CALDA News, Events & Blogs

CALDA and Time for Lyme (TFL) want to thank everyone for their help on the petition asking Connecticut Attorney General Blumenthal to further hold the IDSA accountable. Although the petitions were limited to Connecticut residents and the timing fell in the midst of school graduations with all of the time those entail, approximately 2,500 signatures were collected and are being sent to him. Full story

The San Jose Mercury News writes a follow-up story on Bart Fenolio, who last December was told he had two months to live. Fenolio has been in a nursing home since then, receiving Lyme treatment. Now he's well enough to go home. Full story

What do Representatives Chris Smith and Frank Wolf have in common? They know how to ask the right people hard questions. What do the IDSA, the NIH, and the IOM have in common? They’ve honed the skill of the artful dodger. Representatives Smith and Wolf want to know why the NIH “stepped back” from its charge to run a state of the science conference and handed that hot potato to the IOM. One big difference between the NIH process and the IOM process? The NIH process considers bias a conflict of interest, meaning IDSA folks wouldn’t be sitting on an NIH panel. But, drum roll. . .the IOM permits panels to be biased and coincidentally has a panel that consists almost exclusively of IDSA folks, 4 of 6 panel members. Oh, and one more thing, the IOM is not technically considered to actually be ‘the government’. This is a picture perfect example of plausible deniability. The NIH didn’t stack a panel. The IOM did with IDSA folks. But, hey, they like bias and they are not accountable, are they? A copy of the letter from Representatives Smith and Wolf to Dr. Francis Collins of the NIH together with Collins response can be downloaded at the bottom of this blog post. Full story

The Lyme Disease Association of Southeastern Pennsylvania will sponsor this year's third annual Lyme advocacy training, the day before the LDA/Columbia 2010 Scientific Conference. Full story

When the eight-year-old boy bent his head down, his mother noticed an odd little bump under his hair. Looking more closely, she saw it was a tick. “We live near wetlands,” she explained to me. “We pull ticks off our dog all the time. No big deal.” She plucked out the tick with tweezers, threw it away and forgot about it. Full story

The Sacramento County health department is warning the public to beware of ticks, after an eight-year Folsom boy caught tularemia, an infection carried by dog ticks. (Different from deer ticks, which carry Lyme disease.) The county health department then trapped 30 ticks in the area where the boy had been bitten, and found 6 of them infected with tularemia. Full story

Just last week, southern California Lyme patient Meredith Hiney heard about the upcoming 2010 CALDA Lymewalks, and “instantly knew” that raising money for Lyme disease research was something she wanted to do. Following the easy directions on the CALDA website, she set up her own fundraising page, emailed the link to family and friends, and in less than a week raised more than $1500 for Lyme research. Who is Meredith Hiney, and why is she fundraising like the energizer bunny? Full story

The 2010 CALDA Lymewalks are a series of events throughout California in September and October. The purpose is to raise the profile of Lyme disease in our state and to raise money for Lyme disease research. Events are planned for Los Angeles, San Diego, Sacramento, San Francisco and Ukiah. However, you can be a "virtual walker" anywhere. Full story

The Sydney Morning Herald continues its coverage of the divide between experts who insist there is no Lyme in Australia, and the many patients who feel they've caught the disease there. One of them, Karl McManus, who was bitten by a tick 3 years ago while helping film a TV show, died last week. Full story

The Lyme Disease Association will hold its 11th annual Lyme and Tick-borne Diseases Conference in Philadelphia Oct. 2-3. It is jointly sponsored by Columbia University College of Physicians and Surgeons. CME credits available. Geared towards healthcare professionals. Open to the public. Full story

This book is not about how to get sick or how to stay sick. It's about how to "be" when you are sick. How to have a worthwhile existence, finding meaning, purpose and joy, even when chronic illness seems to have stolen your life away. Full story

Virginia Savely, DNP, writes about Morgellons disease in the Archives of Psychiatric Nursing. Full story

July 24, San Andreas, CA. August 14, Pine Grove, CA Full story

The state medical board has withdrawn plans to impose additional penalties against Dr. Jones. The Lyme-treating pediatrician had unable to locate a board-required monitor for his practice. Since he has now found one, the board canceled plans for a hearing on the matter. Full story

An Australian woman has been granted the right to have her recently deceased husband's body tested for a disease that health officials say doesn't exist in Australia--Lyme disease. The man became acutely disabled three years ago, after being bitten by a tick in bushland north of Sydney. Australian tests for Lyme were negative, though US tests were positive. When the man died last week, authorities initially refused his widow's request for an autopsy. A court injunction now allows her to proceed. Full story

This photo was taken at the Boston State House on June 30, 2010, just after Governor Duval Patrick signed the 2011 Massachusetts state budget, which includes an amendment which will protect physicians who treat Lyme disease for longer than 30 days. The bill is similar to physician protection legislation which was passed in Connecticut last year. From left to right: Back row: Susan Fairbank-Pitzer, Donna Castle (advocates), Rep. Robert Hargraves (Groton) Front row: Robin LeMieux (advocate), Dr. Jacqueline Luz-Ruiz, Governor Duval Patrick, Dr. Sheila Statlender, Jayme Kulesz (advocate). Congratulations and a big thank you to the Massachusetts advocates for doing such a great job!

The California Department of Public Health announces a recall of almost half a million packages of Fresh Express brand romaine lettuce. People with compromised immune systems are especially at risk. Full story

New Hampshire has the highest number of Lyme disease cases per capita in the nation. Watch WMUR TV's one-hour "NH Chronicle" special on the subject. Full story

The Hartford Advocate reports that time is running out for the controversial Lyme pediatrician. Full story

Anchor/reporter Sharon Rose, of WCSH TV station in Portland, Maine, has produced a four-part series on chronic Lyme disease. In addition to her televised reports, the TV station's website has a lot of information about Lyme disease, as well as an invitation for Lyme patients to tell their own stories in the comments section. Full story