Are the ticks winning?
Lyme disease is a challenge for doctors as well as patients
QUEENSBURY — After two years of research and writing, Mary Beth Pfeiffer started a book tour last week that could also be described as a warning: The ticks are coming.
“There is right now a massive army of ticks, ticks by the billions, moving around the planet,” she said last Wednesday night to an audience of about 50 at SUNY Adirondack’s Scoville Hall.
Measured and passionate in her speech and in her book, “Lyme: The First Epidemic of Climate Change,” Pfeiffer describes a disease that is spreading quietly and methodically, driven by a warming planet and the sprawl of suburban environments.
Each year, the ticks that carry Lyme disease are biting and infecting hundreds of thousands of Americans, some of whom will suffer long-lasting, debilitating symptoms. Despite the spread of the disease — it is now found in half of the 3,000 counties in the “lower 48,” Pfeiffer said — no reliable test is available for the disease, no vaccine is offered, and people afflicted with it struggle to have their suffering recognized by the mainstream medical community.
“Instead of rushing to their aid, medicine has run the other way,” Pfeiffer said.
Her book details why the disease is spreading — it’s more than climate change — and why victims of it have had such a hard time getting treatment or even acknowledgement from doctors that they’re sick.
Tick with a personality
Pfeiffer, retired now, worked for 30 years for the Poughkeepsie Journal. She was known statewide and nationally for award-winning investigative pieces on social justice issues, particularly the criminal justice system and state prisons.
In 2007, she had a book published — “Crazy in America: The Hidden Tragedy of Our Criminalized Mentally Ill.”
In 2012, motivated by the prevalence of Lyme disease in Hudson Valley, she did an extensive series on the disease for the Journal called “No small thing.”
In 2015, Pfeiffer took a buyout and left the Journal. A few months later, sitting on a beach during a January vacation to the Caribbean, she decided her second book would be on Lyme disease. Perhaps being in St. Martin, basking in the heat of the mid-winter sun, made her realize she could bring the subject to a wider audience by approaching it in the context of a warming Earth.
She wanted to avoid writing a book on “chronic Lyme,” she said, because in the medical dispute over what is really Lyme disease and what is not, those words have become polarizing.
“I didn’t want all horror stories,” she said — although her book lays out enough of those to give nightmares to anyone who ever strolls across a field or through the woods.
“I wanted to make the science interesting and readable. I kind of gave ticks a personality,” she said.
That personality is dogged and indomitable. Ticks have been around for millions of years, and so has the bug, Borrelia burgdorferi, that lives inside many of them and causes Lyme disease.
The two organisms have developed a symbiotic relationship: the bug using the tick to gain access to warm-blooded creatures like mice, deer and humans; the tick’s constitution strengthened — somehow — by the presence of the bug inside it.
The black-legged ticks that are the common carriers of Lyme disease hang from leafy bushes or the stems of long grass, waiting for the brush of a limb, or a sock or a sleeve. On a human host, their saliva numbs the skin so you don’t feel the bite, and an anticoagulant keeps the blood flowing. The tick saliva also combines with a protein from B. burgdorferi to suppress human immune systems, so our bodies don’t muster antibodies to kill the bug.
Reading about the elaborate and effective ways these tiny creatures defeat our body’s defenses can make you rethink the conception that humans occupy the top spot on an evolutionary ladder. They have been around far longer than we have, and from all indications, they will persist when we have faded away.
Holly Ahern, a microbiology professor at SUNY Adirondack, introduced Pfeiffer on Wednesday night. A co-founder of the Lyme Action Network, Ahern also has personal experience with Lyme disease.
Her daughter Kaleigh, an All-American swimmer, became so ill in 2009, during her freshman year of college, that she came home and barely got out of bed for a year.
She went overnight from being a vivacious teenager, in peak physical condition, to being partly paralyzed and in pain.
In 2002, Kaleigh had been bitten by a tick, but when they took her to a doctor, he recommended waiting to see if a rash developed and against giving her antibiotics.
A few months later, she experienced flu-like symptoms but recovered. Then in 2006, she suffered from fatigue, abdominal pain and overall weakness. She was diagnosed with mononucleosis, eventually felt better and went off to college, only to suffer a complete physical collapse.
She felt guilty about not insisting, after the first tick bite, that Kaleigh be treated with antibiotics, Ahern said. But the more contact she had with doctors who downplayed the possibility that Kaleigh was suffering from Lyme disease, the more she felt a different emotion: anger.
“I’m an angry mom, but I’m also an angry microbiologist mom,” she said.
Although doctors disagree on whether a long course of antibiotics is effective in treating Lyme disease, most of the medical community has felt bound by the “practice guidelines” issued by the Infectious Diseases Society of America, which are supported by the federal Centers for Disease Control.
For about 20 years, the Infectious Diseases Society has recommended a short course of antibiotics for the treatment of Lyme disease and has downplayed the possibility that, in some patients, the disease persists despite treatment.
Thousands of patients have stories about the years-long persistence of serious symptoms, however — so many that the CDC includes on its website a section on what it calls “post-treatment Lyme disease syndrome,” along with a warning on the “dangers of long-term or alternative treatments.”
The IDSA practice guidelines for Lyme disease and what the society calls “nervous system Lyme disease” are both now being updated. But they include this sentence: “There is no compelling evidence that prolonged treatment with antibiotics has any beneficial effect in post-Lyme syndrome.”
Meanwhile, many people interviewed by Pfeiffer who have suffered for years believe that what they have is not “post-Lyme syndrome” or “nervous system Lyme” but Lyme disease itself, which, despite being treated by the standard short course of antibiotics, was not eradicated.
Holly Ahern, too, believes the medical community’s official stance on Lyme is wrong.
After Kaleigh’s collapse, a doctor prescribed a three-week course of a standard antibiotic, doxycycline, and then, when Kaleigh relapsed, another three-week course. When the symptoms returned again, the doctor had nothing more to offer, Ahern said.
She found another doctor who was willing to buck the accepted medical wisdom and put Kaleigh on a 10-month course of antibiotics. She improved, slowly, and now, nine years later, stays healthy by taking constant care with her diet and lifestyle.
Many people who are bitten do not get a rash, and since Lyme symptoms cover a broad spectrum, the disease is difficult to diagnose, Ahern said.
The Lyme test — a two-tiered blood test — is likewise unreliable and frequently inconclusive. Without a definitive diagnosis, doctors are hesitant to prescribe antibiotics, even though early treatment is important in halting the disease before it gets established.
B. burgdorferi can burrow deep into the body and hide itself for years.
“If you have the Lyme disease test and it’s negative, you have about a 50 percent chance that is right,” Ahern said. “If you are sick or the parent of a sick child, it’s very difficult to navigate the system. That’s why people reach out to me.”
Ahern is now part of a federal working group set up to re-examine all the science and medicine regarding Lyme disease. She is one of seven members of the testing and diagnostic subcommittee, speaking every week by Skype with her fellow committee members, then returning to her lab to work on the problem.
“Now I’m collaborating with people who really seem to get it,” she said.
She is frustrated with the slow pace of change, but encouraged by, among other things, the attention that Pfeiffer’s book should draw to the issue.
“This is the book I would like to write if I were any kind of writer,” she said.
Pfeiffer acknowledges the complexity of the scientific debate but says only one side has been heard — the side of the official medical establishment, rejecting the voices of people still suffering from Lyme disease symptoms, even after treatment with antibiotics.
“Scientists challenging the official Lyme paradigm have trouble getting published, have trouble getting funding, have a much tougher go of it,” she said.
“Lyme is unique in the medical landscape in that you have a huge population of people who have trouble getting treated for their symptoms,” she said.
“There hasn’t been an urgency to find out what’s wrong with these people.”
Patients suffering from long-term Lyme disease symptoms are often forced to seek out expensive testing through private labs and expensive treatment from specialists that they must pay for personally, then struggle with insurance companies for reimbursement.
“For more than 20 years, patients have been rebuffed and misdiagnosed,” Pfeiffer said. “Their symptoms have been downplayed.
“They cannot get care for late-stage Lyme disease because the medical community won’t admit it exists.”
As disease-bearing ticks spread to places they were previously unknown, the accepted wisdom on Lyme is being challenged across the country.
In Texas, Lyme disease patients have filed a lawsuit against the Infectious Diseases Society of America and several large insurance companies, claiming the IDSA’s development of the Lyme practice guideline, which recommends a short course of antibiotics, was influenced by insurance consultants trying to keep down costs.
Lyme patients need a longer course of antibiotics — perhaps many months — to eradicate the disease, the lawsuit claims.
Less dramatically, Lyme researchers continue to make progress, despite underfunding in comparison with other insect-borne diseases, such as malaria.
Ahern mentioned a paper just released by Dr. Utpal Pal at the University of Maryland, showing that B. burgdorferi fights human immune responses, allowing the persistence of disease symptoms like inflammation, even over many years.
“This had never been observed before and gives us insight into what could be causing these chronic Lyme disease cases,” Pal told the ScienceDaily website.
Ahern was exultant at the news of Pal’s research, saying that now the persistence of Lyme in some patients could not be denied.
Despite progress in research and understanding, Lyme disease remains an object of justified fear.
“I have long had a distinct paranoia about going into the beautiful old cornfield across the lane from my home,” Pfeiffer said.
She has loved over the years to walk in the field with her kids and now her four grandkids. But she sprays herself and the children with repellent and checks carefully when they get back to the house.
“This disease has made me and should make us all somewhat apprehensive about stepping foot in natural areas,” she said. “You’re going to come into contact with ticks.”
FACTS ABOUT LYME
• Lyme is the No. 1 vector-borne disease and the No. 2 infectious disease (behind chlamydia) in the U.S.
• Lyme has been reported in all 50 states and more than 80 countries.
• In the U.S., the Northeast has the highest infection rate. In 2014, Pennsylvania reported 75,000 new cases; Massachusetts, 53,000; New York, 37,400; New Jersey, 32,000.
• The Centers for Disease Control estimate 300,000 new cases of Lyme disease are occurring each year.
• Ticks carry other bugs, beside the one that causes Lyme disease. People bitten by ticks can develop both Lyme disease and serious co-infections.
• Lyme mimics other diseases and is frequently misdiagnosed as chronic fatigue syndrome, multiple sclerosis, ALS, Alzheimer’s, Parkinson’s and other auto-immune disorders.
• Ticks can transmit disease as soon as they bite. There is no minimum amount of time they need to be attached to infect a host.
• Rashes at the site of a bite are a sign of infection with Lyme disease. Sometimes, but not always, this rash takes a bull’s-eye shape. Not all people who are infected develop rashes.
• The standard Lyme disease tests look for antibodies, not the bacteria itself, and frequently return false negatives.
• Children are at the highest risk of acquiring Lyme disease.
(Source: Lyme Action Network)
The Lyme Action Network recommends taking the following steps to prevent getting bitten by ticks that can carry the bug that causes Lyme disease:
• Wear light-colored clothing so ticks can be spotted;
• Wear long sleeves and tuck pant legs into socks;
• Spray outdoor clothing with permethrin (available online), which repels ticks and kills them on contact. Do not spray on skin. Store sprayed clothes in plastic bags in the garage to re-use;
• Use insect repellent. Spray on outdoors and wash off when you come in;
• Repellents with at least 20 Percent DEET seem to be most effective. Natural repellents, such as rose geranium oil and citrus oil, seem to work but not as well as those with DEET;
• Do frequent tick checks on children, pets and adults;
• Throw clothes into dryer for 5 to 10 minutes after coming indoors. Heat kills ticks.