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Dealing with Chronic Lyme Disease: The Great Mimic (Chronic Fatigue Syndrome News)

  [ 257 votes ]   [ 2 Comments ] • March 10, 2004

By Nick Schneider, Staff Writer (The Linton Daily Citizen) "I'm in a jail without bars." That's how rural Owensburg, Indiana resident Daniel Jackson describes the medical condition he's been plagued with for the last 20 years. The condition has changed his life dramatically. Chronic pain has become a way of life. The 61-year-old man formerly ran a successful sawmill business, fished, hunted and enjoyed his leisure time in the woods. Today, he walks with a cane and night and day he's in pain most of the time. He's spent thousands of dollars on diagnostic testing and treatment, which for the most part, has offered little relief. His once-busy sawmill truck now sits not far from his farmhouse in a thicket of weeds. As Jackson looks out his window, he remembers being able to provide for his family -- his wife Shirley, a daughter and two sons. He said it hurts. "They've all stood by me through it all," he said with his voice growing low. "I've been awful lucky to have them." Now, it's simply too dangerous to allow him to use the power tools required to carry out his sawmill trade. Jackson is also growing more than frustrated each day with his medical condition and is still looking for a diagnosis that definitively says he has what he believes to be Lyme Disease. No physician has told him straight out that he has Lyme Disease. However, several years back he did test positive as a "chronic sufferer of Lyme Disease." He wonders, what's the difference? According to information supplied by the Centers for Disease Control and Prevention (CDC), Lyme Disease (LD) is an infection caused by Borrelia burgdorferi, a type of bacterium called a spirochete that is carried by small deer ticks. It is not thought to be transmitted by the common dog tick. Although LD is now the most common arthropod-borne illness in the United States with more than 150,000 cases reported to the CDC since 1982, it's diagnosis and treatment can be challenging for clinicians due to its diverse manifestations and the unreliability of currently available serological (blood) tests. In Jackson's case, he said he had endured a torture of roaming pains for more than two decades. At times, his speech is slurred; he experiences heart irregularity, night sweats, soreness in his ribs and back, painful joints, headaches, stiff, aching neck, facial palsy, tingling and numbness in his extremities, severe fatigue, diarrhea, constipation, disorientation; confusion; dizziness; short-term memory loss; inability to concentrate, finish sentences or follow conversations. Most nights he sleeps only three to four hours because of the pain. "The pain is here, there and yonder, all over my body. It comes and goes," Jackson says. Lyme Disease has become known as the "great mimic" and is often mistaken for other diseases such as multiple sclerosis, chronic fatigue syndrome, fibromyalgia, heart disease, psychiatric disorders, ALS (Lou Gehrig's disease), migraine syndrome, Alzheimer's disease, and autoimmunne disorders. "People tell me 'you have too many symptoms; you can't have that many symptoms; no one can have that much wrong with them'," Jackson said. "But there is no doubt in my mind. I have been living it for 20 years." According to Jackson, the symptoms change, sometimes daily. "Now, I'm sore from my hips through my shoulders into my head. It keeps moving," he says. "(The symptoms) go away and get milder and then it seems like they come back more severe." The early stage of Lyme Disease is usually marked by symptoms and signs -- chills and fever, headache, fatigue, stiff neck, muscle and/or joint pain, and swollen lymph nodes. If left untreated, complications from late Lyme disease, such as arthritis, meningitis, facial palsy or heart abnormalities, may occur within a few weeks to months. These later symptoms may develop in people who did not have early symptoms or did not recognize them. Swelling and pain in the large joints may recur over many years. Experts say the small ticks will attach anywhere on the body, but prefer body creases such as the armpit, groin, back of the knee, and nape of the neck; rashes will therefore often appear in (but are not restricted to) these areas. Around the time the rash appears, other symptoms such as joint pains, chills, fever, and fatigue are common, but they may not seem serious enough to require medical attention. These symptoms may be brief, only to recur as a broader spectrum of symptoms as the disease progresses, according to information supplied by the Centers for Disease Control and Prevention (CDC). Ticks will also become infected if they feed on animals that are infected. The disease can be spread when a tick infected with the bacteria bites a person and stays attached for a period of time. In most cases, the tick must be attached for 48 hours or more before the bacteria can be transmitted. An infected tick can transmit the spirochete to the humans and animals it bites. Untreated, it manifests itself as a multisystem inflammatory disease that affects the skin in its early, localized stage, and spreads to the joints, nervous system and, to a lesser extent, other organ systems in its later, disseminated stages. If diagnosed and treated early with antibiotics, LD is almost always readily cured, according CDC experts. The only distinctive hallmark unique to Lyme disease is the rash. Although a tick bite is an important clue for diagnosis, many patients cannot recall having been bitten recently by a tick. This is not surprising because the tick, usually the size of a pinhead is tiny, and its bite is usually painless. It is the combination of blood tests, evaluation of signs and symptoms that may establishes the diagnosis. Jackson said he remembers suffering a tick bite under his right arm sometime near 1985. He didn't think much about it then. The bite area did get a red rash and some soreness, but gradually other symptoms developed. He didn't know for sure what he had until about 12 years later when he was looking through a medical book and saw a photograph of the bite area of a person who had contracted Lyme Disease. It was a perfect match. "Once I saw the picture in the book years later, I knew what it was," he said. Officials with the Centers for Disease Control say generally, Lyme Disease in its later stages can also be treated, but because the rate of disease progression and individual response to treatment varies from one patient to the next, some patients may have symptoms that linger for months or even years following treatment. In rare instances, LD causes permanent damage. Jackson said he's improved in the last few months after starting to take a variety of vitamins on a daily basis. He's not well, but said some of the symptoms have subsided and he's able to do light chores and travel short distances without too much discomfort. The Greene County man says the psychological torment of the disease might be worse than the pain itself. The doubts, the "strange" looks and the reactions from people are tough to handle. "After a while you get real touchy and sometimes you make your friends mad because they don't understand what is going on," he said. "The worst of it is the way people treat you, even the doctors, acting like you are some kind of hypochondriac or crazy." Source: Copyright 2001. Linton Daily Citizen (Indiana). All rights reserved. Online at

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Article Comments Post a Comment

So, is "official" diagnosis really possible?
Posted by: jave
Sep 18, 2007
I can empathize with the afflicted's situation(s), as being second guessed by friends, professionals, and even family has accumulated at times to personal moments of devastation for myself. It's difficult to comment without getting personal and adding in my own whole story-in-a-nutshell. I must say though, applause to the afflicted characterc of this article, after 20 years of struggle and he's still hell-bent on attaining an official diagnosis! Your determination for the answer(s) is inspiring. For me, there once was a time where I gave up on all that,....tough to say which is worse, givin' up or never knowing.
Reply Reply

LYME - the devastation
Posted by: Mtncedar
Dec 2, 2008
I read this article and all that this man describes is exactly how it is. Lyme. Not in a million years did I ever imagine I would be attacked, and conquered, by Lyme - a disease from a tick. It's real. It's life-stealing. I don't even want to go outside anymore. It is just not worth the pain.
Reply Reply
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