Friday 12 May 2017

CHRONIC LYME DISEASE - DEFINED

Chronic Lyme Disease: A Working Case Definition

Stricker RB* and Fesler MC International Lyme & Associated Diseases Society, Bethesda, MD; Union Square Medical Associates, San Francisco, CA, USA *Corresponding author: Raphael B. Stricker, Union Square Medical Associates, 450 Sutter Street, Suite 1504, San Francisco, CA 94108, USA Received: April 07, 2017; Accepted: April 25, 2017; Published: May 03, 2017


Abstract 
Although Lyme disease is the most common tickborne illness in the USA and Eurasia, the pathophysiology and clinical course of chronic Lyme disease (CLD) have not been formally defined. The purpose of this paper is to present a working case definition of CLD based on analysis of more than 700 peerreviewed publications. According to this definition, CLD is a multisystem illness with diverse musculoskeletal, neuropsychiatric and/or cardiovascular manifestations that result from ongoing infection with pathogenic members of the Borrelia spirochete complex often associated with other tickborne disease (TBD) pathogens. To qualify for the diagnosis of CLD, patients must have Lymecompatible symptoms and signs that are either consistently or variably present for six or more months. Two subcategories of CLD include untreated chronic Lyme disease (CLD-U) and chronic Lyme disease following a limited course of antibiotic treatment (CLD-T). The symptom patterns and optimal therapy of CLD require further study

http://austinpublishinggroup.com/chronic-diseases/online-first.php

There is some important information in this study which is available as pdf from the link above.
These are some short extracts that I find helpful. Anyone interested though should go to the full pdf to read further details.


Categories of CLD Untreated chronic Lyme disease (CLD-U) Patients whose exposure was not clearly identified and thus have prolonged untreated infection.

Chronic Lyme disease following limited antibiotic treatment (CLD-T) Patients who were diagnosed with Lyme disease and completed a limited course of antibiotic therapy, but whose symptoms persist.

This category differs from “Post-Treatment Lyme Disease Syndrome” (PTLDS), a research case definition proposed by the Infectious Diseases Society of America (IDSA) that excludes ongoing TBD infection as the cause of persistent CLD symptoms.

Clinical Judgment Until technological advances provide reliably sensitive and  specific diagnostics, some patients will continue to have a diagnosis that remains unclear. Under these circumstances, the value of clinical judgment will remain an important component in treating these individuals. According to the American Medical Association Code of Medical Ethics, the primary responsibilities of clinical medicine are to alleviate patient suffering and prevent disease [155]. As previously described by Johnson et al [149] and Cameron et al [156,157]. patients with CLD are often quite ill, and physicians are charged with finding balanced and effective management strategies for such patients.
Uncertainty about a CLD diagnosis may confound clinical decision making, but clinical uncertainty should not exclude that diagnosis. This process involves both inclusionary and exclusionary criteria. Patient care is dynamic, and clinical judgment requires vigilance in assessing clinical outcomes. As described by Kienle and Kiene, “Clinical judgment is a central element of the medical profession, essential for the performance of the doctor” [158]. Thus given the current absence of a “gold standard” test for Lyme disease, it is essential that healthcare providers should consider this condition if symptoms and/or clinical signs occur in patients with a history consistent with CLD, as summarized in the guidelines of the International Lyme and Associated Diseases Society (ILADS) [5].

Conclusions This is the first study that provides a working case definition of chronic Lyme disease (CLD) and its subcategories. We propose that CLD is the result of persistent, active infection by pathogenic members of the Borrelia spirochete complex often associated with other TBD pathogens.


Thanks to PRweb which first alerted me to this paper 
http://www.prweb.com/releases/2017/05/prweb14305710.htm


Interesting comments on this paper can be found :-  https://sites.google.com/site/marylandlyme/chronic-lyme-disease/definition-of-chronic-lyme-disease/why-the-definition-paper-is-so-important

Monday 8 May 2017

ALS or MOTOR NEURON DISEASE CAUSED BY LYME DISEASE




Dr. Al Miller Lyme Disease Intro
Differential Diagnosis of Lyme & Borreliosis

Published on Apr 19, 2017
This is the introduction to my 4 part series on Lyme Disease.

For more information contact me at lymediagnosis@gmail.com

The above was shared by a friend Dana Parish with the following information -'Iwas surprised and delighted to receive a call from retired Mayo Clinic rheumatologist, Dr. Alfred Miller, last week. He wanted to tell me about his daughter-in-law, also named Dana, who was struck by ALS at age 43. He could not imagine this happening to this beautiful, healthy woman and started investigating. 

Upon researching, he discovered links between Lyme and ALS and had her tested. WHAT DO YOU KNOW!!! She was POSITIVE! Remember, though, he had her tested at a proper lab, IGeneX, and NOT Quest or Lab Corp, which miss approx 50% of cases!

So, all the "best" doctors in the world sent her home to die with no hope and no proper investigation into the CAUSE of her ALS. Those of us in the Lyme community are well aware that the Mayo Clinic is the LAST place you want to go if you have Lyme.

Dr. Miller began treating her aggressively with IV antibiotics and they halted the progression of her illness. This does not happen with "real" ALS. 

He began contacting his patients who he had previously diagnosed with Fibromyalgia, Rheumatoid arthritis, and other inflammatory "auto-immune" arthritis and diseases and urged them to get properly assessed for Lyme and other tick-borne diseases known to cause these symptoms, like Bartonella. 

WHAT DO YOU KNOW!! Most of them had Lyme!!

I look forward to bringing you more from Dr. Miller soon. In the meantime, he is on a mission to educate doctors and patients about the ravages of this disease and his horror at the medical community's ignorance about it.


All Dr Miller's presentations are available on You Tube  

Thank you Dr Miller for having an open mind, after a lifetime in Rheumatology you were still willing to learn and seek out answers, but more importantly thank you for speaking up and sharing your experiences.

Singer/songwriter Dana Parish was involved in the recent Fox5NY News 
LYME & REASON which I posted about https://lookingatlyme.blogspot.co.uk/2016/07/fox-5-lyme-and-reason.html 


Thrilled to share that FOX 5 / Fox5NY.com Lyme and Reason Special won the Emmy for Best Science/ Health program, as presented by Dr. Oz.