Chronic Lyme patients bemoan dearth of local doctors
By Cynthia McCormick Posted Jun 4, 2017 at 2:00 AM
Twice a year, Joanne Creel of Yarmouth Port and her husband, Clarence Eckerson, make a pilgrimage to the Hyde Park, New York, office of Dr. Richard Horowitz to get treated for Lyme disease and co-infections.
It’s a long day, punctuated by coffee on the way there and and a stop at a diner for lunch on the five-hour drive back to the Cape.
“I’ve gone 14 years to New York,” putting the bill on credit cards since Horowitz does not take insurance, Creel said. She said she doesn’t have a choice.
Despite the prevalence of Lyme and other tick-borne disease on the Cape and Islands, no full-time medical specialist in Barnstable County treats Lyme disease patients with persisting symptoms that include cognitive deficits, swollen joints, vision problems and anxiety and depression.
“All of these patients are out there,” said Creel, a social worker and former marathon runner. “There is no doctor who is specifically for Lyme patients.”
But at a time when the U.S. Centers for Disease Control says there are 300,000 new cases of Lyme a year, advocates for people with the disease say they are dismayed at the lack of resources available to study the illness and at the paucity of physicians who are willing to treat patients with lingering symptoms, a problem exacerbated by the fact most treatments for lasting symptoms consist of the controversial long-term use of antibiotics.
Now a physician from the Dean Center for Tick Borne Illness at Spaulding Outpatient Center Boston is calling for a massive effort to fund research and help patients whose lives have been uprooted by the disease named in the 1970s after an outbreak in Lyme, Connecticut.
“This is a national emergency. This is an epidemic,” said Dr. Nevena Zubcevik, clinical co-director of the Dean Center, which filled up shortly after opening in 2015.
“We should act fast,” Zubcevik said. “It’s just getting worse every year.”
And it’s not just Lyme. Co-infections including babesiosis, anaplasmosis, Borrelia miyamotoi and the Powassan virus are expanding their reach.
Lack of good diagnostic tools and limited physician time with patients — most appointments now run between 10 to 30 minutes — “are insufficient to properly evaluate the complex clinical presentation of a patient presenting with chronic effects of tick-borne illness,” Zubcevik said.
Patients can present with a “very complicated” cluster of symptoms including stomachaches, headaches, numbness and tingling, cardiac issues, hearing loss, eye and balance problems and —most detrimental — cognitive issues that can derail school work and cost people their jobs, Zubcevik said.
Lyme in its post-acute stages is known by various names including chronic Lyme, persisting Lyme, disseminated Lyme, late-stage Lyme and post-treatment Lyme disease syndrome.
Whatever the nomenclature, it’s not uncommon, Zubcevik said.
Research by Dr. John N. Aucott at Johns Hopkins University School of Medicine shows about 20 percent of people continue to have symptoms after being treated with recommended antibiotics after being diagnosed with Lyme disease, Zubcevik said. “We need to devote more research dollars to understand why.”
Katie Crocker, of Marstons Mills, said getting bitten by ticks, first as a child, upended her life.
Now 36, she had to quit college and go on disability while she dealt with a variety of symptoms from the Lyme and co-infections including headaches, joint pain, “air hunger,” sleep disorders, poor circulation and problems gaining muscle.
Her symptoms got worse after a bad car accident, said Crocker, who has since been treated. “My life just kind of stopped from chronic illness,” she said.
“It’s like having the flu for the rest of your life,” said Aucott, assistant professor of medicine at Johns Hopkins University School of Medicine and director of the Lyme Disease Research Center.
Aucott studies both acute and post-treatment Lyme disease syndrome and says he has proof that not all Lyme patients treated with antibiotics in the acute phase of the disease recover.
His 2015 study of post-Lyme patients published in the Infectious Disease Clinics of North America journal show that immune system proteins known as CCL19 chemokines remain elevated in post-treatment patients who complain of lingering symptoms of illness.
“The immune system is still active and talking to itself and moving immune cells around,” possibly to sites of inflammation, Aucott said.
The pain isn’t all in patients’ heads, Aucott said. It’s in their bodies and possibly their nerves or nervous systems, he said.
But figuring out what is driving the immune system to act out and how to treat suffering patients is the controversial part, Aucott said.
The few physicians who specialize in Lyme disease treatment, such as now-retired Dr. Sam Donta of Falmouth, include long-term antibiotics in their arsenal on the premise that bacterial infections are still present and active.
But the Centers for Disease Control, while acknowledging that symptoms can persist beyond six months, discourages the use of long-term antibiotics, citing studies that show them to be of limited or no use compared with placebos.
Patients may claim improvement, but those cases are anecdotal, said Dr. Patrick Cahill, an infectious disease specialist at Cape Cod Hospital. Cahill, who accepted an invitation to join the Barnstable County Tick-Borne Disease Task Force of which Donta is also a member, said there is no research that shows Lyme patients improve after more than 28 days of antibiotic treatment.
Cahill said he advocates for 10 days of treatment with doxycycline in early acute stages of Lyme and up to 28 days in cases where treatment has lagged or not worked, and Lyme has gone into a disseminated stage.
Inflammation and autoimmune responses could account for some chronic cases of Lyme, Zubcevik said. But animal studies have shown live spirochetes following antibiotic treatment, which suggests elements of persistence might be a factor in some cases, she said.
In a reversal of the usual Lyme disease transmission from tick to person, a study led by Dr. Linden Hu at Tufts University suggests it’s possible that “clean” ticks got sick after feeding on people who complained of lingering symptoms of Lyme including fatigue and arthritis.
One or two of the ticks who fed on the study participants showed the presence of Lyme pathogens after being tested by polymerase chain reaction in the lab, Aucott said. The study is currently in phase two, but Aucott said he could not comment since he is participating in the research.
If pathogen-free ticks pick up the disease after feeding on Lyme patients who complain of lingering symptoms, scientists consider it a good indication that the spiral-shaped bacteria that causes Lyme disease can survive in its human host even after being zapped for 21 to 28 days with antibiotics.
But until studies are complete, chronic Lyme patients and doctors who treat them say it’s cruel to deny patients the long-term antibiotics that many say improves their lives.
Long-term oral antibiotics prescribed by Dr. Nichola LaCava, of West Boylston, who travels to the Cape to see patients twice a month at Entire Healtha and Wellness in Mashpee “saved my life,” said landscaper Shelley Bouthillette.
She said she went to several physicians on the Cape and in Boston before seeing LaCava after a year and a half of misery with symptoms that including shaking, swelling of lymph nodes and one leg and unbearable itching. “I was bed ridden,” said Bouthillette, who credits LaCava for getting her back on her feet.
Donta, an infectious disease specialist in Falmouth who retired in 2015, said that one problem with clinical trials disproving the effectiveness of long-term antibiotics is that none of them lasted longer than three months.
His own studies — which are not considered double blind since they do not include a placebo group — demonstrate that a protocol involving different types of antibiotics can eliminate symptoms almost entirely, Donta said.
Solving the mystery of Lyme calls for a lot more research dollars, said Dr. Katherine Murray, of Plymouth, who said she follows Donta’s protocols but adds sulfa treatments to the antibiotics.
“There is so much we do not know about Lyme and so much that needs to be done,” said Murray, who said she only takes patients referred by their regular physicians. “It’s everywhere now.”
And so are the patients, as Lyme has reached every state but Hawaii.
The Dean Center, located in Spaulding at the Charlestown Naval Yard, has seen more than 650 Lyme and tick-borne disease patients since its launch and now has a waiting list of about a year for new patients, said Carole Stasiowski, spokeswoman for Spaulding Rehabilitation Hospital Cape Cod in Sandwich.
“It’s not going to go away. It’s only going to get worse,” Creel said. “Cape Cod Healthcare needs to realize they need to get a doctor here.”
— Follow Cynthia McCormick on Twitter: @Cmccormickcct.
Every state in the U.S. needs to realize they need to get doctors who treat tick borne infections!
Everytime I read something about Dr. Zubcevik I literally want to hug the woman.
This article truly brought up some great points. Please share.