CALDA News, Events & Blogs

Responding to patient concerns, the President of ILADS, Dr. Robert Bransfield today delivered a letter to the IDSA calling upon the organization to remove barriers to guidelines change. The letter follows patient complaints to ILADS about the IDSA voting process, which were uncovered by the Connecticut Attorney General in the oversight of the IDSA Lyme guidelines review process. According to the Attorney General, the voting process used by the IDSA was in violation of the terms of the antitrust Settlement Agreement. The Attorney General has called upon the IDSA to redo the vote using the proper voting procedures. Text of the ILADS letter follows the jump. Full story

The Lyme documentary will be screened Feb. 13 in Rocklin and March 6 in Sebastopol. Full story

Morgellons is a mysterious disease, as yet unrecognized by the medical establishment, that tends to involve lesions and fibers developing in the skin. Some people with symptoms of Morgellons also have Lyme disease. The third annual Morgellons conference brings together doctors, scientists and patients to discuss research, education, diagnosis and treatment of Morgellons disease. Full story

The first committee hearing for SF 1631, Minnesota's Lyme doctor protection bill, will be held Monday, February 8, at 12:30 in the State Capitol in St. Paul. Supporters of the bill are urged to show up and wear green to show solidarity. Full story

Lyme patients' groups are asking Connecticut residents to contact AG Blumenthal, and residents of other states to contact their own AG, in connection with IDSA's latest actions. Full story

During an antitrust investigation of the IDSA guidelines development process for the 2006 Lyme disease treatment guidelines, AG Blumenthal’s office uncovered significant procedural deficiencies, including conflicts of interests of the panel members. A settlement was reached, and the IDSA is breaching it. The IDSA is manipulating the voting process to favor no change in the guidelines. The AG has sent the IDSA a letter requesting that they redo the vote in compliance with the agreement. Full story

Peer Observations magazine and the Illinois Lyme Disease Network present physicians' conference on a wide range of Lyme-related topics. Full story

Two events on February 16: Rally to support Dr. Charles Ray Jones, and attend the Connecticut Medical Board hearing. Full story

A Virginia high school senior's research paper on Lyme disease is getting national recognition for proposing a method of early detection that cuts diagnosis time from a month to mere minutes. She chose this topic because 3 of her family members suffer from Lyme disease. Full story

Oscar nominees were announced today, and the Lyme documentary Under Our Skin was NOT chosen. (Two months ago, when it was named to the “short list” of potential nominees for Best Documentary Feature, the Lyme community’s hopes were high.) I’m disappointed the Academy Awards nominators didn’t share our enthusiasm for this important film. But, hey, this bump in the road isn’t going to stop us. Full story

UNDER OUR SKIN is featured in PEOPLE MAGAZINE as a "Movie Pic," calling the Lyme film "part medical drama, part detective story, part whistle-blowing expose." Check out page 40 of the current issue!

There is a lot of flurry in the Lyme light about the IDSA recent letter in opposition to the physician protection bill pending in the New Hampshire physician protection legislation. This legislation follows on the heels of legislation already passed in California, Connecticut, and Rhode Island. Like breast cancer patients before them (who passed legislation in 20 states to secure the right to make treatment choices), Lyme patients are appealing to legislators to preserve their right to receive treatment for Lyme disease. The IDSA claims that its guidelines are not mandatory, but to my ears this sounds like double-speak. And, the newly elected President of IDSA, Dr. Whitley essentially admits as much when he complains about lab tests that are not “regulated” by the IDSA guidelines. What makes IDSA think that it has the “right” to regulate lab tests? Who says? How genuine is IDSA when it claims that its guidelines are really just “discretionary”? Come on, guys, one or the other, but you can’t play both sides of this issue with a straight face. Maybe we have to fall back to Lincoln or Bush, take your pick, about how many people you can fool. Full story

A terrific article by Jerome Groopman, “Health Care: Who Knows Best”, appeared in the New York Times about the healthcare bills. Groopman’s article discusses how healthcare should be implemented in terms of guidelines and notes that there are two choices. The first is through mandates. The second is through “nudging” consumers in the right direction, but leaving the final choice to the consumer. (This approach is advocated by the author of the book Nudge, who is an advisor to Obama.) If this sounds like the Lyme debate, you are catching the drift. As we know, the distinction between mandatory guidelines that do not permit physicians and patients to make choices and guidelines that permit individuals to make their own choices, even if they are unpopular, can determine whether a patient has the opportunity to get well. The question boils down to this: Do the experts know best or do some decisions simply belong to the patient and the treating physician? Full story

Drs. Janet and Felix Sperling of the University of Alberta published an entomology study on Lyme disease in Canada that is worth a read, especially if you believe that Lyme stops at the US border. Did you know that Lyme has now been recognized in every province in Canada? And that infection rates of ticks are 12.5%? More fast facts after the jump. Full story

FDA Announces Class I Recall of Certain Infusion Set Needles-- Huber needles used in implanted ports to withdraw blood, inject medications, and other solutions Full story

The acclaimed Lyme documentary draws big crowd in York. Says one audience member, "just about anybody you talk to in York County either has Lyme disease or knows somebody who's had it." Full story

A month ago, Bart Fenolio was told he had Lou Gehrig's disease and had two months to live. Doctors advised his wife, Heidi, to take him home and call a hospice. But Fenolio is proving the doctors wrong. Instead of getting worse, he's growing stronger each day, thanks to antibiotics. That's because he doesn't have Lou Gehrig's disease, which isn't curable. He has Lyme disease, which is Full story

A 30-second trailer for UNDER OUR SKIN is now showing in 1,200 cabs in New York City, playing 66,000 times a day in a 24-hour period. That means the video will get around 1.8 million impressions a month! Full story

The Council of Parent Attorneys and Advocates (COPAA) is a national group which advocates for special education rights for disabled children. At COPAA's upcoming annual conference in St. Louis, MO, well-known Lyme advocates will discuss the special education needs of children with Lyme disease. Full story

Dr. Brian Fallon, Director of Columbia University's Lyme research center, and colleagues have recently published a new paper about how Lyme disease affects the central nervous system. Full story