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Retaliation For New Chronic Lyme Definition

June 2017

Healio- Infectious Diseases In Children
Confronting the misnomer of chronic Lyme disease
No Author Listed- see note below the link to this article

This is a new four-page article kicking us all over town again just for being Lyme patients who failed the IDSA inadequate diagnostic and treatment protocols, and for then going to doctors who actually know what they are doing.  After reading this tonight I am pretty sure they don’t like us anymore.  ~smile~  (Thanks to SF for sharing this article.)  

QUOTE-  "In its alternative diagnostic guidelines for chronic Lyme disease, ILADS included many of the staple symptoms of post-treatment Lyme disease syndrome (PTLDS), such as musculoskeletal pains, disrupted sleep and lack of typical mental functions; however, the group also included several nebulous symptoms not customarily associated with B. burgdorferi infection, such as night sweats, sore throat, myalgia, diarrhea, jaw pain, tinnitus and vertigo.”

QUOTE- “...patients and advocate groups — most commonly for neurologic and rheumatologic diseases — have continued to point to Lyme disease as a culprit for a range of unexplained symptoms.”

QUOTE-  "“The media coverage of chronic Lyme disease is almost sensationalism, and has resulted in many people expanding upon what we recognize as Lyme disease to include symptoms that are likely not a result of the disease or even the infectious process…."

QUOTE-  "The internet has provided not only a way to link together patients with comparable symptoms lacking diagnoses into supportive networks, but also facilitated the spread of inaccurate medical information and unsubstantiated treatment advice through online forums.  The burgeoning online chronic Lyme community not only consists of patients who are symptomatic and Lyme disease activists, but also by groups of physicians who specialize specifically in diagnosing and treating these patients, even if the treatments suggested have minimal scientific backing."

This one is actually funny-  QUOTE- “This sense of futility is one of the things that drives patients away from infectious disease physicians, and conventional medicine in general, and probably lies behind the growth of the anti-vaccine movement and other alternative viewpoints.”

QUOTE-  "Eugene Shapiro, MD, professor of pediatrics and epidemiology at the Yale School of Medicine and an Infectious Diseases in Children Editorial Board member…”  [This was published in his journal.]

QUOTE-  "Compounded by misinformation shared through internet forums, chronic Lyme disease has become a new fixture in the debate between patients and providers regarding medically unexplained symptoms. To explore the chronic Lyme disease phenomenon and how it fits into the health care landscape, Infectious Diseases in Children spoke with several infectious disease and Lyme specialists [?] concerning the pervasive misnomer of chronic Lyme disease, the furor of the Lyme community, and how pediatricians and physicians can better prepare themselves for treating people with medically unexplained symptoms.”

QUOTE-  "Communities of patients and patient advocates have emerged with the belief that their symptoms are the result of a persistent Lyme disease infection that has gone undiagnosed, despite the fact that many of these patients show no objective evidence they were previously infected."

QUOTE-  "H. Cody Meissner, MD, chief of the division of pediatric infectious disease at Tufts Medical Center, noted that many symptoms often associated with chronic Lyme disease are also found in people who exhibit no sign of prior Lyme infection.”

QUOTE- "With Lyme advocacy groups disseminating medical misinformation through online forums, physicians can expect continued resistance to diagnoses that do not consider Lyme disease for chronic symptoms; ultimately, however, the focus should not be on the name associated with these symptoms but rather on the patient and their needs."

QUOTE-  "“[Treatment] gets complicated when it is the parent who is driving it, and the interaction between the child and the parent gets very complicated,” Shapiro said. “The goal is to get the child back to school, to seeing their friends. The things that seem to be effective, in addition to exercise and improved sleep, is to enter the patient into a long-term therapeutic relationship with some kind of provider — doctor, nurse, social worker, counselor, psychologist.”

QUOTE- "Parents want a concrete diagnosis and treatment when it concerns their children, and may feel frustrated when the physician refers them to a mental health professionals to address symptoms of depression, anxiety or other psychological concerns that a patient may be experiencing."
QUOTE- "Furthermore, alternative doctors or ‘Lyme-literate’ MDs who rush to label a patient with chronic Lyme disease based on symptoms without performing a more thorough patient analysis may ultimately miss the true root of the patient’s problem.”

Too many more idiotic quotes to list them all … so please just read the article.

COVER STORY

Confronting the misnomer of chronic Lyme disease

Infectious Diseases in Children, June 2017
Link Here


At the end of the article it states...

For more information:
Paul M. Lantos, MD, can be reached at Duke University School of Medicine, DUMC 100800, Durham, NC 27710; email: paul.lantos@duke.edu
Eugene Shapiro, MD, can be reached at the Yale School of Medicine, 789 Howard Avenue, New Haven, CT, 06519; email: eugene.shapiro@yale.edu
H. Cody Meissner, MD, can be reached at the Floating Hospital for Children at Tufts Medical Center, 800 Washington Street. Boston MA 02111; email: cmeissner@tuftsmedicalcenter.org
Sunil Sood, MD, can be reached at Hofstra Northwell School of Medicine, 500 Hofstra University Hempstead, NY 11549.
Disclosures: Lantos, Meissner, Shapiro, and Sood reported no relevant financial disclosures.


NOTE- On May 11, 2017, I wrote this about the publication of the new chronic Lyme definition by Stricker, et. al. and it took less than a month for the beatings to commence.

"Will those whose names are on this study be horse whipped unmercifully for producing this paper with a new definition? Absolutely!" ... "And, unfortunately, they will be sadly and badly beaten repeatedly for a long time to come. Bless their hearts, they took a huge risk publishing this paper in the middle of a ruthless war that never seems to end."



















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