Recently we published a post about the forward motion of Lyme. This took a look at new legislation on the treatment & diagnosis of Lyme patients in Connecticut & the Commonwealth of Virginia.
Recently a public hearing on Lyme was held in Pennsylvania which allowed sufferers & their doctors to speak out about the true reflection of Lyme. Is it hard to catch & easy to treat like the IDSA guideline authors state, & are the test really infallible?
Dr Harold Smith MD tells of his experience in urgent care medicine with Lyme patients on how often the disease becomes chronic if not treated early or insufficiently (see video link below).
Dr Bransfield, a psychiatrist who often works with Lyme patients testifies below:
Testimony for Public Hearing on Pennsylvania House Bill #272 – Lyme Disease and Related Tick-Borne Disease Education, Prevention (August 2011)
Thank you for the opportunity to testify today. I am the President of the International Lyme and Associated Diseases Society, President of the New Jersey Psychiatric Association, a member of the Board of Trustees of the Medical Society of New Jersey, an Associate Professor at RWJ-UMDNJ Medical School, a researcher and a physician who treats patients with Lyme disease, including many from Pennsylvania. I represent the physicians who have the long term responsibility of treating patient with Lyme and associated diseases. I am in strong support of House Bill #272 and reference is made to my August 22, 2010 letter supporting this legislation last year.
In the 1600s Dr Thomas Wynne, William Penn’s physician and the first speaker for the Pennsylvania Assemblies who was also my ancestor treated a smallpox epidemic threatening the early immigrants to Pennsylvania. Today we have a different epidemic—Lyme disease. The recently released CDC Lyme statistics lists Pennsylvania and New Jersey as the two states with the most reported and confirmed new cases of Lyme disease in 2010 (PA: 3805, NJ: 3712 reported & PA: 3298, NJ: 3320 confirmed). The CDC and others recognize the formally reported cases are a small fraction of the actual cases which, according to the CDC, may be 10X the number of reported cases while the research of Boltri demonstrates the actual number of cases may instead be 40X the number of reported cases which would represent over 150,000 new cases of Lyme disease in Pennsylvania in 2010. Clearly prevention has failed. Some will be effectively treated, however a significant that are not adequately treated will progress into chronic illness resulting is a burden of disability, illness and suffering that could have been prevented by earlier diagnosis and treatment. Four National Institutes of Health (NIH) trials documented the severity of chronic Lyme disease symptoms these patients report. One trial described the pain as severe as post surgery patients and fatigue as disabling as seen in multiple sclerosis.
We in mainstream medicine strongly support any program that promotes advancement of public awareness, physician education, research, more accurate diagnosis and adequacy of treatment. As a psychiatrist I often see the failures of our medical system, the most severe late stage symptoms of Lyme and associated diseases are neuropsychiatric and that is why I became involved with Lyme disease. The psychiatric consequences of inadequately tick-borne diseases include a number of severe and disabling mental illnesses, autism, developmental disabilities, dementia and violent behavior. There are some infectious disease physicians and others in the medical community who have minimal training in psychiatry and do not understand that most mental illness is physical injury that impairs brain functioning and many of the so called ―subjective and non-specific symptoms of Lyme disease are objective with adequate testing and are symptoms of sickness syndrome associated with chronic infection. No one on the IDSA guideline panel was knowledgeable about psychiatry and they inappropriately dismissed patient’s symptoms as the –―“aches and pains of daily living”. Refer to the attached list of over 250 peer reviewed medical journal articles supporting this statement.
The National Institute of Health, the CDC and scientists studying the etiology of disease all recognize a growing body of peer reviewed studies published in mainstream scientific journals that demonstrate many common diseases of unknown origin are in fact the result of the presence of slowly acting infections caused by viruses, bacteria or protozoa. Infections are often a cause of many chronic illnesses. Evidence presented during the legally mandated review of the restrictive Lyme guidelines of the Infectious Diseases Society of America (IDSA) has confirmed the potential for persistent infection with the Lyme spirochete, Borrelia burgdorferi, as well as the complicating role of multiple tick-borne coinfections and failure of short-course antibiotic therapy. In addition evidence was submitted that there are mechanisms of persistent infection that allow parasites to evade the immune system and complex interactions between multiple infections. We need to progress forward in medicine and not be hampered by outdated beliefs.
There are two opposing standards of care regarding Lyme disease which are supported by two opposing views and two opposing sets of guidelines—ILADS and IDSA. ILADS, the International Lyme and Associated Diseases Society, is evidence based and defines Lyme disease in a broader and more comprehensive manner and recognizes the limitations of current testing and the complexity of treatment while the IDSA definition is restrictive and places greater confidence in current testing and short courses of antibiotic treatment and a recent review by Lee and Vielemeyer ―found a relative paucity of good quality evidence behind current IDSA guidelines. We academicians, researchers and clinicians within ILADS and those following our guidelines that bear the responsibility to treat these patients recognize the limitations of current testing the complexity, chronicity and seriousness of these problems. The average physician inappropriately uses the CDC surveillance case definition as diagnostic criteria. The CDC website clearly states ―This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis. The Lyme ELISA has only a 46-56% accuracy rate and the Chair of the recent Virginia Task Force on Lyme Disease and Other Tick-Borne Diseases recently stated: “Doctors here in Virginia are committing malpractice by saying the ELISA test is sufficient. Their report is submitted with my testimony. There are multiple other problems with lab testing that I can expand upon. Evidence based medicine recognizes all treatment decisions are a risk vs. benefit clinical assessment that is made using the best scientific evidence available, clinical judgment and patient considerations. There is evidence some patients clearly benefit from longer courses of antibiotics and inadequate treatment of infectious diseases encourages antibiotic resistance. Although all medical treatments have risks, there is considerable evidence that inadequate treatment has been linked with autism, serious neurological, psychiatric, and other disease and death. Acne is treated for years with some of the same antibiotics used for Lyme disease. What gives distant third parties the right to oppose medically necessary treatments for Lyme disease?
We have a serious problem that cannot be ignored. It is puzzling why there is opposition to a bill that establishes a task force to investigate Lyme disease and other tick borne infections, to develop a program of public and professional education and to allow adequacy of treatment and insurance coverage. An increasing number of physicians are successfully treating patients with chronic Lyme and associated tick-borne disease with treatments that are effective and beneficial – allowing patients to have a better quality of life. As physicians we took an oath to protect our patients from harm. Laws, governmental policy and insurance mandates should complement our oath and not oppose it. Texas recently passed Lyme disease legislation because Senator Harris required 17 months of treatment and the previously restrictive IDSA based regulatory policy only allowed one month. As a senator he was able to circumvent regulations by receiving his antibiotics from 17 different physicians, but the average working person lacks this capability. This issue is best summarized by Dr. Benjamin Rush, signer of the Declaration of Independence and personal physician to George Washington who stated—―Unless we put medical freedom into the Constitution, the time will come when medicine will organize into an undercover dictatorship to restrict the art of healing to one class of men and deny equal privileges to others: The Constitution of this Republic should make a special privilege for medical freedom as well as religious freedom. Although it has been stated politicians should not meddle in medical matters, government has a responsibility to protect basic freedoms including the freedom to access to medically necessary care.
Robert C Bransfield, MD, DLFAPA
President International Lyme and Associated Diseases Society
President New Jersey Psychiatric Association
Board of Trustees Medical Society of New Jersey
Clinical Associate Professor Robert Wood Johnson UMDNJ Medical School
Associate Director Psychiatry Riverview Medical Center
Chair of Psychiatric Quality Assurance Riverview Medical Center
Board Certified American Psychiatry and Neurology in Psychiatry
Certified in Psychopharmacology by American Society of Clinical Psychopharmacology
Distinguished Life Fellow American Psychiatric Association
What about the UK?
Meanwhile it is very interesting to note that in the UK more shutters are being brought down about openly discussing the inherent problems of testing & adequate treatment. The charity Lyme Disease Action kindly invited a member of the HPA (Health Protection Agency who oversee the Lyme testing) & a speaker refused to join them citing that ‘HPA staff are banned from speaking’ at the Lyme conference. Curious indeed why HPA are unwilling to discuss the need for better education, testing & treatment to improve the lives of Lyme patients. http://www.lymedisease.org/news/lyme_disease_views/hpa.html
The article below published in the Journal of Medicine: Netherlands March 2011 says it all..
The challenge of Lyme disease: tired of the Lyme wars
B.J. Kullberg*, A. Berende, J.W.M. van der Meer
Department of Medicine, Radboud University Nijmegen Medical Centre; and Nijmegen Institute for
Infection, Inflammation, and Immunity (N4i), the Netherlands,
Snippet of the text as follows:
Why do doctors do their best to argue that patients consulting us about Lyme disease are overdemanding and should not be taken seriously? Clearly, many patients with aspecific symptoms do not have active Lyme disease, but this does not deny their concerns and their right to ask for a medical expertise. Patients with chronic fatigue and ‘aspecific’ symptoms, such as myalgia, impaired memory or concentration, headaches, or arthralgia, are often perceived as being annoying or overdemanding.
Most likely, doctors feeling insecure and powerless about patients with unexplained physical symptoms tend to blame their patients, especially if they express specific attributions and cognitions. This leads to a strong tendency for circular reasoning, such as that stated by Coumou et al.: persistent infection as a cause of chronic symptoms after ‘adequate treatment’ is highly unlikely. Indeed, if ‘adequate’ signifies that the microorganism has been eradicated and the immune system has come to rest, the problem has been solved, but the issue rather is whether treatment has been ‘adequate’ or not in patients who continue to feel ill. In fact, authors using the term ‘adequate treatment’ suggest to be certain without further study that treatment has been successful and curative in 100% of cases, while actually referring to standard therapy for uncomplicated disease.
Likewise, designating such patients as having ‘post-Lyme disease syndrome’ (PLDS) incorrectly suggests a prior knowledge that the disease has been cured (‘post’ meaning after), before reasonable attempts have been made to rule out relapse or persistent infection. Whereas persistent infection may be highly unlikely in many patients, using deceitful terminology hampers a scientific and evidence-based approach. For this reason, the Dutch CBO 2011 Guidelines Committee has recommended not to use the term PLDS.
Meanwhile I’ll leave you with an article by Dr Cameron
Proof that Chronic Lyme exists:
“The evidence continues to mount that Chronic Lyme Disease (CLD) exists and must be addressed by the medical community if solutions are to be found. Four National Institutes of Health (NIH) trials validated the existence and severity of CLD. Despite the evidence, there are physicians who continue to deny the existence and severity of CLD, which can hinder efforts to find a solution. Recognizing CLD could facilitate efforts to avoid diagnostic delays of two years and durations of illness of 4.7 to 9 years described in the NIH trials. The risk to society of emerging antibiotic-resistant organisms should be weighed against the societal risks associated with failing to treat an emerging population saddled with CLD. The mixed long-term outcome in children could also be examined. Once we accept the evidence that CLD exists, the medical community should be able to find solutions. Medical professionals should be encouraged to examine whether: (1) innovative treatments for early LD might prevent CLD, (2) early diagnosis of CLD might result in better treatment outcomes, and (3) more effective treatment regimens can be developed for CLD patients who have had prolonged illness and an associated poor quality of life.”