September 2014 Lyme Vigil in New York City


Here’s a press release about the vigil starting on Wednesday. Those who can’t be there, including family and friends, can still be part of this vigil. Remember, no matter where you live,  you can participate from home.


Lyme Activists to Speak Out at New York Times with Silence Against Silence

Wednesday, 03 September 2014 11:04

By Jessica Bernstein,

SpeakOut Press Release


New York, NY—On Wednesday, September 17, 2014, Lyme disease patients from around the US will unite at the headquarters of the New York Times to call for greater coverage of the Lyme disease pandemic.


Lyme patients are using the New York Times as a symbol for the media as a whole to bring attention to the general underreporting of this public health crisis. By holding a silent vigil, Lyme patients are speaking out with silence against the silence.


“Increased media coverage will mean the difference between crippling debilitation and a normal life for hundreds of thousands of people. Greater public awareness can lead to prevention and increased funding for research, and that’s our goal with this event,” says Jill Auerbach, Chairperson of the Hudson Valley Lyme Disease Association.


Butoh dancers from the Vangeline Theater in Brooklyn will be performing at the vigil in support of raising awareness. Dancers will be dressed in white and will perform in silence, as an expression of the silent suffering of Lyme patients.


In 2013, the Centers for Disease Control (CDC) announced that rather than 30,000 new Lyme cases annually, there’s an estimated 300,000.


But other Lyme disease experts estimate that there are likely 1 to 2 million new cases per year.


Despite the rapidly escalating rates, the media has given Lyme significantly less coverage than other diseases that are less prevalent in the US.


A Google news archives search shows 12,100 results for “Lyme disease” in contrast to 117,000 for “HIV.”


Annual rates of Lyme disease far exceed annual rates of HIV in the United States by sixfold. Dr. Marc Conant, who was at the forefront of the AIDS movement, says that we are repeating past mistakes made handling the AIDS epidemic with Lyme disease: “In the early days of the AIDS crisis, there was little effort made to do public awareness and consequently the epidemic escalated to disastrous proportions.”


Dr. Jane Marke, M.D. believes that Lyme disease is the new AIDS epidemic in New York: “I encounter so many people here who either have Lyme disease or have a family member afflicted with the disease. It’s become a serious problem but nobody is talking about it.”


Unlike the AIDS epidemic of the 1980s where many able-bodied people took to the streets on behalf of sick AIDS patients, those struggling with Lyme disease have been primarily waging this battle alone.


Many Lyme patients are so debilitated that they’re having to engage in a new kind of activism – activism from a homebound or bedbound state.


Sick Lyme patients are fighting a David and Goliath war against the CDC and HMOs who assert that a 2- to 4-week course of antibiotics cures all patients. But people like 34-year-old Josh Cutler, who is still severely ill after taking the recommended treatment, insist that a short course of antibiotics does not work for many: “We’re dealing with an all profit, no care attitude by HMOs and it’s having a serious impact on families and our economy.”


Attorney Lorraine Johnson, Executive Director for, describes the financial impact of Lyme disease: “Eighty-four percent [of Lyme patients] are not diagnosed within 4 months; 65% of those with chronic Lyme have had to cut back on or quit work or school. . . . One thing that is certain is that ignoring this problem is costly and grows more costly every day that we fail to intervene.”


Dr. Richard Horowitz, M.D. explains the long-term consequences on future generations: “We’re talking about a worldwide epidemic that is affecting the future generations of this country, dumbing down America. This lowers down your IQ, it affects your memory and concentration . . . These organisms will get into pregnant women and get into children . . . There’s got to be an awakening soon because this epidemic is spreading.”

Getting the Attention of Journalists — and through them, the World


Why isn’t there more press coverage of Lyme and other horrific diseases carried by ticks, and the lack of proper diagnosis and treatment?

We’ve asked this question thousands of times.

Just recently I heard yet another story that should be told, about a group of boys in my area who found a way to connect with each other. These young kids have been housebound, some for years. Continue reading

Video: “What Makes Ticks Stick”

Be ready and CLICK HERE: This is a horrific, close-up view of how a tick attaches to skin. These images may just stick in your mind and spur you to check for ticks daily. I hope so. You can’t protect yourself 100%, but we need to do all we can to lower the odds of getting Lyme – or getting reinfected.

Video: Pathologist Alan MacDonald Addresses Important Lyme Questions

If you’re like me, you want to know the latest scoop on what scientists are learning about lyme disease. In this May 2013 interview  shared on YouTube by the Arthroplasty Patient Foundation, we hear again from pathologist Alan MacDonald. (This interview is part 2 of a 3-part series, see the first one here). I’ve noted some key points you can jump to if you don’t have time to view the entire interview.

Continue reading

When Lyme Disease Goes to the Heart

Carolyn and her dog x with the friends helping her get the xx treatment.

Carolyn with her pooch Betty and, from left to right, the friends who have banded together to help Carolyn get treatment: Mark Gordon, Jim Pettengill, Teresa Gordon, Bruce Hoppenworth, Marianne Antonelli, and Gary Antonelli. Not pictured: Maggie Gobie.
Photo: Randy Martinek

Lyme affects the heart in more ways than one. Just ask Carolyn Ross, who was loving the outdoor life on a Virginia horse farm back in 2007. Then ominous change came overnight.

She can tell you the day her health crashed: December 27. After a holiday party, flu-like symptoms came on, and a few days later she noticed a rash on her arm.

Continue reading

Quote of the Day

I’ve always been an admirer of Dorothea Lange – like most who know about this extraordinary person- and this quote goes to the heart of photography.
I would add my own spin: Lately I’ve been taking photos, mostly sitting or lying down. And I’d say the camera is also an instrument that teaches us to look outside ourselves rather than constantly focusing on our own struggles.

Blackberry Cobbler


Photo: LifeLoveLyme

I miss cooking, I really do. I used to prepare meals all the time—for friends, for my kids, just for myself. I’m not an amazing cook, mind you. But I love the process, from chopping and stirring to arranging everything on pretty serving dishes.

When Lyme hit and left me breathless with shock, I couldn’t stand up long enough to stir a sauce, much less haul my pain-riddled self up and down the aisles of the grocery store and stand in the check-out line.

Continue reading


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