Social Security Administration: Include Lyme disease in the SSA's Blue Book
US Social Security Administration Officials:
Despite the fact that Lyme disease is the fastest growing infectious disease in the country, reaching epidemic proportions in the United States with cases by far outnumbering those of AIDS, West Nile virus, swine and avian flu combined, you refuse to recognize Lyme disease in your official List of Impairments (known hereafter as Blue Book).
Link to Lyme disease statistics:
Despite the fact that those of us with Lyme disease suffer from significant loss of quality of life due to unrelenting chronic pain equivalent to that of patients with congestive heart failure or osteoarthritis (two conditions which you have chosen to list in your Blue Book), you refuse to acknowledge Lyme disease.
Link to article that documents quality of life statistics:
Proof That Chronic Lyme Disease Exists, Daniel J. Cameron, Department of Medicine, Northern Westchester Hospital, Mt. Kisco, NY 10549, USA, Accepted 26 March 2010, Interdisciplinary Perspectives on Infectious Diseases,Volume 2010 (2010), Article ID 876450 http://www.hindawi.com/journals/ipid/2010/876450/
Despite abundant evidence that late-disseminated Lyme disease, also known as chronic Lyme disease or late-stage Lyme disease, is very real, can be extremely disabling, and that there is no permanent cure – factors which would make this highly incapacitating disease an obvious contender for SSA disability benefits -- you refuse to include our disease in your Blue Book.
Link to partial list of current research substantiating evidence of chronicity:
Lyme disease is very frequently misdiagnosed for years, oftentimes decades, with dubious idiopathic "syndrome" conditions, such as chronic fatigue syndrome (SSA Ruling, 1999: SSR 99-2p), multiple sclerosis (SSA Listing: 11.09), fibromyalgia syndrome (SSA Ruling, July 2012: SSR99-2p), interstitial cystitis (SSA Ruling, 2002: SSR 02-2p), and more than three hundred other "conditions" that imitate it. Yet you refuse to recognize our very real disease, while you continue to give credence to dubious syndromes and conditions which are, more and more, being discovered to be mere symptoms of Lyme disease. In fact (and there is evidence-based proof of this), all of the conditions listed above, with the exception of Lyme disease, have no clear diagnostic tests/assays or markers, yet you allow them in your Blue Book while avoiding including Lyme disease, which has definitive blood markers as well as other reliable markers (especially when compared to conditions such as fibromyalgia syndrome and chronic fatigue syndrome).
Link to numerous diagnostic assays available for Lyme disease:
As you may not be aware, chronic Lyme disease, though initially caused by the bacterium dubbed Borrelia burgdorferi, is more accurately described as a host of stealth infectious agents – bacterial, viral, fungal, mycoplasmal, etc. -- relentlessly attacking and breaking down one's immune system. In this sense, chronic Lyme disease is more akin to HIV-AIDS (which you include in your Blue Book), is best described as such (and not an acute-only, single bacterium infection), and is now being referred to in advanced medical research and clinical environs as multiple chronic infectious disease syndrome (MCIDS).
Link to Lyme Disease Presenting as Multiple Chronic Infectious Disease Syndrome (MCIDS/SIMS) & Co-Infections: Diagnosis and Treatment, Richard Horowitz, 7th National Infectious Disease (JNI) Meeting, Toulouse, France, 2011:
Despite the well known fact that in far too many cases of this disease, early diagnosis and treatment quite tragically do not take place, due in large part to the lack of training about this insidious disease within the medical community. If recognized early, it can be treated in its acute stage with a relatively short course of antibiotics. But instead, patients go undiagnosed and/or misdiagnosed for years, decades, and even lifetimes, never receiving the proper diagnosis and treatment in the first place that could have spared us from all of this pain, suffering, stigmatization, ostracizing and agony.
There is reluctance within the medical community to acknowledge that this is occurring, so those of us whose cases were not caught immediately and properly treated with adequate antibiotics are conveniently ignored, left sick, severely impaired, extremely disabled, dying -- 100 percent on our own. It is far too common for people with chronic Lyme disease, due to absolutely no fault of their own, to lose their careers/income source, their spouses, their support systems, their medical insurance, their entire lives -- and most importantly, their dignity.
To that end, Lyme disease advocates created this book and hand-delivered over 60 copies to US Congressional members in early 2012. We are including it here to insure that the SSA has a copy of it and reads it:
The Devastation of Lives and Lies:
Those with Lyme disease and related chronic infections respond to the
Infectious Diseases Society of America's (IDSA's) request for comments.
January 4 through February 7, 2012
In consideration of all of the above, we demand that you begin to take seriously Lyme disease and its myriad, life-destroying and life-threatening complexities. We are asking the SSA to provide us with at least a Ruling, if not a Listing. You are years behind in establishing this in your Blue Book, and thus have caused tremendous amounts of suffering and loss. As we would hope that you can now comprehend, suicide is oftentimes the ultimate, tragic destiny of far too many people with Lyme disease, due to mistreatment on every level of the medical system, including the Social Security Administration.
If you are now willing to right this unconscionable wrong, then we are more than happy to work with you in any capacity necessary to help to make this desperately needed action take place. SSA, it is the humane thing to do. It is a travesty beyond description that such a debilitating, life-destroying disease has been allowed to be overlooked, passed over, neglected and ignored for this long. Within our community, which is growing exponentially by the minute, there is a plethora of highly knowledgeable attorneys, healthcare providers, scientists, advocates, nonprofit leaders, and others who are eager to take on this task with you.
Thank you for your immediate attention to this gravely serious matter.