27 Lyme warriors battle the IDSA, 7 panelist doctors, and a handful of insurance companies

This week has included some major feats for Lyme patients. A few weeks ago, word got out that a lawsuit was filed by 27 Lyme patients against the Infectious Diseases Society of America, 8 insurance agencies, and 7 IDSA Panelist doctors who all conspired in the denial of treatment and diagnosis of Lyme disease. Yesterday I stumbled upon this court document about the case while on a Lyme news page I follow. https://www.courthousenews.com/…/up…/2017/11/LymeDisease.pdf In the document, it explains there is solid proof these 7 doctors on the board of the Infectious Diseases Society of America have been accepting payment bribes via mail starting 1993 and through today by insurance companies to create a 28-day treatment protocol for Lyme and release testing services/restrictions. This meant Lyme disease became an extraordinarily undertreated, underdiagnosed, and 100% out-of-pocket after 28 days of treatment – and we need years of it. The entire IDSA panel is made of doctors that were paid to create the 28-day treatment protocol and essentially pull articles out of their asses that say this protocol works and effectively treats patients - they were even paid to say it could be cured in that time. The insurance defendants did this because Lyme treatment was flagged by the CDC in the 90's for being incredibly expensive, and the insurance defendants didn't want their insurance companies to have to pay for Lyme patients' treatment - by limiting treatment to 28 days, this way these insurance companies do not have to pay for our treatment after that point. To add to this, when any IDSA doctor on the board disagreed with this outrageous protocol, saying there were no medical studies to back it up and Lyme indeed needs to be treated for years on end, they were kicked out of the board and further lost their licenses and jobs - one of the 50 mentioned in this case committed suicide after facing such financial and professional crises his business was dissipated and he was forced to battle the CDC in court with his personal money. And when patients fought back and demanded things be changed, that's when these doctors began posting articles stating there is a 'Pseudo-Lyme issue', remarking that we are hysteric for demanding something is wrong with us. Some key quotes: - "The reason hundreds of thousands of people suffer with chronic Lyme disease is because they are refused long-term antibiotic treatment beyond the 28 days. The Insurance Defendants ignore their patients, ignore the results (people who get better with long term antibiotic treatment), ignore the many studies showing that many patients need antibiotic treatment beyond the 28 days, and ignore the doctors who keep saying that some patients need long term antibiotic treatment." - "Dr. Gary P. Wormser, Dr. Raymond J. Dattwyler, Dr. Eugene Shapiro, Dr. John J. Halperin, Dr. Robert B. Nadelman, Dr. Leonard Sigal, and many others were paid large sums of money by the Insurance Defendants in consulting fees, in expert witness fees, and to review, and deny, insurance coverage claims related to Lyme disease.” - "If the Insurance Defendant is sued because the patient who is denied coverage gets worse, or even dies, then the Insurance Defendant hires IDSA Panelists as expert witnesses and pays them exorbitant fees." -"the Insurance Defendants knew that many patients never develop the EM rash and the Guidelines' requirement of a positive lab test is problematic because the two-tier serology test fails to detect up to 90% of Lyme cases. As a result, many Lyme sufferers are left undiagnosed and untreated." - "the IDSA excluded all physicians who received income of more than $10,000 per year from treating Lyme disease. Under this rule, if a physician saw more than one Lyme patient per week, he/she was excluded from the IDSA panel . . . Panelists who did not agree with the Insurance Defendants’ arbitrary guidelines were kicked off the panel." - "Dr. Sigal, the man paid $560 an hour by the Insurance Defendants, is not referenced or mentioned in the 2000 IDSA guidelines. However, Dr. Sigal is referenced six (6) times in the 2006 guidelines [CDC]." - "The 2006 IDSA Guidelines actually “promote the idea that Lyme is a simple, rare illness that is easy to avoid, difficult to acquire, simple to diagnose, and easily treated and cured with 28 days of antibiotics.” . . . "The IDSA, the IDSA Panelists, and the Insurance Defendants ignore the organizations, information, and scientific data reporting that chronic Lyme disease is a legitimate medical condition, that chronic Lyme disease requires long-term antibiotic treatment, and that the current testing criteria fails to diagnose a majority of people with Lyme disease." - "Lyme doctors also know that chronic Lyme disease patients who do not respond to short-term antibiotic treatment, and do not receive long-term antibiotic treatment, will suffer debilitating symptoms, will be in constant pain, will be unable to function or live a normal life, and will eventually die from Lyme disease . . . the disease will spread to their joints, their heart, and their nervous system causing crippling muscle and joint pain, disabling fatigue, arthritis, neurological disorders, cardiac disorders, depression, memory loss, bladder loss, bowel dysfunction, visual loss, and death." - "Defendants paid these Lyme IDSA Panelists to enforce their new stringent testing protocols and maintain the 28-day treatment requirement. These doctors began publishing papers on the 'Lyme hysteria' and the 'Pseudo Lyme' problem . . . Instead of providing long-term antibiotic treatment, the Insurance Defendants, with the assistance of the IDSA Panelists, classify chronic Lyme disease patients as having post treatment Lyme disease syndrome, a psychological issue, or other psychological issues such as Munchausen's syndrome. If that does not work, the Insurance Defendants, with the help of the IDSA Panelists, classify the patients’ problems as chronic fatigue syndrome or fibromyalgia." - "After the charges against Dr. Jemsek [very famous chronic Lyme doc] were announced, the Blue Cross Defendants then used this recommendation to place a hold on all claims of Dr. Jemsek and his clinic. The Blue Cross Defendants then sued Dr. Jemsek for up to $100 million for treating patients who were insured by them. This put him out of business in North Carolina and forced his practice into bankruptcy." . . . "Dr. Jones’ [another one] legal defense costs have exceeded one million dollars." -"Sanchez acknowledged that the Blue Cross Defendants senior personnel knew that some patients who actually had Lyme disease would be denied treatment and that many would suffer as a result. He testified that the Blue Cross Defendants 'rationalized' that Lyme disease sufferers who were denied coverage could appeal their denials." - Sanchez admitted payments from Prudential, Aetna, Blue Cross Blue Shield, Anthem, and Met Health were all made directly to his name. All admitted being paid via mail from 1996 through 2016. - The Insurance Defendants also paid Dr. Allen Steere, a well-respected Lyme researcher, to endorse their new Lyme disease treatment policy of limiting Lyme disease treatment to 28-days. Dr. Steere published his treatment guidelines in Transactions of the American Academy of Insurance Medicine. Dr. Steere also wrote a paper for the Insurance Defendants medical directors claiming “all stages of the infection” could be treated in 10 to 30 days. - "Plaintiffs, and all others suffering with Lyme disease, were forced to pay out-of-pocket for their treatment because the doctors who would treat Lyme disease did not want to submit the claims to the Insurance Defendants for fear of being reported to their medical boards. 67. These physicians used their own money to defend themselves. Some lost their licenses, some were not allowed to treat Lyme patients, and one of these physicians eventually committed suicide."

However disturbing, saddening, and maddening this news is, it is incredibly gratifying knowing the truth is beginning to come out about why exactly the CDC won't allow us treatment for more than a month when there is absolutely no way the bacteria and co's can be killed that fast. Of the 27 patients who filed for this lawsuit, two deceased due to Lyme had to be represented via family member, eight are extreme neuro cases involving seizures and misdiagnoses of Parkinson’s, ALS, or MS including a couple that were told they had months to live (Lyme treatment has given them much, much more). One whole family as well as three siblings were among the Plaintiffs, living in tick-infested areas where practically everyone has Lyme. It is incredibly inspiring that these 27 patients from different states joined forces to put these invalid doctors and insurance companies on trial; they gambled the money they very much needed for treatment and living costs to battle the most powerful insurance agencies and government figures in the US and won. Mine and my parents' gratitude and love goes out to each and every one of them. We are able to sleep much, much better at night and see much more optimism in the fight knowing the truth about the doctors and insurance companies who conspired to deny treatment, coverage and the diagnosis of the disease I and nearly 3 million others in the US have lived with is finally coming to light. Thanks to these incredibly strong, impossibly relentless, and astoundingly dedicated Lyme warriors and their family members, we have made a huge step in uncovering the bullshit of why the CDC and IDSA are burying this disease. #getthosebastards