Great Overview on TBD and the problems with dx and tmt

Lyme Disease Education and Support Groups of Maryland

AfterTheBite@gmail.com

Press Release

 MAY IS LYME DISEASE AWARENESS MONTH  

April 2008- As the number of ticks and people exposed to Lyme and other diseases increase, the number of reported cases continue to reflect only a small portion of the actual cases occurring in Maryland.
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.

New York Medical College reported 30% of Lyme patients previously treated with standard antibiotic courses continued to experience fibromyalgia symptoms and 13% experienced symptoms of chronic fatigue syndrome.  An additional 43% reported similar symptoms.  Nearly all patients reported decreased memory or concentration problems, which was confirmed by testing.

Studies indicate the Lyme disease bacterium has the ability to enter the brain less than 24 hours after a tick bite.  It is often referred to as the “great imitator,” because it can mimic lupus, arthritis, MS, fibromyalgia, dementia, ALS, chronic fatigue, auto-immune disorders, Parkinson’s, Alzheimer’s and even autism.
Animal studies indicate in less than a week Lyme disease spirochetes (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. 
Viable Lyme disease spirochetes have been discovered “hiding” in and around human connective tissue (ligaments and tendons) during biopsies, indicating despite antibiotic therapy, patients can progress to a chronic stage and experience multiple and often debilitating symptoms.
In humans, Lyme disease can be responsible for a host of early symptoms such as severe headaches, debilitating fatigue, fever, joint and muscle pain, and skin rashes.  Late stage infection can lead to chronic problems and can negatively affect the brain, heart and muscular-skeletal systems.  Symptoms vary for each individual patient, and also vary in intensity over the course of the disease.  The late stages have been described as being equivalent to experiencing moderate cognitive impairment, combined with a level of physical dysfunction similar to patients with congestive heart failure; and fatigue comparable to patients with multiple sclerosis. 
On average, patients in one major study with chronic Lyme disease had symptoms for 1.2 years before being correctly diagnosed, with some having debilitating symptoms for ten or more years prior to receiving a proper diagnosis.  At the highest risk of acquiring this serious disease are children, ages 5-14.
According to the CDC, as many as 63% of Lyme patients in Maryland had no known tick bite and approximately half reported not having the classic “bulls-eye” rash.  More than 50% developed serious brain or central nervous system involvement, many requiring hospitalization.  Over 40% of Lyme patients in Maryland reported arthritic symptoms, such as painful joint swelling. 
Evidence of Lyme spirochetes 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.
The Kicker
According to a 2005 study from Johns Hopkins, Lyme tests can miss 75% of the people infected with Borrelia burgdorferi (Lyme disease).  Maryland patients spend approximately $3,000,000.00 per year on these inaccurate Lyme tests which are actively promoted and recommended by the IDSA guideline authors and followers by way of the IDSA guidelines and various articles.  To compound the problem, results of these tests are often used improperly by physicians and insurance companies in determining if a patient has Lyme and if they should or should not receive treatment.  There is no test for Lyme that can determine if a patient has been cured.  Lyme is considered to be a “clinical diagnosis” and according to the CDC, the diagnosis is not to be ruled out because of a negative test.
The highly contested Infectious Diseases Society of America (IDSA) Lyme disease treatment guidelines recommend patients have not one, but two positive Lyme tests.  Insurance companies routinely use the guidelines as a basis to deny reimbursement for treatment if tests are negative.  Both Paul Auwaerter, MD, Clinical Director, Division of Infectious Diseases, Johns Hopkins University School of Medicine, who provides testimony in medical malpractice cases related to Lyme disease and J. Stephen Dumler, Professor, Department of Pathology at Johns Hopkins co-authored the 2005 Hopkin’s study proving Lyme tests were “unreliable” and also were authors and/or editors of the IDSA guidelines recommending patients have not one positive test in order to obtain treatment, but two of these faulty tests be positive.
In May 2008, CT Attorney General, Richard Blumenthal, concluded a lengthy investigation of the IDSA guidelines development process.  Blumenthal stated in his press release, "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.” He uncovered what he contends are serious flaws, and as a result a new IDSA selected panel will review the guidelines under the watchful eye of an outside arbiter.  The IDSA authors involved in the conflict of interest and anti-trust investigation, several hailing from Johns Hopkins, will no longer be able to sit on the guidelines panel to make decisions which can affect the welfare of patients.
This same small medical society and its followers continue to manipulate the majority of the research funding to the exclusion of others and contact state and federal legislators objecting to bills designed to improve the Lyme disease patient’s plight.  They have gone so far as to insist, after spending millions of research dollars documenting it’s existence and despite a preponderance of evidence proving otherwise, that there is no such thing as “chronic Lyme disease.”  One simply has to do a PubMed search to note there are over 800 scientific articles discussing “chronic Lyme” disease, many authored by these same people.  If that is too difficult, one simply needs to look at the growing number of people suffering.
Ticks and The Diseases They Carry
During a CDC funded study conducted at 21 sites in nine different states, 1,799 ticks were collected and tested for the presence of Lyme disease (Bb).  An astounding 81% of the ticks from one of the Maryland sites were infected with Lyme disease.  There were a higher number of infected ticks in Maryland than at any other site in the United States, including what were thought to be the most endemic counties in NY, CT, PA and NJ.  The rate of Lyme infected ticks in Maryland ten years ago was two times higher than the national average and at least 10 Borrelia clones have been known to infect a single tick.
A more recent study indicates the number of infected nymph ticks is growing.  These tiny terrors are sometimes infected with three or more infectious agents, some of which still have not been identified or categorized.
Over 300 strains of Lyme (Bb) 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. 
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.
Treatment Considerations
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 are from reports from the CDC, FDA, NIH, International Lyme and Associated Disease Society (ILADS), Lyme Disease Association (LDA), Yale, Johns Hopkins, National Library of Medicine and the Maryland Department of Health and Mental Hygiene (DHMH).