Letters for Lyme with the help of advocate Lucretia "Creda" Perilli along with the Worldwide Lyme Disease Protest US have brought you this form letter so that those of you unable to write such a long and detailed letter have the option to do so.
If you really want to all you have to do is sign your name or if you want you can add your own story within the structure of the letter provided below. We would suggest doing this with a few paragraphs only (try to summarize as best you can) and keep it close to the beginning or end of the letter.
In order to use the letter simply copy and past it into your word processor of choice.
All computers and software are different, so you may have to alter the spacing and text style to your liking once you paste it into Word or another word processor- keep that in mind!
We also have the letter available as a PDF, which can be sent to you either via FB private message or email. Simply make a request and you shall receive. Send any requests to thelymelife@yahoo.com.
Letters for Lyme: Worldwide Awareness Form Letter
Dear ,
I am writing to you today to ask for your help in seeking justice and fair treatment for all who continue to needlessly suffer from Lyme disease, a highly debilitating, extremely politicized disease, also known as late-disseminated Lyme disease, chronic Lyme disease, late-stage Lyme disease as well as the aptly proposed multiple chronic infectious disease syndrome (MCIDS).
In a fair and just world, I should have no reason to write this letter to you. After all, when someone is sick, we do the right thing and help them. At least that is what is supposed to happen. However this is not what has happened with Lyme disease, in fact the absolute opposite has occurred.
Over a decade ago, very strong Lyme disease language began appearing in annual US House and Senate Appropriations Committee directives.
All quotations found within this letter (represented throughout in italics) are from Public Law 107-116, signed by President Bush on 01/10/2002 as part of the Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations Act 2002.
These directives should have ensured that Lyme patients would not still be in the exact same predicament that we have been in for decades.
Yet, despite the fact that Lyme disease is the fastest growing infectious disease in many parts of the world -- reaching epidemic proportions in the US, with cases by far outnumbering those of HIV/AIDS, West Nile virus, swine and avian flu combined domestically -- the disease, especially in its late-stage or chronic form, continues to be downplayed, overlooked and dismissed by much of the US government, including local, regional and federal branches overall.
This in turn carries over to medical professionals and medical professional societies throughout our country. Very few organizations hold the power in relation to Lyme disease, not only in how patients are diagnosed and treated, but also by creating an atmosphere of suspicion and stigma around the disease.
This cloud of negativity that surrounds Lyme even renders effect as far down the ladder as local physicians, whose experience with the disease is often much more extensive and "close to home" than that of any high-ranking government or medical society official.
These physicians are often left between a rock and a hard place when it comes to diagnosis and treatment, restricted by very narrow medical guidelines that are essentially their only "safe" option. To treat outside of these guidelines is often considered tantamount to committing a crime and therefore many local physicians, even those in areas with soaring infection rates, end up treating their patients with the suggested round of antibiotics or risk losing their medical licences or worse their careers.
"The Committee recommends that the NIH improve its communication across Institutes in order to better coordinate Lyme disease research and outreach to public and private scientists with the goal of stimulating research interest in this field. The NIH is encouraged to include a broad range of scientific viewpoints in the process of planning and executing these efforts, including community-based clinicians with extensive experience in treating these patients, voluntary agencies who have advocacy in their mission, and patient advocates."
Why is this happening? Well, here's a brief explanation: Despite repeated Appropriations directives, our government relies solely on the Centers for Disease Control and Prevention (CDC) for its Lyme disease data. In turn, the CDC relies solely on a small committee at the privately funded non-profit Infectious Diseases Society of America (IDSA), where conflicts of interests abound and disinformation about Lyme disease is regularly disseminated to the media, general public, and to the medical arms of other countries.
As a result of this "trickle-down" effect the American public and much of the rest of the world has been educated for decades largely via myths and misinformation, leading to many more infections, extensive suffering and billions of dollars of taxpayer money wasted on a disease that, with proper intervention and care, is entirely treatable and even preventable!
"The CDC is encouraged to include a broad range of scientific viewpoints in the process of planning and executing their efforts. This means including community-based clinicians with extensive experience in treating these patients, voluntary agencies who have advocacy in their mission, and patient advocates in planning committees, meetings, and outreach."
Those with Lyme disease, especially the chronic form, must battle:
- a misinformed and oftentimes outright hostile medical community where patients are often confronted by doubt, suspicion or even mistreatment, including being sent home from the ER for a health crisis that would usually lead to tests and possibly observation/admission for the general public;
- social stigma, even from family and friends, due to the heavy influence of misinformation on the public;
- a National Institutes of Health (NIH) that is uninformed about the most constructive research funding paths and allocations;
- a Social Security Administration (SSA) that has little understanding of the severity and complexities of this disease and its many manifestations and to this day does not have a Listing nor a Ruling for Lyme disease in its official "Blue Book";
- an insurance industry all too eager to deny that our disease exists;
- teaching hospitals, universities and medical institutions that are disseminating outdated and highly inaccurate information;
- a pharmaceutical industry that has not turned out any viable treatments nor FDA-approved testing methods in decades for our condition.
What could have been a manageable disease, if those in charge had done the right thing from the very beginning, has now become a massive tragedy that continues to be ignored and is only getting worse as time goes on. It is an ever-present example of the failure of our medical system and the severe lack of compassion that both it and the insurance industry suffer from.
As you can imagine, all of this combined (and more) has led to extremely dire consequences for patients, particularly for those suffering from the chronic form of the disease. Long-term disabilities, strained relationships with loved ones, loss of employment, bankruptcy, poor quality of life, loss of dignity, and even death either due to the disease itself or by suicide -- all causes of demise and fatality among Lyme patients.
“The Committee understands that some patients with Lyme disease and other tick-borne disorders have encountered some difficulty when applying for assistance through SSA offices, due to SSA employees' unfamiliarity with these illnesses. SSA is encouraged to work on developing educational materials for SSA employees to facilitate a better understanding of the potential debilitating effects of these disorders. The Committee suggests that SSA collaborate with clinicians who have expertise on the multi-system chronic effects of Lyme, as well as patient and voluntary communities, to accomplish this goal."
Demographics: Often referred to as a regional infection, Lyme is no longer confined to specific geographical areas and is now found throughout the United States, Canada, Europe and elsewhere globally. Up until 2013 the CDC officially only acknowledged that there were 30,000 annual new infections, however the CDC now estimates that there are 300,000 or more new infections occurring annually. This is also likely a small fraction of the true total, as not all cases are officially reported to and by the CDC per year -- the probable true amount of patients going misdiagnosed or without a diagnosis at all is frightening.
Vector-borne diseases like Lyme disease affect individuals from all walks of life and all ages, from children to the elderly, and in the current environment surrounding vector-borne diseases, it's also possible for anyone to become debilitated by this dreadful disease. There is no “example“ or “type“ of person that becomes infected.
Unacceptable Diagnostic and Treatment Guidelines: One of the greatest detriments to any Lyme patients' survival is the IDSA's Lyme Disease Diagnostic and Treatment Guidelines, written in 2006 by an IDSA committee and adopted by the CDC. Although these guidelines were reevaluated in 2009 due to allegations of conflicts of interest within the guideline committee, such as working as consultants for insurance companies, holding patents on Lyme-related products and having a financial interest in Lyme disease, no changes were made despite the review board making multiple suggestions.
Currently, many of the IDSA Lyme disease committee members make their rounds throughout the country, testifying against medical professionals who dare to treat chronic Lyme patients. What does that tell you about where exactly the IDSA's interest lies?
These dangerously inaccurate medical guidelines state that there is no possibility for the existence of a chronic persistent Lyme infection, blaming Post-Lyme Syndrome (PLS) in many cases, suggesting that the continuation of symptoms post-treatment is the result of an autoimmune reaction following infection. They also state that long-term antibiotic treatment is not advised, despite much evidence to the contrary including findings from studies that validate the possibility of persistent infection such as the Barthold mouse study and the Embers monkey study, both of which the IDSA has chosen to ignore.
Due to these profit-driven and politically-motivated guidelines, insurance companies have been given free rein to deny coverage for the treatment of Lyme disease and it’s various co-infections, frequently citing long-term or uncommon treatments as experimental or not necessary. This limited idea of treatment also carries over to state departments of health, whose educational resources frequently stick to the same set of outdated and inaccurate information followed by insurance companies and the medical societies who write these guidelines.
Many patients are forced to pay for treatment out-of-pocket, which can range from a few hundred dollars to tens of thousands of dollars per month, depending on what the patient is able to afford.
Ask any Lyme patient what she or he considers to be the most critical tool for recovery, and they will likely respond, "MONEY, and lots of it." This aspect of the disease has gotten so bad that Lyme disease is cynically discussed by its victims as a disease best suited for the rich, because if you do not have endless amounts of money, you are essentially out of luck.
This is not a new however. Lyme disease has been the subject of controversy since it was first "discovered" in the US, with a consistent monopoly of resources and funding being held by a select group of individuals and organizations including the IDSA, CDC and the National Institutes for Health (NIH), among others, who have abused their status as authorities in the fields of science and medicine for the sake of profit rather than for the benefit of the American people.
"The Committee recognizes that the current state of laboratory testing for Lyme disease is very poor. The situation has led many people to be misdiagnosed and delayed proper treatment.”
Testing and Diagnosis: Though more highly accurate testing methods exist, the use of these tests is adamantly discouraged and most are not covered by insurance. Currently, our government, via the CDC, only approves of one testing method and instructs medical professionals to use only this "official" method, known as the two-tier testing system. This highly inaccurate system has been shown time and time again through research to miss most true cases of Lyme disease. This two-tier test, which has remained unchanged for over 30 years, combined with the CDC's very narrow surveillance criteria that is mistakenly used to rule out Lyme disease as a diagnosis, are tragically failing to detect the majority of cases of Lyme disease in the US.
"The Committee is distressed in hearing of the widespread misuse of the current Lyme disease surveillance case definition."
Treatment: Due to Lyme disease denialism at very high levels of power, decades upon decades after the disease was first recognized, we find ourselves with next to no new research into viable treatments and those who are passionately researching the disease struggling to get whatever funding they can.
Thus, Lyme disease victims have a paucity of treatment options. The standard treatment remains at only three to four weeks of antibiotics for an infection that is akin to syphilis and tuberculosis, both well-known to require months, if not years, of antibiotic therapy. And this treatment, for the most part, is applied across the board to those with acute, early onset Lyme disease as well as those with severe, chronic Lyme disease. Subsequently, treatment failure for Lyme disease in all of its stages is the norm.
If symptoms persist after the short course of antibiotics, patients are frequently told that Lyme disease is no longer a possibility or that they never had it in the first place. It is also not uncommon for patients to be told that their illness and its symptoms are “all in their head”, that they might be better off seeking the guidance of a mental health professional. This can even occur with patients who have blood work positive for Lyme by CDC standards.
It’s as if we are expected to believe that Lyme disease will suddenly disappear when the last day of a prescribed antibiotic arrives. The mere fact that a person can be diagnosed through labs and clinical means and then just weeks later be told they never had the disease or did but don't anymore and suddenly have a psychiatric disorder is sickening and completely illogical!
I have never seen a disease where such a cookie-cutter approach to patient care is considered acceptable. It’s gravely disturbing that such close-mindedness is even possible or allowed to continue.
Misdiagnoses: Many Lyme disease patients endure years of medical misdiagnoses before receiving a proper diagnosis of infection with borrelia (the bacterium that causes Lyme disease) and the many co-infections that frequently travel with borrelia. In fact, years and years of misdiagnoses are how so many individuals end up with the chronic/late-stage form of the disease, which the CDC and IDSA continue to deny exists.
You see, the quicker that you diagnose and treat the infection, the more likely there will be remission of symptoms. But medical professionals, who take their directives from the CDC (and thus the IDSA), are taught to: 1) not look for the infection 2) use the inaccurate two-tier test that misses most cases 3) downplay the seriousness of the infection should someone be "lucky" enough to turn up positive 4) inadequately treat the infection (or fear prosecution).
So, you can see how, under the current US system, one has a far greater chance of winning the lottery than obtaining a positive Lyme disease diagnosis and receiving adequate, effective treatment from the start. How can this be?
Lyme disease is very frequently misdiagnosed in patients for decades with dubious, idiopathic "syndromes," many with far less obvious diagnostic markers than Lyme disease, leaving the infection untreated for so long that the prognosis is devastatingly grim.
Lyme disease misdiagnoses consist of a variety of other illnesses such as Alzheimer's disease, autism, chronic fatigue syndrome (CFS), fibromyalgia syndrome (FMS), irritable bowel syndrome (IBS), interstitial cystitis (IC), Lou Gehrig’s disease (ALS), lupus, multiple sclerosis (MS), panic attacks, and Parkinson's disease, to name but a few (there are over 300 more that imitate Lyme).
These various misdiagnoses are extremely dangerous and represent how one can easily end up with chronic Lyme disease due to them. This is especially true when a number of the treatments for the diseases that Lyme can imitate are actually highly detrimental to someone with Lyme disease, in many cases adversely effecting the immune system and therefore allowing the borrelia bacteria to thrive even more.
Bullying/Smear Campaigns: To make matters worse, the IDSA has continually run smear campaigns against Lyme disease activists and advocacy groups, attempting to tarnish their credibility by making outrageous claims and bogus statements, such as referring to Lyme advocates as “anti-science zealots” in a 2011 science journal article or more recently as "a counterculture movement that disagrees with everything about mainstream medicine and science" -- just two examples of their continued bullying.
Why exactly is our government relying on information from a privately funded nonprofit organization that harbors so much animosity towards a patient group that its members have taken to a myriad of smear campaigns and bullying tactics to work against them? Why also is it considered ethical that a privately funded non-profit is the driving source of information for a taxpayer funded government organization such as the CDC?
These highly unprofessional and damaging behaviors are occurring with more frequency and regularity, and are likely due to a growing awareness of chronic Lyme disease and the surrounding controversy, largely pioneered through grassroots activism along with state and federal legislation victories on multiple fronts. What was once a controversy shrouded in silence is now becoming a vocal public movement fighting for patient equality, better education and awareness of vector-borne diseases nationwide and increased funding for research, while targeting change of the current IDSA Lyme guidelines to be more inclusive of all the available scientific evidence (or to eliminate them altogether and start anew).
Persecution of Physicians: The medical professionals who choose to treat chronic Lyme disease, oftentimes referred to as Lyme Literate Medical Doctors (LLMDs), are also regularly persecuted merely for defying guidelines they find to be outdated and useless. These individuals frequently face harassment and legal action, resulting in loss of licensure, destruction of their careers and their lives being left in financial ruin.
Taking into consideration all of the above, it should be obvious that a great change must happen -- a Lyme disease medical paradigm shift -- as the picture of the modern medical establishment that the IDSA and it’s brethren have painted is one of an appalling misuse of power, greed and a complete lack of care for the quality of life of our nation’s sick and disabled. It is a travesty beyond description that such a debilitating, life-destroying disease has been allowed to be overlooked, passed over, neglected, lied about and ignored for this long.
Please bring attention to this issue and let the truth about Lyme disease be known. It’s time that those in power realize that the whole world is watching!
Sincerely,
Letters for Lyme: Worldwide Awareness!!
http://www.lettersforlymeproject.blogspot.com
“The Committee understands that some patients with Lyme disease and other tick-borne disorders have encountered some difficulty when applying for assistance through SSA offices, due to SSA employees' unfamiliarity with these illnesses. SSA is encouraged to work on developing educational materials for SSA employees to facilitate a better understanding of the potential debilitating effects of these disorders. The Committee suggests that SSA collaborate with clinicians who have expertise on the multi-system chronic effects of Lyme, as well as patient and voluntary communities, to accomplish this goal."
Demographics: Often referred to as a regional infection, Lyme is no longer confined to specific geographical areas and is now found throughout the United States, Canada, Europe and elsewhere globally. Up until 2013 the CDC officially only acknowledged that there were 30,000 annual new infections, however the CDC now estimates that there are 300,000 or more new infections occurring annually. This is also likely a small fraction of the true total, as not all cases are officially reported to and by the CDC per year -- the probable true amount of patients going misdiagnosed or without a diagnosis at all is frightening.
Vector-borne diseases like Lyme disease affect individuals from all walks of life and all ages, from children to the elderly, and in the current environment surrounding vector-borne diseases, it's also possible for anyone to become debilitated by this dreadful disease. There is no “example“ or “type“ of person that becomes infected.
Unacceptable Diagnostic and Treatment Guidelines: One of the greatest detriments to any Lyme patients' survival is the IDSA's Lyme Disease Diagnostic and Treatment Guidelines, written in 2006 by an IDSA committee and adopted by the CDC. Although these guidelines were reevaluated in 2009 due to allegations of conflicts of interest within the guideline committee, such as working as consultants for insurance companies, holding patents on Lyme-related products and having a financial interest in Lyme disease, no changes were made despite the review board making multiple suggestions.
Currently, many of the IDSA Lyme disease committee members make their rounds throughout the country, testifying against medical professionals who dare to treat chronic Lyme patients. What does that tell you about where exactly the IDSA's interest lies?
These dangerously inaccurate medical guidelines state that there is no possibility for the existence of a chronic persistent Lyme infection, blaming Post-Lyme Syndrome (PLS) in many cases, suggesting that the continuation of symptoms post-treatment is the result of an autoimmune reaction following infection. They also state that long-term antibiotic treatment is not advised, despite much evidence to the contrary including findings from studies that validate the possibility of persistent infection such as the Barthold mouse study and the Embers monkey study, both of which the IDSA has chosen to ignore.
Due to these profit-driven and politically-motivated guidelines, insurance companies have been given free rein to deny coverage for the treatment of Lyme disease and it’s various co-infections, frequently citing long-term or uncommon treatments as experimental or not necessary. This limited idea of treatment also carries over to state departments of health, whose educational resources frequently stick to the same set of outdated and inaccurate information followed by insurance companies and the medical societies who write these guidelines.
Many patients are forced to pay for treatment out-of-pocket, which can range from a few hundred dollars to tens of thousands of dollars per month, depending on what the patient is able to afford.
Ask any Lyme patient what she or he considers to be the most critical tool for recovery, and they will likely respond, "MONEY, and lots of it." This aspect of the disease has gotten so bad that Lyme disease is cynically discussed by its victims as a disease best suited for the rich, because if you do not have endless amounts of money, you are essentially out of luck.
This is not a new however. Lyme disease has been the subject of controversy since it was first "discovered" in the US, with a consistent monopoly of resources and funding being held by a select group of individuals and organizations including the IDSA, CDC and the National Institutes for Health (NIH), among others, who have abused their status as authorities in the fields of science and medicine for the sake of profit rather than for the benefit of the American people.
"The Committee recognizes that the current state of laboratory testing for Lyme disease is very poor. The situation has led many people to be misdiagnosed and delayed proper treatment.”
Testing and Diagnosis: Though more highly accurate testing methods exist, the use of these tests is adamantly discouraged and most are not covered by insurance. Currently, our government, via the CDC, only approves of one testing method and instructs medical professionals to use only this "official" method, known as the two-tier testing system. This highly inaccurate system has been shown time and time again through research to miss most true cases of Lyme disease. This two-tier test, which has remained unchanged for over 30 years, combined with the CDC's very narrow surveillance criteria that is mistakenly used to rule out Lyme disease as a diagnosis, are tragically failing to detect the majority of cases of Lyme disease in the US.
"The Committee is distressed in hearing of the widespread misuse of the current Lyme disease surveillance case definition."
Treatment: Due to Lyme disease denialism at very high levels of power, decades upon decades after the disease was first recognized, we find ourselves with next to no new research into viable treatments and those who are passionately researching the disease struggling to get whatever funding they can.
Thus, Lyme disease victims have a paucity of treatment options. The standard treatment remains at only three to four weeks of antibiotics for an infection that is akin to syphilis and tuberculosis, both well-known to require months, if not years, of antibiotic therapy. And this treatment, for the most part, is applied across the board to those with acute, early onset Lyme disease as well as those with severe, chronic Lyme disease. Subsequently, treatment failure for Lyme disease in all of its stages is the norm.
If symptoms persist after the short course of antibiotics, patients are frequently told that Lyme disease is no longer a possibility or that they never had it in the first place. It is also not uncommon for patients to be told that their illness and its symptoms are “all in their head”, that they might be better off seeking the guidance of a mental health professional. This can even occur with patients who have blood work positive for Lyme by CDC standards.
It’s as if we are expected to believe that Lyme disease will suddenly disappear when the last day of a prescribed antibiotic arrives. The mere fact that a person can be diagnosed through labs and clinical means and then just weeks later be told they never had the disease or did but don't anymore and suddenly have a psychiatric disorder is sickening and completely illogical!
I have never seen a disease where such a cookie-cutter approach to patient care is considered acceptable. It’s gravely disturbing that such close-mindedness is even possible or allowed to continue.
Misdiagnoses: Many Lyme disease patients endure years of medical misdiagnoses before receiving a proper diagnosis of infection with borrelia (the bacterium that causes Lyme disease) and the many co-infections that frequently travel with borrelia. In fact, years and years of misdiagnoses are how so many individuals end up with the chronic/late-stage form of the disease, which the CDC and IDSA continue to deny exists.
You see, the quicker that you diagnose and treat the infection, the more likely there will be remission of symptoms. But medical professionals, who take their directives from the CDC (and thus the IDSA), are taught to: 1) not look for the infection 2) use the inaccurate two-tier test that misses most cases 3) downplay the seriousness of the infection should someone be "lucky" enough to turn up positive 4) inadequately treat the infection (or fear prosecution).
So, you can see how, under the current US system, one has a far greater chance of winning the lottery than obtaining a positive Lyme disease diagnosis and receiving adequate, effective treatment from the start. How can this be?
Lyme disease is very frequently misdiagnosed in patients for decades with dubious, idiopathic "syndromes," many with far less obvious diagnostic markers than Lyme disease, leaving the infection untreated for so long that the prognosis is devastatingly grim.
Lyme disease misdiagnoses consist of a variety of other illnesses such as Alzheimer's disease, autism, chronic fatigue syndrome (CFS), fibromyalgia syndrome (FMS), irritable bowel syndrome (IBS), interstitial cystitis (IC), Lou Gehrig’s disease (ALS), lupus, multiple sclerosis (MS), panic attacks, and Parkinson's disease, to name but a few (there are over 300 more that imitate Lyme).
These various misdiagnoses are extremely dangerous and represent how one can easily end up with chronic Lyme disease due to them. This is especially true when a number of the treatments for the diseases that Lyme can imitate are actually highly detrimental to someone with Lyme disease, in many cases adversely effecting the immune system and therefore allowing the borrelia bacteria to thrive even more.
Bullying/Smear Campaigns: To make matters worse, the IDSA has continually run smear campaigns against Lyme disease activists and advocacy groups, attempting to tarnish their credibility by making outrageous claims and bogus statements, such as referring to Lyme advocates as “anti-science zealots” in a 2011 science journal article or more recently as "a counterculture movement that disagrees with everything about mainstream medicine and science" -- just two examples of their continued bullying.
Why exactly is our government relying on information from a privately funded nonprofit organization that harbors so much animosity towards a patient group that its members have taken to a myriad of smear campaigns and bullying tactics to work against them? Why also is it considered ethical that a privately funded non-profit is the driving source of information for a taxpayer funded government organization such as the CDC?
These highly unprofessional and damaging behaviors are occurring with more frequency and regularity, and are likely due to a growing awareness of chronic Lyme disease and the surrounding controversy, largely pioneered through grassroots activism along with state and federal legislation victories on multiple fronts. What was once a controversy shrouded in silence is now becoming a vocal public movement fighting for patient equality, better education and awareness of vector-borne diseases nationwide and increased funding for research, while targeting change of the current IDSA Lyme guidelines to be more inclusive of all the available scientific evidence (or to eliminate them altogether and start anew).
Persecution of Physicians: The medical professionals who choose to treat chronic Lyme disease, oftentimes referred to as Lyme Literate Medical Doctors (LLMDs), are also regularly persecuted merely for defying guidelines they find to be outdated and useless. These individuals frequently face harassment and legal action, resulting in loss of licensure, destruction of their careers and their lives being left in financial ruin.
Taking into consideration all of the above, it should be obvious that a great change must happen -- a Lyme disease medical paradigm shift -- as the picture of the modern medical establishment that the IDSA and it’s brethren have painted is one of an appalling misuse of power, greed and a complete lack of care for the quality of life of our nation’s sick and disabled. It is a travesty beyond description that such a debilitating, life-destroying disease has been allowed to be overlooked, passed over, neglected, lied about and ignored for this long.
Please bring attention to this issue and let the truth about Lyme disease be known. It’s time that those in power realize that the whole world is watching!
Sincerely,
Letters for Lyme: Worldwide Awareness!!
http://www.lettersforlymeproject.blogspot.com
