Sufferers of chronic Lyme disease gather in West Tisbury to “Bite Back for a Cure”


Individuals who claim to suffer from chronic Lyme disease shared their stories of anguish and illness at the Grange Hall in West Tisbury last Sunday night, August 18, as part of a day-long event hosted by The Lyme Center of Martha’s Vineyard (LCMV) in conjunction with “Bite Back for a Cure,” a national campaign sponsored by the Tick-Borne Disease Alliance (TBDA), to raise funds for the LCMV and to raise awareness of tick-borne diseases.

“Six years ago, my husband and I moved to Martha’s Vineyard from New York City,” said Enid Haller, who organized the event with Roni DeLuz. “Little did we know how much our lives were about to change. When you lose your health, it’s the death of a life you used to know.”

While there remains considerable controversy over the diagnosis of chronic Lyme disease and treatment, there is no dispute that Lyme, the best known among a variety of tick-borne diseases, is a growing public health care issue.

On Monday, August 19, the Center for Disease Control (CDC) revised the estimates of Lyme disease cases in the United States from 30,000 to over 300,000, a stunning tenfold increase, mostly in the Northeast. The figures supported what many people who attended the conference had been saying for a long time — that Lyme disease is far more pervasive than the official statistics have shown. And it’s spreading fast.

Many options

The hosts of the weekend event were Enid Haller and Sam Hiser, co-founders of the Lyme Center of Martha’s Vineyard and the Martha’s Vineyard Lyme support group, which is now over 400 strong.

The Lyme Center of Martha’s Vineyard, at 38 A Panhandle Road in West Tisbury, is advertised as a place where Islanders can obtain a wide range of services, including diagnostics, advice on traditional and alternative treatments, and patient advocacy, all for free.

Mr Hiser, Ms. Haller, and their daughter Bean, were all infected with Lyme disease after moving to the Island from New York City six years ago, according to Mr. Hiser. After years of battling the disease, and seeing how pervasive chronic Lyme is on the Island, they opened the Lyme Center last year.

“There’s a bewildering array of options for someone suffering from chronic Lyme,” Mr. Hiser said. “The only way you can keep from going down dead ends is to talk to a friend or relative who’s gone through it, who can advise and educate you to the extent that you can make good choices and reduce the amount of time you commit to false pathways. That’s why we started the Lyme Center — to provide good information that has worked for people like us, who’ve recovered, so that sufferers can make positive steps sooner than later.”

Nationwide ride

The day-long “Bite Back for the Cure” event began with 24-year-old Lyme sufferer John Donnally of Morristow, New Jersey, leading a five-mile bike ride starting from the Lyme Center of Martha’s Vineyard in West Tisbury to the Chilmark town hall. The Vineyard was the first stop on Mr. Donnally’s nation-wide bike tour to raise awareness, to raise funds, and to raise the spirits of chronic Lyme disease sufferers that he will visit along the way.

Later in the day Katina Makris, author of Out of the Woods: Healing from Lyme Disease and Other Serious Illnesses, Body, Mind and Spirit, signed books at the Chilmark Community Church. That night, chronic Lyme sufferers, their loved ones and their caregivers, gathered at Grange Hall and shared their tales of despair, confusion, silent suffering, and hard fought, decades-long comebacks.

Hale and fit, Mr. Donnally looked more surfer than sufferer. But only three years ago, he said he was enduring the pain and the crushing depression that accompanied a relapse of a disease he thought he’d beaten as a teen.

“As many families find out, there’s nothing straight-forward about treating a tick-borne disease. I went to a lot of different doctors. One of them told me that Lyme disease was overblown and to stay away from the chronic Lyme crowd,” Mr. Donnally said, to the amusement of the chronic Lyme crowd before him. “Now both my parents, my younger sister, and as of three weeks ago, my aunt, have been diagnosed with Lyme disease. Now that I’m back on my feet, I felt like I had to do something to help. So I came to the TBDA with this vision of biking across the country, raising awareness on a national scale and making personal relationships with fellow sufferers along the way.”

Lyme disease is a diabolical disease; passed on by the imperceptible bite of a deer tick the size of a poppy seed, it can mimic hundreds of other diseases while going undetected for months, or even years. The defining bull’s-eye rash that is drilled into every Islander’s memory doesn’t occur in all Lyme cases. And even though the recent CDC revelations show the disease is more prevalent than whooping cough and syphilis, there’s still no conclusive blood test for Lyme disease.

Dr. John Aucott from Johns Hopkins University, a leading researcher in the field of Lyme disease detection, was on his way to the 2013 International Conference on Lyme Borreliosis and Other Tick-Borne Diseases in Boston, but he made a special trip to the Vineyard to speak at the TBDA event.

“This group is an example of the importance of the collaboration that we need to solve this problem,” said Dr. Aucott. “The people I’ve met here today give me hope that we can do this. I’m an infectious disease clinician and I learned very quickly that we don’t know enough about Lyme disease for me to do my job. Right now, my focus is on getting better diagnostic tests. I have good news for you all. We can crack this,” he said, to resounding applause.

No agreement

Chronic Lyme disease has ignited fierce debate among the public and medical community regarding treatment options, and if the condition actually exists.

In 2006, The Infectious Diseases Society of America (IDSA), a professional organization of over 8,000 health care professionals who specialize in infectious diseases, released updated guidelines that refuted the existence of Chronic Lyme disease. “After a thorough review, the panel concluded there is no convincing biologic evidence for symptomatic, chronic Borrelia burgdorferi (Lyme) infection after completion of the recommended treatment for Lyme disease,” the guidelines stated.

“Furthermore, long-term antibiotic therapy may be dangerous and it also can lead to complications for the patient, such as blood stream catheter infection (for those on intravenous antibiotics) and Clostridium difficile colitis (a potentially severe infection of the bowel). Long-term antibiotic therapy may also foster the development of drug-resistant superbugs that are difficult to treat.”

Sam Telford 3rd, professor of infectious diseases at the Tufts University School of Veterinary Medicine and tick-borne disease expert, strongly endorsed the IDSA assessment, angering many in the chronic Lyme community.

In an email to the Times Tuesday, Mr. Telford expounded on his stance.”There are three conditions [of Lyme disease] to which one can refer. The first is True Chronic Lyme Sequelae: Lyme Neuroborreliosis. Patients always have positive antibody tests in the well validated 2-tiered protocol.

The second is PTLDS, Post Treatment Lyme Disease Syndrome. Lyme disease patients are treated but symptoms linger for months, even years. Again, antibody tests are positive using well validated 2-tiered protocol. Some people never get better. This is a true mystery that needs solving. The good news is that this represents, at most, one to two percent of Lyme cases. We never hear the good news, that 95 percent of all Lyme cases are easily treated with a two- to three-week course of antibiotics and never have another problem.

“Then there is ‘Chronic Lyme,’ people have nonspecific Lyme symptoms but never test positive for the antibody to the bacterium using the well validated two-tiered test. If they come up negative in the hands of a good lab, then it is not Lyme. Other causes could include other environmental infections that are endemic to the northeast, including mosquito, flea, louse and midge transmitted infections, other tick-borne infections, viruses from small mammals or birds or even non-infectious causes. Chronic Lyme has never been carefully studied by a good epidemiologist. This is unfortunate because by focusing on a conclusion that is not supported by the best available tests, one is potentially missing going on to find the real cause and possible treatment.”