Exploring The Facts And Fictions Of Lyme Disease On The East End

This is the first in a series of articles on Lyme disease by East Hampton resident and author JZ Holden. The series will focus on the seeming epidemic of the disease on the East End, and will feature discussions with health professionals, people suffering from the disease and the treatment of Lyme disease.

Lyme disease has become an epidemic of enormous proportions. For anyone who lives or vacations on the East End of Long Island, Lyme disease is a reality. In 2015, there were officially 30,000 known cases of Lyme disease in Suffolk County. Because so many cases go undiagnosed, according to the Suffolk County government website, the real number of cases is closer to 300,000. As for the rest of the country, there are 300,000 new cases of reported Lyme disease a year in the United States alone.

In as much as we might think Lyme is an East Coast disease, it is not. Lyme is international. You read that correctly. Worldwide. Lyme is known to exist in 60 countries and there are more than 400 known strains. Three or four of those strains tend to be the most written about and diagnosed in the U.S. We also tend to think of Lyme as a new disease, something that began in Lyme, Connecticut, in the 1970s and migrated to Montauk and went on from there to the rest of the East End of Long Island. Not true. When the body of a 5,300-year-old man turned up in the Alps between Austria and Italy in 1991, the scientists who discovered him examined his DNA, and much to their surprise, the mummy known as Otzi had Lyme disease.

So all you conspiracy theorists take note. Lyme was not developed on Plum Island and we are not its guinea pigs. It would seem, nature herself created and perpetuates Lyme disease. The greatest carriers of Lyme ticks are not deer, but rodents, birds and the wind. Killing and culling deer will do nothing to stop the epidemic. Most people contract Lyme disease from the bite of a nymph or baby tick, which can be as small as a poppy seed. Due to their size, Nymphs are very hard to detect. After a day or two, the Nymph grows and becomes more visible. The area around the site might be itchy—an indication of the Nymph’s presence. A bull’s eye or a rash can accompany the bite, but only a small percentage of Lyme patients report having had either.

The disease itself is caused by a spirochete—a corkscrew shaped bacterium called Borrelia burgdorferi that is transmitted to people and pets through the bite of an infected Ixodes tick (or a black legged or deer tick). To the best of our knowledge, Lyme disease does not discriminate; men, women, children and pets are all susceptible.

Depending upon the specific strain of Lyme disease, these spirochetes (pronounced spyro-keets) can infiltrate your organs, muscles, joints, brain, heart and red blood cells. The disease can share similar symptoms as with dementia, multiple sclerosis, severe memory loss, brain fog, and can create palpitations and arrhythmias.

The notion of “chronic Lyme” was previously pooh-poohed by the medical establishment. But they have changed their tune. Whether the result of a misdiagnosis or a case of under treated Lyme developing into something more serious, or more strains of Lyme interacting with one another, the medical establishment has had to reluctantly admit that chronic Lyme disease exists.

What is tricky about Lyme diagnosis is that it mimics so many other diseases. In addition, Lyme testing is inconclusive. In other words, sketchy at best. You may be tested and come up negative, and still have Lyme disease. The best indication that you might have Lyme is that it dramatically alters well-being. A perfect example is Kris Kristofferson’s recent Lyme diagnosis. He was believed for many years to be suffering from dementia. His wife said he was slipping farther and farther away. Her love for him and her persistence paid off: He was finally properly diagnosed and is making a remarkable comeback. His Lyme may have been chronic, but not until he was correctly diagnosed and treated could he start to recover.

Last season, Yolanda, one of the stars of Housewives of Beverly Hills contracted Lyme disease. No one on the show believed she was ill. All the other housewives thought she was making it up when she complained of flu-like symptoms: fever, chills, sweats, muscle aches, fatigue, nausea, exhaustion, neck pain, depression, stiffness, swelling, sleep issues and headaches. Dr. Joseph Burrascano, a pioneer in Lyme diagnosis and treatment, developed an extensive list of symptoms of chronic Lyme disease, which can be found on the Lymedisease.org website. As a result, Yolanda is dedicated to informing and educating the public about Lyme disease. A few months ago, Yolanda was honored by the Global Lyme Alliance in Manhattan.

The medical community has recently acknowledged another former misnomer, which is that if we catch Lyme early enough, and it is treated early on, that we’ll be fine. Not necessarily true. According to some medical professionals, the spirochetes never die. It is believed that antibiotics deal with the body’s response to the presence of the spirochetes, in other words the symptoms, but antibiotics do not kill the spirochetes. Antibiotics actually make them create a protective cyst around themselves to protect them from attack by antibiotics. With this protective shell around them, they can hide in your organs. They feed on the connective tissue in your joints, and attack the heart muscle, the brain or your internal organs. And like cancer cells, they LOVE sugar and starches.

In the coming weeks, I will interview many health professionals who deal with Lyme disease on a daily basis. We will explore individual cases, treatments, the many arguments regarding treatment within the medical establishment, the protocols that have been created, those approved by the AMA and pharmaceutical companies, as well as those created by holistic and complementary health practitioners.

The good news is that doctors and practitioners are treating, and curing patients with Lyme disease. There is hope.

If you or anyone you know has Lyme disease, and would care to share your story, please contact me at: jz@jzholden.com. I look forward to exploring and sharing this journey.