Once again I am disappointed in our National Media for ignoring what is going on over Lyme Disease not just in the UK but also USA, Canada and the rest of Europe.
They can't see what a medical disgrace is happening under their noses if they only took just a short time to read around the subject they would soon realise that there is something seriously wrong when thousands of patients the World over suffer chronic ill health, when simple antibiotics can be the key to their illness.
I was so lucky to have a doctor who realised that when my chronic symptoms of Arthritis and muscle weakness responded to antibiotics it was because I was suffering from Lyme Disease. I had been diagnosed with Fibromyalgia, ME/CFS and then Polymyalgia Rheumatica. I had x rays which indicated Rheumatoid Arthritis at that time the Arthritis in my hands was so bad that I could not lift a kettle even when 1/3 full and using two hands, even to blow my nose hurt my fingers. Now after long term antibiotics I have no pain, no arthritis and no disability and can garden again hence my other blog about my garden, Joanne's Cottage Garden. It took nearly 3 years of antibiotics to get well again. Something that the Infectious Disease Society of America, IDSA advises cannot be. They advocate a couple of weeks antibiotics and then a lifetime of steroids and anti inflammatory medication. No wonder our Health systems can't cope with the costs.
Thanks to ILADS and their guidelines I was treated on long term antibiotics and after 6 1/2 years of chronic illness have my health and life back.
ILADS International Lyme and Associated Disease Society gives their response to the IDSA decision to uphold it's discredited 2006 Lyme Disease Guidelines.
For Immediate Release: Judge, Jury = Status Quo:ASTONISHMENT AS MEDICAL PANEL RUBBER STAMPS ITS OWN CONTROVERSIAL GUIDELINES
Researchers on the sidelines tell thousands of sufferers that chronic Lyme doesn’t exist; no viable alternative explanations given
(Bethesda, Md)—Despite years of controversy, an antitrust lawsuit by the Connecticut Attorney General, and nine months of review, the Infectious Diseases Society of America (IDSA) double downed on its own controversial Lyme disease treatment guidelines with a status quo decision critics call “ highly suspect”.
“It’s a sad day for the health care system and for everyone who suffers from the Lyme disease epidemic,” says Dr. Robert Bransfield, President of the International Lyme and Associated Diseases Society (ILADS). “The IDSA’s flawed positions means patients will continue to suffer with incorrect diagnosis and improper treatment.” Treatment guidelines are crucial when it comes to healthcare because they may dictate whether patients can get diagnosed and treated for illnesses and whether or not insurance companies will pay for it.
Connecticut Attorney General Richard Blumenthal launched an investigation against the IDSA citing evidence that the authors of 2006 Lyme disease guidelines had undisclosed conflicts of interest that may have influenced their conclusions. He also charged that they failed to consider differing medical opinions. This landmark event represented the first ever lawsuit against a professional medical society for guidelines abuse.
The much anticipated verdict just released by a special review panel effectively rubber stamped the association’s earlier, contested guidelines. It limits treatment to three to four weeks of antibiotics. Physicians, Lyme patients and advocacy groups weren’t surprised but are dismayed that the panel decided to turn its back on the science - backed by 1300 pages of peer-reviewed articles, that proves Lyme disease can become chronic, debilitating and can be missed due to unreliable testing (as acknowledged by the CDC and FDA). Hundreds of thousands of patients and their families suffer from chronic Lyme disease. “By and large, the people on the IDSA panel who made this decision are ivory tower researchers”, says Bransfield. “They’re not the doctors on the front lines looking into the eyes and faces of these very sick patients, performing exams and then assuming long term responsibility for dealing with patients suffering from chronic Lyme.
Bransfield and ILADS point to a number of discrepancies and other concerns about the vote, including: • 68 out of 69 of the original 2006 recommendation under review were OK’d with unanimous votes. “How can there be such a total consensus with any scientific issue?” asked Bransfield. “It’s highly suspect and beyond comprehension.” • If Lyme cannot be chronic, then why did the guideline’s authors acquire 200 Lyme disease patents and receive $76 million in Federal funds to study it? • The original guidelines are not only controversial, but written in 2006, are considered old and out of date. • The CDC has also advised for many years that the disease should be diagnosed on clinical grounds and not by unreliable laboratory tests. The Lyme disease tests are inaccurate 50% of the time. • The IDSA’s decision reinforces that doctors have little control when it comes to treating diseases such as Lyme. Researchers and insurance companies remain in the driver’s seat of diagnosis and treatment.
Lyme disease has reached epidemic levels across the United States. While the CDC reports 30,000 new cases a year, it recognizes that number could be as high as 300,000, making it a larger epidemic than AIDS.
Dr. Bransfield says ensuring the integrity of guideline development processes as they were intended to be used is critical to quality health care in the United States. “Conflicts of interest on guidelines panels are now a crisis,” Bransfield says, “It is time for Americans to realize how important the issue of guideline development is. Patient lives are at stake and no one is being held accountable when guidelines abuse place financial interests above patient care.”
Dr. Robert Bransfield, MD, DLFAPA, is available for media interviews on this and other Lyme related topics. He can be reached at:
225 Highway 35
Red Bank, NJ 07701