MAYDAY 2011 Lyme Underworld
Destroy the MYTHS & Get the FACTS! MYTH: Lyme disease is hard to catch and easy to cure, does not exist or is extremely rare. FACT: Lyme disease is the fastest growing infectious disease in the US. It is more prevalent today than HIV/AIDS, West Nile Virus, and Swine flu, combined. It is in our blood banks across the US and the Centers for Disease Control (CDC) is aware of this. Those treated with the standard 10‐21 day CDC protocol of doxycycline (an antibiotic) are unable to donate blood or organs after having been “cured” of Lyme disease. Are there any precautions in place to ensure this does not happen? MYTH: Lyme disease consists of a swollen knee and a bull’s eye rash. FACT: While those can be two of the components, Lyme is widely known as “The Great Imitator” for its ability to manifest symptomatically as over 350 different diseases. Lyme can affect every bodily system, from the skin to internal organs, including the brain. Lyme symptoms can wax and wane, travel from one part of the body to another over a short period of time, and vary greatly from person to person. Someone with Lyme may not always look sick, but there is a war raging inside ‐‐ an invisible illness wreaking havoc on one’s body. MYTH: Lyme should not be considered as a possible diagnosis when a patient presents with a litany of chronic symptoms. FACT: The medical establishment refuses to acknowledge, test for, or treat chronic Lyme disease, but willingly diagnoses and treats the symptoms that it creates: chronic fatigue syndrome (CFS), fibromyalgia, amyotrophic lateral sclerosis (ALS/Lou Gehrig's Disease), multiple sclerosis (MS), Parkinson’s, multiple psychiatric conditions, epilepsy, autism, dementia, rheumatoid arthritis (RA), Alzheimer’s, Epstein‐Barr, and a host of other “conditions” of “unknown cause or cure,” ultimately masking the true underlining cause, denying treatment that could save lives. MYTH: Lyme disease does not kill people. FACT: Lyme has, and continues to be a cause of death in this country and globally. There are death certificates in multiple states around the US that list the main or secondary cause of death as Lyme disease. Also, when you take into account deaths that occur via the myriad other conditions (listed above) that are misdiagnosed as Lyme, the death toll grows significantly. Conversely, deaths occur as a result of Lyme diagnosed as one of 350 other diseases and subsequently mistreated, undertreated, or simply not treated for Lyme. In addition, suicides, sadly, are very much a reality of Lyme disease. MYTH: You can trust your medical community to be up‐to‐date about Lyme disease. FACT: The majorities of medical professionals in the US are clueless about Lyme, especially chronic Lyme, and/or have been mis‐educated about it. The current testing protocol promoted by the CDC, which misses the majority of cases, hinders progress in diagnosis and treatment, leading to more debilitating disease. This protocol has not been updated in approximately 30 years, leaving the nearly 300 different strains of Lyme and a multitude of co‐ infections undetected and leaving patients to battle continued illness and relapses.
MYTH: The CDC’s standard Lyme testing is accurate and adequate. FACT: Patients are often told that their lab tests are negative or false‐positive due to the amount of antibodies not meeting the required CDC standard. According to the CDC, a small concentration of Lyme antibodies found in the blood does not mean that you are infected with Lyme. Would you have a small amount of HIV antibodies without being HIV positive? NO! MYTH: They’re the Infectious Disease Society of America (IDSA). Surely, they know what they are doing and can be trusted. FACT: The IDSA continues to deny the existence of chronic Lyme and refuses to take proven scientific data into account that would save the lives of thousands each year. Admitting that its diagnostic and treatment protocols are inaccurate and out‐of‐date (and deadly), would force the IDSA to change its guidelines and force insurance companies to cover the costs of necessary and lifesaving treatments. Moreover, the ISDA is riddled with conflicts of interest that have caused several State and Federal investigations. MYTH: Lyme is an inexpensive disease to treat. FACT: If not recognized and treated in its very early stages, Lyme disease can become chronic and require months or years of treatment. Due to the IDSA's vague and poorly conceived guidelines, people with chronic Lyme are forced to seek out Lyme‐literate medical doctors (LLMDs) who specialize in treating Lyme. More often than not, patients must pay out‐of‐pocket for these doctors’ expertise. The annual cost to treat one person with Lyme can soar into the tens to hundreds of thousands of dollars. For many families with multiple members stricken by Lyme, it is a decision of who will receive treatment based on the severity of symptoms. No parent should have to make such a choice. MYTH: It has been proven that Lyme disease is not sexually transmittable. FACT: While more investigation in this area is needed, the bacterium that causes Lyme disease is a type of spirochete, similar to syphilis, which is a known sexually transmitted disease. Both diseases morph into various forms to evade attack by the immune system and/or antibiotics. They both may remain dormant in their human host for years at a time, and both can be found in bodily fluids. Anecdotally, both Lyme patients and LLMDs have reported this possible connection. MYTH: Lyme disease cannot be transmitted congenitally. FACT: Many so‐called Lyme "experts" state that congenital Lyme disease doesn’t exist, ignoring the scientific evidence that it's presence has been found in the umbilical cords of miscarried babies and that of babies born at full‐term. This even occurs in instances of “cured" Lyme patients, as deemed by the IDSA guidelines. Again, anecdotally, both Lyme patients and LLMDs have reported this possible connection. Just like those with HIV/AIDS who were forced to battle scrutiny and persecution over two decades ago, it is the same for those suffering from the various stages of Lyme disease now ‐‐ a constant war for the right to diagnosis and treatment. As humans we deserve the right to proper, necessary, and many times life‐saving medical care that we are currently denied. Lyme is not mythological and neither are the people that endure its endless pain, inexplicable politics, and medical apathy. The fact is that Lyme disease reform is LONG OVERDUE . . . and begins with YOU. Copyright©Lyme Underworld, 5‐2011