News, Events & Blogs

TOUCHED BY LYME: "IDSA Guidelines, will you please go now!"

26

Jan

With apologies to Dr. Suess. Full story

TOUCHED BY LYME: (guest blog) Remembering Elyssa Harte, ND

19

Jan

Elyssa Harte, a much-loved and respected Lyme-literate Naturopathic doctor, died from a fall in her home on January 7. Full story

TOUCHED BY LYME: A beginner's guide to learning about Lyme disease

16

Jan

I get contacted all the time by people seeking information about Lyme disease. Here's my updated resource list I share with anyone who asks. Full story

TOUCHED BY LYME: IDSA gives its response to flood of Facebook postings

08

Jan

Last week, I contacted the IDSA's media spokesperson for a reaction to the deluge of postings on the organization's Facebook page. Here's her response. Full story

TOUCHED BY LYME: Teaching families how to protect themselves from tick diseases

08

Jan

This RN and Lyme survivor uses puppets, songs, and positive messages to teach children—and adults—how to prevent tick-borne illness Full story

TOUCHED BY LYME: How other pathogens complicate chronic Lyme treatment

08

Jan

Dr. Christine Green will discuss coinfections at LymeDisease.org's upcoming conference, "Getting Healthy Again: Using Integrative Medicine to Heal from Lyme Disease," in San Francisco January 22. Full story

TOUCHED BY LYME: IDSA learns what it means to “go viral” on Facebook

05

Jan

IDSA gets an earful from Lyme patients on the organization's Facebook page. But will they pay any attention? Full story

TOUCHED BY LYME: Her son’s “nightmare of illness” led her to path of helping others heal from Lyme

02

Jan

Ann Corson, MD, one of the speakers at LymeDisease.org’s Jan. 22 Lyme patient conference in San Francisco, knows what the parents of her young Lyme patients go through. Back in 2001, she was working as a family practice physician in Chester County, PA, when her son was bitten by a tick—and their whole world changed. Full story

TOUCHED BY LYME: (book review) Thalia "growing stronger" after Lyme

02

Jan

Entertainment superstar Thalia talks about having Lyme disease in her recent memoir "Growing Stronger." Full story

TOUCHED BY LYME: "Night before Lyme Christmas"

24

Dec

A holiday poem by Bob Morgenstern Full story

TOUCHED BY LYME: Those ticks on Tilden Park's picnic tables

14

Dec

Researchers looking for nymphal ticks at this prominent northern California destination found them in unexpected places, including on and underneath wooden picnic tables and benches. Full story

TOUCHED BY LYME: A program that can help you pay for Lyme treatment

11

Dec

Prescription Hope offers a way for patients with financial hardship to obtain low-cost prescription medications. Full story

TOUCHED BY LYME: Working to get Lyme disease off the "most censored" list

10

Dec

When Lyme patient/advocate Liz Karkoff, of Tarrytown, NY, recently read that Lyme is one of the "Top 25" most censored news stories of 2011, she decided to do something to change that. She contacted a local reporter, who published a story about her Lyme experience and the difficulties of getting properly diagnosed. She encourages other people in small towns to do the same. Full story

TOUCHED BY LYME: "Project Censored" lists Lyme disease epidemic as one of 2011's most under-reported stories

04

Dec

Every year, "Project Censored," a news-monitoring research program affiliated with Sonoma State University in California, produces a Top-25 list of underreported news stories. These are also included in an annual book, "Censored," dedicated to news stories that ought to be widely reported but are not. Full story

TOUCHED BY LYME: (book review) When yeast takes over your body

29

Nov

"The Body Ecology Diet: Recovering Your Health and Rebuilding Your Immunity" offers a road map for getting candidiasis under control. Full story

TOUCHED BY LYME: Important Lyme book now available free on Google Books

29

Nov

"Insights into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies," by Connie Strasheim, is now available for free reading on-line. Full story

TOUCHED BY LYME: (book review) Out of the Woods: Healing Lyme disease--Body, Mind & Spirit

13

Nov

A personal memoir of recovering from Lyme disease. Full story

TOUCHED BY LYME: (book review) Nature's Dirty Needle

05

Oct

A Lyme-literate nurse practitioner writes about chronic Lyme disease. Full story

TOUCHED BY LYME: (guest blog) Adapting to Lyme life requires patience, courage & a spiritual shift

02

Oct

Ten personal discoveries about living with chronic Lyme. Full story

TOUCHED BY LYME: Los Angeles Lymewalk included art & poetry

02

Oct

An artist/Lyme survivor named Marc brought his easel to the LA Lymewalk and made caricature sketches of participants. This one is of event co-leader Tracey Silver. Tracey also wrote a poem for the occasion. Full story

TOUCHED BY LYME: "Who am I when I can't do what defines me?"

30

Sep

“Forms of Identification,” an independent short film based on the experiences of a dancer with Lyme disease, will screen at this month’s prestigious Marbella International Film Festival in Spain. Full story

TOUCHED BY LYME: How can you live with yourselves, IDSA?

24

Sep

Examining the huge disconnect between actual Lyme patients and those who set medical policy. Full story

TOUCHED BY LYME: Who gets the Lyme research funding, anyway?

22

Sep

The 2011 CALDA Lymewalks are raising money for scientific research into Lyme and tick-borne diseases. Here's where the money goes. Full story

TOUCHED BY LYME: IVs remain financial stumbling block for many Lyme patients

15

Sep

Long-term intravenous antibiotic treatment for Lyme disease is very expensive and often not covered by health insurance. One Wyoming couple found it pays to shop around. Full story

TOUCHED BY LYME: Triathlete beats back Lyme a second time; she'll share her story at Sacramento Lymewalk

12

Sep

Pamela O'Kane's remarkable Lyme story took a challenging turn after last year's Lymewalk. Full story

TOUCHED BY LYME: Lyme activist wins $10,000 scholarship for her advocacy work

13

Sep

She submitted a winning video. Full story

TOUCHED BY LYME: Filing for disability benefits when you have Lyme disease

11

Aug

Guest blogger & Lyme advocate Barbara Arnold, an attorney who practices disability law in Berkeley, CA, explains some of the factors involved when a Lyme patient files for SSDI. Full story

TOUCHED BY LYME: "Chronic Lyme disease steals life."

10

Aug

Laurie Martin, a Californian who has struggled with both tick-borne infections and colon cancer, states that cancer "pales" in comparison to the pain and suffering of Lyme disease. She asks friends and family to join her in donating money for Lyme research. Full story

TOUCHED BY LYME: Casting about for a new way to look at Lyme

04

Aug

A Lyme patient finds that a cast on her foot changes everything. Full story

TOUCHED BY LYME: Here's my tweet to the president. What’s yours?

04

Jul

President Barack Obama is holding a Twitter Town Hall on Wednesday, July 6, at 2 pm eastern time. Full story

TOUCHED BY LYME: Letters to the editor are a simple way to make a point

02

Jul

Writing a succinct letter to your local newspaper can be a good way to get started with Lyme activism. Here are a few other suggestions. Full story

TOUCHED BY LYME: (guest blog) When Lyme shatters your family

27

Jun

Tom Feldman, whose daughter became seriously ill at a young age, discusses his family's harrowing journey through Lyme disease. Full story

TOUCHED BY LYME: Answering the question "What can I do to help?"

17

Jun

When you and/or members of your family are chronically ill, there may be friends and family members willing to help out. But responding to and coordinating such offers of help can seem too overwhelming. Here's a way to make the process work more smoothly. Full story

TOUCHED BY LYME: (guest blog) How to ask for help when you're sick

16

Jun

Toni Bernard, JD, the author of the award-winning book, "How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers," blogs about something that is difficult for many Lyme patients--asking others for help when you need it. Full story

TOUCHED BY LYME: (book review) One woman's journey through Lyme disease

20

Aug

“I was a strong, hardworking woman raising a family, helping my husband with his business, mowing four acres of yard every week, gardening, and holding a job down. I felt like superwoman.” Full story

TOUCHED BY LYME: When pain is simply unbearable

10

Jun

As a kid growing up in southern California in the 80s and 90s, Bryan Bower was a bit of a daredevil: BMX biking, rollerblading, skateboarding, snowboarding—never a show-off, but always pursuing his jumps and thrills. As a college student, he discovered a new passion, rock climbing. He went everywhere with his new best friend and climbing buddy Rhyan. Joshua Tree, Tahquitz, The Needles and Malibu Canyon were southern California favorites. In his early 20s, Bryan started training to climb Yosemite's El Capitan, practicing with one of those folding ledges that you haul up and sleep on when you’re half way up the 3,000-foot granite face. All that came to a screeching halt about six years ago Full story

TOUCHED BY LYME: Maneuvering the medical maze

13

Jun

I often tell new Lyme patients that two of the most important tools for fighting this disease are a three-ring binder and a hole punch. By this I mean it’s essential to keep good records. Get copies of everything—lab tests, medical procedure reports—and stick them in your binder, keeping this important information easily accessible. Now, somebody has come along to improve on this idea considerably. Full story

TOUCHED BY LYME: How to save money on certain Lyme-related lab tests

27

May

Paying out-of-pocket for lab testing can take a hefty toll on your family’s pocketbook. Here’s one way to save. Full story

TOUCHED BY LYME: Bringing in "Charlie Brown" to support the Lyme community

23

May

Combining her love of the theater with a desire to support the Lyme community, this student actor is staging a production of "You're a Good Man, Charlie Brown" in Atherton in June. Full story

TOUCHED BY LYME: Taking Lyme awareness into Berkeley's Tilden Park

23

May

Volunteers from East Bay Lyme Education & Patient Support (LEAPS) handed out Lyme literature and free tick repellent to recreationists at Tilden Regional Park on Sunday, May 22. Notice in the photo that the man on the right is standing with his IV pole. Full story

TOUCHED BY LYME: (guest blog) Proper tick removal, early treatment can reduce risk of disease

13

May

Is fear of Lyme and other tick-borne illnesses keeping you from outdoor activities? Maryland Lyme advocate Lucy Barnes addresses this very real concern. While her remarks are tailored to the Eastern Shore region, they offer useful advice for the rest of the country as well. Full story

TOUCHED BY LYME: Can you boil down your Lyme message to just a few words?

11

May

If you just had a couple of seconds to teach somebody about Lyme disease, what would you say? A group of Lyme activists in Sturbridge, MA, distilled their message to this: “Lyme test negative? It may still be Lyme disease!” They added their web address for more information, and posted all this on a big billboard next to the Massachusetts Turnpike, near Springfield. Full story

TOUCHED BY LYME: Why one Minnesota PBS station yanked UNDER OUR SKIN

03

May

WDSE-WRPT, a PBS affiliate in Duluth, Minnesota, initially scheduled a May showing of the Lyme documentary. Learn why the station then changed its mind. Full story

TOUCHED BY LYME: (guest blog) Sleepless in Berkeley: how Lyme messes with your head and your heart

28

Apr

Guest blogger Bob Cowart, who has been diagnosed with both neurological Lyme disease and Parkinson's, articulates some everyday realities of dealing with those conditions. He dictated this article into his computer. Full story

TOUCHED BY LYME: After “Rambo daughter” succumbs to Lyme, dad dedicates himself to teaching others

26

Apr

He called Lori his "Rambo daughter," a strong athletic soldier who liked to run marathons. But after a tick bite gave her Lyme disease none of this dad's efforts could save her life. Now, he channels his grief into educating others about how to prevent the spread of tick-borne illnesses. Full story

TOUCHED BY LYME: "Welcome to the Lyme wars, Janessa!"

13

Apr

(Book review) Who knew the IDSA Lyme treatment guidelines could be fodder for a rip-snorting mystery story? Full story

TOUCHED BY LYME: Hope for those who have fallen through the medical cracks

06

Apr

(Book review) In his book, ON HOPE AND HEALING: FOR THOSE WHO HAVE FALLEN THROUGH THE MEDICAL CRACKS, Dr. Neil Nathan uses the tools of both western and alternative medicine to explore how chronically ill people can return to health. Full story

TOUCHED BY LYME: Lyme advocates use Facebook to make global statement

25

Mar

When Liz Schmitz, of the Georgia Lyme Disease Association, used Facebook to locate other Lyme advocacy groups, she not only found scores of them in the United States, but a significant number in other countries. Among nations she found represented on Facebook are Canada, Ireland, the United Kingdom, Poland, Australia, France, Germany, Greece, Norway and South Africa. Full story

TOUCHED BY LYME: Lyme education outreach for San Francisco cabbies

22

Feb

Robin Krop, a San Francisco Lyme activist, finds herself riding taxis several times a week, because she has a bad hip and bouncing buses are too uncomfortable. Before she gets in the cab, she asks the driver if his shock absorbers are in good shape. If he says they are, then she gets in and instructs him to take only the most smoothly surfaced roads (she knows which ones they are) so it will be easier on her hip. At that point, he usually says, “What’s wrong with your hip?” And she answers, “I have Lyme disease. Have you ever heard of it?” Full story

TOUCHED BY LYME: Foundation shines light on Lyme in Australia

04

Feb

The widow of a man who died from complications of Lyme--even though officials say the disease doesn't exist in Australia--has formed a foundation in his memory. The Karl McManus Foundation aims to help increase recognition of tick-borne diseases in Australia, so that patients can get properly diagnosed and treated. Full story

TOUCHED BY LYME: Got Lyme? In your 20s and 30s? Try Healkick.

27

Jan

A new group has been formed for young adults dealing with neuroimmune conditions such as chronic Lyme disease, chronic fatigue syndrome (ME/CFS), fibromyalgia, atypical MS, multiple chemical sensitivities, and mold illness. Full story

TOUCHED BY LYME: Helpful book about everything to do with PICC lines now available free on the internet

20

Jan

(Book review) INFUSING FOR LYMIES: A step-by-step guide with money-saving tips for buying and infusing IV medications, maintaining a PICC line, minimizing the herx reaction, insurance denials and more. (Note: this blog has been updated with new information as of Jan. 25.) Full story

TOUCHED BY LYME: Florida patients protest local reprinting of now-infamous Chicago Tribune article; "There's been enough bashing of Lyme patients."

17

Jan

A small band of Florida Lyme patients gathered outside the offices of the Orlando Sentinel newspaper Friday, to protest its reprinting of the Chicago Trib's accuracy-challenged article about chronic Lyme disease. Full story

TOUCHED BY LYME: Overcoming the "dork factor" when it comes to tick protection

16

Jan

We've all read this advice hundreds of times. The official word for anyone venturing into tick habitat--from the CDC, our state health department, and even CALDA itself, is to "tuck your pants into your socks." The idea is to prevent ticks from getting access to your skin. But even though I've actually repeated this advice myself, it never rang true for me. It never seemed practical. And sometimes, not even possible. Your pants would have to be long enough, and your socks would have to be high enough, with extra room to accommodate movement. And that's not even taking into account the dork factor. I can visualize the eye-rolls this advice would engender from anybody over eight years old. So, that's why I was pleasantly surprised to come across this item on a website for hiking gear--permethrin-treated gaiters. Full story

TOUCHED BY LYME: New cookbook provides road map for Lyme Inflammation Diet

14

Dec

Most people dealing with Lyme eventually come face to face with the need to improve their diet. It may include going gluten-free, and/or eliminating assorted other food allergens, and/or finding ways to incorporate more organic, fresh produce into their daily meals. The simple fact is, what you eat has a tremendous effect on how well you can fight back from chronic illness. However, it’s also a fact that, when you’re sick, it can seem well-nigh impossible to make fundamental changes in your diet. Full story

TOUCHED BY LYME: Only 55 Lyme cases in California? Really?

16

Nov

Fifty-five (55) is a remarkable number. Did you know it’s the sum of the numbers 1-10? 55 is the speed limit in some places. And it’s the international direct dial telephone code for Brazil. Here’s something else about 55. According to California health officials, it’s how many new cases of Lyme disease the state saw in 2009. (When I learned this at today’s Lyme Disease Advisory Committee (LDAC) teleconference, I hit the mute button on my phone and started screaming. ARRRRRGHHHHH! I actually haven’t stopped. Can you hear it?) Full story

TOUCHED BY LYME: Former "Sopranos" actress to speak at Los Angeles Lymewalk

30

Sep

Lyme disease almost wiped out Tracey Silver's acting career before it really got started. However, after three tough years of treatment, she improved enough to land a recurring role on the popular TV show "The Sopranos." She'll speak about the ups and downs of her own Lyme experience, as well as the critical need for more Lyme research, at the LA Lymewalk October 3. Full story

TOUCHED BY LYME: Letter to Colby's Grandpa tells greater Lyme story

28

Sep

Readers of this column recently learned about Colby Lenz, a remarkable San Francisco woman experiencing both severe neurological Lyme disease and a brain condition called chiari malformation. As she awaits brain surgery, she uses her time to help educate the world about Lyme disease via the internet. Recently, on her blog, she wrote an open birthday letter to her 90-year-old grandfather. In this poignant message between generations, she eloquently offers a window into the hard economic realities faced by many Lyme patients. She has given permission for this blog to be re-posted here. Full story

TOUCHED BY LYME: After a 62-mile bike ride for Lyme research, she’ll be at SF Lymewalk Sept. 26

24

Sep

For over 10 years, Carol E. was too fatigued to ride a bicycle at all. Now, after Lyme treatment, she’s cycling—and walking—to increase public awareness, as well as raise money for Lyme disease research. Full story

TOUCHED BY LYME: How the IOM is connected to the 2010 CALDA Lymewalks

23

Sep

I leave it to my blogging colleague, the Lyme Policy Wonk, to explain the disturbing details surrounding the Institute of Medicine's upcoming Lyme workshop. But I offer a few observations, because the issue directly affects something I’m heavily involved in—the 2010 CALDA Lymewalks. Full story

TOUCHED BY LYME: Los Angeles Lymewalk is rallying point for “Team Ashlyn Levin”

16

Sep

Ashlyn Levin turns 20 this week, hospitalized since suffering cardiac arrest in July. It’s the latest chapter in a harrowing Lyme journey that started more than four years ago. A group of her friends who have been helping in the background all along are now mounting a public show of support for Ashlyn. They have already raised more than $2000 in her name for Lyme disease research via a CALDA fundraising page. And have recruited more than 30 people to walk in her honor at the Los Angeles CALDA Lymewalk in Santa Monica October 3. Full story

TOUCHED BY LYME: (guest blog) Poppy seeds are much easier to spot than nymphal ticks

15

Sep

Phyllis Mervine, president and founder of the California Lyme Disease Association, recently felt a tickle on her neck...and found a nymphal tick. Knowing that nymphs are often compared to poppy seeds, she collected some poppy seeds from her garden and put them on the same card with the tick. The picture which accompanies this blog is a photo of the tick and the poppy seeds. Here's her account of the episode. Full story

TOUCHED BY LYME: Brain swelling and activism converge for San Francisco Lymewalk

08

Sep

Scheduled for brain surgery in November, Lyme patient Colby Lenz raises money for Lyme disease research. Full story

TOUCHED BY LYME: After battling Lyme disease, athlete en route to Budapest for next week's World Triathlon Championships

03

Sep

After almost dying from Lyme disease, Pamela O'Kane will run, swim and bike in world class competition in Budapest, Hungary. Full story

TOUCHED BY LYME: (Guest blog) Stanford investigates Lyme, Parts 1 and 2

30

Aug

Stanford doctors who've been investigating Chronic Fatigue are now taking a look at Lyme disease. And another department at Stanford is investigated the symptoms of chronic Lyme. Alix, a Lyme patient who blogs for the "SpiroChicks" website, takes a look at what may be a change of attitude. Full story

TOUCHED BY LYME: Where money for Lyme research goes

22

Aug

When we started publicizing that the 2010 CALDA Lymewalks are raising money for research, many people asked us what kind of research we are funding. It’s a fair question. Here’s a run-down on current research projects funded by CALDA. Full story

TOUCHED BY LYME: Transforming CALDA's message into a fashion statement

21

Aug

Fiber artist/Lyme advocate Nani Lauriano Luculescu takes a CALDA T-shirt and turns it into a stunning piece of wearable art. Full story

TOUCHED BY LYME: Son mourns parents lost to murder-suicide and chronic Lyme

16

Aug

On July 8th, police in Ocala, Florida, made a shocking discovery in a travel trailer at the side of a highway--the bodies of 48-year-old George Strobos and his 49-year-old wife Jonalyn. It turns out the couple, both suffering from advanced Lyme disease, had taken their own lives. Last night, their son, Michael Strobo, of Austin, Texas, made a series of heartfelt postings about his parents on the CALDA Facebook page. Michael subsequently gave me permission to re-post his writings here. Full story

TOUCHED BY LYME: Tick-borne mystery in Folsom, CA. Can you say “tularemia”?

27

Jul

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

TOUCHED BY LYME: Meredith raises $1500+ for Lyme research in one week...and is still going strong

26

Jul

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

TOUCHED BY LYME: (book review) "How to be sick"

22

Jul

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

TOUCHED BY LYME: The nuts and bolts of Lyme awareness outreach

01

Jul

Anne Mears, a Lyme activist from southern California, shares practical advice about setting up a Lyme display at a public event. Full story

TOUCHED BY LYME: "Under Our Skin" producer says cronyism and conflicts of interest have stymied Lyme research

21

Jun

Kris Newby, senior producer of the awarding-winning Lyme disease documentary, recently addressed the Institute of Medicine's listening session for "The State of the Science" of Lyme and other tick-borne infections. She observed that Lyme research has been tightly controlled by the same lead IDSA Lyme guidelines authors for the last 20 years--while we still have no reliable testing and no effective treatments for patients who fail the IDSA protocols. Full story

TOUCHED BY LYME: Daughter uses Mom's Lyme testimony to educate her co-workers; You can, too.

18

Jun

Last week, Lyme Times assistant editor Pam Cocks testified via telephone before the Institute of Medicine. Her adult daughter, Lizzy Cocks, sent the following message to her co-workers, to help educate them about Lyme disease. Full story

TOUCHED BY LYME: Those controlled studies cited by the IDSA Lyme guidelines included only 221 patients

16

Jun

More testimony given to the Institute of Medicine about Lyme disease. Lyme Times Associate Editor Pam Cocks, the mother of two adult children with Lyme, points out that all of the controlled trials cited by the IDSA guidelines involved a mere 221 patients. Full story

TOUCHED BY LYME: "How many people will have to suffer before our society does something?"

16

Jun

Northern California Lyme activist Sylvianne Schwartz took part in the Institute of Medicine's June 15 "listening session" regarding Lyme disease. Here's the text of her remarks. Full story

TOUCHED BY LYME: A California mom tells the Institute of Medicine how the IDSA Lyme guidelines hurt her family

15

Jun

A California mother tells the Institute of Medicine: "Had we continued to listen to the IDSA-informed physicians, we would still have a disabled son and a very ill family." Full story

TOUCHED BY LYME: Lyme patients need treatment options

15

Jun

The Institute of Medicine, part of the National Academy of Sciences, is in the midst of taking a look at Lyme disease. In April, the IOM heard from various scientists. Today, the IOM committee held the second of several "listening sessions" via telephone conference call, which allowed Lyme patients and advocates to offer their opinions as well. Here's what I told the committee. Full story

TOUCHED BY LYME: More comment about school disallowing Lyme teen's photo in yearbook

23

May

A Pennsylvania school district is making life even more difficult for a light-sensitive Lyme patient. Family therapist Sandy Berenbaum, who specializes in helping Lyme families deal with the school system, offers her perspective. Full story

TOUCHED BY LYME: Pennsylvania school district won't let light-sensitive Lyme patient have specially made picture in the yearbook

21

May

Any light brighter than a cell phone's glow causes seizures for this teenager with Lyme disease. Yet she wants a graduation photo in the school yearbook. Unfortunately, school officials won't allow the inventive solution she devised. Full story

TOUCHED BY LYME: Homeschooling with chronic illness

21

May

What to do about schooling is one of the most frustrating challenges facing families of children with Lyme disease. Full story

TOUCHED BY LYME: Like the "Kevin Bacon Game"--making Connecticut connections for Lyme patients

18

May

Even if you don’t live in Connecticut and don’t know anybody in Connecticut, you probably know somebody who DOES know somebody in Connecticut. We need to find those people--pronto. Full story

TOUCHED BY LYME: Nutritional strategies for healing from Lyme disease

16

May

(Book review) Improving diet may be one of the most important steps a Lyme patient can take on the road back to health. Full story

(Guest blog) Listening to a ghost: Dr. Dave Martz talks about recovering from ALS

03

May

"Spirochick Alix" blogs about Dr. Dave Martz's presentation at CALDA's recent Lyme patient conference. Hearing how he overcame ALS touched her especially, because her father died of ALS the same year Dr. Martz was diagnosed with it. Full story

TOUCHED BY LYME: Dr. Dave Martz, who overcame his own ALS death sentence with Lyme treatment, will keynote CALDA conference April 24

14

Mar

As Dave Martz lay dying, an idea serpentined around his mind and would not loosen its grip: Despite the absolute diagnosis and the insistence of the doctors, including a world expert, that he was dying of ALS, despite his own vow to face things head-on and reject the lure of denial, Martz couldn’t shake the notion that possibly, just maybe, he actually had Lyme disease. (from "Cure Unknown: Inside the Lyme Epidemic," by Pamela Weintraub.) Full story

TOUCHED BY LYME: The spectrum of Lyme disease

07

Apr

Dr. Christine Green will discuss "The Many Faces of Lyme Disease" at CALDA's upcoming April 24 patients' conference GETTING HEALTHY AGAIN IN 2010. Full story

TOUCHED BY LYME: Research offering hope to Lyme patients

10

Apr

Dr. Raphael Stricker will discuss important research projects which offer hope to those with tick-borne diseases, at CALDA's upcoming Lyme patients' conference. Full story

TOUCHED BY LYME: Inflammation--Taming the Fire

16

Mar

“Inflammation is a bonfire produced by the immune system in reaction to allergies, infections, poor diet, chemicals, heavy metals, and intestinal dysbiosis. It is the inflammatory response that produces many of the symptoms of Lyme disease.” Full story

TOUCHED BY LYME: Teens with Lyme--Finding the light IN the tunnel

23

Mar

To a teenager mired in the muck of an all-encompassing chronic illness, the promise of a better life at some distant point in the future can seem impossibly remote. Full story

TOUCHED BY LYME: Letterman and Stiller, you guys are WRONG

24

Mar

Actor Ben Stiller discussed his knee problems and the fact that he hoped it was Lyme disease (since he seems to think that’s a minor problem) on the David Letterman show. Letterman and he also both agreed that Lyme wasn’t a California problem, just an “east coast thing.” Full story

TOUCHED BY LYME: When loved ones won't heed our hard-earned advice

16

Mar

What should you do when you think a loved one might have Lyme disease, but they just don't want to hear about it? Full story

TOUCHED BY LYME: Good ideas for Lyme Awareness Month

22

Mar

Any month can be a good time to raise awareness of Lyme disease, but May is Lyme Disease Awareness Month and offers special opportunities. Full story

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

13

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?

04

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

26

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