Lyme Disease Stories
There is much to learn about Lyme disease by listening to others. Read these experiences with people who have faced Lyme disease.
Story 1: 38 year old woman suffering from seemingly random and unrelated symptoms.
I am a 38 year old woman. For about three years I have been suffering from seemingly random and unrelated symptoms. I had a lot of problems with one leg, then the other, one stiff hip joint, then the other, weak ankles, and problems in other joints. I also had a lot of gynecological symptoms that seemed to get worse and worse, starting with painful intercourse and very frequent UTIs, then a lot of pain, dryness, and misery leading to a total loss of libido and energy.
I alternated between going to specialists who would give me expensive, frightening, and sometimes (I feel) bizzarely chosen tests (brain MRI for hip pain), and getting discouraged and just trying to adjust to my new, deteriorating reality, "This is just what it feels like to get old." But then I would have a reality check, "If this is just normal getting old, nobody over 35 would be smiling at all." So then I'd go back to another doctor or specialist. One of my favorites was the male gynecologist, who when I told him I couldn't even think about sex and it was painful to even touch my vagina, informed me of the importance of foreplay to the female in sexual relations. As if by age 38, I hadn't figured out how sex works, and as if foreplay would even be possible in my state.
I was getting pretty resigned. But my conviction and my trust in my own body won out. I knew my body. I knew something was wrong. I began to do a lot of research and I was led to Dr. Cameron. I made an appointment. I went in with a spreadsheet of all my symptoms, determined to get through all of them and not forget any.
Dr. Cameron listened to me in a very caring, human way, he asked appropriate follow-up questions, etc. He explained to me that my symptoms could be related to Lyme disease. He said he would send my blood for testing, and then we would discuss options. He explained what those options were even before the test. The test came back negative. He reviewed my options - start treatment on
antibiotics (improvement in symptoms or lack thereof would aid diagnosis) or explore other avenues, such as see a different gynecologist to try to treat vulvodynia, interstitial cystitis, etc. He didn't seem to have an interest in which I chose other than my doing what I was comfortable with and getting relief. I really liked that.
I felt like he was a partner in my health. I went the conservative route and held off on antibiotics. I had no luck with the next gynecologist. It took me a month to get in, and then another month to find out I had "No evidence of yeast." That apparently being all she tested for after me spilling my heart out and telling her my concerns about early menopause, no interest in sex, constant pain, etc. So I started antibiotics with Dr. Cameron. Within 3 weeks all my gynecological symptoms had disappeared.
After 3 years of deterioration! It's like I have a new lease on life. My joints are getting better too. But I have been exercising a lot, and I don't know if the improvement there is due to the antibiotics. However, I had exercised a lot in the past three years as well, even went to physical therapy, and had had very limited improvement. It could be that the antibiotics set the stage for the improvement with exercise. But the improvement in gynecological symptoms is indisputable, complete, and due to antibiotics. I don't know if I had/have Lyme. But I had an infection, without a doubt. And not one of the "usual suspects" either, as I had been tested for chlamydia, gonorrhea, etc. etc. etc. In my second month of antibiotics I'm still improving.
I am very grateful to Dr. Cameron for working with me to improve my health. He never sounded certain or dogmatic at any moment about what I had or did not have. His main concern seemed to be with helping me on my journey toward health. I found his approach very human and refreshing - not to mention lifesaving. Thank you!
Story 2: "It's Lyme," he said. "Rock and roll." I do sometimes wonder why it took three tries before reaching a proper diagnosis.
EARLY last summer, friends invited me to their parents' home upstate, to spend a quiet weekend with the dogs in the small town of Callicoon on the banks of the Delaware. It seemed a harmless enough way to kick off the season. We prepared vegetarian barbecue, and had spirited debates that set off political parrying among the generations. My dog had a great time, chasing deer and wandering the hillside and river banks, while I stuck to the dirt roads and well-cleared paths. That night he passed out in my bed.
The next morning, I woke up with a sharp pain in the back of my knee. Since I study tae kwon do, I thought perhaps I'd been a little exuberant in kicking bags the day before. But when I examined the spot, I found a hard red bump that was painful to the touch. I assumed it was a mosquito bite. Within two days, back in the city, I had developed a high fever, headache, generally altered consciousness and a large necrotic wound at the site of the bite. My flesh was dying. Fully insured, and fully certain I would soon expire, I visited my primary care physician, who immediately sent me to my neighborhood emergency room at Beth Israel. I was the most popular patient there. The pages went out through the hospital almost as soon as I arrived; everybody came to see me. I felt as if I'd won a prize, although it soon became clear that my only accomplishment was not the kind you want to have.
Had I been out of the country? the doctors wanted to know. Last summer, Thailand, but surely this can't be related. Might I have been shot? I hope not, but there's always the possibility. Did I work at the post office? Sometimes, when the lines are really long, it seems as if I do, but no. Somebody said something about cutaneous anthrax (it was big that year), but the notion was soon dismissed. Finally the head man came in, and after securing my permission to take photos for educational purposes, announced that he didn't know for sure but suggested that most likely I had been bitten by one of the most poisonous arthropods found in North America: the brown recluse spider. The dermatology surgeon was paged.
She herself was braving nature, out on Long Island. I'd have to be admitted until she could make it back into the city. Or, since I seemed otherwise healthy, I could go home with some antibiotics and pain medication and visit her office first thing in the morning. Her biopsy the next day, with an accuracy rate of about 60 percent, confirmed a spider envenomation. I was given broad-spectrum antibiotics, prednisone, and dapsone, an anti-leprosy drug. One month later, I was still in bed. The dying flesh had slowed, but the red bull's-eye rings around the bite had spread almost entirely down to my ankle and up to my hip. The doctor offered nothing new, except to tell me that these were nasty little buggers, so sit tight.
Soon I was on the Internet, armed with the worst kind of knowledge (the partial kind), and communicating with a volunteer fireman named Dale in Illinois, who also had a brown recluse bite. Only when we exchanged digital photos, it turned out that he had a football-sized chunk taken out of his thigh, and mine was now just the size of a quarter. Dale forwarded me links to the Recluse Community Project, among other sites, where I learned that brown recluses are not indigenous to New York State, nor anywhere nearby. They mostly stick to the South and Midwest. I visited another hospital and was confronted by the same situation that had occurred at Beth Israel:
The camera came out, and every staff member was called in to stare at my wound and shake his or her head. They concluded that the culprit was probably some sort of spider. Someone suggested Lyme disease, but another person dismissed that idea. "No way," he said flatly. "Deer ticks don't leave bites like that." Another month passed, and I was still bedridden, now so sore that walking was a problem. I was avoiding the stench of summer, but because of the compulsory confinement, I actually missed it. At that point, I would have given almost anything to step over an eviscerated rat on the sidewalk. I turned to a homeopath, who told me that since I was on the brink of publication of my first novel, perhaps the spider that bit me was "simply initiating me into the storytelling tradition, as the spider is the weaver of tales."
Growing still more desperate with this news, I proceeded to shell out $400 to a Park Avenue dermatologist, who told me he thought the cause was a spider, but if it were I should have been well by then, so he really couldn't say. In August, I started calling City Health Department numbers and ended up at the Poison Control Center, somehow persuading the operator to connect me with an actual doctor. I told him my story, and just when I thought the nice man on the other end of the phone was humoring me, he told me to meet him at Bellevue's emergency room so he could take a look. Bellevue? As in, leather restraints on the gurneys? Indeed. I endured a line 20 people deep just to see the triage nurse.
Alas, it took a public city hospital like Bellevue to cure me of the exotic ailment I had picked up outside of New York. As if medicine were a competitive sport, the emergency room staff considered every possible insect and mammal bite out there, including rat. Sure, I had to wait a while, but my blood tested positive for Lyme disease. Two weeks later, the toxicology resident delivered my test results on the phone: "It's Lyme," he said. "Rock and roll." I do sometimes wonder why it took three tries before reaching a proper diagnosis, but given the many similar symptoms, namely red rings and streaks that frequently surround both spider and tick bites, I try to cut the doctors some slack.
For its part, a spokesperson for Beth Israel admits that when illnesses present with similar patterns, inaccurate diagnoses are sometimes made--especially in an emergency room setting--and they expect patients to seek follow-up care elsewhere if they are not responding to a particular treatment. At least New Yorkers can be safe in the knowledge that we may leave the confines of our concrete jungle, pick up some foreign bug (literally), and then ultimately be cured of it at one of our great urban medical institutions. Still, I have vowed never to visit Lyme country again. If I want to hike, I will climb stairs by repeatedly transferring between the F and C trains at West Fourth Street. If my dog wants to chase deer and shuttle their ticks onto me, he can disperse the rats from our building's garbage area.
As for the beach, I'm happy with the fire hydrant's cool spray that veils my block of Seventh Street, sending teenage girls shrieking in delight as lithe boys with ever-deepening voices taunt them with buckets of water. I will choose Tompkins Square Park over any Catskill, Peekskill, Adirondack or even a Hampton, because as much as they say it's a jungle in this city, I'm here to tell you it is a jungle out there, where the M.T.A. stops and nature begins.
Story 3: The doctor refused, saying that she “couldn’t possibly have Lyme.”
When Staton Rabin was three years old, her parents offered to buy her a toy typewriter. She insisted on a real one, and has been writing ever since.
In 1994, while working for movie studios as a freelance story analyst and shortly after completing the manuscript for her first novel, Rabin came down with a mysterious illness. It started with arthritis-like pain in her right knee, and some weeks later evolved into crushing weakness, nausea, fevers, and burning pain in her muscles that she described as “feeling almost like I’d been poisoned”. Within a few more weeks she was mostly too weak to sit up or walk. The illness came in waves-- for hours she’d be crippled by it, then she’d seem to recover for a few hours. Eventually, those brief episodes of recovery stopped happening. Her GP at the time misdiagnosed her with “a virus”, and when she didn’t get well claimed there was nothing wrong with her, unplugged her IV dextrose at the hospital, and had her summarily discharged. “My father visited me in the hospital, at the time. He said I looked absolutely green, I was so ill. Yet that doctor dismissed me.”
Rabin went from hospital to hospital, seeking help and never doubting for a moment that she had contracted some sort of infection. But her symptoms were always dismissed and medical tests showed nothing except an occasional fever. She seemed to recover fully for a few weeks, then got even more ill than before and was virtually bed-ridden. What she didn’t know was that she had just entered phase two of her illness.
Then, one day, a neighbor told her that her symptoms sounded exactly like Lyme disease—an illness that had already infected several people on her block in Tarrytown. A recent California transplant, Rabin knew little about Lyme. She bought a book, COPING WITH LYME DISEASE, and realized that she had many of the symptoms of classic Lyme. She asked her new doctor at the time, who by coincidence happened to be an infectious disease specialist and head of the Lyme program at a major New York City hospital, if she would test her for the disease. The doctor refused, saying that she “couldn’t possibly have Lyme.”
By this time, Rabin was so weak she was completely unable to work. But, knowing that she was gravely ill, she kept up her search for a proper diagnosis and treatment. She managed to get in touch with the local Lyme group president, the late Betty Gross, who recommended that she see Dr. Daniel Cameron in Mt. Kisco. Rabin saw Dr. Cameron and his partner at the time, Dr. O’Dell, who agreed that her symptoms were indeed consistent with Lyme, they thought this was a possible diagnosis, and agreed to test her for the disease.
On September lst, 2004, six months after she contracted the illness, her blood tests for Lyme came back positive: eight bands on the Western Blot and a positive ELISA test. Treatment with antibiotics was started immediately. After she had been on oral antibiotics for several weeks, Rabin passed by a mirror while getting out of the bathtub and to her astonishment she saw two, large circular rashes on her back-- the classic, Lyme bulls-eye rash! There they were, like the mark of Cain. Now, she finally had proof of what had happened to her. It is not uncommon for the Lyme rash to recur during the early stages of treatment. It’s possible that the Lyme rash appeared on Rabin’s back shortly after she was bitten by the tick six months earlier, Rabin explains-- but since it was on her back, she did not see it. Rabin notes that, apparently, she was bitten by a nymphal tick in March of 2004 while visiting a farm in Westchester, despite the fact that she had sprayed her pants with DEET insect repellent and had pulled the top of her socks over her pants. She did not, however, ever check herself for ticks-- and that was a fateful mistake. She wryly calls it, “The million-dollar tick,” for all that that mistake has cost her.
“I thank God that I found Dr. Cameron, and that he persisted in treating me for as long as it took to get me back on my feet,” Rabin says now. “Many doctors would have given up on me. Nothing that I’ve accomplished in my life and career since that terrible time in l994 would have been possible without his courage.”
It took a total of 9 weeks of daily I.V. antibiotic treatment to really turn her illness around. By the time she was diagnosed, the spirochetes had clearly already entered her Central Nervous System. As the antibiotics hit each of the “targets” in her body, her symptoms seemed to temporarily worsen, intensifying pain and disability. One day, a side of her face or leg might go numb, another day she’d be stuttering, or have a stabbing pain behind one eyeball or on one side of her skull. Her body would jerk convulsively whenever she drifted off to sleep—waking her. An accomplished writer even before the onset of her illness, Rabin almost completely lost her short-term memory, and was no longer able to reason well enough to do more than write a short letter. The process of treatment was grueling.
“Back in those dark days,” Rabin explains, “Dr. Cameron would patiently take my calls and reassure me as each new terrifying Lyme symptom surfaced. I never knew what would happen next. As a human being, I found this deeply distressing, to say the least, but as a writer, I was witnessing a fascinating phenomenon, as the disease attacked one area of my brain and body after another. I developed dyslexia-- I could no longer spell. I remember I was so dizzy and my sense of equilibrium was so ‘off’ that I’d get seasick in the bathtub, and I was so weak I’d have to crawl out to get back to bed. The worst symptom by far was what’s called ‘Lyme fog’--
a physical sensation of swelling in the brain, that feels like a dark curtain has descended and it’s like trying to think through pea soup. I’m not describing a form of depression-- I’m talking about mechanical problems in brain function and a distinct physical sensation of blockage in the brain that impedes thinking and cuts one off from one’s surroundings. When I’d see Dr. Cameron, I would sit next to his desk in an examining room for what seemed an eternity, struggling to find a word or remember what I had been trying to tell him. He’d always wait patiently for me to be able to explain what was happening.
Whenever he was called away to take care of another patient, he’d always come back and check on me and talk to me as long as it took to make sure my questions had all been answered.” What kept Rabin going during all this was the same kind of iron-willed determination that has helped her in her career as a writer. “Being a successful writer means being able to deal with setbacks and failure, and persisting in one’s efforts, so I already had those skills in place. Yes, I felt it was hopeless, at times, when I was trying to recover,” Rabin says. “I was only in my mid-thirties when I contracted Lyme, and here I was a young writer, losing every part of me that I counted on in order to do my work: my memory, my ability to reason, my stamina. Even my ability to sit up in a chair for more than a few moments. I went through this almost completely alone, because most family and friends didn’t know how to deal with what had happened to me. What got me through it was two things: the fact that Dr. Cameron and his wife Joan stuck with me through thick and thin so I was able to be treated long enough to turn my illness around. And my own belief that my life wasn’t meant to end this way, and that every time my symptoms seemed to worsen during treatment, this was a sign the drugs were doing their job. And both those things turned out to be true.
“Having a severe, chronic case of Lyme can be very close to unendurable. And it’s a hard thing to accept that one will never be l00% well, again. I am 90% or more better than when I started treatment-- which means that in a practical sense, I’m l000% better, because I can work full-time at home and have a pretty normal life. I no longer need treatment of any kind. I still get tired easily, so I don’t plan to do more than one major job each day, especially if it involves any traveling. The way I work l2 hours a day, turning out one book after another, teaching, lecturing, writing articles, analyzing screenplays-- nobody would ever guess I wasn’t completely well. I think what’s helped me adjust is that, frankly, I don’t remember what it was like to have the energy I had before I became ill. And my short-term memory loss is fairly mild these days-- it’s only a problem when I get tired. I have limitations, but I’m used to them, and I never let them affect my work. I never miss a deadline, and for exercise I can walk many miles at a time.
I’m so much better than I was, and am able to support myself.”
Trying to keep a roof over her head while all this was going on in her life was a challenge. Of course, the economic impact of having Lyme was catastrophic, so I haven’t quite dug myself out of that completely yet. The social safety net certainly didn’t do what it was supposed to to help people who get ill-- it was too little, too late. My health insurance tried to pull my coverage even though I was paying my premiums. And, as every Lyme patient knows, the system is corrupt when it comes to deciding who gets disability payments from Social Security—Lyme patients are always automatically denied help, until they go through an appeals process that can take over two years and this eventually requires the help of an attorney and a hearing in court. Social Security hopes Lyme patients will give up or die before they have to grant them help.
Even when I was deathly ill, getting I.V. antibiotics three times, and had a shunt in my arm, the folks down at Social Security were claiming I could lift heavy objects and continue to work. What did they think I could do? Be a longshoreman?” Staton says, laughing. “One man who works for Social Security phoned me just to yell at me and try to intimidate me so I wouldn’t appeal my case. Men-- strangers to me—who claimed to work for the Dept. of Social Services threatened to throw out my application for food stamps and vandalized my garden after I insisted on seeing their I.D. before speaking to them when they came to my apartment without notice. This is the kind of thing that goes on when people who are genuinely in need of public assistance try to get help.”
It’s been a long road for Rabin. But now, life is good for her, and she keeps up a work and lecture appearance schedule that would exhaust people half her age. Her novel for kids and teens, BETSY AND THE EMPEROR, has been published by Simon & Schuster, she has two more novels in the works for her publisher, she gives speeches for schools, analyzes over 200 screenplays per year, writes articles for “scr(i)pt” magazine, and teaches writing.
“I have a great life, a busy life, and a lot of friends. I consider Dr. Cameron one of them,” she says. “My one major regret in life is that my illness delayed my finding a husband so I could marry and have a family. Life is good for me now, I’m quite well, and expect to stay that way. So finding the right man is my next project,” she says, smiling.
Continue reading here: Lyme Disease Treatment Guidelines Development
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