CALDA News, Events & Blogs

TOUCHED BY LYME: How the state of California deals with Lyme disease

13

Mar

I attended California’s Lyme Disease Advisory Committee (LDAC) meeting on Thursday. This is a group which advises the state’s health department on matters pertaining to Lyme and other tick-borne infections. The panel receives updates on what the California Department of Public Health (CDPH) is doing with regard to Lyme and discusses future projects. There was lots of information to process. Full story

TOUCHED BY LYME: How to get out of the hellhole. An open letter to Albany basketball coach Will Brown and his local reporter

13

Feb

My heart goes out to you, Coach Brown. I know how much you are suffering and I know how much your family is suffering.....But you know what? You don Full story

TOUCHED BY LYME: (Book review) Sick & Tired--How America's Health Care System Fails Its Patients

11

Feb

"Jorgensen’s personal story is (sadly) not uncommon in the Lyme world. But she uses it to demonstrate a larger point. This lady went into her Lyme journey with a Ph.D. in economics, trained to unravel bureaucratic red tape and the ins and outs of labor-related issues like health care benefits." Full story

TOUCHED BY LYME: Oscar nominators DON'T pick Under Our Skin; let's vow to keep reaching out with this film

02

Feb

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

TOUCHED BY LYME:When young adults must deal with chronic illness

20

Jan

Author Laurie Edwards explores how to best cope with chronic illness in your Twenties and Thirties. Full story

TOUCHED BY LYME: Quilting about life in the Lyme lane

04

Jan

Thirty-three year old Nani Lauriano Luculescu is a fabric artist with a vision. She wants to create a quilt—perhaps a series of quilts—to give the world a glimpse of what people with Lyme disease go through every day. And she wants YOU to help her do it. Full story

TOUCHED BY LYME: Tweeting for Lyme awareness

03

Dec

The California Department of Public Health recently solicited input from the Lyme Disease Advisory Committee regarding Twitter messages for Lyme disease awareness. You can contribute too--even if you're not from California. Full story

TOUCHED BY LYME: BPA in canned food can disrupt endocrine system

12

Nov

BPA--a toxic chemical in plastics--is often used in canning food. According to the Environmental Working Group, the substance leaches into the food from the can, and then into our bodies, where it can seriously disrupt the endocrine system. Recent research turns up troubling results. Full story

TOUCHED BY LYME: October Lyme conferences a whirl of education & activity

08

Nov

Lyme practitioners, advocates and patients descended on the Washington DC area last month, for a series of Lyme conferences and related activities. I was lucky enough to join in. Here’s a smattering of my impressions. Full story

TOUCHED BY LYME: Changing how the world sees Lyme disease

14

Oct

Here's my personal Lyme mission statement: I want to change the way the world perceives Lyme disease. One of the things that's going to help me accomplish that is the Lyme Action Program in Washington DC on Oct. 22. Full story

TOUCHED BY LYME: Easy meals for Lyme families

13

Oct

Putting healthy meals on the table can be a challenge for anybody—either by yourself or feeding a family. When the cook is sick, or tending to sick family members, the chore becomes even more cumbersome. Fortunately, two things can help. Full story

TOUCHED BY LYME: (book review) How top LLMDs treat chronic Lyme

24

Sep

In this new book by Connie Strasheim, thirteen Lyme specialists explain their healing strategies. Full story

TOUCHED BY LYME: When Lyme hits people in their twenties

21

Sep

How do college students and other young adults cope with Lyme at this transitional time of their lives, when they would hope to be finishing school, starting work, and forming new relationships? Full story

TOUCHED BY LYME: Invisible Illness Week offers "virtual conference"

11

Sep

National Invisible Chronic Illness Awareness Week is Sept. 14-20. A free "virtual conference" with many topics of interest to people dealing with Lyme can be accessed over the internet. Full story

TOUCHED BY LYME: "Ya-ya" author recounts struggle with Lyme disease

03

Sep

Bestselling author Rebecca Wells offers a new book, a website, and a poignant account of her life with Lyme disease. Full story

TOUCHED BY LYME: The “poppy motivating factor” will get you every time

01

Sep

Lost in translation? A press release I wrote two years ago for the California Lyme Disease Association has turned up on the internet in a very bizarre form. Full story

TOUCHED BY LYME: 30 things you don't know about Lyme disease

29

Aug

You may have heard of lists like “20 things you don’t know about me” making the rounds of social networking sites like Facebook. Here’s a new twist, sponsored by the organizers of “Invisible Illness Awareness Week” (September 14-20, 2009). It’s a creative way to share your story, help spread the word about Lyme disease…and maybe even win a prize. Full story

TOUCHED BY LYME: What to say to a person who’s chronically ill?

27

Aug

Lisa Copen, founder of National Invisible Chronic Illness Awareness week (September 14-20, 2009) recently asked her Twitter followers to suggest good things to say to a person who is chronically sick. Here are some of the replies: Full story

TOUCHED BY LYME: Gluten-free eating hits the mainstream

10

Aug

Many folks with Lyme find they do better if they avoid gluten-containing foods (wheat, barley, rye). As the ranks of people avoiding gluten rises, food manufacturers are starting to take notice. Yet switching to gluten-free eating can still be a challenge. Here are some tips. Full story

TOUCHED BY LYME: How to still have fun when you're energy-sapped

09

Jul

The CFIDS (Chronic Fatigue) Association of America pulled together a list of low-energy entertainment ideas. See what you think. Full story

TOUCHED BY LYME: "Under Our Skin" makers honor San Diego Lyme activist

01

Jul

CALDA member Anne Corazza of San Diego is now featured on the "Meet the Activists" page of the Open Eye Pictures website. Anne helped persuade a San Diego theater to book "Under Our Skin," and then, along with a team of volunteers, helped get the word out to the public. Box office receipts were so successful that the theater extended the movie's run for an additional week. Full story

TOUCHED BY LYME: A beginner's guide to all things Lyme

30

Jun

Almost every day, someone will post the following question on one of the many Lyme-related on-line support groups: I'm newly diagnosed (or think I might have Lyme.) How can I find out what I need to know? Full story

TOUCHED BY LYME: Parenting kids with Lyme--"one day at a time" and a two-track approach

18

Jun

Let's say your family has been through the emotional meat grinder of dealing with a child who has Lyme disease. Then, after what may be years, your child's health significantly improves. How do you return to day-to-day normalcy? How do you deal with the very real fears that symptoms may be returning? Guest blogger Sandy Berenbaum, LCSW, BCD, a Lyme-literate family therapist, discusses a game plan for this new phase of your family's life. Full story

TOUCHED BY LYME: Is having Lyme-induced MCS a criminal offense?

14

Jun

Some people with Lyme disease develop a host of related problems, like extreme sensitivity to light, sound, and various chemicals in the environment. (This last condition is called multiple chemical sensitivity, or MCS. For people who have it, being around gasoline fumes, cologne, and even clothes washed in certain detergents, can literally be life-threatening.) A California teenager with Lyme and the above-mentioned conditions recently found herself in a harrowing encounter with the law. Full story

TOUCHED BY LYME: Citizen promotion of "Under Our Skin"

18

Jun

The theatrical release of the Lyme documentary "Under Our Skin" is almost upon us. There is still time for you to help fill those theater seats! One member of an on-line support group came up with some creative ideas for getting the word out that just about anybody could do. Full story

TOUCHED BY LYME:"Virtual theater party" for Under Our Skin--be there or be square

23

Jun

I don’t know about you all, but I’m terribly disappointed that I live too far away to attend any of the moviehouses showing Under Our Skin this week. After all, the theatrical release of this film is one of the biggest events to hit the Lyme world, ever. So, I’m making up for it by throwing a “virtual” theater party…and I hope you’ll join me. Full story

TOUCHED BY LYME: Beauty and pain intertwined

10

Jun

ATTACK—A STORY OF LYME DISEASE is a most unusual group of photographs on display in the central California coastal town of Arroyo Grande. The pictures are the work of Cal Poly student photographer Brianna Nosler, who did them as her senior project. Because Brianna is majoring in Art Design, the images have almost a high fashion quality to them. Yet the story they tell is devastating, gritty, and real. Full story

TOUCHED BY LYME: More about schooling kids with Lyme

02

Jun

My recent blog posting about the educational challenges faced by children with Lyme disease prompted a thoughtful letter from Lyme-literate psychotherapist Sandy Berenbaum. Her years of counseling families dealing with Lyme disease has given her extensive insight into how schooling enters into the picture. Read her letter here. Full story

TOUCHED BY LYME: Fill a theater, change the world....

29

May

The long-awaited theatrical release of the Lyme documentary Under Our Skin is almost here. The film opens at New York’s IFC Center on June 19 and at Beverly Hill’s Laemmle Music Hall Theater on June 26. Although other cities are on the list, these first two are of primary importance. How the film does in New York and Los Angeles will dictate how widely it will be picked up nationwide. Big crowds on the opening weekends in these two cities will prompt more and more theaters across the country to book the film. Full story

TOUCHED BY LYME: Sit right down and write yourself a letter....

20

May

Here’s an easy way to help get the word out about Lyme disease. Costs nothing, and virtually anyone can do it. Write a letter to the editor of your local small-to-medium sized paper. (Unfortunately, it’s harder to get them printed in really big newspapers, like the Los Angeles Times or the Washington Post. But smaller papers typically are looking for that local touch.) Full story

TOUCHED BY LYME: Lyme awareness for under 5 bucks

07

May

An eight-step method for raising awareness at your public library. Full story

TOUCHED BY LYME: The dirty dozen and the clean 15

07

May

Like many people dealing with Lyme disease, my family tries to choose organic produce whenever possible. There’s plenty of research to show that pesticides are harmful to human health, even for people who aren’t fighting chronic illness. And for those who are sick, adding the toxic burden of pesticides makes getting well that much harder. Full story

TOUCHED BY LYME: What about school?

05

May

When school-age children and teens fall ill with Lyme disease, there are many additional complications besides obtaining proper medical care. (That’s hard enough….) Another big problem is what to do about school. When attending regular school becomes out of the question, parents find themselves scrambling for alternatives. Full story

TOUCHED BY LYME: Lyme Disease Rocked Our Family

29

Apr

An off-hand question from a neighbor was eerily prophetic. Full story

TOUCHED BY LYME: When a medical problem calls for non-medical help

10

Apr

I recently received a phone call from a mom whose two teen-aged sons are terribly ill with Lyme and coinfections. In addition to all the medical and emotional issues her family is dealing with, she’s also concerned about schooling, since one of her sons is too sick even for homebound instruction. Full story

TOUCHED BY LYME: Kids need to feel safe and protected, and so do their families (Guest blog by Sandy Berenbaum)

10

Apr

When I started my psychotherapy practice 22 years ago, specializing in adolescents and families, I recognized that, as a mother and as a psychotherapist, the core of my philosophy about children is that they need to feel safe and protected. Actually they need to be safe and protected. Four years later, when I started seeing children and adolescents with Lyme disease (one year after my own diagnosis), I realized that, in the world of Lyme, many patients do not feel safe and protected. Full story

TOUCHED BY LYME: Lymelife for Dogs

09

Apr

There’s a scene in the Lyme documentary Under Our Skin, where somebody demonstrates how to “flag” for ticks. With his trusty long-haired dog trotting through the woods beside him, the man drags a big white cloth alongside the trail, and shows the camera how quickly and easily he picks up ticks. I’ve seen the movie several times, and whenever I get to that part, I silently scream at the guy, “What about the dog? Take care of the dog!” Full story

TOUCHED BY LYME: A political and medical snake pit

19

Mar

I’m always looking for new ways to explain to people the complex world of Lyme disease. Not only is the illness itself biologically complex, able to manifest in countless different ways, but the history and politics of this particular disease muddy the picture even more. Full story

TOUCHED BY LYME: Lyme Awareness Trifecta at California nurses’ conference

14

Mar

Nurse practitioners had three opportunities to learn about Lyme disease at a recently concluded statewide conference in Sacramento: Full story

TOUCHED BY LYME: No Lyme in California?

12

Mar

Today I attended California's Lyme Disease Advisory Committee meeting in Sacramento. It's a group which advises the state health department on tick-borne disease issues. I made the following remarks to the committee during the public comment period. Full story

TOUCHED BY LYME: Did Lyme contribute to killing of pastor?

09

Mar

The eyes of the Lyme community are riveted on this week’s tragic shooting death of an Illinois minister. The alleged shooter, 27-year-old Terry Sedlacek, has reportedly suffered from neurological Lyme disease for years, and some people believe his illness may have contributed to his violent behavior. Full story

TOUCHED BY LYME: Financial help for Lyme drugs?

05

Mar

Sooner or later, anyone dealing with Lyme disease comes face to face with the high cost of prescription medicines. Even those who start out with insurance coverage for drugs may find their benefits run out before their need for them does; or the medicines they require aren’t covered on their plan; or the co-pay for certain drugs is inordinately high. Then there are patients who flat out have no insurance coverage for drugs at all. Full story

TOUCHED BY LYME: "Beating Lyme"

02

Mar

The task for an author who wants to write a book about Lyme disease is daunting. This is due not only to the complex illness itself, which can manifest in literally hundreds of ways, but to the complicated history and politics which keep Lyme disease in a separate category from other medical conditions. Full story

TOUCHED BY LYME: Lyme-Autism connection?

25

Feb

A few years back, Tami Duncan was a mother of an autistic son, searching for ways to help her child. As it happened, she also had ill-defined health problems of her own. Like many of us who couldn’t find answers elsewhere, she turned to the internet. Early on, she connected with other moms of autistic kids…discovered many of those kids were testing positive for Lyme disease…found out she and her son both had Lyme …and ended up starting the Lyme-Induced Autism Foundation (LIA). Don’t let the word “autism” turn you away if that isn’t your family’s specific issue. LIA has a wealth of information for anyone dealing with the complexities of chronic illness, especially tick-borne infections. Full story

TOUCHED BY LYME: Ticks in the snow

18

Feb

The photo to the left is an engorged Ixodes Pacificus, otherwise known as the western black-legged tick, notorious carrier of Lyme disease, sitting on snow one November day in Shingletown, California. The picture was snapped by professional photographer Michelle Mahood, moments after plucking the insect from her dog, who had been frolicking in the snow. It’s Michelle’s answer to all those medical professionals who perpetuate the delusion that ticks are never a problem in winter. Full story

TOUCHED BY LYME: Wisdom of the Lyme Crowd

14

Feb

As a Lyme support group leader, the first piece of advice I give anyone dealing with tick-borne infections is to join at least one on-line support group, such as CaliforniaLyme. The reason? In the topsy-turvy world of Lyme disease, people who have traveled this difficult road before you are a priceless resource. Full story

TOUCHED BY LYME: Disbelieving Lyme disease

13

Feb

A mom I know whose whole family has struggled with Lyme disease for over 20 years called me after my recent posting about teenagers with Lyme and said: “More than anything, teenagers with Lyme need you to believe them. So many people—doctors, teachers, school friends—don’t believe these kids are really sick. You have to stay squarely in their corner. You may be the only one.” Full story

TOUCHED BY LYME: When teenagers have Lyme disease

08

Feb

Dealing with Lyme disease and other tick-borne infections is a miserable ordeal at any age, but it offers unique challenges when the person going through it is a teenager. Full story

TOUCHED BY LYME: Lyme in them thar zip codes

05

Feb

A steady stream of responses has flowed into my email box regarding my previous blog post “No Lyme in (your zip code here).” What follows are quotes from your different emails: Full story

TOUCHED BY LYME: A whole ’nother ball game

31

Jan

In the chaotic early days of my daughter’s illness, when we trying to make sense of her bizarre symptoms and the equally bizarre reactions we were getting from the medical establishment, I didn’t want to read about the history and controversy surrounding Lyme disease. I just wanted somebody to figure out what was wrong with her and fix it. You’ll often find the same response from “newbies” in the on-line support groups. “Don’t give me a history lesson. Just tell me how to get well.” When people develop cancer or diabetes or any number of other conditions, they don’t have to read a book about the history of the disease in order to find appropriate treatment. Unfortunately, Lyme disease is a whole ’nother ballgame. With Lyme disease, you will never understand what you are up against if you don’t educate yourself about the convoluted history of this complex illness. Full story

TOUCHED BY LYME: A roadmap for Lyme disease

27

Jan

When my family and I needed to quickly come up to speed about Lyme disease several years ago, I looked for a book that would take me by the hand and explain all the complex stuff I needed to know. I never found one at the time. I wish I’d had a copy of The Lyme Disease Solution, by Kenneth Singleton, MD, MPH. (Brown Books, 2008). Dr. Singleton himself suffered from undiagnosed Lyme disease for eight years. Now, having recovered his own health, he works as a Lyme disease specialist in Maryland. Full story

TOUCHED BY LYME: No Lyme in (your zip code here)

25

Jan

Several years ago when my daughter first came down with mysterious disabling symptoms that no doctor could diagnose, my neighbor said, “Sounds like it could be Lyme disease.” I knew next to nothing about Lyme, but added it to my list of questions for the doctor. Full story

TOUCHED BY LYME: Like Alice Down the Rabbit Hole

23

Jan

I fell into the alternate reality of Lyme disease four years ago when, seemingly overnight, my teenage daughter became seriously debilitated and none of the medical specialists we took her to could figure out what was wrong. Full story