Wednesday, 19 July 2017

HUMAN RIGHTS VIOLATIONS AND ETHICAL DECISION MAKING ABOUT CHRONIC LYME DISEASE





Published on Jun 2, 2017 Presentation to UN Special Rapporteur on Health and Human Rights, June 8 2017, as a member of the Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes.



Human Rights Violations of Relapsing Fever and Lyme Disease Patients Under International Investigation

FOR IMMEDIATE RELEASE June 27, 2017

Contact author: Jenna Luché-Thayer 

EMAIL: jennaluche@gmail.com

Human Rights Violations of Relapsing Fever and Lyme Disease Patients Under International Investigation

A report submitted to World Health Organization resulted in a meeting between a United Nations Human Rights Council Special Rapporteur and medical professionals, scientists, human rights experts and advocates on June 7, in Geneva, Switzerland. This meeting focused on the violations against persons living with borreliosis infections, such as relapsing fever and Lyme disease.

Special Rapporteur, Dr. Dainius Pūras heard presentations on the range of these violations by representatives from an international Ad Hoc Committee dedicated to updating the World Health Organization’s (WHO) diagnostic codes for borreliosis infections and Global RBCC, a consortium responding to the Lyme disease epidemic.

Jenna Luché-Thayer, a human rights expert with 32 years of experience in 42 nations reported, “Borreliosis infections are pandemic – these include relapsing fever and Lyme borreliosis. The WHO diagnostic codes do not recognize many of the disabling conditions caused by these infections. Across the globe, medical systems use these codes to diagnose illness and determine treatments. The outdated codes result in very sick people being denied treatment —even when treatment options meet the internationally accepted gold standard for guidelines set by the Institute of Medicine (IOM). In addition to denial of care, there are attacks on medical professionals who are following these guidelines to treat chronic Lyme disease patients.” 

The former Senior Advisor to the United Nations and U.S. government asked, “Can you imagine very sick children, in the process of healing through treatments from gold standard guidelines, being forcibly removed from their parents? This is happening in many countries. Can you imagine health insurance companies telling Lyme patients they will not cover such treatments but will pay for their euthanasia? According to Dutch researcher Huib Kraaijeveld, this is happening in Europe. These are shameful and predatory actions, and appear to be largely driven by outdated science, outdated codes and skewed financial motivations,” says Luché-Thayer. 

The Lyme disease bacteria —spirochetes similar to syphilis— are known to evade immune response and form biofilms that are difficult to eradicate. Disputes about appropriate treatment often leave patients with no treatment options for their disabling neurological, cardiac and arthritic symptoms, as well as unrelenting fatigue and pain. Lyme carditis, an infection of the heart, can cause death and undiagnosed Lyme can lead to dementia.

Hundreds of peer reviewed publications describe serious physical conditions caused by the infection. They include Lyme nephritis, hepatitis, aortic aneurysms, persistent infection, strokes and congenital Lyme disease. The complications from Syphilis are clearly listed and detailed in the WHO codes whereas most Lyme complications are not. 

Dr. Clement Meseko, Chief Research Officer and Onehealth/Ecohealth advocate at the National Veterinary Research Institute in Vom, Nigeria told the Special Rapporteur, “Many Africans depend on livestock for their livelihood and this exposes them to zoonotic borreliosis. WHO diagnostic codes for these infections need to be updated and surveillance across Africa needs to be improved. Until this happens, many people in Africa will just suffer.” 

The WHO diagnostic codes for Lyme disease parallel the views held by the Infectious Diseases Society of America (IDSA). IDSA is a private medical society that promotes strict treatment limitations, regardless of Lyme patient response, and in contrast to their recommendations for other patient groups suffering from persistent infection. Some IDSA members theorize that undiagnosed mental illness, rather than persistent infection, might explain why IDSA recommended protocols fail thousands of clinically diagnosed Lyme patients.

The 2006 IDSA Lyme treatment guidelines do not meet the IOM’s internationally accepted standards for guidelines. Some of the guideline authors provide expert witness for insurers against Lyme patients; and insurers use the 2006 IDSA guidelines to deny coverage of treatments from guidelines that do meet IOM standards. 

Dr. McManus is a Founder of the Tick Borne Diseases Unit at the University of Sydney and a Board Director of International Lyme and Associated Diseases Society (ILADS). ILADS is a medical society that developed the patient-centered treatment guidelines that meet the IOM’s standards

Dr. McManus is very concerned by the lack of diagnostic tools for the thousands of Australian patients who show symptoms of tick borne diseases but never test positive for Lyme disease because they have variant forms of relapsing fever. According to McManus, poor diagnostic tools and lack of clinical familiarity leave most of these patients untreated. 

In testimony to the Special Rapporteur, bioethicist Diane O’Leary, of the Kennedy Institute of Ethics at Georgetown University notes that global health organizations have clear ethical obligations. “In the context of scientific debate about the biological origins of chronic Lyme, policy makers have a duty to proactively protect the right to health.”  Ethically speaking, it is not possible to justify the risk involved in continuing to obstruct access to medical care for chronic Lyme patients, stated O’Leary.

Prof. Christian Perronne is an internationally renowned Infectious and Tropical Diseases specialist with over 300 scientific publications and has played an advisory role to WHO. Prof. Perronne asked the Special Rapporteur, “How can any treatment options be withheld from these very sick patients? This goes against the Hippocratic oath of do no harm. In France, I have used prolonged treatment options longer than six weeks to successfully help thousands of patients.” 

The representatives also attended the Special Rapporteur’s annual presentation to the United Nations Human Rights Council and met with official and diplomatic delegates from many nations to discuss their concerns.

According to Ad Hoc Committee and Global RBCC founder Luché-Thayer, this is just the beginning of their actions. “We will report any government agency, medical board, medical society or health insurance company that interferes with these human rights, said Luché-Thayer. “We are stakeholders with a global reach and an international presence and the Special Rapporteur has the mandate to investigate all these abuses.”

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Jenna Luché-Thayer, Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes and Global RBCC, Copyright © All Rights reserved


Thursday, 29 June 2017

LYME DISEASE - QUEEN'S SPEECH HOUSE OF LORDS






  • My Lords, I want to speak briefly on the specific health issue of Lyme disease, which is a rapidly increasing health risk in the United Kingdom. If Lyme disease is not treated early, it can cause significant illness and devastate affected patients’ lives. This is what life has been like for my daughter, and I declare this personal interest.
    Many noble Lords will be aware that ticks harbour Lyme disease, as well as many other equally serious infections. These infections are passed to humans and animals via the bite of an infected tick, due to and during their method of feeding. The danger is no longer confined to rural areas, with ticks now being found in every county of the United Kingdom, and increasingly so in urban parks and people’s gardens. If Lyme is diagnosed and treated early, the chances of a full recovery are good. However, failure to diagnose early and treat adequately can result in serious consequences to the patient. Tick-borne diseases that are misdiagnosed or neglected result in complicated infections, which have devastating and multisystemic consequences. Patients can be left with extremely debilitating and chronic symptoms, needing a wheelchair or completely bedridden, and enduring intense and relentless suffering.
    Despite the increasing threat that Lyme disease poses to public health, there remain no suitable UK official guidelines for diagnosis or treatment. What we do have is outdated National Health Service guidance, relying on guidelines written by the Infectious Diseases Society of America and supported by the CDC. According to the National Guideline Clearinghouse of America, the IDSA-CDC guidelines are not fit for purpose. They are outdated and do not take into account recent developments in the understanding of these complex infections.
    The absence of adequate guidelines is closely linked to the fact that insufficient levels of training are available to our doctors. Even if a positive test is obtained, expertise is seriously lacking, both in value of interpretation and in dealing appropriately with the illness. That stark statement is in accordance with multiple testimonies from patients. Expert patient input is crucial in turning the situation into a positive solution, not only for patients themselves but for the National Health Service as a whole.
    Failure to meet the challenges of Lyme disease has led to unknown numbers of people becoming infected, but not diagnosed or treated. It could amount to tens or even hundreds of thousands of people. The UK now finds itself in a situation where patients with diverse illnesses and symptoms might actually have unrecognised Lyme disease. In these patients, the infection could have reached a stage where treatment will be difficult and lengthy and will require the supervision of expert physicians, trained and experienced in this complex disease and the frequently occurring co-infections.
    The cost to the Exchequer in terms of numbers of patients unable to work and using the NHS for serious health problems must be a truly staggering amount. Neither this country, nor affected patients, can afford this. Early recognition of symptoms and early treatment would save our National Health Service a great deal of money.
    Given the huge cost, both in terms of the impact on the patient’s quality of life and, in practical terms, on our health service, it is clear how important it is to prevent as many cases as possible reaching this stage. Improvements in the training available to our doctors should be made a top priority. However, awareness among the general public of the risk posed by ticks should also be prioritised. There are some very simple measures that can be taken to reduce one’s chance of becoming infected with Lyme disease. However, few people have any knowledge of this. How can we safely, and with a clear conscience, encourage children to play outside and make the most of the outdoors if we are carelessly allowing them to risk their health by contracting one of these insidious, infectious diseases?
    Outdated guidelines, unreliable blood tests, insufficient training for doctors, a lack of tick-borne specialists of calibre and a widespread lack of awareness among the general public of preventive measures are all factors that are leaving us alarmingly ill-equipped to tackle a problem that poses a rapidly increasing risk to every UK citizen. In the light of this, I ask my noble friend what his department is doing to ensure that GPs receive training in Lyme disease that is mandatory and thorough enough to allow them to make clinical diagnoses. Proper awareness will prevent the number of Lyme disease sufferers growing.
    Lyme patients want to regain their health. They want to get back to work. They wish for nothing more than to regain control over their lives and take part in all the activities they enjoyed before they became ill. Most Lyme patients have the will and determination to achieve this. But none of these aims can happen if they are sidelined and hobbled by misguided opinion—which includes the current health system situation, with its constraints and limitations




Sunday, 25 June 2017

SUICIDE AND LYME AND ASSOCIATED DISEASES

Thanks to Dr Robert Bransfield for this important work published 16th June 2017





Video abstract of original research paper “Suicide and Lyme and associated diseases” published in the open access journal Neuropsychiatric Disease and Treatment by Bransfield RC

Purpose: The aim of this paper is to investigate the association between suicide and Lyme and associated diseases (LAD). No journal article has previously performed a comprehensive assessment of this subject.

Introduction: Multiple case reports and other references demonstrate a causal association between suicidal risk and LAD. Suicide risk is greater in outdoor workers and veterans, both with greater LAD exposure. Multiple studies demonstrate many infections and the associated proinflammatory cytokines, inflammatory-mediated metabolic changes, and quinolinic acid and glutamate changes alter neural circuits which increase suicidality. A similar pathophysiology occurs in LAD.

Method: A retrospective chart review and epidemiological calculations were performed.

Results: LAD contributed to suicidality, and sometimes homicidality, in individuals who were not suicidal before infection. A higher level of risk to self and others is associated with multiple symptoms developing after acquiring LAD, in particular, explosive anger, intrusive images, sudden mood swings, paranoia, dissociative episodes, hallucinations, disinhibition, panic disorder, rapid cycling bipolar, depersonalization, social anxiety disorder, substance abuse, hypervigilance, generalized anxiety disorder, genital–urinary symptoms, chronic pain, anhedonia, depression, low frustration tolerance, and posttraumatic stress disorder. Negative attitudes about LAD from family, friends, doctors, and the health care system may also contribute to suicide risk. By indirect calculations, it is estimated there are possibly over 1,200 LAD suicides in the US per year.

Conclusion: Suicidality seen in LAD contributes to causing a significant number of previously unexplained suicides and is associated with immune-mediated and metabolic changes resulting in psychiatric and other symptoms which are possibly intensified by negative attitudes about LAD from others. Some LAD suicides are associated with being overwhelmed by multiple debilitating symptoms, and others are impulsive, bizarre, and unpredictable. Greater understanding and a direct method of acquiring LAD suicide statistics is needed. It is suggested that medical examiners, the Centers for Disease Control and Prevention, and other epidemiological organizations proactively evaluate the association between LAD and suicide.

Read the full paper here: https://www.dovepress.com/suicide-and-lyme-and-associated-diseases-peer-reviewed-article-NDT


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.

Saturday, 4 March 2017

SULFA DRUGS & THEIR COMBINATIONS AGAINST STATIONARY PHASE LYME DISEASE IN VITRO

Activity of Sulfa Drugs and Their Combinations against Stationary Phase B. burgdorferi in vitro

Jie FengShuo ZHANGWanliang ShiYING ZHANG