Journal of Infusion Nursing Volume 39, Number 6, Nov/Dec 2016
Elizabeth L. Maloney, MD
The Centers for Disease Control and Prevention estimates that more than 300, 000 new cases of Lyme disease occur each year in the United States and that 10% to 20% of these patients will remain symptomatic despite receiving appropriate antibiotictherapy. Many elements of the disease are poorly understood and have generated considerable controversy. This paper discusses the medical controversies related to posttreatment manifestations and their potential impact on infusion nurses.
An executive summary of the article
In an article to infusion nurses, Dr. Maloney points out that less than 20% of all EM rashes have the “classic” bullseye pattern. Infection often involves several tissue types or systems and there is a wide variety of nonspecific disease manifestations. Dissemination can happen quickly but signs may not appear for weeks, months, or even years, and it is not unusual for patients to initially present with Late-stage disease.
In other words, it is quite illogical to think you can quickly pin this thing down & tie a pink ribbon on it.
The article goes on to delineate the existing controversies in Chronic Lyme Disease.
Controversy #1 – Lack of universally understood terminology
Maloney states that initially the word “Chronic” was neutrally used to simply mean that the disease could be long-standing, but that this term over time was denoted by the Infectious Diseases Society of America (IDSA) to a negative connotation when they dismissed the very idea of chronic infection with Lyme Disease and came up with the term Post-Lyme disease syndrome (PLDS), also endorsed by the CDC. Maloney states that their assumption of PLDS lacks proof as there are no tests of cure for Lyme or biomarkers that can identify PLDS.
Controversy #2 – Validity of persistent manifestations being attributable to LD
The bulk of evidence supports the idea that persistent symptoms are related to an active infection or Lyme-induced immune dysregulation, yet again the IDSA and CDC discount this. Maloney sites study after study, particularly recent evidence clearly showing distinct differences in cerebral spinal fluid proteins of patients with chronic LD and those with chronic fatigue, and a longitudinal study of positive EM patients which found that only 1% developed fibromyalgia, which is lower than the general population.
Controversy #3 Significance of LD Persistence
Maloney states the evidence is clear: the physical, social, and economic costs of chronic LD is substantial and is a burden for the whole country. LD patients in study after study had significant physical impairments that interfered with functioning including abnormal sensory ability and motor deficits with pain levels matching post surgical patients, fatigue similar to MS patients, and physical functioning similar to patients with congestive heart failure. In one study, 39% spent at least $5,000 out of pocket for treatment and had to stop working, while another 28% reduced their hours at work.
Controversy #4 Testing in Chronic Lyme
Evidence shows that there are no tests to determine if a patient has an ongoing infection, yet some doctors use serology to decide if a person has chronic Lyme. Current testing DOES NOT identify the bacterium, but rather looks for antibodies to the bacterium. Elevated levels indicate exposure; however, levels in the body change over time. Positive serology in treated patients doesn’t necessarily mean they have an active infection just as negative results are not indicative of cure.
Controversy #5 Uncertain causation of Chronic Lyme
Several causes for chronic Lyme have been suggested but supporting evidence is lacking and include:
1) Other infections
2) Post infectious state
3) Permanent or temporary tissue damage
4) Secondary conditions triggered by initial infection and persisting despite Bb eradication
5) Immune dysfunction either to autoantibodies or unregulated inflammation 6) Persistent Bb infection
Many doctors acknowledge all of these potential causes except persistent infection despite much evidence to the contrary including an NIH sponsored study demonstrating documented uninfected ticks becoming infected after feeding on a chronically infected patient who had been treated for LD over a year earlier. Also, evidence for 1 cause of persistence does not rule out all others as well as it may be numerous mechanisms working together.
Controversy #6 Antibiotic Usage
The CDC and IDSA propagate the idea that antibiotic treatment is risky and doesn’t help patients, while others disagree. According to Maloney the evidence supports the selective use of antibiotics for chronic Lyme. She also states that the trials by Klempner et al should not be used to prove that antibiotics are not helpful as the study was biased and of poor design. She also points out that findings demonstrating effective retreatment that improved patient outcomes as well as complete recovery in some, has received little notice and that most doctors are not going to even know about them. She also wisely mentions that immune modulators may be useful but persistent infection needs to be ruled out because lowering the immune response risks triggering an active infection.
Maloney clearly admonishes infusion nurses that the science of chronic Lyme is constantly changing but that many doctors have wrongly entrenched themselves in a biased opinion despite the reasoned opinions of colleagues and that due to this they will probably find themselves in the thick of the argument. She says nurses can and should influence treatment decisions by advocating for the patient and by staying abreast of current science and giving accurate information that offers options to create a dialog between care giver and care receiver.
Author Affiliation: Partnership for Healing and Health, Wyoming, Minnesota.
Elizabeth L. Maloney, MD, is the president of Partnership for Health and Health, Ltd. She develops educational materials on tick borne illnesses, including accredited continuing medical education courses for physicians and nurses, and has published papers and letters on Lyme disease in peer-reviewed journals. The author has no conflicts of interest to disclose. This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially.
Corresponding Author: Elizabeth L. Maloney, MD, President, Partnership for Health and Health Ltd, PO Box 84, Wyoming, MN 55092 ( firstname.lastname@example.org ). Elizabeth L. Maloney , MD DOI: 10.1097/NAN.0000000000000195