CALDA News, Events & Blogs

Another run away Prius hit the news today. I have one (first year). I share these concerns. Is this car safe? Should I really be driving it? Have they recalled my model? It made me think about the IDSA Lyme guidelines a bit. Why haven’t they recalled these guidelines? They actually harm patients. The real risk to patients is not that they will have the risk of a reaction to their antibiotics, it is that they will be treated under these guidelines. That they will remain ill. That the diagnosis will be missed. That the treatment when it comes will be too little, too late. That the medical society responsible for the high, high treatment failure rates will do nothing more than circle the wagons around their self interests. That patients matter less than vaccine and diagnostic test patents and preserving the reputation of a medical society that does not even have patients on the agenda. Full story

I’ve been getting a lot of email lately about the IDSA. Most of it is about the voting issues, but some of it is about other things they have done to “game the system”. Here’s a list of the top 10 questions patient ask me about the IDSA that begin with the word “why”? As Mark Twain says, “few things are harder to put up with than the annoyance of a good example”—or in this case, ten good examples of why the Lyme community should question the advice to “trust us, we’re the experts” when it comes to the IDSA. Let me know if you think there are any “whys” I left off the list. Full story

Clever way to raise Lyme awareness. You can view this car design by clicking on the link. Then click to view in 3-D and click to vote. Top vote-getters go on to next stage of contest. Winning design will be applied to a NASCAR show car. You can vote once a day through March 15. Full story

Learn about the many manifestations of Lyme disease: physical, neurological, psychological and emotional, from a panel of distinguished professionals. They will discuss symptoms, diagnostic tools and treatment protocols for physical and neurological Lyme symptoms, as well as family, social and school dynamics and advocacy. Full story

Save the date! CALDA's second annual patient conference will be held in San Ramon (east bay area in northern California) on Saturday April 24. Full story

Listen to Lyme specialist Ginger Savely, DNP, via free tele-seminar, 8 pm EST, March 23. Full story

Though Shasta County, CA, is known to harbor lots of ticks, few tick studies have been done in the area. Since November, a pair of district technicians have spent a day each week collecting tick samples from 20 spots around the district, which stretches from Castella to Cottonwood and French Gulch to Shingletown. Full story

California's Lyme Disease Advisory Committee (LDAC) meets March 11 in Sacramento. This group advises the state department of public health on matters related to the awareness and prevention of Lyme and other tick-borne diseases. Public comment is allowed at the end of the meeting. Members of the public unable to attend in person can participate by telephone, toll-free. Full story

"As Lucille Ashford's mom raced the 10-year-old toward a Cleveland emergency room last month, the girl lost consciousness. Lucille's heart was struggling to keep her alive. Doctors quickly intervened and saved the child's life. Then it took a team at Rainbow Babies & Children's Hospital a couple of days, a slew of tests and even more cooperation from the exceptionally brave child to figure out what was wrong. Lucille had Lyme disease, and it nearly killed her." Full story

"I have two kids who have lost seven and five years of their lives at such a crucial stage," said mom Susan Jasper. "If somebody had suggested to us six years ago that maybe you should look at Lyme, that might have saved Russell and Katie losing so many years of their life." Full story

From the UNDER OUR SKIN blog: "Last year the medical board punished 43 physicians for serious charges such as substance abuse, sexual misconduct, mental illness, and negligence; not one of these physicians received a fine larger than $5,000. And only one other physician, accused of drug abuse, received a longer supervised probation period than Dr. Jones--though this drug-addict doctor did not receive the additional $20,000 in fines levied on Dr. Jones." Full story

Theresa Denham, president and founder of the Oregon Lyme Disease Network, takes on a recent Eugene Weekly columnist who maintained that Lyme was not a serious threat to Oregonians. Full story

CALDA president Phyllis Mervine had a sharp response to a "Eugene Weekly" guest editorial, written by a doctor who claimed there was little chance of any one suffering serious effects from Lyme disease. Mervine suggested the doctor "examine the evidence herself and not accept at face value the interpretation of powerful, self-appointed authorities who have vested interests to protect." Full story

Economist, Lyme patient and author Helene Jorgensen will discuss her book, Sick and Tired: How America's Health Care System Fails Its Patients, at two bookstore appearances, in San Francisco and Palo Alto. Full story

"Any medication has the potential to have a problem, but we allow long-term antibiotic use for treatment of acne -- acne of all things," said Rep. Jen Coffee, R-Andover. "Why wouldn't we allow it for Lyme disease?" Full story

The CT medical board voted to discipline Lyme-treating pediatrician Dr. Charles Ray Jones. Their sanctions will include a $10,000 fine and a four-year license probation during which Jones' practice will be monitored. Full story

This is a chart of the relative importance of different stakeholders to big Pharma. (Click chart to enlarge.) I was really struck by how little weight patients were given (9%) compared to specialists (47%) and compared to key opinion leaders (21%). So if you take specialists and add key opinion leaders to that, 68% of drug companies thought that key opinion leader who are specialists would have the most influence on their company over the next 2 years. Wow! And, look at the lowly role of the general practitioner Full story

One of the problems with the IDSA reviewing its own guidelines is that it is not an independent process. The IDSA selected the panel, paid the ethicist, and sets the ground rules. And, now we have the IDSA manipulating the voting process to achieve a goal--protection of the IDSA professional reputation--that conflicts with the goal of providing quality patient care. Think about it. The vote on the lab test requirement for diagnosis was 4 to 4. 4 to 4 means there was NO consensus. Yet the IDSA chalked this up as a victory on its side by ignoring the two step vote requirement and flipping the supermajority vote in its favor. The IDSA is essentially saying 4 to 4 means the IDSA wins on this point. To the fox guarding the chicken coop, this makes perfect sense. Let me drill down into the detail so that what the IDSA did here is clear. Full story

When a 21-year-old Florida man started having severe problems after a tick-bite in 2008, doctors first accused him of illegal drug use and then said he was schizophrenic. Finally, he was diagnosed with Lyme disease and fell into a coma around Christmas 2009. A few days ago, he woke up. His family is calling it a miracle. Full story

The rally in support of Dr. Charles Ray Jones that had been scheduled for Feb. 16 has been canceled due to predictions of heavy snow. Full story