From the Hartford Courant, Hartford, Connecticut - 2 March 1999 http://www.geocities.com/HotSprings/Retreat/1593/courant-special-mar99.txt Table of Contents ----------------- 1 - Bitten: Six Months With Lyme Disease - 2 Mar 99 2 - Debate Over A Disease - 2 Mar 99 3 - Tolerable Aches, Persistent Pain - 2 Mar 99 4 - Who Needs Lyme Vaccine? - 2 Mar 99 5 - Prevention Focus Of Conference - 2 Mar 99 6 - After The Tick Bites - 2 Mar 99 7 - Removing Ticks - 2 Mar 99 8 - Bites By Town 9 - Bites By County Articles -------- 1 - Bitten: Six Months With Lyme Disease - 2 Mar 99 Bitten: Six Months With Lyme Disease By DEBORAH PETERSEN SWIFT This story ran in the Courant March 2, 1999 My husband and I share plenty of private jokes born from our similar, sometimes smug brand of humor. Funny to us are people who manufacture reasons to worry. There was that woman who was non-plussed when we spotted a pair of deer while vacationing in Maine. As we tiptoed closer, trying not to spook the deer, she tried to spook us. "They carry deer ticks," she hissed. From then on, we snickered every time we thought of The Woman Who Demonized The Spindly Legged Innocents. But last summer, our cockiness melted to vulnerability -- the kind none of us likes to admit. I sat on a bench in downtown Windsor early last fall alone with the realization that my body, which had pedaled a bicycle across America just two years earlier, was not going to carry its weight any longer. A one-mile stroll had become too much for me, and my husband was sprinting home to get the car. I had Lyme disease, I was getting worse, and there wasn't a doctor out there who could say when I would get better. Worse yet, the doctors couldn't agree on how to make me well. No Rash, No Worry? Waiting for my husband that evening was a low point, but things would get worse during the six months that I wrestled with the disease, the medical community and the possibility that a tick tinier than a freckle would prevent me from ever being "normal" again. Statistically, there is no state in the country where I had a higher chance of getting Lyme disease than in Connecticut, yet I found a laundry list of other explanations for the symptoms that began in early August 1998. Of course I was tired. I had just returned from the cobalt blue Caribbean sea to the neutral-colored walls of my office. My job as an editor was stressful, I wasn't getting enough exercise, ditto for sleep and my mom had just been diagnosed with Lou Gehrig's disease. Add the crowning blow of turning 40 last March, and you had a stressed-out baby boomer. No reason for urgency there. I got an appointment for a physical in two weeks. I didn't mention that I was feeling tired and achy because those symptoms seemed so general, nothing terribly special. I would not think of Lyme disease until a colleague suggested it later. After all, as a Connecticut resident, and a frequent visitor to Block Island and Cape Cod, I had committed to memory Lyme disease's signature bull's-eye rash that indicated a deer tick had infected you with Borrelia burgdorferi, the bacterium that causes the vector-borne illness named after Lyme, Conn. I would know it when I saw it, but I never saw it. I was among the 30 percent or so who never report getting a rash, increasing my chances that I would be misdiagnosed. Lyme disease is like a dress that, while made of the same fabric, hangs differently on everyone. Someone with a numb face and migraine headache may have Lyme disease, but so may someone with joint pain and a high fever. It's a multisystem illness and -- as I would find out the hard way -- many patients end up wearing this unflattering dress for a long time. My bouts of severe fatigue continued that first month. I took my 14-year-old nephew to the beach at Watch Hill in Rhode Island Aug. 12 and each time I tried to get up after riding a wave, my body strained, as though heavy weights were holding me down. Still, I had nothing to show to prove that I was sick: no fever, no runny nose, no sore throat, no doctor's note. Just a persistent headache, plenty of body aches and exhaustion. Later that week, I had had enough. I asked to see the doctor immediately. It had been two or three weeks since I felt right. I mentioned Lyme disease, and the doctor was steering there too. When Lyme disease was identified for the first time in the United States in 1975 -- partly because of a Lyme mother's persistence in trying to find out what was wrong with her children and others in her community -- it took time for doctors to recognize its symptoms, initially thought to be arthritis. Now doctors in high-risk areas often test for it and some even take a better-safe-than-sorry approach, treating the disease based on symptoms, not blood-test results. Such prophylactic treatment has led to claims that Lyme disease is now overdiagnosed and to warnings against overlooking other diseases. Adding to the confusion are those who say Lyme disease is underreported -- that the actual number of cases in Connecticut is up to 10 times the 3,412 cases reported in 1998. The federal Centers for Disease Control and Prevention suggests the number is two to three times higher than reported. It can indeed be hard to get a straight answer at the onset. Blood tests are not foolproof. Some researchers say false negatives can be as high as 30 percent. False positives occur but are less frequent. I didn't know about this paradox when I was tested. My first blood test was negative. Heart was fine, cholesterol, weight and blood pressure low. At this point, a doctor can send you chasing elusive answers -- depression, stress, lupus, arthritis, etc. etc. Or the doctor can do what mine did -- order a more detailed blood test for Lyme. What if I had Lyme? Wasn't the passage of time giving the spirochetes -- or corkscrew-shaped bacterium -- more time to ravage my body like nasty Pac-Mans? Nearly a week of restless nights passed, and one morning I woke up crying and turned to my husband, "What is wrong with me?" It was Sept. 3, more than two weeks after my initial visit and a month after first noticing symptoms, when my doctor called to say I had tested positive for acute infection of Lyme disease. He would treat me with my first antibiotic, Zithromax, for four weeks. I was certain modern medicine would conquer this nuisance with a "slam dunk" -- four weeks of antibiotics. I went on-line to learn more. Was it late or early stage? I felt like I was somewhere in the middle. If it was late stage, things would become complicated. But hadn't the doctor said this was an acute infection? I blocked out any other possibility. It Came Like an Avalanche As Lyme disease was pushing against me, my instinct was to slam it up against the wall. I kept pushing myself to go to work, to go out on weekends. Every day, I would decide whether I was well enough to go to work. Could I make it up the stairs without screams from my knee joints? Would I be able to hear my reporters through the distraction of a throbbing headache? I missed several days of work in September. On these days, I would often sleep past noon, yet awake exhausted. The aches spared no part of my body. There was no comfortable resting spot -- the couch, the bed, the chair -- none could relieve the discomfort. Trying to explain Lyme disease to a boss is challenging because its progression is often less linear than with illnesses people are accustomed to: you get sick, you take pills, and everyday you feel a bit better. Not so with Lyme. Energy levels and pain vary daily, sometimes hourly. Its onset is equally unpredictable. One friend fainted in the shower, developed a fever, but was better after four weeks; another took antibiotics for a month, but had headaches, ringing in the ears, vision and stamina problems for an entire year before he recovered. Finally, I began to notice three weeks into my antibiotics that good moments outnumbered the bad. I told my boss -- I had this thing licked. But only a couple days later it returned, and I was as unprepared for it as a skier swept up in the commanding force of an avalanche. I had relapsed. The pain was back. I was worse than when this started seven weeks earlier. With just a couple bright pink pills left clinking in the bottom of my medicine bottle, I called my doctor who said that Zithromax would keep working for two weeks after I stopped taking it, and it should wipe out the bacterium that stubbornly hides in parts of the body where blood flow is minimal. So why was I still sick? Exhausted, I lay in bed while my husband returned to the Internet. He gave me the phone number for the Lyme Disease Foundation in Connecticut. I didn't know it then, but I was calling a controversial organization in a battlefield I didn't even know existed. I would learn about that war later. The woman told me of a term I didn't understand -- Jarisch-Herxheimer Reaction. It meant that some patients get worse before they get better; the Lyme's last stand, so to speak. What about Zithromax? The Web sites do not mention it; does it work? Zithromax is fine, she said. The Internet has opened up doors to help patients like myself become more aggressive in challenging a doctor's prognosis. Still, on some days it can feel like an entrance to a shop of horrors. Web sites discussing extreme cases in which people have died are frightening when you are home alone all day. In most cases this disease is simply treated, but I was learning that the number of difficult cases was far higher than I first imagined. An astounding one-third of Lyme disease sufferers do not feel 100 percent for several months, even a year, says Alan G. Barbour in his 1996 book: "Lyme Disease The Cause, the Cure, the Controversy." Some doctors call Lyme's aftermath "Post-Lyme Syndrome" others call it "Chronic Lyme disease." A minor difference in semantics, but a major divide in treatment beliefs. I was about to find that out on a detour I believe delayed my recovery. Doctors: The Next Generation Like many people my age, I grew up going to one doctor. Our family could count on him for housecalls: when my brother had a fever so high he dreamed the house was on fire, when an inner ear infection made me too dizzy to walk. I think my family doctor -- retired now -- was on my mind as I sat down to make an appointment with a specialist. My general doctor had run out of answers for why I was still sick. I called another doctor, and another. No appointments for a month. None for two months. Their lack of urgency or compassion blindsided me. My doctor urged patience. Patience? I couldn't work, and I feared a lapse in medication would harm my chances of a cure. Finally, I took the earliest appointment Oct. 8 with a rheumatologist and headed back to the couch to watch another video. By now, I was renting them a half-dozen at a time. My nights were long. I did crossword puzzles into the early morning hours to distract me from the pain, and on some level reassure myself that the neurological problems that Lyme can cause had not found me yet. At work, my bosses were moving around chess pieces to fill the spots left vacant by my absence. One boss spent nearly eight months struggling to find a cure for her husband who was sapped of his vitality for no apparent reason. She is convinced he had Lyme disease. This meant she understood my dilemma. I worked out an agreement to write from home on my good days. Arriving Oct. 8, I was taken aback by this doctor's gruffness. "Who are you?," he barked. Oh boy. I had a lot riding on this appointment after realizing how hard it is to get one. Sometimes, he explained, Lyme disease patients who are not given anti-inflammatories with the antibiotics develop lingering arthritic-like symptoms. I should take Advil for the pain, and he would give me a month's worth of Relafen, an anti-inflammatory. He seemed skeptical that I ever had Lyme. He said things that surprised me -- like you don't have a dog or romp in the woods like others at a high risk. This didn't make sense. I had already tested positive for Lyme, and I was at a very high risk. I had backpacked in June, visited Cape Cod in July and gardened to the point of obsession. Ticks, I learned too late, were as likely to be in my backyard as along hiking trails. They dwell in damp piles of leaf debris, and I had delved my gloveless hands to clear out around bushes many times while foolishly wearing sandals. Deer ticks are most likely to affect humans while in the teeny nymph stage -- about the size of a poppy seed -- and because they do not fly, they often crawl onto a human foot and travel until they hit a barrier or an exposed fleshy spot to dig in. This doctor was convinced the anti-inflamatories would help me, and I was willing to try anything. A day later, I realized that I was confused about what the doctor had told me. He had talked quickly and used technical terms I didn't fully understand. When I asked him to clarify, he still did not translate the information into layman's terms. He left me with the impression that he didn't think I had Lyme disease, but I wasn't sure, and I was afraid that if I did and I went too long without antibiotics, I would suffer long-term consequences. I asked my husband to call the doctor for clarification. He, too, had trouble getting a straight answer. Finally, he did. Yes, the doctor thought I had Lyme. No, he did not think I needed more antibiotics. Dark Days and Distractions With the brilliant leaves of October painting the outdoors, I entered my darkest days. The pain in my knees made walking up and down stairs tough, and some days my fingers ached so that I could barely write in my journal. I saw few people. I had stopped looking in the mirror by now because my face was so ghostly pale that it spooked me. I had no energy to visit my Mom, who was unable to speak on the phone, and I relied heavily on daily calls from my Dad. It still pains me to recall these days because underlying them was the realization that no one is spared disease. My mantel was filling up with get-well cards, and my writing assignments were welcomed distractions. Still, I was not cured, and I needed to find a "Lyme-friendly" doctor. For those like me who do not respond to the first round of antibiotics, a treatment choice must be made, and unfortunately, the scientific jury is still deliberating. Many people get better without more antibiotics. Some do not. Some get better with more antibiotics, some do not. How is that for confusing? I didn't know where to go next, and I needed more information to decide. The Lymies I phoned Christopher Montes of Farmington. A colleague had told me about him, but I was putting off the call because Montes has chronic Lyme disease, and I did not want to entertain the possibility that I did too. Although his illness, diagnosed as Lyme five years ago, can bring him to tears, he has not lost his sense of humor. "I was waiting for a journalist to get this (disease)," he said, half-jokingly. When I stopped laughing, Montes told his story with the conviction of a preacher, his words edged with an anger of a man wronged by a system that misdiagnosed him, and even once told him to see a psychiatrist. His challenge of the medical community -- picketing included -- has caused some to dismiss such "Lymies" as nonsense-makers. Still, Montes taught me more about the Lyme disease debate in 10 minutes than I had learned in two months. And he understood when I told him that the worst part of every day was when my sore feet first hit the floor. He gave me a doctor's name which I wrote down and added to the ever-increasing pile of Lyme papers. It sat there for awhile. In late October, three weeks after seeing the rheumatalogist, I called him again. I had awoken at 3 a.m. terrified that I would never get better. The pain was not going away. It was Oct. 29, two months since my diagnosis, nearly three months of discomfort and fatigue. This time my husband and I had a plan. We would listen to his advice, but we would ask for a second round of antibiotics. The anti-inflammatory drugs had not relieved my pain, which required me to take Advil once or twice a day. And my husband would come in to the examining room with me. I was beginning to understand the advantage of having another person there when a doctor probes you with instruments and questions. This time, the doctor said I had fibromyalgia, a musculoskeletal pain and fatigue disorder that affects muscles, ligaments and tendons. It basically makes you feel like you have been hit by a truck or run a marathon. He said it could last nine to 18 months, and the key would be pain management, not antibiotics, to help me sleep and work. Nine to 18 months. The cause of this disorder? No one knows, he said. My exhaustion, he said, was caused by sleep disturbed by the pain. He suggested stronger anti-inflammatory drugs. I told him I had talked to someone with chronic Lyme, and I wanted more antibiotics just in case the first round of Zithromax had not worked. I was skeptical that it had because I had found out by now that most doctors prescribe doxycycline or other antibiotics, not Zithromax. This doctor said he vehemently opposes self-research because too often patients self-diagnose inaccurately. He was skeptical that my symptoms were because of Lyme disease. Still, he agreed to prescribe four weeks of doxycycline. He did not believe it would work and told me so. Walking out, my husband and I were baffled. We had no clear idea what was wrong with me, or how I would get better. The lack of an objective truth was bitter medicine for journalists like ourselves trained to seek it out. I had also made an appointment with another rheumatoid arthritis doctor. It is easy when going through this, to go with the doctor who is nicest. I didn't want to do the opposite -- reject the advice of one doctor because his bedside manner left me wanting. Money was starting to become an issue. This would be doctor No. 3, and we feared the insurance company would start balking. We would pay for this doctor because were we to call the Lyme-friendly doctor, the tally would reach four. At $200, sometimes $300 a visit, we thought we could save money by screening doctors over the phone. None would come to the phone. As I took this second round of antibiotics, slowly a shift was happening. One night I was even able to sit in a movie theater for two hours. The antibiotics seemed to be working, but I was not cured, and I needed a backup plan in case of another relapse. I visited doctor No. 3 Nov. 6, and his diagnosis was the same as No. 2 -- a musculoskeletal syndrome -- although he was kinder, and less technical. Were he to treat me, he would stop antibiotics after this round. Studies show that a second round of antibiotics offer little more than a placebo, he said. Stopping antibiotics, he said, would not hurt my chances of complete recovery should I need them later. He thought he could get me back to work within a month. He touched my shoulder reassuringly at the end of the appointment. I liked the guy, and he seemed knowledgeable, but his suggestion for antidepressants to sleep and muscle relaxants for pain did not sit well with me. I was nagged by the possibility that the Lyme bacterium was still hurting me. It was time for doctor No. 4. 'Tell Me Your Story' It was a 70-mile ride to the next doctor, who wore no white coat and has an office filled with thank-you cards from patients. "Tell me your story," he said, as my husband and I sat with him a couple days before Thanksgiving. We recalled the medicinal highlights. One month of Zithromax, followed by one month of Relafen, and by then, nearing the end of one month of doxycycline. Lyme negative test, Lyme positive test, Lyme negative test again. He had heard many of these stories. He tells us his story. A Yale graduate, his dad had Lyme disease for seven years. He has been doing research in Lyme, and is convinced chronic Lyme disease exists and that he and his colleagues can prove it. Then he gives his diagnosis. Yes, he thinks I have Lyme. Yes, he is in direct disagreement with the other doctors who said that stopping antibiotics will not risk my chance of recovery. He also tells us something no doctor has mentioned: The tick also carries Bebesia, another bacterium, and the treatment for it differs. He orders a blood test for that and prescribes antibiotics that would kill that too. About 40 percent of patients recover without further antibiotics, he said. I am uncertain as he writes prescription forms to increase my doses. After all, this is not candy. I decide to take the antibiotics: a mix of the two types I have had before: Zithromax and doxycycline -- five pills a day. I have been feeling better with the last round, and I don't want to slip back. By then, more than four months since I got sick, I am feeling 80 percent normal, but the doxycycline has the side effects of causing bothersome yeast infections. My husband realized I was getting better when I resumed shouting my strong opinions at the television, and by Dec. 1, I return to the office. Still, by February's end, there have been just three days when I felt 100 percent. I have resumed my weekly basketball games, but on some days, I am limping by the end of the workday. I could easily nap on most afternoons, and now, as winter prepares to close, there are still days when I wake up achy and listless. On good days, I run in overdrive, impatient to regain my stamina and pack in all the activities and conversations I have missed. In Florida last month, I bicycle again and for one, joyful moment forget I was ever ill. Doctor No. 4 says the lingering aches are caused by the Lyme infection, and more antibiotics may be needed in addition to the four months' worth I took. For now, I have stopped the pills and am keeping my fingers crossed. The rheumatologists I saw would argue that the cause of the lingering symptoms is not the Lyme bacterium. Which doctor is right? I will never know. A few years, and plenty of research down the road, I hope others like me will know. Until then, we have plenty of questions to ask our doctors and ourselves. The Hartford Courant: Lyme Disease [Note: Link not available as of 3 Dec 1999.] http://www.courant.com/news/special/lyme/lyme1.stm ----- 2 - Debate Over A Disease - 2 Mar 99 Debate Over A Disease By DEBORAH PETERSEN SWIFT This story ran in the Courant March 2, 1999 Lyme disease is Connecticut's disease, and the state has become a boxing ring for debate over how to treat it. The disagreement? The length of time that antibiotic treatment is effective if the symptoms do not disappear after the first round of medication. While some doctors say that months of antibiotics may be needed to knock out the stubborn Lyme spirochete, which has a habit of hiding in parts of the body, other doctors say continuing antibiotic treatment especially after two months is little more effective than a placebo, and that prolonged ingestion of the drugs can cause other problems. The debate was highlighted last week, when two Connecticut physicians went head-to-head at a state legislative hearing on a bill that would require insurers to cover treatment for Lyme disease and follow-up care. The two were Dr. Robert T. Schoen, co-director of the Lyme Disease Clinic at Yale-New Haven Hospital who has consulted for insurers, and Dr. Steven E. Phillips, a Ridgefield physician and researcher. Schoen said research shows that late Lyme disease is over-diagnosed and over-treated, while Phillips testified that scientific evidence shows that the Lyme bacterium persists in some patients and that while long-term antibiotic treatment may not cure them, it's better than nothing. About the only thing the two camps agree on is this: An initial round of antibiotics will cure most cases of Lyme disease. Even then, doctors debate the length of dosage (ranging from two to six weeks) and the type of antibiotic that works best. The bigger problem comes for patients who do not get better after the initial so-called ``slam dunk'' of antibiotics. Just how many people is that? No one knows for sure, although the numbers have been estimated at up to one-third of Lyme disease patients. ``It is vague because we don't know all the answers yet,'' said David L. Weld, executive director of the American Lyme Disease Foundation Inc. in Somers, N.Y. Patients who do not recover quickly must decide for themselves which side of the debate they believe. That decision will determine their future treatment and the doctor they choose. At the crux of the debate is whether symptoms that last for several months or more are being caused by the Lyme bacterium, a question that remains unresolved because there is no foolproof test to determine that. Researchers are trying to come up such a test. Phillips, for example, published a paper in the medical journal Infection in December, saying he and his colleagues had developed a reliable technique to grow a culture of the Lyme bacterium - Borrelia burgdorferi - from patients with continuing symptoms of Lyme disease, and that of those 47 patients, 43 tested positive for the bacterium. Phillips believes that this is proof that the long-term symptoms are caused by chronic Lyme disease, not post-Lyme disease as some doctors call it. Whether the results can be replicated in further studies is the next question, said David T. Dennis, coordinator of the Centers for Disease Control and Prevention's Lyme Disease Program in Colorado. The CDC, he said, recently called Phillips with suggestions on how to proceed, Dennis said. Coming up with an undisputed test is important because current blood tests, which measure the antibodies the body produces to combat the Lyme bacterium, can remain positive after a patient has recovered, or come up negative when someone is still sick. ``They have antibodies, but that does not mean there is an active infection,'' said Dennis. Couple the uncertainty of diagnostic testing for long-term Lyme disease with a lack of conclusive controlled studies showing that antibiotics are effective after the first round, and many doctors hesitate to prescribe lengthy antibiotic treatment. Dr. Leonard H. Sigal, chief of the division of rheumatology at the Robert Wood Johnson Medical School in New Brunswick, N.J., and director of its Lyme Disease Center, said he's not sure that the success of long-term antibiotic treatment ``is supported by scientific evidence.'' Medical research suggests that in some cases the symptoms are being caused by another disease, and in a small percentage of patients, by permanent damage caused by the Lyme bacterium, Sigal said. Chronic fatigue syndrome or fibromyalgia, a musculoskeletal pain syndrome, may be causing the symptoms in some cases, not the Lyme bacterium. Neither disease has a known cure, and therefore neither will respond to antibiotic treatment, doctors say. Instead, doctors often prescribe anti-inflammatories or other medication to manage the pain. Also, it is possible, Sigal says in an article in the book ``Lyme Disease'' (American College of Physicians, Philadelphia) that the initial Lyme disease infection may make patients more susceptible to other diseases. Dr. Sam T. Donta, professor of medicine, infectious diseases and biomolecular medicine at Boston University School of Medicine and Boston Veterans Affairs Hospital, said doctors can not wait for research to produce absolute answers. ``What do you do in the meantime?'' he asks. ``We don't know the cure for cancer. Does that mean we don't do anything.'' In his treatment of more than 400 patients with a three- to six-month course of antibiotics, 80 percent improved, and 25 percent to 30 percent fully recovered, Donta said. The symptoms and their duration varied, but included fatigue, pain in the muscles and joints, numbness and tingling in the extremities, headaches, memory loss, confusion and mood changes. Some patients also have heart palpitations. To be cured, Donta believes, a patient must be free of all symptoms - no matter what the blood tests show. The National Institutes of Health are hoping to find answers to the treatment debate in a five-year study now under way. Patients who were diagnosed with Lyme disease and did not recover after initial antibiotic treatment are being given antibiotics intravenously for 30 days, then two months of oral antibiotics (doxycycline). This particular regime is controversial, however, and some doctors claim the study is designed to fail. The Hartford Courant: Lyme Disease [Note: Link not available as of 3 Dec 1999.] http://www.courant.com/news/special/lyme/lyme2.stm ----- 3 - Tolerable Aches, Persistent Pain - 2 Mar 99 Tolerable Aches, Persistent Pain By DEBORAH PETERSEN SWIFT This story ran in the Courant March 2, 1999 Mention Lyme disease at a party, business meeting or poolside, and someone will pipe up with a story. Everyone, it seems, knows someone - a neighbor, a co-worker, an aunt - who has had it. That is because there is no state in the country, perhaps the world, where a person is more likely to get Lyme disease. In 1998, Connecticut's incident rate was about 103.80 per 100,000 population - making the state by far the highest risk area in the nation. Below are three state residents with three different stories. One, like most Lyme disease patients, recovered fast and never looked back. Another was debilitated for several days and then had nagging, yet tolerable, aches for months. The third, a youngster, exemplifies the bigger blow the disease can pack - chronic, persistent pain. William McEachern of Willington, professor of economics, University of Connecticut, Storrs William McEachern played plenty of mind games with himself as Lyme disease toyed with him in the summer of 1997. When he discovered a rash on his right shin, he wrote it off as a bruise from having bumped the lawn furniture he had just moved. When he found himself using more strokes than usual while golfing in Florida, the 54-year-old blamed his age for his lousy drives. And, when he returned from Florida a week later, he diagnosed himself with the back-to-work blahs. ``I thought to myself, am I really just trying to dog it or what? '' he said. ``You know how when you come back and you have things piling up.'' After all, McEachern had been tested for Lyme disease a couple weeks earlier - before he saw the bruise - and the result was negative. But he was running out of explanations for his continued exhaustion. Finally, he made a deal with himself. He would check his shin again. If he could see the rash, he would call the doctor, again. Seeing the rash, the doctor put him on antibiotics, the type and dosage McEachern does not remember. ``My recovery was remarkable.'' Within a week, he was back up to jogging speed. He was among the lucky, the majority of Lyme disease sufferers, who recover completely after one course of antibiotics. ``I feel a little guilty that I recovered so well because I have heard so many stories from other people,'' he said. ``You can really get screwed up.'' Mary Anne Steadman of West Hartford, speech therapist in Windsor Locks schools Mary Anne Steadman first sensed something was wrong while working with elementary children at summer school in 1997. ``I noticed I couldn't sit on the floor with my legs crossed like I usually did,'' she said. A month earlier, she had scratched her head, and thought she felt a tick, but she never found it and promptly forgot about it. At the time, she was preoccupied with getting ready for vacation, rushing to do laundry and pack. ``For some reason, I wasn't worried about it. It was really stupid.'' But the hip pain prompted Steadman to visit a walk-in clinic, where a doctor ordered blood tests for Lyme and to rule out other diseases. It would take a week for the results to come in - a difficult week for Steadman. She called the clinic back two days later, complaining of a splitting headache and nausea. She thought she had the flu, but the doctor told her summer was not the flu season. She spent most of the next few days on the couch. ``I felt so awful,'' she said. Over-the-counter medication gave no relief. Four days passed before a doctor at the clinic called to check on her. Hearing she was still sick, the doctor was firm and direct: ``Do you have someone who can take you to the hospital? If not, I'm sending an ambulance.'' The doctor ordered a spinal tap to rule out meningitis. ``I was terrified,'' Steadman said. The emergency room visit turned into an eight-hour ordeal. Steadman was so fatigued she fell asleep in the waiting room and didn't hear her name called. The blood test results, when they finally arrived, were confounding. Three tests, three results: one negative for Lyme, one showing a past infection, one positive, barely. She had a telltale neurological symptom of Lyme disease - Bell's Palsy, one side of her face was drooping. That was enough. A doctor immediately arranged for Steadman to be hooked up to an IV to receive antibiotics. A visiting nurse instructed Steadman on how to give herself the doses at home. ``Sure enough. I felt better within 24 hours,'' Steadman said. After two weeks of IV treatment, she took oral antibiotics for two more. She was better. Almost. The hip pain persisted. She gained 20 to 30 pounds because she was too sore to bicycle or jog. She gave up her monthly Appalachian Mountain Club hikes. It was not until April 1998 - eight months after being diagnosed - that she fully recovered. After she took antibiotics for a sinus infection, stunningly, the hip pain disappeared. These days, Steadman has lost weight and is back to normal. But she has made some changes. Her two cats are now banned from sleeping on her bed, and she checks her two children regularly for ticks. ``I'm practically glad it's winter because I don't have to be so neurotic [about ticks] anymore.'' Andrew Ouimet, 11, of Farmington as told by his mother, Lisa Ouimet He never complained. Not even on the days that his migraine headaches were so unbearable he crawled from his bed to the bathroom. Not on the nights when the pain in his knees forced him to slide up the stairs backward. And not now, nearly four years later, when Andrew Ouimet still walks gingerly on some days, when hints of his past pain return. Lisa Ouimet first became concerned about her son in June 1995 when he raised his arm to put a beach towel over his head after swimming. There on the armpit of her then 8-year-old son, was a dark, dark maroon rash. ``It just took my breath away,'' she said. At first she thought he had a staph infection. That night he had a fever of 104. The doctor recommended something to bring down the fever. ``The thing bothering me was that his neck hurt so much,'' said Lisa. She feared her son had meningitis. ``Later that night, he came downstairs to get something to drink and he was limping. I said `Honey, what's wrong, you are limping.''' At that moment, all those poolside conversations about Lyme disease that Ouimet had had with other mothers paid off. ``That's when I knew it was Lyme disease. I had educated myself to know.'' Her son's pediatrician decided to treat Andrew as though he had Lyme disease before receiving the blood-test results. Andrew started taking the antibiotic amoxicillin. He had developed several more rashes, on his thighs, stomach and back. The rashes were gone a week later when he went to the University of Connecticut Health Center for a second opinion. ``He [the doctor] was sitting there shaking his head: `I don't even have to look at the blood tests, I know he has Lyme disease,''' she said. The pain soon got worse, and persisted. When his mother helped him put on his shoes, Andrew would scream because his Achilles tendons hurt so much. One snowy day, his father, Michael, had to carry him into the house because his son could not lift his legs to walk through the deep snow. The doctor told the parents that after 30 days of antibiotics, Andrew would be fine. ``Well, needless to say, he was two years on the amoxicillin and doxycycline,'' Lisa Ouimet said. ``The doctor even apologized.'' He was surprised her son was not getting better, she said. Some days were worse than others, she said comparing her son's experience to that of people with arthritis. Still, her son wanted to be the growing, athletic boy that he was. He played basketball and was a soccer goalie. His parents let him play, even if it meant sometimes pulling him from a game, his legs stiff with pain. ``He never once felt sorry for himself,'' Lisa Ouimet said. On some days, Advil took the edge off, and Andrew grew accustomed to his changed life. ``I think he just got to the point that he was so used to it,'' his mother said. ``That's the way he was going to live, and that was the end of it.'' Finally when he was in fourth grade - more than 19 months after his mother noticed the rash, a blood test came up negative for Lyme disease and the doctor stopped the antibiotics. Now in 6th grade at Irving A. Robbins Middle School, Andrew is still sore sometimes, and his mother has not ruled out having him re-evaluated. But now the aches are less intense and less frequent. The Hartford Courant: Lyme Disease [Note: Link not available as of 3 Dec 1999.] http://www.courant.com/news/special/lyme/lyme3.stm ----- 4 - Who Needs Lyme Vaccine? - 2 Mar 99 Who Needs Lyme Vaccine? By GARRET CONDON This story ran in the Courant March 2, 1999 Is the new Lyme disease vaccine for you? To help patients and doctors answer this question, advisers to the federal Centers for Disease Control and Prevention recently approved vaccine guidelines. The CDC is expected to adopt them shortly. The vaccine, called Lymerix, is approved only for those from age 15 to 70. It is given in three injections over the course of a year. The second injection is given a month after the first and the third comes a year after the first. The rate of protection is 50 percent after two shots and 78 percent after three. It's likely that booster shots will be needed, but the schedule for boosters has not been determined. Expect to pay from $60 to $90 for each of the three shots. Your insurer or HMO may pay for the vaccine. (Another Lyme vaccine, developed by Pasteur Merieux Connaught, is working its way through the federal approval process.) Lymerix, a product of SmithKline Beecham, does not provide 100 percent protection against Lyme disease and doesn't defend against other tick-borne diseases like babesiosis and ehrlichiosis. Therefore, those who get the vaccine must continue to take preventive measures to avoid being bitten by the black-legged tick (also called the deer tick). The CDC's Advisory Committee on Immunization Practices encourages those considering the vaccine to consider geography and lifestyle in assessing the risk of Lyme disease infection. Here are the guidelines: High risk - The advisory committee says the vaccine should be considered for high-risk people: those who live, work or play in areas of high or moderate risk during Lyme's prime transmission season (April through July) and engage in activities that result in frequent or prolonged exposure to a tick-infested habitat. Moderate risk - People at moderate risk may be considered for the Lyme vaccine. Like the high-risk group, these people live, work or play in high-risk areas, but their exposure to a tick habitat is neither frequent nor prolonged. Low or no risk -The vaccine is not recommended for those in this group. These are people who aren't in high-risk areas during the prime infection season, as well people who do live or work is such areas but have little or no exposure to a tick habitat. Though Connecticut had the highest rate of Lyme disease in the United States last year, the rates vary widely within the state. (Windham County is highest, with a rate of 367.72 cases per 100,000 population, and Hartford is the lowest, with a rate of 22.54.) Using the CDC guidelines, it's possible to conclude that an adult living in a high-risk region can skip the vaccine if he or she avoids the typical tick habitat: wooded, brushy or overgrown grassy areas. The Hartford Courant: Lyme Disease [Note: Link not available as of 3 Dec 1999.] http://www.courant.com/news/special/lyme/lyme4.stm ----- 5 - Prevention Focus Of Conference - 2 Mar 99 Prevention Focus Of Conference By DEBORAH PETERSEN SWIFT This story ran in the Courant March 2, 1999 If you're riding the ferry to Nantucket this summer, be on the lookout for jugglers, ``goody bags'' and Andrew the Arm. The actors, props and gifts are part of research to determine if educational skits and other novel techniques prevent Lyme disease by persuading people to check for ticks, wear protective clothing or repellent and avoid infested areas. That research and other ways to prevent and control Lyme disease and two other illnesses carried by deer ticks that are on the rise - babesiosis and ehrlichiosis - will be the focus of a national conference on Lyme disease in New York City next week. Prevention is crucial to reducing the number of cases of Lyme disease, a disorder that can affect the skin, nervous system, heart and joints, and is one of the fastest growing infectious diseases in the United States, said David L. Weld, executive director of the American Lyme Disease Foundation, Inc., the conference sponsor. Studies, he said, put the price tag of Lyme disease at $2.5 billion a year in medical care and absenteeism. The Nantucket project has involved 17,000 passengers on the ferry. ``While everyone's on vacation, we work very hard,'' said Dr. Nancy A. Shadick, who heads the federally funded study, now in its third year, with colleagues Charlotte B. Phillips and Matthew H. Liang. The project includes two elements ripe for research: an area overrun with deer ticks that carry not only the Lyme bacterium, but two other bacteria that can infect humans, and a captive audience of passengers on the ferries between Hyannis and Nantucket. The actors and researchers show passengers Andrew the Arm, a model of an arm covered with real ticks, preserved and encased so that people can see what they look like and how they feel. Passengers are given goody bags that include a shower card instructing people on how to check for ticks. It was developed by the Robert Breck Brigham Multi-Purpose Arthritis Center, a clinical research group funded by the National Institutes of Health. Researchers began the project two summers ago after a pilot study on Martha's Vineyard ferries showed that while people knew a lot about Lyme disease, they didn't take precautions. Preliminary results show that in the first two summers of the study, 61 percent of those who received information on Lyme disease on selected ferries reported doing tick checks, while only 40 percent of those on other boats who received unrelated material did the checks, Shadick said. The Hartford Courant: Lyme Disease [Note: Link not available as of 3 Dec 1999.] http://www.courant.com/news/special/lyme/lyme5.stm ----- 6 - After The Tick Bites - 2 Mar 99 After The Tick Bites By DEBORAH PETERSEN SWIFT This story ran in the Courant March 2, 1999 Navigating the medical maze when seeking a diagnosis and treatment for Lyme disease can be very frustrating and confusing. Here are some things to remember: 1. Request two blood tests -- the ELISA and the Western Blot. The second is more reliable than the first. Together they are fairly accurate, although not foolproof. If symptoms persist, do not hesitate to ask for a re-test. Tests often are negative within the first month after a tick has transmitted the Lyme disease bacteria. Do not rule out other possibilities, however. Ask the doctor to test for other illnesses, too. 2. Do not delay seeing a doctor, especially if you have a bull's-eye rash, (erythema migrans) a sure sign of Lyme disease. Demand a doctor's appointment, or go to a walk-in clinic. In cases of a rash, consider asking the doctor to prescribe antibiotics on the spot instead of waiting for blood-test results, which can take up to a week. The passage of time often makes Lyme disease more difficult to treat. 3. Ask the doctor about experience with treating Lyme disease and what research papers he or she has read. David Weld, executive director of the American Lyme Disease Foundation, says that while much research has been conducted on the illness, not all doctors see it. Consider requesting a referral to another doctor if your general practitioner has little familiarity with Lyme disease. 4. If antibiotics are prescribed, ask the doctor if the medication penetrates cells and what studies show about the medicine's effectiveness in treating Lyme disease. It is believed that Lyme disease bacteria enter cells, complicating treatment. Some antibiotics are ineffective in reaching cells. 5. Be skeptical of doctors who are adamant that they have all the answers about Lyme disease. Not all the answers are out there. 6. Ask the doctor to explain the diagnosis. How did the doctor determine whether you have Lyme disease? Remember, blood tests are open to interpretation. 7. If you do not recover after one round of antibiotics, ask the doctor to explain the next treatment options he or she recommends and why. A difficult choice will need to be made at this point, and science doesn't have all the answers. If you are dissatisfied, seek a second opinion. This will probably require a referral from your doctor to ensure insurance coverage. 8. Bring a friend or relative to the doctor with you, and plan what questions you want answered. The other person can take notes and ask questions you might forget. 9. Read, but read wisely and skeptically. Research should supplement, not replace, professional medical care. There are plenty of Web sites and a handful of books out there, but make sure their assertions are backed up by research. 10. If you continue to feel lousy, be persistent until you have an answer that satisifies you. Stay hopeful. The Hartford Courant: Lyme Disease [Note: Link not available as of 3 Dec 1999.] http://www.courant.com/news/special/lyme/lyme6.stm ----- 7 - Removing Ticks - 2 Mar 99 Removing Ticks By DEBORAH PETERSEN SWIFT This story ran in the Courant March 2, 1999 Deer ticks are extremely tiny, and most of them cause problems for humans during the nymph stage, when they are about the size of a poppy seed. It takes 24 to 36 hours for a tick to start transmitting the Lyme disease bacteria. About 25 percent of the nymphal ticks carry the bacteria, state studies show. The season can begin as soon as late winter, when temperatures rise into the 40s, and lasts until a couple days of below freezing temperatures. If you see a tick on your body, remove it with blunt tweezers, grasping the tick's mouth parts at the site of their contact with the skin. Pull the tick straight back. Do not squish it. Save it in a vial to be analyzed if you get symptoms, or dispose of it in a vial or sealed plastic bag. Do not flush it down the toilet. Watch for symptoms. The Hartford Courant: Lyme Disease [Note: Link not available as of 3 Dec 1999.] http://www.courant.com/news/special/lyme/lyme7.stm ----- 8 - Bites By Town 2 March 1999 SPECIAL REPORT: Lyme disease Bites By Town The entire state is endemic to Lyme disease, but there are pockets with higher risk than others, as shown in the following town-by-town and county-by-county listings. The first column is the number of reported cases, the second, the relative risk of getting Lyme disease -- the number of cases per 100,000 population. In Salisbury, for example, there were 54 cases, but since that represents 1,320 cases per 100,000 residents, in Salisbury, that translates to more than 1 case per 100 residents. While high, the following numbers are estimated to be just 15 percent of the actual number of cases, said Starr H. Ertel, an epidemiologist and the Lyme disease survellience coordinator for the state Department of Public Health. TOWN CASES Per 1000 Andover 17 669.29 Ansonia 2 10.87 Ashford 26 690.57 Avon 2 14.35 Barkhamsted 0 0 Beacon Falls 4 78.69 Berlin 4 23.83 Bethany 16 347.22 Bethel 28 159.63 Bethlehem 10 325.63 Bloomfield 10 51.33 Bolton 12 262.3 Bozrah 10 435.35 Branford 20 72.46 Bridgeport 13 9.18 Bridgewater 4 241.84 Bristol 7 11.54 Brookfield 46 325.94 Brooklyn 23 344.26 Burlington 5 71.16 Canaan 14 1324.5 Canterbury 15 335.8 Canton 5 60.47 Chaplin 13 634.77 Cheshire 13 50.62 Chester 15 438.98 Clinton 30 234.98 Colchester 39 355.19 Colebrook 0 0 Columbia 26 576.5 Cornwall 13 919.38 Coventry 46 457.12 Danbury 44 67.09 Deep River 18 415.51 Durham 18 314.03 East Haddam 29 434.39 East Hartford10 19.82 East Lyme 29 189.05 Eastford 7 532.72 Ellington 5 44.65 Essex 26 440.38 Farmington 11 53.38 Glastonbury 17 60.93 Granby 0 0 Griswold 20 192.6 Guilford 50 251.91 Hamden 17 32.42 Hartford 4 2.86 Harwinton 2 38.26 Kent 22 753.94 Killingworth 22 457 Ledyard 37 248.11 Litchfield 11 131.5 Madison 59 381.01 Mansfield 90 426.48 Meriden 6 10.09 Middlefield 6 152.87 Milford 25 50.06 Montville 42 251.9 Naugatuck 6 19.59 New Canaan 27 151.14 New Hartford 3 52 New London 7 24.53 Newington 5 17.12 Norfolk 1 48.54 North Canaan 0 0 North Stonington 11 225.23 Norwich 61 163.14 Old Saybrook 14 146.57 Oxford 18 207.25 Plainville 1 5.75 Pomfret 30 967.12 Preston 13 259.69 Putnam 24 265.75 Ridgefield 70 334.62 Rocky Hill 5 30.2 Roxbury 16 876.71 Salem 13 392.75 Salisbury 54 1320.29 Scotland 7 576.13 Seymour 13 90.99 Sharon 32 1092.9 Shelton 24 67.76 Sherman 21 747.6 Simsbury 8 36.33 Somers 5 54.9 South Windsor10 45.27 Southbury 15 94.83 Southington 3 7.79 Sprague 13 432.18 Stafford 10 90.16 Stamford 60 55.53 Sterling 11 466.69 Stonington 56 330.99 Stratford 12 24.3 Suffield 1 8.75 Thomaston 1 14.39 Thompson 8 92.29 Tolland 21 190.89 Torrington 2 5.94 Trumbull 23 71.84 Union 0 0 Vernon 24 80.43 Voluntown 16 757.22 Wallingford 12 29.4 Warren 6 489.4 Washington 33 845.07 Waterbury 9 8.26 Waterford 60 334.63 Watertown 7 34.22 West Hartford14 23.29 West Haven 8 14.81 Westbrook 12 221.65 Weston 44 508.79 Westport 55 225.32 Wethersfield 3 11.7 Willington 20 334.5 Wilton 60 375.26 Winsted 0 0 Windham 75 340.31 Windsor 4 14.38 Windsor Locks 3 24.28 Wolcott 1 7.3 Woodbridge 7 88.34 Woodbury 10 122.99 Woodstock 14 233.02 Unknown 118 Total 3412 103.8 The Hartford Courant: Lyme Disease [Note: Link not available as of 3 Dec 1999.] http://www.courant.com/news/special/lyme/lyme8.stm ----- 9 - Bites By County Bites By County The entire state is endemic to Lyme disease, but there are pockets with higher risk than others, as shown in the following town-by-town and county-by-county listings. The first column is the number of reported cases, the second, the relative risk of getting Lyme disease -- the number of cases per 100,000 population. In Salisbury, for example, there were 54 cases, but since that represents 1,320 cases per 100,000 residents, in Salisbury, that translates to more than 1 case per 100 residents. While high, the following numbers are estimated to be just 15 percent of the actual number of cases, said Starr H. Ertel, an epidemiologist and the Lyme disease survellience coordinator for the state Department of Public Health. COUNTY CASES RATE Fairfield 796 96.18 Hartford 192 22.54 Litchfield 335 192.43 Middlesex 313 218.58 New Haven 382 47.5 New London 605 237.29 Tolland 294 228.44 Windham 377 367.72 Unknown 118 Total 3412 103.8 The Hartford Courant: Lyme Disease [Note: Link not available as of 3 Dec 1999.] http://www.courant.com/news/special/lyme/lyme9.stm -----