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My name is Karen J. Rose. My friends call me "Rose." This is my first attempt at telling my Lyme disease Horror Story on the world-wide-web. This page came into being on February 1, 2000, and is definitely not finished. Please visit again to see all the changes.
I am a technical writer (20 years of experience) who became totally disabled under Social Security guidelines because of Lyme disease in 1995. I have spent the last 5+ years researching every aspect of this disease. I have had to become an aggressive activist, advocate, and researcher in promoting education about Lyme disease and fighting the discrimination and prejudice (documented by court cases) associated with this diagnosis.
To gain access to the medical treatments necessary to adequately fight the ravages of this disease, I have had to provide information to insurance companies and disability companies. Insurance companies, including my own, routinely disallow recommended treatment protocols, thereby ensuring continued illness and inevitable work-related disabilities. There is a wealth of information concerning these topics on the Internet at http://www.lyme.org.
I have also had an article published in the Fort Worth Star-Telegram decrying the persecution of doctors who dare diagnose and treat Lyme disease. (The newspaper titled my article "Journalistic Malpractice." ) I intend to publish additional articles focusing on the discrimination perpetrated by insurance companies for not providing adequate care for this disease and to promote insurance reform. The persecution is escalating rapidly. (More on this later.)
My case was extreme and was diagnosed in a very late stage, with significant and permanent damage being incurred before diagnosis and treatment. The earlier this disease is diagnosed and treated, the better the prognosis is for halting the disease progress and lessening the frequency of these cyclic symptoms. My Lyme disease odyssey actually began abruptly in the summer of 1958 during my first summer camping experience at a Camp Fire Girls camp in the southern California mountains. My health has steadily decreased since that time.
Lyme disease is a multisystemic illness, meaning that it can affect every body organ. (The brain is an organ.) It is a cyclic disease, meaning that the manifestations of the disease vary from day to day. In late-stage, chronic disease, Lyme disease also involves neurological and neuropsychiatric manifestations. This happens when the Borrelia burgdorferi bacterium (the spirochette that causes Lyme disease) invades the central nervous system, the spinal fluid, and penetrates the blood-brain barrier.
The earliest manifestations of this disease are usually physical, with severe joint pain, severe fatigue, memory problems, etc. Later, if early treatment is not administered, the disease becomes psychiatric in nature (e.g., depression, mood swings, cognitive impairment, irritability, obsessive compulsive disorder, seizure disorder, and bipolar disorder). Lyme disease can only be cured in the first stage, immediately after a known tick bite. If left untreated for months or years, the disease becomes incurable and harder to treat. If left untreated, the debilitation becomes permanent and further damage will be incurred.
These manifestations usually improve with appropriate antibiotic therapy; however, this treatment can often aggravate the manifestations of these same symptoms. That is why careful medication management, monitoring, and adjustment by a Lyme-literate physician (usually a neurologist, infectious disease specialist, or internist specializing in Lyme) is necessary to determine the current condition and make the appropriate modifications in treatment. In some cases, psychotropic medications must be introduced in addition to antibiotics and the services of a psychiatrist well-versed in Lyme must be introduced.
The physical manifestations of this disease include chronic fatigue, somnambulism (excessive afternoon sleepiness), and chronic pain throughout the whole body, especially joints, muscles, nerves, skin, back, and head. This chronic pain condition is called Fibromyalgia, and is very much like rheumatoid arthritis. This excruciating pain is constant, causing continual physical distress and interrupting normal sleep patterns, which further aggravates the pain and the cognitive impairment. Pain management is a complicated process because narcotic pain medications cause further cognitive impairment, intolerable drowsiness, and are quickly addictive. Narcotic pain relievers are not an option for those who are still actively employed.
Stress exacerbates pain, elevates blood pressure (which can cause immediate stroke or heart attack), suppresses immune system functioning, and increases manifestations of psychiatric symptoms. Avoidance of unnecessary stressors is crucial in combating this disease.
Chiropractic, Applied Kinesiology, and accupressure are very effective in treating this type of chronic pain, but insurance coverage, again including my own, is severely inadequate and does not cover the necessary pain management recommendations. Accupuncture and nerve block therapies are also effective, but are not normally covered by insurance. Chronic pain also contributes to high-blood pressure and decreases a person's ability to handle normal daily stressors.
Effective treatment of Lyme disease is a complicated and often confusing process, especially to the person afflicted.
I would urge you to review the following information carefully to understand how this disease manifests itself:
"Lyme Disease: A Neuropsychiatric Illness" . This publication addresses the specific neuropsychiatric manifestations of Lyme disease in a most concise manner. It should explain the process and dispel any misconceptions or fears about the nature of the disease. This article is being used by neurologists to alert psychiatrists of the possibility of Lyme disease being the cause for certain psychiatric conditions.
"Distinct Pattern of Cognitive Impairment Noted in Study of Lyme Patients". This article discusses why this type of brain impairment occurs.
" Neurophysiologic Mechanisms for Encephalopathy" . This article discusses the specific manifestations of impairment, especially in work-related situations. These articles were published in the January-March 1998 issue of The Lyme Times .
"Accommodating Mental Illnesses in the Workplace" . This article was published to provide employers information to help them avoid expensive EEOC charges filed under the Americans With Disabilities Act and to offer help for employers in understanding mental illness and complying with the law. It addresses the definition of mental illness, discusses signs and symptoms, describes the effects in the workplace, and offers guidelines for accommodating individuals with this type of disability. This article appeared in the April 7, 1994 edition of Fair Employment Practices .
Lyme's Disease Symptom Checklist . This is one of the many tools used by doctors to initially diagnose the possibility of Lyme disease. Lyme disease patients will mark nearly all of the symptoms appearing on the list.
Copyright © 1998-2001
Karen J. Rose - All Rights Reserved
Lives Torn Apart by Lyme
Dear Lyme Friends,
Lyme takes its toll in many ways. Never know it, do we, upon diagnosis. Just glad to have a name for what ails us, and to have “treatment.” Boy, what a shock – and the beginning of a new, very weird existence.
An existence that encompasses your loss of health, loss of ability to work (in many cases), inability to get compensation for medical treatment from your insurance company (which you pay high dollars for), loss of family support, alienation of friends (because you’re no longer “who” you once were).
Then, to top it off, you realize that you have entered a whole new political arena that you never knew existed and you never wanted in the first place. Your own doctors are under attack from the medical community and the corrupt insurance companies. You have become a financial liability for them. Sick as you are, you have been “drafted” into this fight to protect your own access to life and health and appropriate treatment to retain some quality of life.
That’s what’s happened to us all. We didn’t ask for this. We didn’t want it. BUT…we HAVE to fight as much as we are able to or face losing everything in the process. With no one willing (or able) to treat us, where will we be? Our families have deserted us. Our friends have given up on us. No one wants to listen to our tales of woe or witness our daily decline. It’s too painful, so they ignore us. They want us to go away. Guess what? We won’t go away! We can’t go away!
We are a threat to the insurance companies because we don’t die as fast as AIDS patients from this disease. We just get sicker. We are a greater burden to society – to insurance companies and disability companies. Our families don’t want to deal with us. They think it’s all in our heads – we’re over-exaggerating. If we had “real” illnesses, like cancer, maybe they’d be sympathetic for a time. But, with cancer, you’re either cured or you die. Not so with Lyme.
It’s not just patients who endure this humiliation. So does any doctor that’s compassionate enough or strong enough to answer the call of treating Lyme patients. They could get rich, become highly respected, if they specialized in treating other diseases. But, they are dedicated. They suffer more than we can possibly imagine – professionally, economically, and emotionally. I salute each one of these brave, committed doctors -- doctors who take their calling seriously. They are not in it for the money, or the notoriety. They are in it for the benefit of a suffering group of people – a group that grows larger each day. A group of people that will grow even larger if we cannot find a prevention, a cure, and have assurance of appropriate treatment by these wonderful Lyme specialists who have suffered the devastating effects of Lyme Disease almost as much as we have.