here is a disturbing and dangerous dynamic currently playing out in the arena of Lyme Disease treatment policy. In the first few pages of Stephen Buhner‘s new book, Healing Lyme, he talks about the "Lyme wars," which refers not to the battle between your body and Lyme Disease bacteria but, instead, the battle between two factions of the medical community with polar opposite views about what Lyme Disease is and how to treat it. At the center of this conflict is a disagreement about whether the chronic form of Lyme Disease is a real medical condition caused by a dangerous, insidious bacterial infection or a fictional disease resulting from psychological factors and paranoia. Mr. Buhner observes that "the intensity of the conflict has regrettably reached almost religious levels amongst the different proponents ... caught in the crossfire are those with Lyme Disease who are trying to understand what is happening to them and to discover how best to deal with it."
So deep and polarizing is the disagreement about whether or not chronic Lyme Disease is a real condition that there has come to be a high, insurmountable, dividing wall between parties on either side of the debate. Relations are hostile. Physicians who believe in the existence of chronic Lyme Disease and who are willing to help patients suffering from it are known as Lyme Literate Medical Doctors (LLMDs). LLMDs are compassionate, supportive, and understanding when dealing with chronic Lyme Disease sufferers. They are also willing to prescribe aggressive antibiotic therapy to fight the entrenched bacterial infection. LLMDs are willing to use antibiotic therapy because they observe that, time and time again, chronic Lyme Disease sufferers actually get better with antibiotic therapy. Additionally, LLMDs are aware of the mounting scientific evidence indicating that chronic Lyme Disease is indeed caused by the persistent presence of Lyme Disease bacteria in the body, instead of hypochondria or psychological problems. To an LLMD, such scientific evidence is more than just abstract theory―it is something they observe day-in and day-out in their clinical practices. To Lyme Disease sufferers, LLMDs are heroes, offering the hope of health to the sick and hopeless.
Physicians on the other side of the debate, those who do not recognize the existence of chronic Lyme Disease, see LLMDs as quacks. The vast majority of physicians specializing in infectious disease ascribe to the position that chronic Lyme Disease is "all in your head.” When dealing with chronic Lyme Disease sufferers, doctors of this belief are typically arrogant, condescending, and belittling. They will often refer Lyme Disease sufferers to a psychologist or worse, send them walking out of their offices empty-handed and demoralized. They attribute alleged symptom improvement from antibiotic therapy to the placebo effect.
The beginning years of the debate about chronic Lyme Disease were mostly academic, and physicians on either side of it simply ignored each other and continued practicing medicine to the best of their ability. During this initial time, the government basically stayed out of the argument and allowed room for freedom of medical practice, similar to the freedom enjoyed by doctors of various disciplines who treat cancer in numerous ways.
But lately the stakes have been raised considerably. The last few years have seen many of the nation's Lyme Disease doctors persecuted and even disciplined by state medical boards. This has happened as a significant segment of the governing authorities have, despite glaring and mounting evidence to the contrary, settled into the camp that does not recognize the existence of chronic Lyme Disease as a real medical condition. Hence, almost overnight, physicians who treat chronic Lyme Disease went from being respected and left alone, to being persecuted and disciplined. So adamant have the medical authorities become that some physicians have even lost their licenses, or in less severe cases, been frightened enough to close their doors to Lyme Disease patients.
A new development that has led to even higher stakes in the debate was the recent release of new Lyme Disease treatment guidelines by the Infectious Disease Society of America (IDSA), an organization generally recognized as the authority on infectious disease. These new guidelines have been accepted and implemented by the Centers for Disease Control (CDC). Here is an excerpt from the new guidelines:
There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection [the pathologic agent in Lyme Disease] among patients after receipt of recommended treatment regimens for Lyme Disease. Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic
(greater than 6 months) subjective symptoms after recommended treatment regimens for Lyme Disease (E-I).
These new guidelines threaten your access to therapies which have historically been available at the discretion of licensed physicians. The guidelines have been cause for outrage among Lyme Disease patients, practitioners, and researchers. In fact, the State of Connecticut Attorney General, Richard Blumenthal, has even launched an official investigation into whether the IDSA has violated antitrust laws in setting these guidelines. This investigation may lead to a lawsuit. According to Richard Blumenthal, as quoted in the November 17, 2006 issue of the Hartford Courant, “the new guidelines were set by a panel that essentially locked out competing points of view."
Because of the authority of the IDSA, and the CDC’s adoption of the new guidelines, treatment of chronic Lyme Disease has become more than just controversial—it has become illegal, or at least, questionably legal. What does this mean to you? The result of this recent shift toward persecuting and disciplining LLMDs is that it is becoming increasingly common for Lyme Disease sufferers to be denied the medical care they need.
In the early years of the debate, although many doctors turned chronic Lyme Disease sufferers away, there was always a safe haven to be found in the office of an LLMD. Not so anymore. The safe havens are increasingly in short supply, and in danger of disappearing altogether.
Additionally, well-funded Lyme Disease research is becoming increasingly rare. Ironically, many diseases far less prevalent than Lyme Disease are actually receiving a higher level of funding. As a result, the outlook for breakthroughs in Lyme Disease treatment is rather discouraging.
The current state of affairs with insurance companies does not help the situation—many companies have followed suit behind the regulatory authorities and now deny coverage to chronic Lyme sufferers. Richard Blumenthal notes that “one of the common complaints we've received relates to denials of insurance coverage … it’s a very chilling economic effect."
Admittedly, both sides of the debate have some justification. Because I have personally endured chronic Lyme Disease and benefited tremendously from treating it, and because I have observed many other cases in which the same thing has happened, I reside in the camp that recognizes chronic Lyme Disease as a real condition. My position is further solidified by the plethora of scientific evidence indicating that Lyme Disease bacteria can persist in the body even after antibiotic treatment. However, despite my experiences and despite the available evidence, I can acknowledge that there is in fact a debate taking place, whether I like it or not.
The real question here, however, is not whether or not chronic Lyme Disease exists. That debate will likely still be raging at the time this book is published. The real question is whether or not people should have a right to exercise medical freedom of choice in an area of medicine that is not clearly defined, in the same way that cancer patients have the right to choose which type of treatment to use. Do Americans, living in a country founded on personal freedom and rights, have the right to choose which medical treatments to pursue? The government has answered this question with a resounding “no.” The unproven hypothesis that chronic Lyme Disease is not a real condition has been accepted by the government as proven fact, and it has been decided by the government that you should also accept this unproven position as fact. The government not only believes that you should passively accept their conclusion—they also force you to do this by limiting your access to treatment. This is quite possibly one of the most un-American pronouncements in American history. According to the law, you have a right to freedom of medical choice, yet, according to the law, you cannot exercise that right.
It is a grave error and travesty that the regulatory agencies are attempting to curtail your freedom to choose medical treatment. According to the new IDSA guidelines, future Lyme Disease sufferers will only have access to, and will only be educated about, treatments and resources which are accepted and condoned only by one side of the debate. The mounting scientific evidence supporting the existence of chronic Lyme Disease combined with the overwhelming symptom reduction experienced when it is treated justifies chronic Lyme Disease treatment as a medical freedom which should be available to everyone, as it has been available for decades past.
Unfortunately, despite the efforts of patient activism groups and other voices for the cause, there is nothing to indicate that the government will soon change its stance on this issue. So, sufferers of chronic Lyme Disease have three choices: they can give up and remain sick, fight the uphill battle of attempting to secure treatment in the mainstream medical community, or take matters into their own hands and try to get well on their own.
The latter of these options is the approach this book takes. If the mainstream medical community is unwilling to provide assistance with the treatment of chronic Lyme Disease, we have no choice but to seek treatment elsewhere, on our own. Of course, it is still a valuable use of time to petition the government for a change in treatment policies. Due to the mounting evidence supporting the existence of chronic Lyme Disease, it is probable that the government will change its position eventually. However, in the meantime, sick people still want to get well. Given the desperate, debilitated condition that many chronic Lyme Disease sufferers are in and the constriction of medical freedoms currently taking place, there needs to be an immediate solution that is not dependent on changing government policies. Lyme sufferers must be made aware of both sides of the debate and educated about the full range of treatment options available.
To that end, this book was written. The treatments chosen for this book were selected because of their effectiveness, established by reports from patients using them, and available scientific research. However, a consideration of no less importance was the extent to which they allow patients to remain independent and make their own decisions. Most of the treatments in this book can be used autonomously, without a prescription from a physician, and without the government’s permission. They are affordable with or without insurance. They are convenient and can be used whenever they are needed without advance planning. The therapies can be done at home, and the time and money required to make long trips to treatment clinics and doctors offices is spared. These treatment characteristics allow someone sick with Lyme Disease to still live a relatively normal life during the recovery process, without becoming a slave to doctors appointments, waiting rooms, and large medical bills. Most importantly, the treatments in this book allow you to circumvent the immutable decrees passed down from the medical powers that be. In short, this book presents therapies that you control.
In addition, most of the treatments presented in this book are relatively non-toxic. Although they are on the cutting edge of Lyme Disease research, the known side effects associated with their use are minimal. In fact, in comparison with most pharmaceutical drugs, the treatments in this book have a relatively low level of inherent risk. Many of the approaches presented do not use drugs at all. In the instances where drugs are presented as treatment options, drug doses are kept to a minimum, and breaks are recommended between courses of drugs.
A note of caution is in order to ensure that this message is not misinterpreted. If possible, sick people without medical training should still rely on a licensed physician before using any therapy. A trained doctor is a far better treatment supervisor than a layperson. The services of an LLMD are invaluable to the recovery process. Many LLMDs are still open for business and accept new patients. I am by no means suggesting that treating yourself based on the information in this book is a superior option to receiving professional medical care. However, with the future of LLMDs in question, and your medical freedom under fire, the point here—and the basis of this book—is simply that the final decision about your treatment should be made by you, not the government. This is called freedom. In a country where freedom is the cornerstone of our security and prosperity, this book offers you the freedom to research the available treatments for yourself and make your own decisions rather than blindly relying on what your government says is best for you.
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