription for six months of oral Doxycycline. “We might not see anything for quite awhile,” he warns me. I ask about Biaxin and Plaquenil, the other regimen of success. What’s his opinion? He points out a journal next to him on the desk. He’s been reading about Lyme. Somewhere, he’s read that there’s no difference in efficacy between Doxycycline and Biaxin - except in meningital Lyme. “What do you think that was I had in 1984?” I ask him. “Meningital Lyme,” he says.
I start the Doxy the day after finishing the intravenous. A few days later, I’m sitting in a chair by the phone, puzzled; I have forgotten who I was going to call and what I was supposed to say. Looking down at the notepad on the end table for something to refer to, it hits me - for three weeks, I have not been writing things down. I have not had to. Bemused, I drive to the support group meeting and try to bring people up to date but my tongue and the left side of my face are so numb, from my mouth up to my forehead, that, self-consciously, I can barely move the muscles I need to speak.
Sometimes we don’t know what we’ve got ‘til it’s gone, and sometimes we don’t know something’s gone ‘til we get it back. I catch cold, an unusually mild one (mine make up in quality what they lack in quantity, for the most part). Still, it leaves me with a sinus infection that the Doxy refuses to touch. I call my other doctor and ask him what I can take along with the Doxy for the sinus. He prescribes ten days of Biaxin. About half way through this regimen, my sinuses feeling considerably better, I develop nonstop heart palpitations. I don’t get too worried (remember, I’ve been schooled to believe there is nothing really wrong with me). These make me cough, though, and they don’t get better for a real long time. Finally, they die down. A few days after I finish the Biaxin, I’m sitting at a friend’s computer. I’m surfing the net. I’m getting ready to e-mail a friend. And then this obnoxious presence makes itself known under the desk - my left leg, my “bad” one, starts to catch fire again. In a matter of moments it’s burning again. And it strikes me - if it’s burning again, then at some point it had stopped.
But something bad is happening during this transition time: I am alarmingly preoccupied with the thought of suicide. This is not associated with even a suggestion of clinical depression; I know clinical depression, we grew up together. This is only suicide, and I can not make it go away. I sit on the couch at night with my family watching TV, and in my mind, I am composing a suicide note. I see the paper, I decide what to write, even how to print. There is comfort and joy in this vision, too. I have no thought for those who love me, who would be left bereft behind. Nothing I can do - this is, I guess, a given. Frightened, and knowing I am in terrible danger, I call a minister - a colleague when I was a social worker, a friend (and a bulwark) since. He’s scared, too. However, I am not sure that this isn’t physical; like a head cold, I wonder if I let it ride long enough, will it go away?
One day I wake up, and the death wish has disappeared as stealthily as it came. I knew it, I think. It’s a symptom. (In fact, it strikes me, it is the same symptom I suffered from years ago when I was treated with the antibiotic Flagyl for what was thought to be giardiasis. I remember then my peculiar and disconcerting obsession with dying. I was so preoccupied with the thought I was unwilling to speak to my friends on the phone, for fear of getting onto the subject. At the time, I figured it was due to the fact that everyone around me was partying, and I couldn’t; I was advised, while on Flagyl, not to get near alcohol - even to stay away from cough syrup and not to splash on cologne.) Later, I would be reprimanded by my doctor at Yale for “riding it out,” so to speak. He’s right, of course. But I am not sure there was anything much that anyone could have done. I am back to myself, burning legs and all, delving deeply and disorganized into the political arena of Lyme disease in Connecticut, vowing - along with other local sufferers - to strike while the issue is hot.
"Lymie"(why does that word rub me the wrong way?) self-help groups hold bake sales, sponsor lectures, and air videos on public access channels, to raise funds, to educate ourselves and others, to promote public awareness. Every so often, though, a chance to get involved in the actual lawmaking machinations of our state (or even our country) comes along. On February 24, 1999, a public hearing is held at the Legislative Building in Hartford to explore the subject of "Insurance Issues and Lyme Disease." The purpose of this hearing is to bring to light the problems chronic Lyme sufferers encounter with refusals of payment for necessary, long-term treatment, and the possibility of passage of a bill to address just this. (In the "Insurance State," no less.) A small group of us from the shoreline area band together to go see what's up. I have no insurance issues whatsoever, having no insurance, but I do have issues. "You go," our support group facilitator says to me, "And let them see how pathetic the results are when you're not treated long enough." Ahem! Speakers at this hearing include several physicians, an epidemiologist, a microbiologist, the chairwoman and founder of the Lyme Disease Foundation, insurance company representatives, and the public. In fact, between two and three hundred people attend the hearing, and more than 40 sign up to speak.
After ten hours, I have revised my own speech a fair number of times until it smacks of some radical futuristic vista, a "nation of people crippled financially, emotionally, socially, and physically," a "ravaged landscape straight from a Stephen King novel." (It is hard to believe that the words "I threw up" are now part of the permanent legislative record of the State of Connecticut.) "We are reaping the tragic harvest of those excuses [for not adequately treating Lyme disease]," I announce, figuring hey, in for a penny, in for a pound. I'm shaking. But I do get applause.
What holds us all riveted there for that length of time, though, are the others - the witty and erudite scientist from UConn who says he wouldn't get the vaccine; the tragic figure of Robert Schoen, the once-conscientious Yale physician who now gets paid upwards of $350 a clip to state that none of his patients have Lyme (and who complains that "it must be nice for the other guy to have the home court advantage;") the dapper, bordering-on-legendary Dr. Steven Phillips, who seems almost Heaven-sent with his rather discouraging declarations pointing out that even three months of IV doesn't help 90% of late-stage Lyme patients (including his own dad), who takes sternly to task the denial of treatment due to negative test results and the rotgut ethics and morals of those involved (he gets a standing ovation); the insurance company consultant who isn't too pleased that most of his referrals don't have positive blood tests (and who presents "evidence" that false positive results outnumber true positives - even in epidemic areas!); the doctor who is so struck by the spectre of this malady that he changes his specialty in mid-stream; the brave and battered patients who, broken and dazed, tell of mortgaging their homes to pay for treatment. One man's insurance company denied him even oral antibiotics, stating there was no proof he'd ever had Lyme disease, then denied his application for life insurance on the basis of "a history of Lyme disease." Figure that one out.
What stands out this day is the tightness of the testimony of the "Lyme-Literate" physicians. The examples they cite are well-documented, their referrals cleanly footnoted, published, and proven. The naysayers, on the other hand, use anecdotal evidence - "a friend of the family," "someone I met at a party," "an article from the New York Times." The legislators really pin down these guys, too - at times they lay it on a little rough, and their inquisition leads to some stammering, some blank looks, hemming and hawing. I actually find myself getting a little embarrassed for these doctors. Talk about ill-prepared. Happily, a half-passed bill soon sits on the floor awaiting final say. It's a measly bill, though, worded without teeth, a not unexpected act on the part of these lawmakers. Still, it creates publicity and controversy - and maybe, for now, that's as much as we can hope for.
I get my first Social Security Disability denial.
Investigating natural treatments and remedies at a local health food store, where, per usual, the staff and customers have a lot to say about Lyme, Margie and I run into a man who was one of the first to be treated by Dr. Steere at Yale - and the case was written up in Yankee magazine!
MARCH, 1999: One Sunday night I am trying to whip up a lemon meringue pie for a deserving friend. My chin starts to itch. My hands aren’t free to scratch it, so I rub my arm across it, sleeved in a heavy sweatshirt. Not enough. I pick up an old, used towel. I swipe the rough terrycloth back and forth across the bottom of my face and I think “What now? What is it now?” In the bathroom mirror, I can see that there’s no rash there, no indication of broken skin - it’s as smooth and clear as a baby’s. The next morning, reading the paper with a cat on my lap, I find myself absent-mindedly leaning forward, rubbing my chin across her head, hard. She thinks it’s out of affection, and is out of her mind with content. I don’t see why I’m itching so ferociously - there’s nothing there. But this is the area that gets numb, that gets cobwebby and crawly. I can only assume there’s some connection. During the night, without realizing it, I wake up clawing at the area with my fingernails.
Ten days later, my chin is raw spots and stinging blisters. The itch has moved up to a spot on my lip, a spot that twitched and vibrated so last summer I couldn’t fathom why no one could see it happening. I call the doctor. He’s a little doubtful that this isn’t some sort of skin condition - but, of course, by this time, it looks like one. I am ill-natured and fed up. He kind of acquiesces to the fact that since the itching started long before any evidence of irritation showed up, it could be the nerve endings, doing some deep and maddening dance. I have given myself an infection simply by the constant scratching. I ask for an anesthetic - Lidocaine, or something. He wants me to use a steroid cream. Things die down, but then get worse again; at night, when I scratch, I am left with intolerable pinching pounding slicing reverberating pain. I thought the tickling was bad. I want it back now.
What is back, what I haven’t had in a very long time, is the pain across the upper part of my back. It hurts to move, hurts to sleep, hurts to breathe. But this is a familiar bane, and I don’t pay it much attention. In the night, I get up and go downstairs for the hot water bottle, but it’s too hot, so I lay it next to me in the bed and wait for it to cool down. Hours later, I wake with blistering pain in my left arm and now, I panic - but when I turn on the light and, wincing, look down, I see it’s nothing more than a second-degree burn from the bottle, which fell against my arm without my knowing it. This is normal stuff!
Sitting, relaxed and talking, in the den at my aunt’s house, I excuse myself to get up and use the bathroom. By the time I get there, I realize that the palms of both hands are numb, pins and needles. Both hands. No reason for this, but I have some feeling of foreboding. Then, sure enough, back comes the pelting, freezing rain on the backs of both hands - they sting, they won’t work, they make me angry. So far, two things that have been gone for years are back again. Is this significant, I wonder?
In plain language, I find myself pissed off at people who are complaining about poison ivy, a pulled muscle, a toothache. This is limited and predictable, people - this will pass. (I used to complain about these things too, though - in fact, I still do; well, not poison ivy - for some reason I've never gotten it. I'm also well aware of the fact that there are a whole lot of people a whole lot worse off than me. Still, I wanna take good health for granted again, please!) My life seems to have melded into not necessarily a pre-Lyme, post-Lyme, but a before-I-felt-so-lousy, after-I-got-so-sick kind of aimlessness. I come across an “I love New York” keychain in the junk drawer, and my first thought is “I bought this at Battery Park when I could walk all over the city. When I didn’t know what was coming.” I recommend “Angela’s Ashes” to a friend, and I remember - I read this when I still functional. When I was oblivious. Shrimp mousse - the last time I made shrimp mousse I was relatively all right. Sometimes, when I wake up in the morning, I think for a second that it’s all gone - today, I’ll feel okay again. Not normal, maybe, but okay. (One night I actually wake up and think, “What a terrible dream - thank God I woke up.”) My father sees me pull a shirt over my head without unbuttoning it, and he laughs, kidding me - “Isn’t that the height of laziness?” Rather sadly, I remind him that this is the way it goes now because my fingers don’t work any more.
The response to my web site - the guest book comments and the e-mails - has been overwhelming, validating, and gratifying. It is far beyond my expectations. It is a network of hope and despair, understanding and puzzlement, courage and fear, comfort and pain, acceptance and anger. The humanity is almost a living thing. It is Grace In Cyberspace. It, alone, gives me enormous strength. And I continue to learn, learn, learn. And then, when I least expect it, when I am way beyond needing a sign, when I am stumped and defeated, something swoops in and rocks my world. My hair starts growing back in.
Last summer, I finally chopped off my hair. There’s no sense in having it long, as much as I like it long - there just isn’t enough of it. I gave up, swallowed my embarrassment, plucked a page from a fashion magazine, and went to get it cut. And I have kept it cut, delighting in the fact that I’ve actually gotten compliments - on my hair! Of all things! I am a week or so off the IV and due for a trim. My hairdresser greets me. She shampoos me and conditions me. She leads me to her chair, ties a cape around me, starts to comb my hair. And she stands there in back of me, and combs it. Silently, she parts it and combs it to the right. A moment later, she parts it again and combs it to the left. I am kind of wondering what’s going on. And then, “You,” she says, “You have something here you didn’t have before.” Oh my God, I think. My shoulders slump. It’s a new skin condition. They won’t want to touch me now. Oh Jeez. Oh no. Maybe it’s bugs. “You,” says this young girl, “Have new growth.”It is difficult to stay in that chair because my heart is somewhere up on the ceiling. The world expands around me, peripherally, no boundaries, no limits, and then it shrinks again to a little square spot right in front of my eyes where every single thing makes sense. Every. Single. Thing. Makes. Sense.
I have a follow-up appointment at Yale. I wonder if I should rehearse; this is, after all, Yale. Still, I get my money's worth (ha!): my regular doctor and a young associate, both of whom give me separate (and, of course, totally unremarkable) neurological exams, both of whom sit and endeavor to answer my questions at length, in detail, and honestly; both of whom actually ask me questions, and then talk to each other about my case realistically, seriously, and I would even say kindly (though they get a little defensive about not always being able to put together odd symptoms and nail down a good diagnosis). Granted, this is the Neuromuscular Clinic, not Infectious Disease - in fact the associate asks me to explain why everybody's so pissed off at them, and I do my best - but these guys are starting to give Yale a good name. I talk to them about Lyme and explain that I'm being treated now because, among other things, "when there is nothing else left, you go back to the beginning." Though they have no knee-jerk antagonism whatsoever, my primary doctor says he is sincerely confused as to why, if you truly have Lyme disease, you're not showing antibodies in the blood. (In fact he seems really frustrated, and it's almost like he's thinking out loud.) I give him a print-out from the Internet, an overview of good reasons. He reads it. For a fleeting moment, I feel presumptuously like a peer, like someone who may be teaching a teacher (well, really, any doctor who refuses to learn from their patients isn't much of a doctor, are they?) Granted, I'm not that altruistic a person - given a choice between educating someone about Lyme disease and feeling better, I'll choose feeling better every time, hands down. But somehow I don't think I've been given that choice.
I feel a funny energy in the room. In a moment I'm going to start thinking I'm on a special mission, sent by God. Get a grip, I tell myself. But I decide to follow my instincts and be brave - to borrow from the last line of the movie "How To Make An American Quilt" - and tell the doctors about my suicidal thoughts. (The doctors agree that this fixation could have been a reaction to medication or even a Herx. But never, never ignore this if it happens again, they warn.) These are things that we take great pains to hide from our physicians; anything that smacks of a psychiatric involvement so often rises up and obscures the true physical ailment that is there, that the doctor just can't or won't see. So we are quiet, hoping that we'll be taken for well-adjusted, perfectly sane people beleaguered with a real illness we must get to the bottom of - which in fact we typically are. (In a journal I kept in the early 90s, one notation reads "I just don't know if I have it in me to be sick and to have to convince someone of it at the same time." ) We have to change this. We have to let our doctors in on something: not only do mental health issues often accompany debilitating, chronic illness - that's a no-brainer - but, psychiatric manifestations of all kinds are often offshoots of brain involvement from the Lyme disease itself. And secondly, having a psychiatric history does not protect us in some way from contracting a real physiological illness. Schizophrenics get heart disease. Passive-aggressives get tuberculosis. Manic-depressives get cancer. And as my man Dr. Kenneth Liegner says, even hypochondriacs get Lyme disease! One doesn't cancel out the other - hello?!?
So anyway it's suggested that I be tested for babesiosis and erlichiosis (not my suggestion, by the way - surprisingly, it's theirs) and that I get some phsyical therapy for my legs, the most severely affected area of my body; I'm warned that herbal remedies of sorts can skew test results in general; and I'm told to come back in September for another Western Blot. I harbor no illusions about testing positive for the other diseases; I never test positive for much of anything. But here these guys are talking about "lgG's" and "lgM's" and and other antibody stuff I've been hearing about and I'm wondering if I'll be one of the people who finally tests positive again after all these months of treatment. To me, it doesn't even matter any more. I may be wrong, but I've got a funny feeling it doesn't matter to these two guys, either. The associate doctor's daughter - age six - had Lyme last year. She was pretty sick. I'd like to think we know the score.
I first fell for the confident but unassuming Dr. Kenneth Liegner, my activist friend tells me, watching him on a video. (I don't remember this, but she says it was blatantly obvious.) I know, I said I wasn't going to put these doctors on a pedestal, but for me there is just no resisting this guy. On March 10, we go to a lecture at a nearby hospital and I can barely contain myself when Dr. Liegner finally gets to speak. Oh, okay, I'll admit it, I proposed marriage to the man. He took it okay, but advised me it wouldn't sit well with his wife. (My friend now refers to me as a conference doctor groupie, but come on, one swallow does not a summer make.) Actually, three men speak at this conference: Dr. Brian Fallon, a youthful psychiatrist affiliated with Columbia University (everybody seems to know Brian Fallon), Richard Tilton, Medical Director of BBI Laboratories in New Britain, Connecticut, and Dr. Liegner, who's an internist in private practice in Armonk, New York. I'd been recruited to pass out pre-publicity on the conference and I make the rounds to the local hospital (which agrees to put it into their newsletter), the satellite clinic, and a bunch of doctor's offices. None of the doctors I gave the information to are there. In fact, according to one support group member who attended, only one doctor from Lawrence Memorial - where this is held - is in the audience. And, there's a guy outside passing out "stop the myth of Lyme disease" hand-outs to the somewhat surprised souls going in. (You have to kind of let the phrase "pseudo-Lyme" wash over your back.) Still, about 75 chairs are filled. And so we learn some important things.
Once in a blue moon (we've had two of them recently) there is evidence of a force unknown to us that works in mightily mysterious ways. The hair growing back? That's not mysterious. But remember the cocky young neurologist who said I was imagining my symptoms? A few days ago, the relative of mine who recommended him gets a phone call the day before a scheduled appointment - the doctor is not in. As a matter of fact he won't be back. A substitute is offered. He proves to be an adequate fill-in. But what's the word on the flight of the Know-It-All Neurologist? Family problems? Illness? Here's what we hear: after joining this practice, this doctor was never really happy. Nobody ever gave him his own office. He had to kind of scrabble for what he wanted. The others looked a little askance at him. He wasn't sure if he wanted to stay with this group; they weren't too accomodating. In fact they froze him out. Finally, he'd had about all he could take. And he left in a little huff, feeling that he'd done all he could, but he was fed up with their antics and he just couldn't take any more. You know what? Personally? I think it was all in his head.
APRIL, 1999:So now I know a lot more about antibiotics. I know from reading Karen Vanderhoof-Forschner's book "Everything You Need To Know About Lyme Disease" that antibiotics act in two different ways: by killing germs directly (bactericidal) or by interfering in various ways with the germ's reproduction, allowing our own immune systems to work on killing the bacteria (basteriostatic). At high enough doses, though, and for long enough lengths of time, bacteriostatic drugs can become bactericidal. Now add this to the picture: some antibiotics penetrate the cell walls, and some don't. Ideally, you want a medication that kills bacteria directly and that penetrates the cells where Lyme spirochetes hide. And you want it intravenously so that stomach acids don't get involved in proper absorption. I'm not sure this drug exists. Somebody somewhere should know, shouldn't they? Doxycycline is bacteriostatic (which is undoubtedly why the Lyme disease I contracted in 1984 zoomed back the minute those six days of pills were up) but it does penetrate the cells. Rocephin is bactericidal, but it won't penetrate the cells. What to do, what to do? Do both. That's my opinion, for what's worth. Maybe not both at the same time, but give that Rocephin (or another IV) a chance to get into the brain, the spinal fluid, deep tissue. Then give the Doxy (or another oral) a chance to wriggle into those cells where the spirochetes are battening down their hatches. But beware of "snake oil" claims. There are proven ways to change the pH factor of cells to make them more conducive to penetration by antibiotics; Plaquenil, a drug frequently taken with Biaxin, is one such helpful pill. If you're on amoxicillin, your doctor might beef up your blood level with a drug called probenicid, which slows the release of the amoxicillin from your body. Then there's hyperbaric oxygen therapy, which, while expensive, not readily available, and somewhat snake-oilish itself, has nonetheless been shown to help burst these stubborn cell membranes open and let the sunshine in, so to speak (scuba diving to certain depths will supposedly do the trick, as well).Watch out for some exorbitant "miracles," though. Lyme disease is Big Business to those creepy souls who know we'll grasp any any hope for improvement. (In case you haven't guessed by now, I have an overwhelming fear of being taken.)
And remember this: you know you're going to have a problem with yeast overgrowth from all those antibiotics. The discomfort of a yeast infection is the least of your problems, though; you need to kill the excess yeast because apparently, the spirochete is feeding on it! (Same with sugar and carbohydrates, which is why renowned Lyme doctor Joseph Burrascano, when it comes to drinking alcohol, advises that you "just say NO.") So everything you've heard about acidophillus is true, but you might not be able to stop there; look for other stuff to supplement it, tried-and-true yeast busters, maybe a yeast-free diet, maybe even an anti-fungal medication from your doctor if things get out of hand. Yogurt won't hurt, but it won't do it all, either. (And remember, you shouldn't take dairy products too close to Doxy or any of its relations - calcium can interfere here.) My activist friend (who has given me permission to use her given name, which is Margie, by the way) makes a liquid yogurt called "kefir" that she sweetens with something called "stevia," a natural plant derivative that won't feed the culture like sugar does, and that also has natural antibiotic and anti-yeast properties, apparently. Supposedly this is an acquired taste, but it only took me one spoonful to get acquired. I wish I had some this minute. The stevia isn' t cheap (if you see me collecting soda bottles by the roadside you'll know why) but I like the stuff. She also suggests eating seaweed - hey, one outlandish thing at a time, Margie! Lastly, remember this about the Lyme spirochete: a germ can only be killed when it's replicating. A strep germ reproduces about every twenty minutes. The Lyme disease spirochetes have better things to do; they only reproduce every 24 to 36 hours. Whoa - catch me if you can, huh guys?
A huge common denominator in Lyme is the amazingly abrupt onset and lightning-like migration of symptoms. I am walking up a flight of stairs and on the way, my right arm feels a little weak and heavy. Oh, no, I think, I'm imagining things, but by the time I reach the top, it's deja vu all over again (though certainly not as bad as last spring's odd "attack"). I waver between saying anything and shutting up about it - does anybody really want to hear this? and can they help me? so do I bother? But I decide to call my rheumatologist and ask him to order physical therapy, the only option I can think of. Over the weekend I visit a friend, and have to sit leaning back in a captain's chair in her kitchen with my arm draped over the right side; otherwise, it feels for all the world like it's pulling right out of my neck. (This should give me a clue to something, but it doesn't, not yet.) I'm examined by a different therapist this time - a kind of supervisory guy, I think, since he's meticulously teaching a young student - to see what's warranted. Certainly not traction, he decides. My right hand strength is poor, I can't squeeze this machine and make the numbers go up to where they should be. Turns out my shoulder muscles are, in fact, pretty much weakened, particularly the deltoid and the trapezius. Strengthen the shoulder, he says, and we'll get strength and function back into the arm. The hand will be harder; the further you get from the point of "injury," he says, the more scattered the fine motor control. This is why supporting my right arm with the strength of my left makes it easier for me to properly write. They get me started on active resistance exercises - stretching a long piece of elastic tied to a railing. I don't do too well at first, becoming frustrated and slightly nauseous, but within days, I begin to note dramatic improvement. So it turns out my markers for dermatomyositis - the high "sed" rate, the elevated CPK level - aren't so far off after all; this is an inflammatory autoimmune disease that falls under the muscular dystrophies category, characteristically affecting the shoulder muscles, and it drives home Dr. Liegner's point about chronic Lyme being "an autoimmune process that is driven by persistent infection." I'm just happy that the arm problem gets so much better so fast. (But alas, what do you do when you have a condition calling loudly for steroid treatment, verboten in Lyme?)
Suddenly, while typing a letter on my computer, I feel a peculiar "gagging" in the left side of my throat - what you'd feel when they're dragging a swab across there doing a culture. I expect it will go away, and am maddened, though not surprised, when it doesn't. This gagging gets worse instead of better, migrating to the middle of my throat and over to the right, choking me in bed at night, making me feel like I should claw my throat open, making me feel vicious and out of hope. Finally, the "gagging" goes away to be replaced by a swollen feeling, and I make an appointment with my ear, nose, and throat doctor; you can never assume that what you feel isn't really localized, that it's all brain stuff going on. Still, he sees nothing obvious, and decides that it's probably the cranial nerves again - the glossopharyngeal, controlling taste and throat sensations. Wait it out, he says, see what happens. He's sympathetic, but I want this to go away now, and I want him to make this happen. On the way out, I hear that he's giving Lyme vaccines. Is nothing sacred? After a while the gagging recurs, and it rains, and a dearly loved family member dies, and life is very awful. I help Margie with a tag sale to raise funds for the Lyme Disease Foundation - I can't help her very much, I'm afraid, so I'm glad she's feeling okay right now - and it nets $2,800, matched by the infamous SmithKline Beecham. I don't feel good, though. Whenever you get a new symptom or something comes back, Margie says, we can only hope it's one of the "nicer" symptoms. Without a doubt, some manifestations are far harder to bear than others. This is one. This, I think, is the hardest yet.
But there is a marvelous, hallelujah-lessening of pain in my legs. When I ask my doctor whether we should do a blood test to see if the level of Doxy in my system is adequate, he says that even if it does meet therapeutic levels, there's no saying that's adequate for me. He thinks it might be worthwhile just to raise me up to three pills per day (small potatoes though this might be in the Lyme disease patient's world). Within a week, I find that I don't just have periods of less leg pain, I'm having sustained lessening of pain. Margie told me this would happen, and I didn't believe her. Not me, I said last winter; I'm stuck with this pain. It'll never go away. I'll never feel right again. Yes, you will, she said - give it three months. Look for new symptoms, but a lessening in severity and duration of older ones, she said. Look for Herx reactions every four weeks or so (my symptoms don't recognizably "cycle," though). This is what's supposed to happen. I would probably take the leg pain back (embrace it, in fact) if it meant I could swallow, but you can't barter illness like this. You have to be grateful for whatever's good.
MAY, 1999: The ear, nose and throat doctor sends me for an MRI to rule out, well, I just don't know what. Exhausted from grief, worry about a potentially serious surgery on my mother (it turns out okay) and the strain of this throat thing, I fall sound asleep in the MRI tube with Bob Marley jamming through the earphones. I kind of hate getting up off the stretcher, I'm so relaxed. It's the most relaxed I've been in weeks, probably. I don't expect they'll find anything; they never do - I haven't even bothered to ask about the babesiosis and erlichiosis tests Yale did in March. That'll be the day, when something like that comes back positive on me.
I have occasional itching on the lips, still, tingling on the mouth and chin, and crawling on the upper arms again, but it's not excessive. I'm wondering whether I should go back on IV, but I don't really bring the subject up, since it's out of the question. My father's funny skin problems have turned into a shiny, papery, angry looking ankle, an advertisement for ACA - acrodermatitis chronica, a problem in European Lyme - and a measles-like rash on the arms and across the upper back, with intolerable itching. Keflex helps initially, then quits; Doxycycline helps, then poops out. The doctor humors me and does an ELISA on him, as well as some direct biopsies of the rash. The ELISA is negative, for whatever it's worth, but the biopsies "have baffled the pathologists," we're told, because they have come back suggestive of both allergic and bacterial excema "consistent with an insect bite." All over? A huge shot of cortisone ("a cheat," says the doctor, whom I like - he's the one who said my hair loss wasn't stress, back in 1985) makes my father feel like God's in His Heaven, all's right with the world, of course. It lasts about ten days and then we're back to Square Miserable, though with the antibiotics, the ankle problem seems to have really resolved. I begin to seriously question things - Dad's not feeling ill, but he's been bitten by ticks many times, and some years ago went through a spell where he couldn't go into a store and walk for all his leg pains (diagnosed as poor blood flow at the time). Lately, he's been complaining bitterly about his knees. We have no choice now -we're going to the Dermatology Clinic at Yale. Maybe we're not seeing the forest for the trees?
Even though I take precautions, I sunburn badly at an outdoor antique show. Still, we won't fool with the antibiotics now, says the doc - why mess with a good thing? My legs aren't perfect but they're still staying better. I guess this is the year I will find out if those self-tanners are all they're cut out to be! I am scattered; my cognitive functions are pitiable and I weary from staying "on task," but I gather strength from small accomplishments. It won't always be like this, I think, but just once I would like to turn the faucet on the shower the right way automatically the first time.
In an action that smacks of leery, apprehensive refugees stockpiling supplies in preparation for potentially desperate times to come, Lyme patients hoard antibiotics by methods which suddenly come as naturally as any survival instinct. Still, we manage - even endeavor - to be bountiful to other sufferers, offering our shares, sharing our offerings in a warmly socialistic "family of man" scenario. It is not unusual to hear among the small talk at a seminar or support group meeting the quiet utterances, "Hey, if you're short on Doxy, I have some Minocin," or "My Biaxin's fading out - anybody got any extra Plaquenil to kick it up?" We are fiercely compassionate sick people competing with the wheeling-dealing self-serving Big Business medical care providers of the world. Most of us will be on and off antibiotics indefinitely, and we can't help it. We are comrades now, fighting a battle for our lives.
JUNE, 1999:I'm reading Major Michael Donnelly's book "Falcon's Cry: A Desert Storm Memoir," about his stint in the Persian Gulf and his subsequent and sad diagnosis of Lou Gehrig's Disease. Michael Donnelly just turned 40 - the chances of him having something like ALS are mighty slim, but he does, and so do at least 20 other young veterans of the Gulf War (though only nine cases have been formally acknowledged by the Pentagon). On the cover of the book is a photo of Donnelly on a runway in Abu Dhabi, posing in front of his F-16 fighter jet in full flight gear, during Desert Storm. He is seriously handsome, with his aviator sunglasses, silly grin, and long legs that won't quit; talk about Top Gun. He is, in fact, a Connecticut kid, someone I probably would have chummed around and drank beer with out at the local lake if he hadn't become such a responsible husband and dad at a pretty young age. His story is told beautifully, honestly, angrily, and wryly. One night in August of 1995, while stationed in north central Texas, Major Donnelly was out running. A truck spraying pesticides for mosquitoes passed him by. He breathed in its fog in spite of himself, and not long afterward, "began to have odd symptoms." I.e. racing and pounding heartbeat, night sweats, blind spots, unusual fatigue, frequent urination, difficulty concentrating, short-term memory loss, not enough strength to take a deep breath, and recurring bouts of strep throat. He felt as if he "was getting the flu, but it never blossomed." Then his muscles started to twitch. The doctors, of course, tell him it's stress (post-traumatic stress syndrome, in his case). Donnelly asks if perhaps it is connected to the chemicals used by Saddam Hussein; after all, seems like lots of vets are getting sick. But the flight surgeon looks at him and says there's "no conclusive evidence linking service in the Gulf to any illness." Starting to sound familiar?
Of course, it turns out (tragically) that all that "stress" is Lou Gehrig's (with added components, I'm sure, since one of Major Donnelly's symptoms is photosensitivity - he gets dizzy in the sun; something not associated with ALS). Major Donnelly loved the beauty of the Persian Gulf and the rush of being in combat. But he knows now - we all do - that these soldiers were in the hands of a madman (one of many, I fear) who was well equipped with killer chemicals sold to him by the very folks who sent these people into battle. "Tens of thousands" of chemical alarms sounded during the Gulf War, all of which, these soldiers were told, were false. Combat log books have these pages missing. Doctors trying valiantly to treat Gulf War vets are "fired or pressured to stop their research," Donnelly writes, and adds, "why would more than 110,000 veterans invent serious illness?" He doesn't have to make a case for me...this is heartbreaking and unforgivable. I want these people to go to Hell NOW . Donnelly maintains that Gulf War vets weren't adequately prepped for or protected from what they had to face in Desert Storm. Now, they and their families stagger, hit with rare cancers, odd and crippling neurological disorders, autoimmune and connective tissue disease, grave illnesses and shortened lives. Experiments and historical data show that it is likely Donnelly's illness was triggered by his second exposure to chemicals while jogging in Texas. "....can't we believe that Saddam Hussein would employ chemical and biological weapons in such a way as to cause long-term illnesses instead of huge body counts on the battlefield?" Donnelly asks. Oh, believe it - from time immortal, we have always sacrificed our greatest natural resource, our strong young men. Now, with malevolent entities like Chronic Fatigue, Lyme Disease, and AIDS, I guess we are all in this boat together - some in really, really deep water. How nicely, how easily and crazily, how lethally brilliant to poison us and then let our own bodies finish us off.
As part of their "March to Victory" campaign, the Lyme Disease Foundation brings Dr. Joseph Burrascano to speak at a local high school. Margie and I help with publicity, posting flyers in supermarkets and stuffing them under windshield wipers at commuter parking lots. (Margie has the nerve to stand outside the market and hand them out to people. I might do that someday, but this isn't the day.) It is the hottest, driest summer anyone can remember in the Northeast; I am sunburnt despite my 50 SPF lotion. (Doxycycline, dammit!) The presentation is well attended, even given a spot on the nightly news. It's engaging to hear Dr. Burrascano speak, even though it's regurgitated information from books, articles and the Internet. I look around at the audience, though, knowing there are people hearing this for the first time. Curiously, there is a last-minute attempt by SmithKline-Beecham to give out Lyme vaccinations during the seminar; some short guy with an Australian accent is scurrying around trying to set up a vaccination zone, but it never happens, though I am never sure whether the LDF approved or disapproved. There's also some mention of the new "instant" Lyme test, touted a few months back as a breakthrough, ready now to hit the physician's market. I think I'll have to know a lot more about this before I pronounce it anything but ridiculous.
I'm still having trouble with my throat, and now my nose is infected and inflamed. I'm prescribed a short course of Zithromax by my ear, nose and throat doctor. Two days after I start the Rx, I am frighteningly ill. I am walking through a fog, barely able to lift my head, hearing as if from a distance, struggling for breath. I have not felt like this since I first got ill more than a decade ago. I'm terrified - what if it doesn't go away? With Margie driving, we meet the facilitators of our support group for a brainstorming session at a nearby doughnut shop. I've been complaining all day, venting my fear, and Margie is supportive, promising me that this, too, shall pass, though I am not so sure. On the way to the meeting, I mention to her that oh, yeah, my doctor put me on Zithromax. She swerves the car and yells "You idiot, you're having a Herxheimer reaction!" Things are instantly brighter. The Zithro helps my throat somewhat so I know there's something there that the Doxy isn't touching, but I am puzzled and uncomfortable at the dryness of my nose and eyes. The area between my nose and throat feels swollen, scarred and parched. I am depressed. I still want that leg pain back instead of this, but you can't order your symptoms around like that, more's the pity. I wonder how much Sjogren's Syndrome figures in here (this is something I was diagnosed with sort of by default some years ago). In addition to this, my ankles are twitching noticeably. My nephew notices, and I make light of it, though this is exactly where I had the most intense and burning pain a year ago. Now, they feel odd - not numb, not tingling, just peculiar. And the balls of my feet hurt, a mean sharp achy hurt, making it a chore to walk. Another old bane come back to life.
Knowing what I've come to know about insurance companies, I feel vaguely uneasy about the new long-awaited and much debated Lyme legislation that finally passes in Connecticut. I'm proud, make no mistake, that my home state has taken a step in the right direction. We're guaranteed now that Lyme disease patients will get 30 days of IV therapy and 60 days of oral at the very least, but my concern is that insurers may use this legislation as an excuse to limit patients to this much only. We're assured that the language of the bill is written so as to discourage this, and that other things will be added next year to toughen and better this bill - as of now, you'll get further care if a certified neurologist, rheumatologist, or infectious disease doctor recommends it (as if they're the only ones who know how to treat Lyme? Laughable.) In any case, it all sounds good on paper, but only in practice will we see how it works. It's remarkable, though, that it actually went through. Could it be that the stories and entreaties of the many sufferers and family members who campaigned for this bill actually made an emotional impact on the lawmakers? I wonder. And as my friend Irene in California says, too bad that the sickest people have to use their time and energy fighting for this instead of fighting to get healthy - what are all the well people doing with their time?
Sitting in my car outside a fast-food joint one night on our way back from a meeting, Margie and I eat cheeseburgers and ponder the lushness of the woods beyond the parking lot. "Mysterious looking," I say, the trees lit by a full moon, their branches outstretched half invitingly, half menacingly. "Just think. You could imagine all sorts of things in there. It's like the front cover of a Nancy Drew book." Margie, whose father was actually a private detective, agrees. But of course we don't look at the woods, or fields, or beaches or golf courses in the same way anymore; now, when we drive by some greened-up area, we immediately think "ticks." But I get silly, and say "What the heck, Margie, we can go in the woods if we want - we're on antibiotics!" And it's true...in a way, I do feel kind of protected. My nephew, whose summer job is mowing lawns and caring for things outdoors, wears insect repellent with DEET and checks himself carefully for ticks every time he showers. "I'm not sure that DEET is all that good for you," I tell him. He shrugs, and more wisely than he should need to at his age, tells me that "the risk of getting Lyme disease is probably a whole lot greater than the risks would be from using DEET.”
JULY 1999: Shamefully, I had never heard of the book "Osler's Web" by Hillary Johnson, an historical expose' of the Chronic Fatigue Syndrome epidemic and ensuing cover-up; now, reading it, I am unprepared for the shocking similarities between this extraordinary illness and Lyme disease. I had always differentiated between the two so much that when I came down with something that looked, sounded and smelled (metaphorically speaking) like CFS, I never connected it to having had meningital Lyme less than one year prior. The new hair growth from the Rocephin IV validates a bacterial component here, but you absolutely can't rule out a viral co-infection. (There is lots of new information out there - on the "Stealth" virus, on something called HHV6, on old standbys like cytomegalovirus and Epstein-Barr - many of them "cross-species" viruses; I'm just not quite ready, willing or able to pursue it.) I am, in fact, shocked at the frankly neurological manifestations outlined in Johnson's lengthy chronicle, and surprised that some CFS sufferers were treated with - and ostensibly improved from - antibiotics. (Doxycycline, of course, is also in the news recently as an "experimental" treatment for sick Gulf War veterans!) In addition, I watch a videotape that Margie procures where Don Scott, founder of the "Common Cause Foundation" (and author, with his son, of "The Brucellosis Triangle" and "The Extremely Unfortunate Skull Valley Incident" - could you stop yourself from reading these titles? I couldn't) proposes the provocative premise that, among other things, MS, AIDS, Gulf War Syndrome, Chronic Fatigue, Fibromyalgia and even bipolar disorder - "degenerative" diseases all - stem from government experiments to control us by messing around mightily with chemical warfare. One could argue too that Elvis is alive, but Scott produces hard copies of government documents and ties his conjecture together so well - and so frighteningly - that it raises way too much credible suspicion. I want to believe I have nothing but Lyme disease; I keep telling myself I have nothing but Lyme disease; nothing that continuous bouts of antibiotics won't cure...help...improve...but I think I have to change my story; I know, now - have known all along, I guess - that for whatever it may be worth, it just ain't quite that simple.
I get my second Social Security Disability denial. I am surprised that this time, they acknowledge that my condition is "complex," and that I am not able to return to my previous job. I make an appointment with an attorney who spoke not long ago at a Lyme support group meeting, who strikes me as rational, humourous and compassionate. In the interim, I drive to the local Social Security office to make him copies of my medical records. "This is not something we usually do," says the woman at the counter. "After all, these are our records." "No," I say, "These are my records." Finally a claims representative comes out, leads me into the inner sanctum and presents my file. He supposes that I'm going to look at it and decide what I want to copy, but I just ask him to point me in the direction of the copy machine. "Why don't you get your lawyer to come in and do this?" he asks. "Why don't you guys give me the money to pay him to do this?" I counter. It takes me over an hour to copy the file - I use my left arm and hand as much as possible, and keep shifting my weight from foot to foot. Home again, I categorize things by date, punch them, and put them in a 3-ring binder. There is lots of stuff here that I don't want to relive, but I can't help leafing through some of it. I find an interesting Western Blot from the early 90's with three "faint" positive bands - a 25k and 41k IgG, and a 25k IgM. The lab is very careful to place a note on the bottom explaining to my doctor why this isn't positive for Lyme. In researching these, I find that 41 is a non-specific band common to any spirochetal disease, including gingivitis, but 25 is specific for OspC - and nothing but Lyme disease will cause a positive 25 band. This was eight years after I became infected.
I'm curious, too, to see what some of these specialists had to say when I went careening frantically last year, begging for some kind of help, some test, some exam, some medication, some diagnosis, some mercy, some seed of human kindness. "She is a 42-year-old white female," they wrote. "She likes to read, travel and play golf. She has a history of somatic complaints. Her exam is unremarkable." In other words, they spit back just what I told them, and they got paid for it. But by the same token, I look back at some of the actual test results not only for bloodwork, but for EEGs, EMGs and EKGs over the last decade, and I find out that in fact I have had consistently abnormal "theta" waves, abnormal variations of nerve conduction, and "a blowing heart murmur at the base of the heart, on the left side." But it's all "essentially normal." God almighty, what could their definition of "essential" be?
Part of the effects of Lyme disease on the brain can mimic those of actual, mild to moderate traumatic brain injury. For a year or so, Margie's been seeing an eye doctor well known to the local and medical community for helping rehabilitate TBI victims with their vision problems, spatial concerns, and perception. He has her do interesting eye exercises, and from time to time she needs to wear “bi-nasal occluders” - black tape applied to the inside of her eyeglass lenses to orient her focus and concentration. (We saw people with these at the Lyme March to Victory conference.) When I go for my regular eye exam at Sears, the optometrist has me staring at a screen where two squares are lit up - "Tell me when they're lined up next to each other," she says. One's up, one's down. She moves them around - frustrated, I wonder for a moment if she's joking with me. They never get anywhere near each other. "Didn't they meet?" she asks incredulously. "Not yet," I answer. "Not yet?" she says a moment later. "No," I say, "They're - well - like - two ships passing in the night." Hmmm, she says - looks like I have an "imbalance." She'll put in a "prism" to help me. "What would cause something like that?" I ask. Probably something in the nerves, something from the brain, she says. Margie is incredulous and satisfied when I tell her. "You see?" she says. "You've got it, too." Explains a lot. But with no money and no insurance, I can't get any treatment for this. Eventually, because her insurer doesn't cover it and she's paying out-of-pocket, Margie has to reluctantly give it up, too.
I have an appointment with my doctor at Yale to see whether this throat deal might be something neurological. He checks me over, feels that if there ever was a neurological component there isn't now, and believes that I should pursue a swallowing evaluation with a speech pathologist I've already been referred to. He will write a note to my ENT guy about the situation. He also suggests a "scope" - a fiberoptic exam where the ENT doc sticks a lighted wire up my nose to look more closely at things. (This will never happen, I guarantee, without general anesthesia.) And, he says, my erlichiosis and babesiosis tests were negative. I expected as much.
It seems to me that it may be time to go off of antibiotics. Maybe there is something in the Doxy affecting my throat - seems like we've exhausted all the other avenues. And just how much of this stuff can my liver deal with, anyway? I'm tired of the yeast, tired of the sunburn, and now I'm vomiting from what feels like a violent flare-up of my old nemesis, an ulcer. Add this to the fact that my symptoms are so blatantly neurological, calling for therapy that crosses the blood-brain barrier - which Doxy doesn't - and I get plenty soured. Everything put together points to getting "clean." So, not without misgivings, I end my Doxy regimen. "Why?" my friends ask - when they stopped their antibiotics, they went downhill. "Well, it's been six months," I say. "Shouldn't I be cured in six months? Shouldn't I be all better?" Ha, ha. They've been there, they say. Go ahead. Try it. Good luck.
AUGUST, 1999: What is it with this persecution of "LLMD"s? Internet sites are rampant with sagas of beleagured practicioners about to lose their licenses, of lynch-like attacks by medical boards and insurance companies using trumped-up charges to shut down the innocent who openly treat Lyme disease, and ardent pleas go out to us - the patients - to come to their aid. We are to 1.Call; 2.Write; and 3.Rally the higher-ups, our local politicians, and neverending lists of people supposedly empowered to stop the madness, as if they're really going to bother. But am I my doctor's keeper? It's true, there are ominous developments - sudden sabbaticals, antibiotic cut-offs, disinterest in the latest research findings. And it's true that we can not afford to lose the meager sources of help which we have. I'm shocked, however, to see these doctors so - well - helpless. We've gone to them for years asking for their help - virtually camping out on their doorsteps in some cases, pleading for crumbs, promising everything including the moon, and we've been turned out a lot into the cold. What, now they need us to stick up for them? My support group members disapprove when I talk like this; I'm not seeing the "big picture," they tell me. Oh dear. Am I being politically incorrect again? So sorry. Whom shall I choose to defend? The well-known local LLMD who refused to take me as a patient because I only had state aid insurance? The doctor who treated my uncle for a vicious and classic case of Lyme last summer, and then, when problems continued and he needed to see a neurologist, denied that there were any records in his office of my uncle ever having had Lyme? Run scared, go ahead, but you have nothing to worry about compared to me. Bail yourselves out. I'm too busy being disabled.
As Shakespeare wrote, "There are more things in Heaven and earth, Horatio, than are dreamt of in our philosophy." In her admirably steadfast pursuit for answers, Margie runs across an article suggesting a connection between Chronic Fatigue Syndrome and a structural defect known as "Arnold Chiari Malformation." Intrigued, she looks for more information on Chiari, wondering whether there might also be a connection here to Lyme. (Chiari - also known as ACM - can be exacerbated, perhaps even triggered by trauma, either physical or infectious.) Indeed, while the chief complaints of Chiari - a condition where part of the brain stem herniates downward into the cervical spinal canal, often associated with a cyst called a syringomyelia - are overwhelmingly neurological, some of them seem to suggest a crossover to spirochetal disease. (It's said that Lyme attacks the weakest part of a person's body - and in my case, it went straight for the brain.) Chiari is detected through a cervical MRI (and unfortunately it appears that the only real cure - or treatment - is cranial surgery). One day we're on the phone discussing cervical stenosis (a narrowing of the canal due to disks and/or bone spurs, both of which I seem to remember showing up in my own tests) and unaware of Margie's detective work, I dig out my MRI from a year ago to review it. Chuckling, I ask Margie if she's ever heard of the "cerebellar tonsils." Mine, it's noted, are "slightly Iow-lying." She's rendered incapable of speech. It appears that "low-lying cerebellar tonsils" are the classic marker for Arnold Chiari Malformation! The notes from my radiologist go on to state that "No significant Chiari Malformation is seen." What's his definition of significant, I wonder? The same definition as the weatherman when he says "No significant rain this weekend"? The same as the lady at Weight Watchers who assures you that since last week, you haven't gained a "significant" amount of weight? Obviously, this is probably all too significant, though I dismissed it initially. Well, I didn't think it was anything to worry about. Now, I tap into the web and get more Chiari information. Margie and I, armed with diagrams, march up to the hospital radiology department and view that section of my MRI. Shocked at what looks to be even more extensive herniation than what this diagrammed example is showing, I ask for a copy of the test. The question now is, what the hell do I do about it?
Sometimes, a nagging pain is nothing but that. I sit and rub my throbbing right ankle one afternoon, bewildered and bemoaning the twisty ache, when it occurs to me that I'd stepped off a deck and landed hard on my right leg the day before. So nice to have garden-variety stuff like this once in a while! But then I'm driving along in the car and I feel a cobweb, a tickle on my chin and mouth, just a catch of an itch - and then one night, during a rare "quiet" time of lying on the sofa watching TV, I notice the slightest burning sensation behind my left knee. The next morning, the pain awakens me at dawn. Both legs - the ankle portions mostly, where all the peculiar twitching was going on, but the calves, too; I want to deny it, but it's been three weeks and I think it's back. A couple of days and things have gone from bad to worse. My mouth hurts intensely, the deepness brings tears to my eyes - numbness is better than this, and I can barely support any weight on my legs. The balls of my feet continue to throb, and my legs are engulfed in pain. My regular checkup with my rheumatologist rolls around; by this time, though my throat has gotten better - a coincidence? - I've gone back on the antibiotics. He's friendly, funny, and agreeable, but he doesn't seem to want to know too much more at this point. He feels, in fact, that I'm improving - I look "brighter." I ought to; I have new glasses - cool ones - I've lost another ten pounds, and, like Warren Zevon's werewolf of London, my hair looks perfect. Besides that, I'm zooming at high speed, trying to remember everything I wanted to ask him or bring up - I don't make notes for this doctor, I've known him long enough to play it by ear. Anyway, we're not going to change the regimen at this point, though he suggests I should lower the dosage of the Doxy at some point. Antibiotics, he explains again, work as anti-inflammatories, and that might explain their connection to my pain. Then why don't anti-inflammatories work on it? Or steroids, I ask? Or the IV Rocephin? Because Doxy stimulates a certain chemical, he answers. And that is a chemical that inhibits inflammation. And it's a pretty innocuous drug to stay on for a lengthy period of time. I don't even need any bloodwork? Nope. (And I'm so curious as to my current sed rate and CPK levels - though I don't want to find any liver, kidney or platelet values askew, anything that indicates I should go off the antibiotics!) I leave the office feeling less than empowered. Don't take it personally, a friend and fellow sufferer says. Doctors want to give you something and make you better, not delve into why your case is outside the fold. My family is socked with oddities - "muscle" problems, "nerve" problems, "autoimmune" problems - all inexplicable. Well, then - who are all these people being written up in medical journals? Not us, that's for sure.
The speech pathologist who my ENT doc had me call a long time ago calls me back, finally - turns out she'd been in a car accident and had two surgeries on her leg. We meet for an hour, where she has me do some swallowing and speech demonstrations, tests my gag reflex - which is a long way from hyper, she says; even though I have the feeling of gagging all the time, she has to stick a stick back really far before I reacted - and looks closely at the structure of my mouth, palate, uvula, throat and tongue. Not quite normal, but nothing really striking either. We talk about hints to help swallow foods, ways to de-sensitize the feeling of gagging using a toothbrush and a teaspoon, neck exercises to help with the tension that results when my throat feels swollen. She says she's learned more from me than I've probably learned from her. Her gut instinct? Yes, there probably is a neurological thing going on here, stemming from some other process, maybe some autoimmune action, and just because it can't easily be seen, doesn't mean it doesn't exist. "I have doctors call me sometimes to ask my opinion about a certain patient," she says, "Wanting to know if I think it's all in their head. Well, I give my patients the benefit of the doubt. Besides, who would make up stuff like this?" I sound tremendously sexist, but I wish I could hear more men talk this way.
SEPTEMBER, 1999: I'm having some problems with my arms again - those spasms that start at the neck and run through to the hands, painful, pinning them back - it's been a year; I thought these were gone pretty much for good. Guess not. My motor control is shot, and after several bad accidents, I realize that I shouldn't try to carry a full coffee mug with the fingers of my right hand. Back to the active resistance exercises, pulling on an elastic tube, and I'm reminded to get my PT records for my Social Security lawyer. After I sign the necessary release and obtain these, I am disgusted. The inaccuracies are really reprehensible. Though I'd called and discussed my situation at length with the therapist - explaining that the exercises were helping me considerably, and I was following the written sheet she'd given me, with the understanding that I'd call for another appointment at the Clinic if I felt worse or needed a refresher - the head man had written in the discharge notes that I'd "only kept 3 appointments," that "two phone calls were made" to me, "but no response," and that my "current status is unknown." Here I am Miss Anal Retentive 1956 through 1999, and I sound for all the world like some irresponsible dip. Is it their communication that's screwed up, or what? Anyway, I immediately write them a letter and ask that it be added to these permanent medical records in order to set things straight. Did you know you can do this? The thing is, why should I have had to?!
I figure the leg pain (and my mouth, lips and chin) would be helped by the Doxy within ten days, like the first time I took 300 mg/day. But no, there's only a bit of an improvement; still, any improvement is dramatic at this point. I sign up for a Neurontin e-group on the Internet, and find out my dosage is pretty small. Still, I resist upping it - "ramping" - because I'm so afraid that some day it won't work at all. And what then. The most painful part of the legs, the back of the left calf, throbs and burns most of the day and night and is twitching sickeningly under the skin - are these muscles in rebellion, I wonder? You'd think so - anything under siege for so long has to do something, not just sit there. My legs are covered with massive black-and-blues in places that weren't bumped or hit - these bruises are from rubbing them, unconsciously at times. There's no Herx reaction going back on the antibiotics, described by many others as commonplace, but I forget that it sometimes happens later in the treatment, indicating a longtime, disseminated infection. In the meantime, I continue to hypothesize about other oddly possible causes for some of this crap. Still, I think an EM rash is an EM rash is an EM rash, ladies and gentlemen.
OCTOBER, 1999:This is a real jewel of a month, a radical, shiny, spirited month - yeah, I've got a bad back and need old-fashioned tried and true treatment; yeah, I've got fluid in my ears so bad I need the beloved Biaxin and two (!) courses of steroids to break it up (it's either that or tubes again); yeah, I've got a few of those spasms starting at the neck again and running down the arms, and some itching under the lower lips that comes - of course - from nowhere; yeah, I've got a bout of tiredness so bad I can hardly make sense and a crop of bruises on my legs so colossal and extensive it looks like I've been viciously beaten. So what? That I can live with. My friend the minister calls these moments "grace notes" - moments, or days, or weeks when you're glad you're living, when it seems like someone important somewhere promised you it would all be okay in the end. Nothing seems insurmountable all of a sudden, and "Touched By An Angel" doesn't appear outlandish. I'm visiting a friend who lives in the mountains and the canyons, in a small but remarkable house he built himself after wildfires stole his other one. There's no electricity and no hot water (well, there is hot water, when we unhook the fridge and hook the propane tank up temporarily to the water pipes). Here, I am at ease among the sunny, nearly spiritual landscape; my friend cooks up gingered lamb loins and portobello mushrooms on the grill, plays cowboy songs on his guitar and sings, and we laugh and argue and imagine. I pay special attention to my health, though, while I'm here, to be sure that this fortunate and rare R&R break isn't making me so happy that I'm forgetting or ignoring my symptoms. Truthfully, I feel a kind of healing here, and he tells me he is not surprised - this has long been known as sacred ground. While he works, I drive around the unfamiliar town and lose myself continuously, but I always find friendly people and interesting stuff, so I'm never bothered. At night, I sleep soundly, and wake up with the sun, watching blue-belly lizards doing pushups on the rocks outside my window in a land much bigger than I am. I feel sanguine; I feel capable; for a blessed change, for once, I feel collected.
With no phone, and certainly no money to use a pay phone, I'm dependent on other forms of communication. I stop at the local public library a few times a week to check my e-mail. One day there's a message from Margie. Wait - my mother has called her? And my blood tests are back? And the Lyme disease test was positive. Positive. I sit back and rub my eyes. The world around me is paying me no attention - busy patrons checking reference facts, kids hanging off their parents' arms, staff members making cheerful conversation at the check-out desk. But my world has suddenly shifted. Did I read this wrong? "Your mother called me," she writes. "Your doctor from Yale called and he's all excited - your Western Blot came back positive." Nah. Margie wouldn't joke about something like this. Now, who do I tell? My friend, for all his good-heartedness and hospitality, has made it clear that unless he has a question or there's something going on with me that he needs to worry about, the subject of Lyme is off-limits, and I have to respect that (though he's assured me that I don't dwell on it anyway). I walk out carrying this little piece of information like a treasure, almost afraid that if I forget it - even for a second - it will disappear altogether. There you go, medical profession. The goddam objective evidence you kept wanting, wanting, wanting. That you made holy. So. Now what?
NOVEMBER, 1999:Back east, and I find out that my IgM is "reactive" and my IgG is "equivocal." My doctor from Yale is surprised - first of all, that I have a positive test after "numerous negative Western Blots" (make that one negative Western Blot, I remind him, done at your lab) and second, that it's IgM antibodies that are reactive, since that's indicative, he says, of acute, recent infection. "I don't think you have a new infection," he tells me, "but I don't know why you haven't converted to IgG." Jeez, I'm sorry, I'd like to, doc! (Later I read that IgM antibodies often remain long after IgGs cease and desist.) He's going to fax me a copy of the test and mail one to my rheumatologist. "Perhaps you should be re-treated with IV," he suggests (yes!), "But I think we'll leave it to your rheumatologist how to proceed." With test results in hand, I check them against the definitions in "Everything You Need To Know About Lyme Disease." I have two IgM bands - 23 and 41. According to Karen Forschner's printed guidelines, 23 is an OspC (outer surface protein "C") band, specific for Borrelia burgdorferi, and 41 is a flagellin protein for all spirochetes. I have three IgG bands - 34, 41, and 62. The guidelines state that 34 is an OspB protein, specific for Bb; the 41 is the same as for the IgM; and the 62, I can't find anywhere. The lab report states, under "interpretive comments," that "a reactive IgG....is consistent with past exposure to B burgdorferi or post acute Lyme disease. A reactive IgM....is consistent with acute Lyme disease [or, as my doctor puts it, recent infection] although IgM antibodies may persist. A positive IgM Western blot in the absence of IgG reactivity may reflect cross-reactive antibodies." What the hell are cross-reactive antibodies? I look this up, and find out that they're antibodies to other stuff you may have in your body, and which the Lyme test may mistakenly interpret as Bb antibodies. Sounds like they could be the Dogmatic Doctors' Reason For Doubt. It's significant to note that when Margie was retested for Lyme after several months on antibiotics - at a different lab than I, a couple of years before I met her - she, too, showed evidence of a "recent" infection. We think that the antibiotics are, in fact, freeing up antibodies, maybe killing off some spirochetes and allowing the antibodies to start working again. I need to do some research and find out more about this - how many others are getting similar results. "There's something happening here...what it is ain't exactly clear..."
By now, I'm on a downward spiral. It starts with pain in the ankles - similar to the pain that developed last summer when I went off the antibiotics - and then in the balls of the feet and the backs of the calves. Soon, it hurts to gently run soapy hands up and down my legs while I'm in the shower. I can barely stand the weight of the sheet on my bed again - the cloth of my jeans burns me. My face is numb, my chin is stinging, my lips itch, my cheek crawls. I don't understand. The bottoms of my feet twitch with pain, pain like a heart beat under the skin. I'd like to strangle the devil who is hanging off me holding a hot coal on the inside of my right sole. Even in my sleep, the pain comes through - my rest is anguished, incomplete. How easily I could snap now, avoid human contact, retreat into a hell, unable to think, reason, plan, decide, or hope. What did I do? What am I not doing? Have I not learned some lesson, perhaps? Happily, I settle in to help my older nephew with a term paper - I have always tutored kids. Maddeningly, I cannot form the right words in my brain. I stop, stammer, sweat - my heart races, my mouth won't move properly, I am inarticulate and fed up. My eyes are stiff and dry. I can't focus. I have constant trouble breathing, the unconscious rhythm is gone, I have to act as my own mechanical respirator - in, out, in, out, do not stop. Oh, give me a minute's rest, even a second's. Just let me live. This has gone on too long.
I have to postpone my rheumatologist appointment for a week - I catch a head cold and a nose and throat infection, and I'm feeling too lousy to to go the doctor. (I haven't been taking my echinacea because I'm confused again - why can't the jury agree on this stuff?) Finally, I drag myself into his office. Despite the ominous things I have read lately about immunizations, I decide to get a flu shot per status quo. (Treating myself like an Average Joe, like a normal person here.) The doctor agrees that I have, in all probability, converted to seropositive - "at least by this lab's criteria." (But this is a highly regarded, literate laboratory that uses the CDC-recommended isolate for testing.) "You just keep fighting the battle," the doctor says quietly, and I wonder at my luck in deserving one doctor who, while unlikely to be lying awake nights thinking about my case, has at least believed in me all along. Others haven't had nice things to say about him, so it's peculiar, but gratifying. "We are not going to do any retests or IV therapy at this time, we're going to stay on the Doxy - a small price to pay," he says, and he won't reduce the dosage, and we're going to focus on my Social Security Disability. This is my priority. I'm duly notified that my Administrative Law Judge hearing is to be held on December 28th.
Plum Island. It was an engrossing novel by Nelson DeMille, all the more chilling because Plum Island is so real; it hovers forbiddingly in the mist of Long Island Sound, just a short ferry ride from the tip of Connecticut, where I grew up; it's been involved in animal disease research since 1956 - the year I was born; and rumors are it's involved in less than benevolent activities. Or are they rumors? Now the United States Department of Agriculture wants to make Plum Island a "Level 4" facility to study diseases lethal to humans. Hmmm.
DECEMBER, 1999:
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