CALDA News, Events & Blogs

NEWS: Shasta (CA) vector district undertaking large tick study

05

Mar

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

NEWS: Dramatic heart surgery saves Ohio child felled by Lyme disease

04

Mar

"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

NEWS: Canadian siblings stopped in tracks by Lyme disease

03

Mar

"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

NEWS: Crime and punishment in CT; analysis of recent medical board action against Dr. Jones

02

Mar

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

NEWS: Oregon Lyme advocate challenges IDSA viewpoint: "Lyme is indeed in Oregon."

23

Feb

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

NEWS: CALDA president takes IDSA defender to task in Oregon newspaper.

18

Feb

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

NEWS: New Hampshire House approves Lyme doctor protection bill

18

Feb

"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

NEWS: Connecticut medical board disciplines Dr. Charles Ray Jones

17

Feb

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

NEWS: Lyme patient comes out of long coma. Dad asks: Is this "Awakening" or "It's a Wonderful Life"?

15

Feb

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

NEWS: Kennebunk town manager, wife fight to educate public on dangers of Lyme disease

11

Feb

After years of misdiagnosis and despite testing CDC-negative, Maine patient's drastically declining health turned around after being diagnosed with chronic Lyme and given long-term therapy. Now, the husband and wife strive to raise awareness of the increasing incidence of tick-borne disease in their state. Full story

NEWS: Lyme disease a growing concern in the Netherlands

10

Feb

From Radio Netherlands: Half a million Dutch Lyme patients, 25% tick infection rate, 65,000 sign petition calling for government action. Full story

NEWS: Student's research paper on Lyme disease ranks nationally

02

Feb

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

NEWS: Under Our Skin in People magazine

30

Jan

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!

NEWS: FDA issues recall of infusion needles (such as those used with chest ports)

27

Jan

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

NEWS: Packed audience sees UNDER OUR SKIN in York, PA

24

Jan

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

NEWS: Learning about Lyme disease the hard way

23

Jan

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

NEWS: UNDER OUR SKIN trailer playing in NYC cabs 66,000 times a day

23

Jan

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

NEWS: Dr. Fallon publishes new research on neuro-Lyme

21

Jan

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

NEWS: 2-hr cable TV program to explore Morgellons Disease

21

Jan

Two-hour cable TV program devoted to Morgellons Jan 28, will repeat Jan 29. Hear from experts about this little-known disease that's often associated with Lyme. Full story

NEWS: Tennessee family crusades against Lyme disease

19

Jan

Two Germantown teenagers--brother and sister--have been battling serious bouts of Lyme disease for over two years now. After traveling out of state for treatment and shelling out over $200,000, they are finally showing improvement. Their local newspaper spotlights the family and how they hope to raise awareness of Lyme disease in their community. Full story

NEWS: Five in Pennsylvania family diagnosed with Lyme disease

15

Jan

The Wellsboro Gazette, a weekly paper in Wellsboro, Pennsylvania, features a local family coping with Lyme. Five of its seven members have been diagnosed with the disease. Full story

NEWS: Actress Jane Alexander tells LA Times she's had Lyme herself, and she's pushing hard for "Under Our Skin" to get an Oscar nomination

12

Jan

Not only has Jane Alexander had Lyme disease twice, she's had friends "suffer severely from it." Full story

NEWS: IDSA panel misses its Dec. 31 target for Lyme guidelines decision; Under Our Skin blog analyzes where we stand now

10

Jan

The Infectious Diseases Society of America IDSA) has missed its target date of Dec. 31, 2009, for rendering a decision about whether to rewrite its controversial Lyme disease treatment guidelines. The "Under Our Skin" blog takes a look at where this leave Lyme patients now. Full story

NEWS: CT's Sen. Dodd to retire; AG Richard Blumenthal to run for his seat

06

Jan

Connecticut Attorney General Richard Blumenthal, whose civil investigation of the IDSA brought about last summer's historic Lyme hearing in Washington, says he will run for seat of retiring Senator Christopher Dodd. Dodd is a co-sponsor of the proposed Lyme research bill currently in Congress. Full story

NEWS: Special issue of Lyme Times devoted to persistence of infection in chronic Lyme

05

Jan

Steven Phillips, MD, a treating Lyme physician, past president of ILADS, and a speaker at last summer's IDSA Lyme hearing, presents an extraordinary analysis of the evidence supporting the persistence of Borrelia burgdorferi in chronic Lyme disease. Full story

NEWS: When is a delusion NOT a delusion? Unraveling the mystery of Morgellon's Disease

01

Jan

When patients manifest a certain set of strange symptoms, mainstream medicine often labels it "Delusions of Parasitosis." But a growing body of evidence calls that into question. Lyme specialist Ginger Savely, DNP, and Cindy Casey, RN, examine the mysterious condition called Morgellons Disease. Full story

NEWS: Yale study shows birds play significant role in spread of Lyme disease

23

Dec

The range of Lyme disease is spreading in North America and it appears that birds play a significant role by transporting the Lyme disease bacterium over long distances, a new study by the Yale School of Public Health has found. The study appears online in the journal Frontiers in Ecology and the Environment Full story

NEWS: Germany grapples with a profusion of disease-carrying ticks. Effect of climate change?

17

Dec

"A German Armed Forces special unit wearing snowy white protective suits complete with hoods and respiratory masks hacks its way through the Bavarian undergrowth. The ghostly figures are here to carry out a reconnaissance mission. Their enemy has eight legs and a dangerous weapon." Full story

NEWS: "Comeback Queen" overcomes Lyme disease to become top runner

04

Dec

In an interview with University of Toronto's student newspaper,the Varsity, star runner Megan Brown opens up about the seemingly impossible odds she has overcome to run one of her best cross-country seasons ever. Full story

NEWS: Connecticut study finds Lyme in 90% of area deer ticks

29

Nov

A new study of ticks collected in Connecticut finds 90% infected with Lyme and 30% infected with babesia. Full story

NEWS: Thanksgiving in the Lyme world

23

Nov

Our Gratitude List: 2009 has been a remarkable year for the Lyme community. Here are some things we're grateful for this Thanksgiving season. Full story

NEWS: Under Our Skin makes "short list" for Academy Award consideration

18

Nov

The Academy of Motion Picture Arts and Sciences today announced that the Lyme documentary was selected as one of 15 finalists competing for "Best Documentary Feature" in the 82nd Academy Awards. Full story

NEWS: Canadian TV takes powerful look at Lyme disease--why are so many being misdiagnosed?

17

Nov

CTV's W5: "Why some Canadian doctors are misdiagnosing a crippling disease caused by a shape-shifting superbug -- until it's too late." Full story

NEWS: California's Lyme Disease Advisory Committee to hold phone meeting on Nov. 18.

17

Nov

The public is invited to participate in the teleconference meeting of the state's Lyme Disease Advisory Committee, starting at 9:30 Wednesday. Full story

NEWS: Nurses start Lyme education group in southern Oregon

15

Nov

Two nurses who have personal experience with Lyme disease plan to use their nursing experience and training to assist Rogue Valley residents who may not even know they have Lyme disease. Full story

NEWS: LA Times blogger roots for "Under Our Skin" to be nominated for an Oscar

13

Nov

Says the LA Times' Tom O'Neil: "Let's hope the Oscars cite "Under Our Skin" next week when the academy unveils the shortlist of titles in the running for best documentary feature. It's not only a compelling work of filmmaking; it's important because of its shocking message: Lyme disease may be going undiagnosed as a greater and more widespread threat to Americans' health than AIDS." Full story

NEWS: Hollywood looks at "Under Our Skin" and Lyme disease

13

Nov

An entertainment industry screening of the Lyme documentary was followed by a Q & A session with director Andy Wilson and actresses Joanna Kerns and Tracey Silver, whose lives have both been affected by Lyme disease. The film was was included a series showcasing possible Oscar contenders. Full story

NEWS: Lyme disease robbed Jackie Zani of her high school years, but not her spirit

12

Nov

When Jackie Zani and her four siblings were all felled by serious cases of Lyme disease some years ago, her future seemed bleak indeed. Then, her family found Lyme specialist Charles Ray Jones. Under his care, she not only recovered her health, she's now playing college-level women's soccer. Full story

NEWS: Should Minnesota protect its Lyme doctors?

10

Nov

Minnesota Medicine, published by the Minnesota Medical Association, takes a look at Lyme disease and proposed legislation to protect doctors who prescribe long-term antibiotics for Lyme. Full story

NEWS: LDA honors “Cure Unknown” author Pamela Weintraub

06

Nov

The Lyme Disease Association honored the science journalist at the group’s October conference in National Harbor, MD. Full story

NEWS: Tick warnings issued for Sarasota, Florida--Rocky Mountain Spotted Fever & Lyme disease

04

Nov

The Sarasota County Health Department has issued a tick-borne disease advisory. This comes on the heels of a local case of Rocky Mountain Spotted Fever. Officials warn that tick-borne illnesses such as RMSF and Lyme disease are present year-round throughout Florida. Full story

NEWS: Latest "Lyme Times" examines IDSA hearing in detail

31

Oct

The latest issue of the Lyme Times is devoted to July 30's historic IDSA Lyme guidelines hearing. Full story

NEWS: CD-ROM of 2009 ILADS Lyme conference on sale

03

Nov

The full 2009 ILADS Lyme disease conference program is available in electronic format for PCs. Full story

NEWS: Dispatches from the front lines of autism and Lyme disease

29

Oct

The Townsend Letter, a journal of alternative medicine, focuses on the strong connections between autism and Lyme disease. Full story

NEWS: New Borrelia species found in California & South Carolina

29

Oct

The Journal of Clinical Microbiology reports on Borrelia americana, a newly described species of Borrelia found in ticks collected in California and South Carolina. Full story

NEWS: Georgia Lyme Disease Association unveils new website

16

Oct

The Georgia Lyme Disease Association has launched a new website. It highlights the Lone Star tick, widespread in that state, which many believe is a vector for Lyme disease. Full story

NEWS: Visalia woman's battle with Lyme disease leads to film showing in CA central valley

19

Oct

The Visalia Times-Delta newspaper profiles Beverly Santos, whose struggle with Lyme disease led to this week's screenings of Under Our Skin--the first theatrical showings of the film in California's central valley. Full story

NEWS: Donate to Dr. Jones--Funds urgently needed

14

Oct

Dr. Charles Ray Jones, the pediatric Lyme specialist featured in the documentary UNDER OUR SKIN, is still being dragged through the courts. His legal defense fund has evaporated and he needs to pay his legal counsel $8,000 by October 16 in order to continue to fight. Full story

NEWS: Lyme disease lepers--Canadian TV investigates

14

Oct

The Canadian TV investigative news show "16:9--the Bigger Picture" takes a look at the Lyme controversy. Full story

NEWS: XMRV retrovirus may impact CFS, autism and other conditions

12

Oct

Last week, researchers startled the medical world with the announcement that the XMRV retrovirus appears to be implicated in Chronic Fatigue Syndrome. It now turns out the same researchers are finding a connection between XMRV and autism, as well as other conditions. Full story

NEWS: Mouse virus linked to Chronic Fatigue Syndrome

08

Oct

According to a study in Scientific American, the retrovirus XMRV has been found in many people with Chronic Fatigue Syndrome. The discovery may lead to more reliable diagnosis and possible treatments. Full story

NEWS: Olbermann mentions Lyme in hour-long presentation about health care

08

Oct

MSNBC news commentator Keith Olbermann delivered an hour-long "special comment" on health care reform Wednesday. Included was a poignant example of a friend's daughter suffering from Lyme disease. Full story

NEWS: CanLyme blasts government for lack of Lyme research in Canada

06

Oct

"Lyme disease has spread unchecked under their watch, is under-diagnosed, and has been shown in research to be present in several disease processes of which Canada has some of the highest rates in the world, all while making the medical business machine very rich." Full story

NEWS: FDA warns new heparin standards will cut drug potency

05

Oct

If you are a Lyme patient who takes heparin along with IV meds, you should discuss the potency change with your doctor. Full story

NEWS: Part 3 of California doctor's own Lyme story

05

Oct

The concluding portion of the series, Dr. Jon Sterngold discusses how the IDSA guidelines impede the treatment of Lyme disease. Full story

NEWS: Connecticut school district makes life difficult for family battling Lyme disease

01

Oct

A family with a child desperately ill with Lyme thought the school district understood their child was too sick to attend school. Until they found out the district had reported them to the Department of Children and Families" for suspected "educational neglect." Full story

NEWS: Wisconsin Lyme advocates lobby in state capitol

01

Oct

Advocates for Wisconsin Lyme disease groups canvassed the Wisconsin State Capitol Tuesday and Wednesday to meet with legislators and promote their cause. Action tied in to upcoming showing of "Under Our Skin." Full story

NEWS: North Carolina health officials say yes, Lyme is in their state

01

Oct

"What we're trying to communicate to physicians is that it's possible to acquire Lyme in North Carolina, so don't hold to an old belief," says state epidemiologist. State is now working to spread word to doctors, who are often reluctant to even test for Lyme due to mistaken idea that Lyme doesn't exist in NC. Full story

NEWS: Part 2 of California doctor writing about own Lyme case; how the bacterium hides from the immune system

30

Sep

In part two of a series in the Willits (CA) News, physician Jon Sterngold discusses why the disease can be so difficult to eradicate. Full story

NEWS: California doctor describes own struggle with late-stage Lyme disease

27

Sep

"I have a dog in this hunt. I used to be the healthiest guy I knew." Full story

CALDA offers grants for DC Lyme conferences

14

Sep

Health-care providers who will be first-time attendees at the upcoming LDA/ILADS Lyme conferences in Washington DC can apply for grants to help defray expenses. Full story

NEWS: Lyme in Kentucky--"A bumper crop of ticks this year"

24

Sep

Kentucky newspaper columnist Peter Ferrara writes of his wife's experience with Lyme disease. Full story

NEWS: Canadian Lyme teen asks legislature tough questions

23

Sep

"It isn’t just in the United States. Ticks don’t wait in long lines with their passports to cross the border." Full story

NEWS: More TV coverage of Canadian Lyme rallies

22

Sep

Canadian TV covers Lyme rally in Victoria, British Columbia. Full story

NEWS: Debate over Lyme in Texas

21

Sep

The Dallas Morning News reports that "Debate continues over whether Lyme disease is a threat in Texas." Full story

NEWS: Canadian TV looks at Lyme disease

21

Sep

Canadians are sounding the alarm about the silent menace of Lyme disease. Reported by Avis Favaro, medical correspondent for CTV news. Full story

NEWS: Canadian Lyme patients rally for better diagnostic tests

21

Sep

At rallies across Canada this week, patients called for greater awareness of the disease within the medical community, and asked provincial governments to train doctors to recognize the disease. Full story

NEWS: CanLyme calls for government investigation of Lyme disease

19

Sep

CanLyme, the Canadian Lyme Disease Foundation, says thousands of Canadians with Lyme disease have been misdiagnosed with other diseases, while the true cause of their illness is ignored. Full story

NEWS: Filmmaker revives discussion of Lyme disease

14

Sep

According to the San Francisco Chronicle, "Under Our Skin," which screens Friday at San Francisco's Sundance Kabuki Cinema, "has managed to transform the unlikely topic of a bacterial infection into a critical hit on the festival circuit." Full story

NEWS: New 2008 CDC Lyme Statistcs

07

Sep

The Centers for Disease Control and Prevention have released Lyme disease figures for 2008. Full story

NEWS: Under Our Skin wins top festival prize in Greece

06

Sep

The Lyme documentary Under Our Skin received top honors at the International Health Film Festival in Kos, Greece. Full story

NEWS: 13 Lyme-literate practitioners reveal treatment strategies in new book

02

Sep

Press release about new book, "Insights into Lyme Disease Treatment: Thirteen Lyme-literate Health Care Practitioners Share Their Healing Strategies." Full story

NEWS: US military health clinics see a lot of Lyme in Europe

31

Aug

The Stars and Stripes reports about the high prevalence of Lyme disease showing up at US military health clinics throughout Europe, especially Germany. Full story

NEWS: Former patient who testified as a child about Lyme disease recalls encounter with Sen. Ted Kennedy

28

Aug

Evan White testified at age 14 in 1993 about his battle with Lyme disease during a hearing chaired by Kennedy. The Boston Globe and other media took note of Kennedy's emotional reaction to White's testimony. "No one could hear or feel the moment of that child and not be moved," Kennedy explained to the Globe at the time. Anyone who wasn't moved, he said, "hasn't got a heart." Full story

NEWS: Jordan Fisher Smith of "Under Our Skin" discusses hellish Lyme experience with hometown newspaper

25

Aug

“I was a park ranger, I knew I had been bit, I had the tick, I had the rash, and I reported it — and it took five doctors and a year and a half to figure it out,” Jordan Fisher Smith tells his hometown newspaper. He's featured prominently in the Lyme film which will show in Nevada City, CA, this weekend. Full story

Long-awaited Review of Lyme Disease Guidelines Set for Thursday

28

Jul

On Thursday, July 30, 2009, the Infectious Diseases Society of America (IDSA) Lyme Disease Review Panel will conduct a daylong hearing, required under an antitrust settlement between the IDSA and the Connecticut Attorney General. Patients, researchers and physicians from both sides of this hotly debated topic will present testimony to the panel in Washington, DC. The Attorney General’s investigation of the IDSA revealed the 2006 guidelines panel members had widespread commercial conflicts of interests and had excluded peer-reviewed scientific evidence supporting chronic Lyme disease. The new panel is charged with evaluating the scientific basis of the guidelines, which currently deny patients access to antibiotic therapy – the only treatment option available for chronic Lyme disease. Health insurers rely on the IDSA guidelines to deny medical reimbursements. State medical boards use them to launch unprofessional conduct actions, placing physicians who continue to treat chronic Lyme disease at risk of losing their licenses. Full story

MILESTONE: LLMD Edwin Masters dies

24

Jun

Edwin "Ed" Masters, LLMD, of Cape Girardeau, Missouri, died Sunday, June 21, 2009 at the age of 63. Dr. Masters fought for years with the CDC over the existence of Lyme disease in Missouri. He conducted research and published 52 scholarly papers. Full story

NEWS: AMA publishes update of guidelines process

17

Mar

The American Medical Association's on-line newspaper today printed an update of what's happening with the IDSA's review of their controversial Lyme treatment guidelines. Full story

New Lyme bill in Congress: HR-1179

25

Feb

The Lyme and Tick-Borne Diseases Prevention, Education & Research Act of 2009, was introduced this week by New Jersey Congressman Chris Smith. It calls for $100 million over five years for Lyme disease research, prevention, physician education and the formation of a federal Advisory Committee. A Senate bill is expected to be introduced shortly. Full story

Lyme Organizations: New IDSA Guidelines Panel, Unbalanced & Biased Congressman and Patient Groups Voice Concerns

30

Jan

Greenwich, CT, January 28, 2009-Patient groups voiced concern and disappointment about the new Infectious Diseases Society of America (IDSA) Lyme disease guidelines’ panel, which excludes physicians who treat patients with chronic Lyme disease. Last May, the Connecticut Attorney General found the IDSA Lyme disease treatment guidelines’ panel had conflicts of interest, engaged in exclusionary conduct, and suppressed scientific evidence. The investigation resulted in a settlement forcing the IDSA to reconstitute a balanced panel free of conflicts of interest under the oversight of an ombudsman to monitor conflicts of interest. No input from patients or treating physicians was permitted in selection. Greenwich, CT, January 28, 2009-Patient groups voiced concern and disappointment about the new Infectious Diseases Society of America (IDSA) Lyme disease guidelines’ panel, which excludes physicians who treat patients with chronic Lyme disease. Last May, the Connecticut Attorney General found the IDSA Lyme disease treatment guidelines’ panel had conflicts of interest, engaged in exclusionary conduct, and suppressed scientific evidence. The investigation resulted in a settlement forcing the IDSA to reconstitute a balanced panel free of conflicts of interest under the oversight of an ombudsman to monitor conflicts of interest. No input from patients or treating physicians was permitted in selection. Full story

California Lyme Disease Association and Lyme Disease Association Position Statement on Lyme Disease Specialty Bias in Unprofessional Conduct Actions

14

Oct

There are two schools of thought regarding the treatment of Lyme disease: IDSA and ILADS. Physician reviews for unprofessional conduct should be independent and untainted by specialty bias. If a physician is following the ILADS treatment guidelines, the appropriate review standard for unprofessional conduct is whether the physician followed the standard of care reflected in the ILADSguidelines, not those of a competing medical society [IDSA].