Earlier this summer I was sitting with a couple of friends at the bar at the Topping Rose House and began to talk to the woman next to me. Why else go to a bar except to meet people you otherwise wouldn’t? In this case, both she and the conversation turned out to be well worth the next day’s hangover.
Not only did she give me a generous chunk of her roast chicken and one of the establishment’s bliss-inducing brioche doughnuts, but she also had a lot to say on Lyme disease, a condition she has studied “diligently” since self-diagnosing with it three years ago. The reason I say self-diagnosing is that she never exhibited the classic signs, nor did the test indicate that she had it. “Fifty percent of people with Lyme test false negative initially and up to 50 percent of people with Lyme have no rash, bull’s eye, or visual indicators,” she said. Within a 48-hour period she went from “beyond active” to being like a “felled tree.”
The reason she was telling me this was hat one of the friends I was with had just discovered she had a second case of Lyme. This is a woman who, through the outrageous incompetence of a Southampton doctor, has suffered the debilitating results of the spirochete’s having migrated into her nervous system.
The two women traded symptoms, anecdotes, and hearsay back and forth like McEnroe and Borg, enthralling bar patrons and bartender alike. I took notes.
“It’s vector-borne, meaning you can get it from a mosquito or spider or any blood-sucking arthropod.”
“It’s also transmitted through fluids, like your pet’s saliva.”
“They’ve even found it in Antarctica.”
“Shelter Island is the epicenter of a worldwide epidemic.”
“Yeah, but they’ve eradicated 95 percent of their ticks.”
“It mimics the symptoms of Epstein-Barr and M.S.”
“Michael J. Fox really has Lyme. He told me he tested positive.”
“It’s predatory, but only if your immune system is vulnerable. I got mine right after my father died.”
“There’s now a fatal virus found in ticks, Powassan virus. It takes less than 15 minutes to get into your system.”
“I heard they’re covering it up till after Labor Day, so as not to scare people away.”
“My acupuncturist thinks the C.D.C. should come here and call a red alert.”
“The diagnostic tests are flawed.”
“It hasn’t presented itself as lucrative yet to the medical establishment.”
Blah, blah, blah. One startling fact or fiction (who knows?) after another.
The other friend and I congratulated each other on being Lyme-free. That would soon change when she called me a couple of weeks later to say she’d tested positive, too.
Now, I was the only one of the foursome who hadn’t yet contracted a tick-borne ailment.
One morning shortly thereafter I awoke to find my cat rubbing her mouth on mine, dribbling a cascade of saliva. This was enough to awaken my long dormant hypochondria. So when I heard about a talk being given at the Old Whalers Church by “one of America’s leading experts on tick-borne diseases,” I went — along with about 40 other pilgrims on a sunny weekend beach day.
Mara Williams is a nurse practitioner based in Sonoma, Calif., and the author of “Dirty Little Needle: What You Need to Know About Chronic Lyme Disease and How to Get the Help to Feel Better.” She became interested in Lyme when her 35-year-old daughter became bedridden for over a year and she watched as “many health care providers marginalized her by saying this disease doesn’t exist.”
Here are some excerpts from her talk (by Lyme, she was also addressing co-infections such as babesiosis and ehrlichiosis):
The East End is ground zero for Lyme; migrating birds carry it.
All ticks potentially carry Lyme, not just deer ticks.
Our weakest (physical) link is what the infection will affect.
A cheesecloth sweep in New Hampshire was 90-percent effective in eliminating ticks.
These are stealth pathogens; they create a biofilm, which is a tenacious goop. (Breaking down biofilm is part of Ms. Williams’s treatment. She referred us to the work of the Lyme researcher Alan MacDonald, M.D., whose studies show that biofilms protect spirochetes from antibiotics. He also apparently discovered a link between Lyme and Alzheimer’s, a disease he ironically has himself. Ms. Williams told us that Eva Sapi has continued in Dr. MacDonald’s footsteps.)
You won’t get a bull’s-eye rash unless you’ve been bitten before; if a rash appears you definitely have Lyme.
If positive, you must take doxycycline, 200 mg. twice day, prophylactically for six to eight weeks, and go on herbals for six months to kill the bugs, break down the biofilm, and support the immune system.
Borrelia (another spirochete) is a thousand times more complex than any other bacteria ever studied.
We’re finding babesiosis in the blood supply.
And on and on.
A compelling speaker, Ms. Williams recommended, if bitten, to use an organic spray (that I couldn’t hear the name of) that contains 10 percent azithromycin within 10 minutes. She also recommended preventing bites topically with lemon grass, rosemary, and bay laurel, a leaf she said you can “crumble and strew around your property.”
“Don’t be afraid to look like a nerd,” she implored the well-heeled crowd, advising elastic waistbands and white socks worn over pant hems. (Say it ain’t so, please!) After possible exposure, she said to put clothes in a dryer on high for 15 minutes.
On a political note, she said that the federal government is sitting on its hands regarding tick-borne illnesses. “We need to mount change on a local level,” she said, lauding Assemblyman Fred W. Thiele Jr. for his actions.
At the end of her talk, I singled out a woman with blond curly hair who had been asking intelligent questions throughout. She turned out to be Anne Van Couvering, a naturopath with a practice in Sag Harbor. Dr. Van Couvering is an expert herself on the subject who “keeps up on the latest research” and who sees a lot of patients who present with co-infections. She uses herbs including cat’s claw, teasel, banderol, and astragalus to support immunity as well as probiotics to balance guts compromised by mega doses of antibiotics, without which “most people can’t get their health back.” Interestingly, most of her Lyme patients have sought her help for chronic conditions such as pain, fatigue, or insomnia, which they have mistakenly attributed to aging, anxiety, or stress. They are unaware it is Lyme because “it doesn’t flare all the time,” she said.
Meanwhile, Ms. Williams is currently seeking funds to build a 24-bed retreat in Sonoma “that will offer an oasis of peace, health, and healing for those with chronic Lyme disease” and who “need to be in a place where they are not persecuted.”
Alas, I became so alarmed about the disease that I neglected my vegetable plot at EECO Farm. As it is now after Labor Day, time will tell if the dreaded Powassan virus has really struck here. However, in this land of causes and charity fetes where we have raised money for everything from cancer to Mitt Romney, I humbly submit that we might build our own Lyme retreat.
Debra Scott is a real estate columnist for The Star.