By Sue Ferrara
The arrival of September no longer means back-to-school shopping for me. Instead, it’s an anniversary month. The month I use to benchmark the start of another year of living with the consequences of tick bites. This September marks the start of Year Seven.
In 2008, two people in our household were bitten by ticks. One person developed the well-known bull’s eye rash, called erythema migrans, or EM, by physicians. That person immediately received the standard doxycycline treatment and recovered.
The second person removed two, un-engorged ticks from the abdomen and developed no rash. And hence, that person received no treatment. A Princeton-based physician was adamant. No rash. No doxycycline. Eventually, another physician prescribed amoxicillin. Unfortunately, the treatment wasn’t enough.
The remaining nitty-gritty details of the seven-year medical journey are not as important as what I have learned while navigating the situation.
First, Lyme Disease is real. Infectious disease specialists tell patients it’s easy to treat; it’s not easy at all unless one is lucky enough to get a bull’s eye rash and immediate treatment. Even then, there are no guarantees. Many members of the Infectious Disease Society of America continue to treat Lyme infections with either one, single 200 mg dose of doxycycline; or two to three weeks of the 100 mg dose, twice a day and nothing more. Continue to have symptoms; or, get better and relapse, and many infectious disease specialists will tell patients they need to seek other medical attention because the Lyme is gone; something else is going on.
Members of the International Lyme and Associated Disease Society on the other hand tell patients, the Lyme may be gone; the Lyme may not be gone, there may be co-infections. And those co-infections include pathogens and bacteria which elude discovery with current testing methods.
This past August, ILADS released updated treatment guidelines for Lyme. The document encourages doctors to monitor patients after initial treatment because too often current diagnostic tests aren’t adequate and neither is the standard doxycycline treatment.
The story of Lyme Disease ostensibly began in 1975, in Lyme, Connecticut, when a number of children exhibited signs of juvenile rheumatoid arthritis. Researchers eventually identified the culprit as the bacterium Borrellia burdorferi, a spirochete transmitted by the black-legged deer tick.
In reality, this spirochete has been around for thousands of years. Otzi the iceman, who lived more than 5,000 years ago, had Lyme Disease. Otzi was unearthed in 1991 by researchers digging in the Italian Alps; he was diagnosed with Lyme Disease in 2012, after researchers ran a DNA genome sequence on Otzi’s remains. At the moment, Otzi holds the distinction of being “the first recorded case of a human infected with the Lyme disease pathogen.”
Fortunately for Otzi, he lived until he died. He didn’t have to contend with naysaying physicians, insurance companies and other well-meaning, but clueless professionals who would have told Otzi: Join a sports team. Get out and about. You’re faking your symptoms! And, I have to guess Otzi’s mom, if she was even in the picture, wasn’t considered a helicopter parent with psychiatric problems of her own.
These are some of the slings and arrows parents endure when trying to get their children treated. Many adults infected with tick-borne illnesses end up on psych wards when what they needed was what people call a Lyme Literate Doctor—a person skilled in recognizing and treating tick-borne infections. And I use the phrase tick-borne infections because the term “Lyme Disease” just doesn’t capture the magnitude of the problem and the challenges. Ticks bites transmit much more than Lyme.
Insurance companies follow the path of least monetary cost, and so they pay for the least effective test modalities, and limit the reimbursements to acceptable treatment protocols. People who need to pursue medical care for tick-borne infections find a limited number of physicians who can treat; physicians who don’t take insurance so they don’t have to waste time arguing with insurance companies, and doctors who have to charge significantly more because people with tick-borne infections can’t be adequately seen in 10 minutes.
And for those risks and efforts, doctors are being dragged before state medical boards for not treating Lyme as the Infectious Disease Society of America sees fit. For example, in Connecticut, a 85-year old pediatric lyme specialist named Dr. Charles Ray Jones has healed thousands of children from around the country and around the world, but has also amassed thousands of dollars in legal bills fighting the state’s medical board.
In Hamilton, a Lyme-treating physician wasn’t lucky enough to carry on his career. However, he left behind a detailed article titled, “When to Suspect Lyme” that for many years was the go to document for physicians quietly trying to help patients. Dr. John Bleiweiss penned that paper in 1994. The document haunts me.
Dr. Bleiweiss knew so much at that time about tick bites and the consequences. Had his colleagues and others listened, where would our treatment modalities be today? Far more advanced, I believe.
For his efforts and dedication to his lyme patients, the New Jersey State’s Attorney General asked the NJ Board of Medical Examiners to strip Dr. Bleiweiss of this license. Twenty years ago, the headline in a local paper read, “State Seeks License of Lyme Disease Doctor: Malpractice, Mistreatment Alleged.” Patients had already received a letter from Dr. Bleiweiss saying he was closing his office as of August 24, 1995. The day after the news story ran, Dr. Bleiweiss was found dead in his driveway of a self-inflicted gunshot wound.
At the moment, the best medicine is prevention with daily tick checks, especially when your children come home from school, from the practice fields, or running through local parks. The Hamilton Public Library holds two excellent resources. The first, a DVD called Under Our Skin; and a new book by Dr. Richard Horowitz titled, “Why Can’t I Get Better?: Solving the Mystery of Lyme and Chronic Disease.”
More information can be found on the ILADS website, and rea health practitioners can enroll in a half-day ILADS course to be held September 13, 2014 at Monmouth University.
Dr. Ferrara lives in Hamilton and volunteers for ILADS as its media liaison.
