December 2000 - Volume 1 Issue 8
Monthly Issue
Editors: PSpatches, Lymechat, Borrelia s
Graphics: Kneely813
Assistants: LutzDM,CCcooks,ROWDEEGPSY
Welcome to Lyme Matters!
Long-Term Outcomes in Treated Lyme Disease
There is little data regarding the long-term outcomes of patients treated for Lyme disease. Reports of persons carrying the diagnosis have included Lyme disease patients with:
1. Recurrent, nonspecific symptoms of fatigue
2. Arthralgia
Despite formal recommendations that prolonged or repeated parenteral courses of antimicrobial therapy are contraindicated in this setting, occasional patients continue to receive such therapy.
A community-based, longitudinal cohort study was conducted in conjunction with the Connecticut State Department of Public Health (Seltzer et al, 2000).
A random sample of patients reported as having Lyme disease over 7 years was selected (n = 1325). Each patient enrolled in the study was matched with a control individual matched by age and area of residence:
1. Patients with a single erythema chronicum migrans (ECM) lesion at least 5 cm in diameter were classified as having localized disease.
3. Patients with early neurologic disease (cranial neuropathy, aseptic meningitis)
4. Cardiac disease
5. Serologic evidence of infection was classified as having early-disseminated Lyme disease.
Patients with arthritis, encephalopathy, or polyneuropathy were classified as having late-stage Lyme disease. Serologic evidence of Lyme disease was required for inclusion.
Of the 678 enrolled patients with presumptive Lyme disease:
1. 71 percent believed they were cured,
2. 9 percent believed they were not cured,
3. 20 percent were uncertain.
The proportion of patients receiving antimicrobial treatment was similar among patient groups who did and did not believe they had been cured of Lyme disease.
There were 212 age-matched controls enrolled. The overall proportions of patients and controls who reported increased symptoms or increased difficulties with activities of daily living were similar in the patient and control groups, except for more individuals in the Lyme group who reported joint or muscle pain or difficulty ability formulating ideas.
There were no significant differences between cases and controls on the results of the SF-36 questionnaire.
The proportion of patients reporting an increase in symptoms, and difficulties with activities of daily living was tabulated over years.
Most patients attributed any increase in symptoms to aging or other illness. Twenty percent attributed increased symptoms to Lyme disease.
Patients who attributed symptoms to Lyme disease believed that they were not cured by treatment.
The highest proportion of patients reporting increased symptoms was the group that did not meet study surveillance criteria. These patients tended to believe that they were not cured of Lyme disease.
There is considerable controversy regarding the long-term consequences of Lyme disease. Most patients do not attribute chronic symptoms to persistent Lyme disease.
The overall frequency of those nonspecific complaints among patients was similar to controls matched by age and area of residence.
Scores on standardized tests of health-related quality of life were similar in patients and controls. Among patients reported to have had Lyme disease who did not meet surveillance case criteria, three-fourths had nonspecific symptoms only.
Although patients with documented Lyme disease reported increased joint or muscle pain or difficulty formulating ideas with higher frequency, the relatively small difference between patients and controls disappeared if the p values were corrected for the number of statistical comparisons performed.
Possible limitations of this study:
(1) Serologic testing was not performed in controls (although seropositivity is low in the general population, and the significance of asymptomatic infection is unknown);
(2) Many patients could not be contacted due to insufficient contact information, but this was not likely to introduce a systematic bias into the study;
(3) Patient reports were used as follow-up rather than physical examinations; however, medical records were reviewed and outcome questionnaires completed to establish outcomes. The authors conclude that patients who have had Lyme disease exhibit generally excellent long-term functional outcomes.
John W. Engstrom, MD, Associate Professor of Clinical Neurology, University of California San Francisco, San Francisco; and Stephen L. Hauser, MD, Chairman and Betty Anker Fife Professor, Department of Neurology, University of California San Francisco, San Francisco
References
Seltzer EG et al: Long-Term Outcomes of Persons with Lyme Disease. JAMA, 283:609, 2000 [PMID 10665700]
I guess that is why the Lyme rash is called the bull's eye,
shaped like a target.
Hello everyone, I'm back! A special "Thank you" to all who wrote during my illness. Your prayers, and words of encouragement were a great comfort to me. Being the object of illness is no fun! Having someone there with you during your illness can make a very positive difference. A BIG THANKS!!
I have always attempted to look at the bright side of every matter, no matter how terrible it may be, or seem to be. This can be difficult, especially when you are ill. One thing I reflected upon during my hospital stay and returning home was the following!
It has been said that "the road to hell is paved with good intentions." In my case, I was burning both ends of the candle and it finally caught up with me. That is, often, "we" tend to accomplish too much, spread ourselves too thin and as a result, hurt ourselves, physically, emotionally and mentally. We get ourselves "run-down"... and with a chronic illness, this is bad medicine.
We may need to "make changes" in order to be more productive presently and in future tense. The past eighteen months has landed me in the hospital on two occasions and to the doctors office no less than six times with "other" assorted illness.
In one word this means: Decay! It is an infection, contamination by an organism that enters the blood stream, and thus contaminates the entire body. The range of dysfunction that occurs with an infection is broad to say the least. The development of an infection depends upon exposure to that organism, and the degree of susceptibility, which is determined by the "effectiveness of the immune system." However, numerous factors influence the interaction between the microorganism (germ, agent) and the host and determine whether infection will occur.
Some of these factors involve the characteristics of the pathogen itself, whereas others involve the number of organisms (dose), the mechanisms of their entry and spread through the body, and the "resistance produced by the immune system." As I look back to the onset of my "sepsis" I learned some interesting things. I had had my teeth cleaned a few days earlier?
I was run-down. I had never had a problem after getting my teeth cleaned in the past. The "dose," there are many bacteria in the mouth, gums, oral cavity, and with a cleaning there are ruptured membranes that would allow possible infection to enter the blood stream. My immune system was also run down, the organism I contracted is often found in the mouth, the gut, and urinary tract amongst other places.
My point here: It may not be a bad idea to confer with ones MD and Dentist prior to any dental work, especially when dealing with a chronic illness such as Lyme Borreliosis! I also was on a medication that caused G.I. upset for high cholesterol. This irritated my stomach and bowel, thus another possible entry for infection, sepsis?
Infection refers to those diseases that produce dysfunction because of the presence of a living organism in or on the human body. The various microorganisms that cause infectious disease generally fall into seven categories. Within each group of organisms are those that always produce disease, those that live in the body for mutual benefit, and those that would cause disease if they were not controlled by the immune system.
Bacteria are unicellular organisms with a double cell membrane that protects them against many of the bodies defense mechanisms. Although they do not have a nucleus as human cells do, bacteria contain all the mechanisms required for maintaining life and for rapidly replicating themselves. They are called aerobic if they require oxygen and anaerobic if they survive only in an oxygen free environment.
Bacteria damage tissue by directly interfering with essential cell function or by the release of toxins that cause cell damage. In order for people to develop infection, they must come in contact with an infecting pathogen. Some pathogens are endogenous, that is, part of the patients normal flora. Now....when these normally harmless organisms escape the immune systems control or are transferred to another site because of lets say, surgery or other invasive procedures, they are capable of producing infection.
Those with PICCS, hep-locks, mid lines, central lines and even ports need to use aseptic technique "ALWAYS"! When showering or bathing, keep that dressing dry and if it gets wet, have it changed immediately!
Escherichia coli bacteria, are a major source of infection elsewhere in the body. Hand washing prior to infusions, dressing changes, flushes are imperative. While on the subject of washing, its a good idea to wash thoroughly, any and all fruit, vegetables, etc., from the market place prior to eating them, think about it!
Exogenous organisms are those that come from the environment, contaminated food, water, soil, air and animals. Hand washing is important! Gastroenteritis (AKA travelers diarrhea) are examples of infections obtained from contaminated food or water.
Dose! The number of organisms required to produce a disease varies widely. The larger the dose, the greater the risk of infection. Simply touching the end of a flush syringe and then flushing a line can introduce millions of bacteria directly into the blood stream resulting in serious infection. If in doubt, throw it out and use a new one.
For an invading pathogen to produce an infectious disease within the body, it must be able to overcome or bypass the general protective mechanisms that are part of the immune system. A peripheral and or central line provides a convenient entry site. Once inside the body, the organisms begin to produce rapidly. Because of the varying pathophysiologic processes of each pathogen and the fluctuating strength of peoples immunologic defense mechanisms, an infectious disease may take a variety of courses.
Once the organism has entered the body (incubation stage) symptoms usually appear. It can be a matter of minutes, to hours, to days, to weeks etc. Fever! head ache, muscle aches, chills, loss of appetite, and general loss of energy. These symptoms are clinical manifestations of the immune system's battle to control the organism. For ex. The fever is the result of interleukin-1 release by what are called macrophages, which changes the temperature , "set point" in the hypothalamus gland.
For the patient with a decreased appetite and decreased activity tolerance, small, frequent feedings may be better tolerated. Sleep and rest are mandatory! Hydration: The body needs fluid. Stay away from fluids containing caffeine as this is a diuretic and will cause the loss of fluid necessary to keep the body balanced.
Alcohol, will decrease the immune systems ability to fight disease, it will also act as a diuretic, and the loss of necessary fluids and may indeed nullify, certain antibiotic therapies, and may also interfere with other prescribed medications. In a nut shell, alcohol is your enemy! Always check with your Physician, Pharmacist about drug interactions, side affects, and O.T.C. drugs, that is Over The Counter medications.
Burning the candle at both ends will in the end catch up with you! As a result, you are setting yourself up for possible "serious" consequences! In closing, I wish all of you better health. Communicate with your Pharmacist/Physician and if there is a topic you would like to see addressed, please contact me directly @ borrelias@aol.com.
My best to all of you...Stephen
The information provided in this newsletter, accompanying articles, and links to other related Web sites is provided as a courtesy to our readers, and all material is intended for information, communication, and education purposes only, and is in no manner an endorsement, recommendation or approval of anyone, any product, or treatments in issues of "Lyme Matters." The information presented is not to be considered complete, nor does it contain all medical information that may be relevant, and therefore, is not intended as a substitute for seeking medical treatment and appropriate care. Please consult your doctor or medical advisor before making any treatment changes.
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