Hiding in Plain Sight

They hide in cells for years, undetected.

They change appearance to dodge recognition.

They destroy lives, including those of children.

And they are exploding all over the globe, faster than the government can track them.

If it sounds like we’re talking about terrorists, we are.

They are tick-borne diseases, and you can’t swing a golf club in this neck of the woods without hitting someone who has one.

Chuck Balducci’s heart nearly stopped on his honeymoon—and it wasn’t from seeing his beautiful new bride. Ten years ago, while traveling in Kenya and the Seychelles with his wife, Amy, Chuck rapidly descended into a thick haze. He felt slow, dizzy, disoriented. What was happening? Something he’d eaten? An exotic virus? Too weak to walk, Chuck had to use a luggage cart as a walker to get through the airports on their journey home. The moment the couple landed at JFK, they rushed to NewYork-Presbyterian/Weill Cornell Medical Center, where he was admitted. “At that point, my heart rate had plummeted to twenty-six beats a minute,” he remembers. “I was essentially a half day away from dying.”

The first assumption was that Chuck had contracted malaria or another infectious disease. One doctor wasn’t convinced, however, and said that based on his drop in blood pressure and abnormally low heart rate, Chuck needed to be tested for Lyme. Her hunch was correct—Lyme disease, a bacterial infection caused by the spirochete Borrelia burgdorferi, was quickly attacking his heart, disrupting its electrical currents. Chuck was given a temporary pacemaker and hooked up to a peripherally inserted central catheter, or PICC line, that snaked up his arm, directly into his heart, where a flood of antibiotics pumped through his four chambers. “For nearly two weeks while I was in the ICU, I was a case study for the infectious disease team, cardiology and electrophysiology departments,” says Chuck. “Many doctors commented that they had never seen a twenty-nine-year-old with the symptoms I exhibited. A patient in good physical condition with no congenital heart issues shouldn’t be so sick.” Fortunately, after a month of his aggressive treatment, he made a shocking full recovery.

Chuck, who knew nothing about Lyme at the time, started piecing it together. There was the tick bite two months prior on a golf course. Then there had been the summertime fever of 104.5 that sent him to a Brooklyn hospital. “First they thought it was meningitis, then they ruled it out, gave me a couple of days of Z-Pak and sent me on my way. I felt better for about a month, then wham, it hit me,” he remembers. “Searching for that five-dollar golf ball in the bushes was one of the most expensive lessons I’ve ever learned. It almost cost me my life. I feel lucky that the second time I wound up in the hospital, they didn’t send me home and diagnosed and treated me properly.” A Greenwich resident of five years with Amy and their three children, the Merrill Lynch wealth management advisor and managing director acknowledges that he is just one tick bite away from being back in the ER. “No one is immune. You can get bitten, recover completely, get bitten a second time and get sick again,” he says.


THE GREAT IMITATOR
The Greek God Proteus was known for his ability to shape-shift, to change himself into different forms. This was his power, his weapon. “Lyme is widely known to be a protean illness,” says Dr. Kenneth B. Liegner, a board-certified internist with additional training in pathology and critical care medicine, practicing in Pawling, New York. Liegner has been diagnosing and treating Lyme since 1988. “The disease can present in so many different ways, and one of the reasons is that everyone is immunogenetically different,” he says. “Lyme is also one of the most, if not the most, complex genetic arrangement of bacteria. It’s a very, very complicated agent.”

Further obscuring the picture is that in recent years, Lyme disease, the fastest-growing vector-borne illness in the United States, has morphed into an increasingly unwieldy animal that has become harder to track and tame. “Lyme is not just Lyme anymore,” says Dr. Richard I. Horowitz, a board-certified internist practicing in Hyde Park, New York, and author of Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease. “Ticks are now containing multiple bacterial, viral and parasitic infections that can be transmitted simultaneously with Borrelia burgdorferi. Patients infected with Lyme disease and associated coinfections are much sicker and resistant to standard therapies.”

There are now more than 100 different strains of Lyme in the United States and more than 300 worldwide, over 100 species of Babesia and over thirty species of Bartonella, the organisms behind two common tick-borne coinfections that can be transmitted along with Lyme. Add to that a person’s existing inflammation, immune dysfunction, hormonal imbalances, heavy metal burden and other factors, and the Lyme patient’s road back to health can become a labyrinth. “There is a commonly held belief in medicine called Pasteur’s postulate that there is ‘one cause for one illness.’ This does not apply to patients with chronic Lyme symptoms,” says Horowitz. “We use a sixteen-point differential diagnostic map to help patients with thirty to forty symptoms who say, ‘I don’t know what’s wrong with me. I just don’t know how to get better.’”

It is little wonder that this multilayered illness so easily evades our understanding. Lyme is called The Great Imitator, for its chameleon-like ability to disguise itself as a host of other conditions. As a result, patients may be led down the wrong path of diagnosis while their underlying Lyme infection silently progresses. “In the over 12,000 adults and children I have treated over the past twentyeight years, I have seen Lyme mimic MS, ALS, rheumatoid arthritis, lupus, fibromyalgia, chronic fatigue syndrome and Alzheimer’s,” says Horowitz.

Paige Baldwin Sammis, who grew up in Westport and lived in Greenwich for nineteen years before moving to Idaho with her family, was told she likely had multiple sclerosis when it had been Lyme all along. “For years, I had joint pains that made my knees burn, my forearms ache and my hands curl, and my limbs were always numb or tingling,” she remembers. “I had a buzzing sound in my head, ringing in my ears, my vision was deteriorating, and I was always dizzy and tired.” Some days, her fatigue was so crushing, she would get her daughters off to school and spend the day in bed, unable to move. She also experienced ADD, anxiety, mood swings, and disturbing memory lapses. “It got to the point where I had zero short-term memory and recall, like I had Alzheimer’s,” she says. “I couldn’t remember addresses, names of people I knew, what I had done the day before, how to get words out in a conversation. Even the simplest math, forget it,” says Paige. “You start to think, Well, this must just be me. I chalked it up to mommy brain and stress from raising four kids.”

When her situation became unbearable, Paige’s general practitioner ordered a dyecontrast MRI and found a 9mm lesion on her brain. “The first conclusion, given my other symptoms, was MS,” says Paige. “No one mentioned the possibility of Lyme.” It was Paige’s friend and naturopathic doctor, Myriah W. Hinchey, who took notice. Paige’s initial screening test was negative, but her follow up test was positive for Lyme, babesiosis and bartonellosis. So which was it, Lyme or MS? Under the care of a new doctor, Paige underwent a spinal tap, which unequivocally ruled out MS. “I remember sitting in the doctor’s office with my mother, thinking, ‘Thank God I don’t have MS. But how do I get rid of this awful disease that is ruining my life?’”

Growing up on the water in Westport, Paige regarded ticks as just a part of daily life. “I remember picking ticks off of myself, off of my cat. No one talked about the dangers. I don’t know when I contracted it since I never had a bull’s-eye rash…. I could have been very young.” All four of Paige’s daughters also tested positive for Lyme and multiple coinfections. Her children exhibited numerous physical and neurological problems, and after getting them properly diagnosed and on a treatment program, Paige focused on her health. “It took me over five years of being on and off of antibiotics with a number of different doctors before I was told that I didn’t have a choice. I needed an IV if I wanted my brain back.” During her ten-month treatment, Paige’s anxiety lifted, her crippling pains subsided, and her memory and cognition improved. “Even last year, I wouldn’t have been able to have this conversation. I wouldn’t have had the words,” she says. Though Paige has continued to feel well, she is acutely aware that when she’s stressed or strays from her low-inflammation diet, the flare-ups begin.

Sometimes, even without it masquerading as something else, Lyme can be tough to look dead in the eye. During the summer of 2013, Greenwich resident T. J. Carella noticed a slow-growing, reddish blotch on his lower back developing into a ring. “I watched it for a month and was slow to acknowledge that it could be Lyme because it hadn’t yet developed into a more traditional bull’s-eye,” he says.

T. J. kept brushing aside his other symptoms—anxiety, a short temper, absentmindedness. “I remember on a couple of occasions while driving by myself in the afternoon that I was drifting across the double yellow lines,” he says. “I recall being very surprised and concerned that I could tune out like that behind the wheel, something I had never experienced before and haven’t since my antibiotic treatment.” Despite these troubling symptoms, the partner in Goldman Sachs Merchant Banking Division, where he is global head of health care private equity, only responded to the circular rash. “I do health care investing for a living and have been very aware of the risks of Lyme in our community even before I got it, yet without the full-blown bull’s-eye, I wouldn’t have connected the dots.”

While T. J. never saw a tick, he suspects that he was bitten while gardening in his yard, even though he’d sprayed for ticks in late spring. T. J. took two different Lyme tests and tested negative for both. However, the second test, conducted by a Lyme specialist, indicated a heightened immune response, which that doctor believed to be specifically related to Lyme. He was given a month of antibiotics and rebounded. “Mine was caught early in its life cycle,” he says. “I know how devastating this disease can be if it’s not.”


CAN YOU TRUST YOUR DIAGNOSIS?
While Greenwich is hardly the only town endemic to Lyme on the East Coast, much less the globe, it is a symbolic one. Our garden clubs—eleven in all—proudly nurture our lush surroundings. Our abundant country clubs and golf courses become extensions of our own backyards. Our riding trails are treasured by both young and old, as are the rugged pathways of Mianus River Park, the unspoiled beauty of the Audubon and the seagrass-kissed inlets of Tod’s Point.

It is hard not to see this as a sort of ironic smackdown from Mother Nature. “The new American concept of carving suburbs from forest has provided deer with an ideal habitat—possibly the best deer habitat in the history of time,” says award-winning science and biomedicine journalist Pamela Weintraub, author of Cure Unknown: Inside the Lyme Epidemic. “Essentially, we’re living in a Lyme incubator that caters to other ‘edge species’ like spirochete-carrying mice, chipmunks and shrews that thrive best on low brush and fertilized lawn that abut densely wooded areas. They infect the ticks that feed on them, which in turn infect the deer. It keeps a reservoir of infection alive.”

Perhaps our only foolproof solution is living on Astroturf. That thought runs through the mind of Suzanne Eason Hopson, owner of Suzanne Eason Interiors. “We never had to worry about Lyme growing up. I want my girls to enjoy the outdoors, but I see kids getting sick all around us.” The family loves collecting honey from their backyard beehive and romping through the yard with their dog, Harlan, who despite wearing Frontline, has gotten ticks. Three years ago, Suzanne pulled an engorged tick from her youngest daughter’s head and had it tested. “Under the care of our local pediatrician, we put Scarlett on antibiotics. I wanted to treat her before our tick test results came back. It wound up being positive along with her Lyme test, but I know many people who put too much faith in the tick test and are still paying for it.”

She tells the story of a friend who found a tick on his leg at midnight and went to the ER to have it removed, fearing he might leave the head in if he tried to pull it out himself. “They took it out but made him feel silly for coming in, like he’d had a skinned knee. When his tick tested negative, he never bothered with a Lyme test.” Then his young son got bitten and again they sent the tick for testing. It also came back negative. But when father and son were tested six weeks later, they were positive for Lyme, and the son for ehrlichiosis, which led to an encephalitis complication. Now the two are being treated, trying to undo the damage. “Why wouldn’t you trust a test that tells you, with a high degree of certainty, that your tick is negative?” asks Suzanne. “It doesn’t test for all the coinfections either. Now I tell everyone I know to test the tick, but if it comes back negative, don’t automatically assume it’s negative.”

It isn’t just the potential unreliability of tick testing that leaves people’s heads spinning; it’s the decoding the Lyme diagnostic itself. The first screening test, known as the ELISA (enzyme-linked immunoabsorbent assay) has been reported by Columbia University Medical Center’s Lyme and TickBorne Diseases Research Center to miss up to 45 percent of Lyme cases, yet it is still the initial test given to patients. Per CDC guidelines, if your test comes back positive or equivocal, a second blood test called the Western Blot is recommended to eliminate false positives. But what about ruling out false negatives?

“I have seen many patients with negative ELISA tests but positive Western Blots,” says Dr. Liegner. In those cases, having a doctor who orders the Western Blot based on your symptoms is critical. “Lyme is a clinical diagnosis,” says Dr. Horowitz. “You can’t say that someone does not still suffer from Lyme if their blood tests lack the sensitivity to always pick up an active infection.” Additionally, different labs may yield different results. “I use IgeneX because it looks for two strains, the 297 and the B31, leading to increased visibility of Borrelia specific bands,” says Horowitz. Stony Brook Lab also tests for both strains, whereas at this time, Quest and LabCorp only test for the B31 strain.


DIFFERENT PATIENTS, SAME DISEASE?
Even those who test positive by CDC standards find themselves torn as to who and what to believe. “I was fatigued and always had issues with my thyroid and adrenal glands, so my OBGYN ran a series of tests and the ELISA came back positive,” says Irina Ferry, owner of Soho Gem in New York City and Greenwich mother of two. “He asked me to take the IgeneX test, which wound up being positive too. But I went to an infectious disease specialist who was certain I did not need antibiotics, told me IgeneX tends to overstate their results and I should have the Western Blot repeated by LabCorp, which came back negative.” Confused, Irina went back to her OBGYN, who disputed the negative results. “Now I’m getting a third opinion,” she says. “My concern is that I may be living with something that may show its ugly face one day. Do I just wait for it to appear? Will that be too late?”

The answer depends on who you talk to, which compounds patients’ confusion. “We see many different types of patients, and there is a lot of gray area,” says Dr. Sandra Kesh, board-certified internist and infectious disease specialist at WESTMED Medical Group in White Plains, New York. “Some are asymptomatic and their provider gives them an ELISA test that comes back positive. The question is what to do with that patient. Generally in this area, which is hyperendemic for Lyme, if someone presents with a tick bite and has a fever and certainly a rash, we don’t even need to do the blood test—we treat them for Lyme, that’s a home run. If we see a fever and some of the more vague symptoms like headaches and joint pains and we test them for Lyme and it’s negative, I err on the side of treatment, since it can take a month or even longer for the test to become positive and because the pre-test probability is fairly significant in this part of the country.”

But what about patients with persistent Lyme symptoms who have been treated unsuccessfully or have gone undiagnosed for years? Herein lies a significant source of controversy: Is chronic Lyme legitimate, and if so, how should it be treated? “There’s acute Lyme and there’s this whole category of chronic Lyme, and that’s where I think a lot of the misinformation comes in,” says Kesh. “A lot of people think they have Lyme. They have a positive test and were treated in the past and still have symptoms. Those are people that we do not think have an active infection.” These patients will come in with a positive Lyme test and the common complaints of joint pain, headache, brain fog and not being as mentally sharp as before. “If you test those patients, the Lyme test will still be positive, because their IgM antibodies stay positive for up to a year after infection,” says Kesh. “Patients say, ‘Well, I still have these IgM antibodies, don’t I need more treatment?’ Unless there is swelling of the joints, called joint effusion, that is confirmed by testing or signs of chronic neurologic disease confirmed by a neurologist, the answer is no.”

That leaves people who fall outside of those two specific categories in a difficult situation. “In the majority of remaining patients, you have what we call PTLDS or Post-Treatment Lyme Disease Syndrome,” says Kesh. “It’s not an infection, and that’s where the misinformation is. Nobody really knows what causes it, and nobody knows what to do to treat it, and that’s where the frustration comes in because patients are really at a loss as to what to do. What we do know is that antibiotics do not do anything for this, and generally what patients probably experience as a result of antibiotic treatment is a placebo effect.” According to the National Institutes of Health, in patients with PTLDS, more antibiotic therapy has not been shown to be beneficial. And yet, without treatment, these patients are out of options.


THE FUTURE
A potential game changer may be a series of animal studies conducted by the National Institute of Allergy and Infectious Diseases. The studies found that the Borrelia organism can survive antibiotics, leading researchers to speculate—though the jury is still out—that bacterial persistence may also apply in human cases of Lyme. If true, it may underscore the notion that Lyme and coinfections are not always eliminated from the body on the first treatment go-round. In fact, according to the CDC, as many as 20 percent of patients remain ill after the shortterm treatment protocol recommended by the Infectious Diseases Society of America. The studies may also suggest that in certain patients, there may be reason to treat the disease longer than the recommended two to four weeks to quash any suspected bacteria that has taken up residence within a person’s central nervous system.

Still, there remains a question mark regarding what treatments are most effective. “Recently, we found some promising drug combinations that could eradicate the most resistant microcolony form of Borrelia persisters,” says Dr. Ying Zhang, Professor at the Bloomberg School of Public Health at Johns Hopkins University. “Our studies may help improve the treatment of Lyme disease, including persistent forms of the disease such as antibiotic-refractory Lyme arthritis, neuroborreliosis and PTLDS.”

So the billion-dollar question becomes, if one accepts the risks of long-term treatment, will the bacteria ever cease and desist? Leason Cercy, who lives in Greenwich with her husband and two young boys, has been asking herself that question for the past ten years. She strongly feels that Bicillin shots and azithromycin therapy brought her back from a recent debilitating relapse of Lyme, babesiosis and bartonellosis that she was treated for in 2005. “It could’ve been stress, the effect my second pregnancy had on my immune system or getting two viruses backto-back, but the nightmare started all over again.” Back on rotation were joint pains, respiratory issues, tooth pain, anxiety, heart palpitations, involuntary muscle twitching and severe brain fog. “The first few weeks of treatment I got worse because I was herxing, which happens with bacteria die-off,” says Leason. “But week four was a turning point.” Still, her enthusiasm is measured. “I worry the antibiotics will stop working, or I’ll stop them and relapse again,” she says.

Until the magic bullet arrives, patients will have to soldier on via trial and error, waiting for science to catch up with their suffering. “One has to consider the possibility that you’re dealing with infections that are chronic in nature, that we don’t know whether we are treating all of the infection,” says Liegner. “The treatments may be more suppressive than curative. That doesn’t mean people need to be treated forever, but that it gets to the point where between the treatment and their own immune system, they are able to keep the infection in check without further treatment.”


THE POLITICAL LANDSCAPE
Despite a chasm in the medical community about treating chronic Lyme—with valid points made on both sides of the conversation—there are signs that the illness is being taken seriously by our policy makers. Connecticut Senator Richard Blumenthal has introduced the Lyme and Tick-Borne Disease Prevention Education and Research Act of 2013 to the Senate. The VectorBorne Disease Research Transparency and Accountability Act of 2014, authored by New York Congressman Chris Gibson and cosponsored by New York Congressman Sean Patrick Maloney, passed the House of Representatives last year. And in December 2014, New York Governor Andrew Cuomo signed a bill that protects licensed physicians from coming under attack by the Office of Professional Medical Conduct for their treatment protocols for Lyme disease and tick-borne illnesses.

“Much of the controversy will go away when the science comes through, and a lot of that centers on a direct detection method of testing,” Liegner says. “We have that with HIV. You know the status of the infection, and if the treatment is working, the viral load goes down. We don’t have anything like that available for Lyme.” Still, there are breakthroughs on the horizon. From TickChip technology to nanotechnology, microfluid cassettes to PCR-mass spectroscopy, the diagnostic space is getting crowded. While no methods can be evaluated at present, they provide proof of forward movement, which may one day paralyze this corkscrew-shaped invader in its tracks.

Proteus knew all things—past, present, and future—but disliked divulging his secret knowledge. We cannot foresee what the Lyme organism and its cohorts will look like in the future and how they will affect our natural landscape as well as the landscape of our immune systems. “In the course of history, many diseases have been misunderstood for many years, and Lyme will be among those,” says Dr. Harriet Kotsoris, chief scientific officer of the Lyme Research Alliance who is board-certified in internal medicine and neurology. “For the moment, we do not have a proof-positive diagnostic test, a clear picture of Lyme disease treatment failures and delayed treatment failures, an understanding of why people fail despite doing the right thing in a timely fashion, and the medical community will have those that doubt the existence of chronic Lyme disease.” We also cannot predict what scientific advances will be made and how they may transform lives. We can only comprehend the now. And for now, what everyone can agree on is that we’re not even close to being out of the woods with this epidemic.

 

 

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