Press Release- Tick Tock, Tick Tock, Tick
January 1, 2011. Several decades after it was first described in the literature, the debate over Lyme disease rages on. Camp A is glued to its theory that Lyme is easy to diagnose, easy to cure, and there is no such thing as “chronic Lyme disease”. If patients remain ill after receiving cost-effective treatment protocols, Camp A feels they were misdiagnosed by their doctors- or they’ve surmised patients developed another similar, but unidentifiable condition. Camp A often blames patients if they don’t improve and some think patients must have acquired some sort of mental illness from their tick bite, one that makes them “think” they are sick. When additional treatment is provided and the patients actually recover, Camp A refers to that phenomenon as a placebo affect, where mixed-up, delusional patients just “think” they are better.
Camp A contends additional antibiotic treatment for a serious infectious disease like Lyme might be “dangerous” and should not be sanctioned; however, prescribing long-term antibiotics for other conditions, such as acne, is acceptable. They have described the sometimes crippling neurologic and arthritic symptoms, heart problems, blindness and cognitive damage chronically ill Lyme patients can experience as no more than the “aches and pains of daily living”, therefore, chronic Lyme disease does not exist. To bring their point home, Camp A recently reviewed over 100 death certificates listing Lyme disease as a cause of death. Without having seen the patients or reviewed their medical charts, they systematically dismissed the official cause of death as Lyme in all but one case in order to substantiate their theory that Lyme disease is “rarely fatal”.
In a continuing attempt to prove Camp A’s theories have merit, lead author of the Infectious Diseases Society of America’s (IDSA) Lyme disease treatment guidelines (Wormser) was recently awarded another $300,000.00 (tax-payers $) to once again study what Camp A refers to as “post-Lyme syndrome”, a condition affecting Lyme patients that looks like Lyme, has symptoms like Lyme, tests positive like Lyme, and responds to antibiotics like Lyme, but according to them, can not be Lyme.
Camp A members still promote the use of their patented Lyme tests in spite of many studies, including their own, indicating up to 75% of patients are being missed. The tests were used as Camp A’s foundation for their failed vaccine and many grant-funded studies over the decades. From these flawed studies Camp A drew “scientific” conclusions, published them and subsequently used their findings to develop what can only be described as problematic, unsuccessful treatment protocols and guideline recommendations.
Chronically ill patients and treating doctors have been subjected to wicked attacks pouring out of Camp A for years. Retaliatory-like efforts intensified shortly after the Attorney General of Connecticut, Richard Blumenthal, launched an investigation into the IDSA guideline development process, costing Camp A much embarrassment, grief and reportedly, a pocket full of money. As part of a settlement agreement, a Review Panel was assembled to re-evaluate the Lyme disease guidelines.
The hand-picked Review Panel (including the IDSA’s past president and members) recommended more than twenty changes be implemented when the next set of guidelines were written (2011). It concluded the authors overstated their position or did not provide adequate documentation for their recommendations. Rather than heed the warnings and make adjustments after being found in part to be “extremely biased” and “riddled with conflicts of interest”, Camp A instead stepped up its efforts to push the same agenda with more pompous, vim and vigor.
Camp B, on the other hand, claims Lyme disease can sometimes be difficult to diagnose since standard tests are unable to accurately detect exposure in the majority of patients and tests can not be used to determine an end-point to treatment or a cure. As official case reports indicate, many patients don’t remember being bitten by a tick and only about half of the people experienced the tell-tale rash. Since ticks carry multiple disease causing pathogens the patient can be infected with parasites, bacteria and viruses, all at one time.
Camp B’s growing collection of science and vast clinical experience has proven Lyme symptoms can range from mild to severe, and can mimic or be mistaken for other conditions such as, fibromyalgia, chronic fatigue, MS, Parkinson’s, ALS, Lupus, depression, auto-immune disorders and arthritis. They contend each patient can present with a unique set of symptoms (based on age, medical history, coinfections, etc) and doctors should decide on an appropriate treatment protocol with that in mind. They believe if a Lyme patient is treated with a minimal course of antibiotics and subsequently relapses with the same or worsening Lyme symptoms, they should be re-evaluated and then, if indicated, be provided additional treatment as would be done if they had any other serious infectious disease or medical condition.
Camp B’s theory is there is no simple one-size-fits-all diagnostic or treatment protocol for those exposed to Lyme and tick borne diseases. If patients are still ill after standard treatment doctors should not have their hands tied by the IDSA’s insurance friendly protocols that are not as “voluntary” as Camp A makes them out to be.
While the two camps continue to duke it out, the growing number of chronically ill patients, some who have been sick for years or even decades, are simply trying to survive the affects of the disease while the brutal Lyme wars rage on.
~~
Contact person- Lucy Barnes
Florida Lyme