FLORIDA LYME DISEASE FACT SHEET- 2012
A Growing Epidemic
The CDC states Lyme disease is vastly underreported, with only 10% of cases that meet its surveillance criteria being recorded. This translates into more than a quarter of a million (250,000) new cases of Lyme disease in the USA each year.
The CDC reported that cases of Lyme disease in Florida climbed 140% in one year (2007-2008).
Using the CDC’s 10-fold assessment, over 10,400 residents have already contracted Lyme in Florida, making it the fastest growing vector borne disease in the state.
Based on current reporting statistics and CDC 10-fold assessments, approximately 2 people are contracting Lyme disease in Florida each day. They will not be adequately treated in the early stages, if at all. Of those treated in the early stages with the standard 2-4 weeks of antibiotics, up to 40 percent can be expected to relapse and will require re-treatment. In Florida it is rare that patients are properly diagnosed and adequately treated. Most patients must travel out-of- state to find knowledgeable physicians to provide medical care.
Lyme Disease- Not Just a Rash and a Swollen Knee
"In summary, patients with chronic musculoskeletal pain, neurocognitive symptoms, or both that persist after antibiotic treatment for well-documented Lyme disease have considerable impairment in their health-related quality of life." Klempner, NEJM 2001 study http://content.nejm.org/cgi/content/full/345/2/85
The Lyme disease bacterium has the ability to enter the brain less than 24 hours after a tick bite. It is called the “great imitator,” because it can mimic fibromyalgia, MS, chronic fatigue syndrome, lupus, arthritis, dementia, ALS, Parkinson’s, Alzheimer’s and even autism.
Animal studies indicate in less than a week the Lyme spirochete (Borrelia burgdorferi) can be deeply embedded inside tendons, muscles, tissues, the heart and the brain. As the spirochetes invade tissues they replicate, then destroy their host cell as they emerge. The cell wall can collapse around the bacterium, forming a cloaking device, allowing it to evade detection by many tests and by the body’s own immune system.
In humans, infection with the Lyme disease bacteria can lead to early symptoms such as severe headaches, debilitating fatigue, fever, joint and muscle pain, and skin rashes. Late stage infection can lead to problems related to the central nervous system and can negatively affect the brain, heart and muscular-skeletal system. Symptoms of Lyme disease vary for each individual patient, and also vary in intensity over the course of the disease. The late stages have been described in studies as being equivalent to having moderate cognitive impairment, combined with a level of physical dysfunction comparable to patients with congestive heart failure; and fatigue comparable to patients with multiple sclerosis.
On average, patients with chronic Lyme disease had symptoms for 1.2 years before being correctly diagnosed, with some having debilitating symptoms for ten or more years before they received a proper diagnosis. At the highest risk of acquiring this serious disease are children, ages 5-14.
The spirochetes that cause Lyme disease (related to syphilis) have been detected in breast milk, umbilical cords, the uterus, semen, urine, blood, the cervix, tears, the brain, and other body fluids and tissues. Often entire families are found to be infected. In a recent study of children with Lyme disease, researchers noted that an average of four doctors were seen before a proper diagnosis was made.
According to a recent study from Johns Hopkins, Lyme tests miss 75% of the people who are infected with Borrelia burgdorferi (Lyme disease). Additional medical literature indicates up to 90% of patients are missed.
Millions of dollars are spent each year on inaccurate Lyme tests. To compound the problem, results of these tests are often used improperly by physicians in determining if a patient has Lyme and should or should not receive treatment. STARI- Southern Tick Associated Rash Illness, caused by another strain of Borrelia in the south, is not able to be detected on standard Lyme tests, leaving many people undiagnosed or misdiagnosed.
The outdated and ineffective Infectious Diseases Society of America (IDSA) Lyme disease treatment guidelines (favored by insurance companies) recommend that patients should have not one, but two positive Lyme tests before receiving treatment. Insurance companies routinely use those guidelines as a basis to deny reimbursement for treatment.
CT Attorney General, Richard Blumenthal, recently concluded a lengthy investigation of the IDSA guidelines development process. He uncovered serious flaws in the guidelines and currently a new panel is reviewing them with the assistance of an outside arbiter. Blumenthal stated in his press release in May 2008, "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.”
Ticks and The Diseases They Carry
Over 300 strains of Lyme disease have been identified to date and the list continues to grow. Tests currently on the market are only designed to detect exposure to one of the Borrelia (Lyme) strains found in humans. In addition, over 20 strains of Babesiosis (a tick borne co-infection) are unable to be detected in humans using standard blood tests.
A newly discovered Borrelia (Lyme-like) organism, STARI (Southern Tick Associated Rash Illness), found in ticks cannot be detected by the current Lyme disease tests. Studies indicate this spirochete is found in 10-20% of ticks studied and there may be other unidentified microbes present. Researchers are advising physicians to change their approach to diagnosis and treatment.
The Lyme disease spirochete (Bb) is pleomorphic, meaning that it can radically change form. This protective measure allows the spirochete to hide and protect itself from the threat of antibiotics. Once the threat is removed, the spirochetes can change forms once again, multiply, continue to do damage, and patients may relapse with varying symptoms.
Cystic forms of Lyme (also called spheroplasts, L-forms, or starvation forms) and their ability to reconvert into normal spirochetes have been demonstrated in Borrelia burgdorferi. The recovery of spheroplasts, L-forms, and other variants of spirochetes have been reported from blood, body fluid, and tissues of humans and animals.
Lyme disease, Babesiosis, Bartonella henselae and quintana (cat scratch fever and trench fever), Rocky Mountain spotted fever, histoplasmosis, Brucellosis, ehrlichiosis, anaplasmosis, Southern Tick Associated Rash Illness (STARI), Tularemia (rabbit fever), Mycoplasma, leptospirosis, parvo B-19 virus and Masters disease are some of the various infections (some which are also are life-threatening) that may be passed to animals or humans through the bite of an infected tick or other vector.
Most health care professionals are not familiar with these infections; therefore, they are not testing, diagnosing, reporting, or treating them. Untreated or under treated patients can quickly advance to late or chronic stages of the diseases. Once reaching the chronic stage, Lyme disease is more expensive, time consuming and more difficult to treat or cure.
Reports are on the rise concerning the death of patients receiving donated blood that contained tick borne disease organisms. The Red Cross admits their storage procedures do not kill the spirochetes that cause Lyme disease, nor do they kill the Babesia organisms. Our nation’s blood supply is not routinely tested for these vector borne infectious diseases, putting many American’s at risk.
The Financial Cost to Society
The long-term cost of Lyme disease to families, school systems, the health care system and the economy is shocking. The average diagnosis and treatment costs and lost wages related to chronic Lyme disease are $61,688.00 per year, per patient. Lyme disease currently costs society about $2 billion per year. This includes unnecessary or inappropriate medical care, lost productivity, and other direct/indirect expenses.
Mothers and fathers are losing their jobs and their homes due to the inability to work and the cost of treatment. Many eventually must apply for disability after failing to get a proper diagnosis and treatment and becoming chronically ill or disabled. The federal and state government is footing the bill for many of the misdiagnosed and chronic cases that slip through the current system and the numbers continue to grow at an alarming rate.
A preponderance of the evidence indicates that active ongoing spirochetal infection is the cause of the persistent symptoms found in chronic Lyme disease patients. Extended antibiotic treatment has been effective in improving the quality of life for many who are chronically ill.
*** The above facts and figures were gleaned from reports by the CDC, FDA, NIH, International Lyme and Associated Disease Society (ILADS), Yale, Johns Hopkins, National Library of Medicine and other sources.
For more information please contact Lucy Barnes- AfterTheBite@gmail.com