Editor’s note: This is the second installment in a three-part series exploring the debate over Lyme disease diagnosis and treatment, and how it has affected Rhode Island and those with the disease locally. To read the first part of this series, visit IndependentRI.com.
In addition to North Kingstown resident Joe Russo, The Independent spoke with three other area Lyme disease sufferers who say their illness went either undiagnosed or misdiagnosed for several years, changing their lives dramatically.
Russo’s friend and fellow North Kingstown resident Marianne Marolo said July 12 she was an avid sailor for 13 years before being bitten by a tick in 2012. She had no idea from what she was ailing until she was diagnosed with Lyme disease later that year.
“I can’t do anything right now,” said Marolo, who has seen seven doctors to date. “I can’t sail. It’s so frustrating because I sailed up and down the East Coast and now I can barely walk across the parking lot to my car.”
Marolo said she contacted the CDC via email for help, but received none.
Russo said he saw 24 doctors before he was diagnosed with Lyme disease. That total, over a four-year time frame, is now at 38, he said. He said the problem is compounded because “a lot of the doctors” are unaware of Lyme disease symptoms and appropriate testing. As a result, he said, patients are left suffering and without a proper diagnosis.
“So, I guess many people can have active Lyme or have Lyme [and be unsure of it], but over time, the damage can happen,” he said.
West Greenwich resident Jennifer Giblin has gone from being a professional gymnast as a teenager and a black belt in juijitsu to “having a lot of disabilities” and being mostly chair-bound. She said she was diagnosed with late-stage Lyme disease and eight co-infections with the disease, including infections affecting blood cells and vessels and linked to respiratory illness, head and muscle aches and other symptoms.
Giblin said she started “getting weak” in her late teens and early 20s, but thought she was just overexerting herself during athletic activities. Seeking answers regarding her condition as she pursued a general education degree and took computer courses, she said she was told “many, many times” that she had fibromyalgia.
But Giblin said her physical health continued to deteriorate, to the point that she regularly fell during her time in school and at work. She could not ride a bike because she would fall off, and she was unable to maintain a set body temperature.
“I got sicker and sicker,” she said. “My legs wouldn’t go.”
Giblin then sought out an infectious disease doctor, who told her she had Lyme disease and the co-infections. But he then said, “I don’t know what to do for you,” according to the now 40-year-old.
Giblin said she sought the expertise of more than 20 doctors and additional specialists, including neurologists and different rheumatologists, and they “could not figure it out,” although they agreed it was “more than fibromyalgia.”
“I was told I was too late-stage and had too many co-infections,” she said. “Primary care doctors didn’t even want to deal with me.”
Giblin also said Dr. Jim Gloor told her “many times” her disease was too late-stage even for him to treat it, although Giblin said she recommended friends with Lyme disease to see Gloor for treatment.
Giblin said she has resorted to self-treating her illness because she does not “have a Lyme doctor that can help [her] right now and it’s been like that for years.” She also recalled instances where her doctors refused to discuss her Lyme disease.
“When I speak to my doctor about it, he says, ‘Your Lyme blot test comes out negative.’ I’m like, ‘I have my records; I can show you the co-infections,’” she said. “He doesn’t want to look at it. He doesn’t deny it, but he won’t treat it.”
Giblin said since she turned 21, she was placed on disability by the state and has received limited SSI. She also said her Lyme disease has “gotten better,” but she is “still suffering.” Her father was recently diagnosed with Lyme disease, and she said he is suffering the same ill effects his daughter has experienced for 20 years.
Cumberland resident Tara Geraghty said July 11 her late husband, David, a high-school administrator in Pawtucket before he died in December 2015 at age 53, began feeling ill in the summer of 2013. He had trouble walking and felt joint pain when school returned to session that year.
Then, David’s health issues became respiratory in nature, she said, and doctors initially thought he had a disease that attacked his organs, a form of Guillain-Barre syndrome or Lambert-Eaton Myasthenic syndrome, myasthenia gravis.
“[The doctors] thought it was all those because he wasn’t reacting to [treatment],” Geraghty said.
Geraghty said David rarely went to the doctor, so no one knew what was wrong. Most of his immediate family had already passed away from cancer or diabetes.
In February 2014, David was scheduled to go on a cruise with his family, but was admitted to the hospital due to his illness. His children went on the cruise, and Geraghty subsequently received a call from the cruise ship saying her daughter, who was 12 at the time, had Bell’s palsy, a facial paralysis that is a Lyme disease symptom.
“And then I started looking into Lyme for Dave and said, ‘Oh my God, it has to be Lyme,’” Geraghty said. “I pull ticks off of him all the time.”
But then the battles with doctors began, Geraghty said. She said she regularly fought with physicians who maintained David was suffering from amyotrophic lateral sclerosis, or ALS, better known as Lou Gehrig’s disease.
Geraghty recalls doctors who would “look at me like I’m crazy, saying, ‘This is not Lyme; Lyme does not do this. It doesn’t show up in blood tests.’” She said she was forced to obtain a court injunction so David could be treated at a nursing home because the doctor there “did not believe” her and said it was “preposterous” he would have Lyme disease. One doctor even laughed at her, she said.
“The [doctor] literally told me, ‘You don’t know what you’re talking about,’” she recalled. “Every day, he sees people and diagnoses them with ALS when it’s probably Lyme. Lyme and ALS are a group of symptoms.”
Geraghty said she sent blood tests to Igenex, a blood lab in Palo Alto, California, after Coventry Health Center, which Geraghty praised, conducted the tests. The results, she said, concluded David had Lyme disease.
“I was like, ‘I ... knew it was Lyme,’” she said. “And every doctor fought me on it tooth and nail.”
Gloor later became David’s primary care doctor at the nursing home, Geraghty said, and the treatment improved David’s health.
“You don’t get better on ALS,” she said.
But Geraghty said David’s treatment, called plasmapheresis – a process of replacing affected plasma with new or substitute plasma – was stopped in April 2014 because his health improved. She said she fought for close to a year with doctors to get her husband back on the treatment because it was keeping him alive and fighting “several” of the eight co-infections his Lyme disease caused.
Doctors eventually restarted David’s plasmapheresis treatment in April 2015, Geraghty said, but stopped it again about seven months before he died because it “wasn’t helping,” as the co-infections were too strong.
Richalie Cotter of Taunton, Massachusetts, a patient of Gloor’s and Geraghty’s friend, said July 13 she began having “complicated migraines” 11 years ago and would experience “numbness throughout her body” and other symptoms that would “come and go.”
After seeing different neurologists and having spinal taps and getting blood work done, Cotter, at age 33, was diagnosed with multiple sclerosis.
Cotter said she started going to a clinic at Sturdy Memorial Hospital in Attleboro, Massachusetts, and went on medications, including daily shots. But nothing improved.
“I was still having these symptoms,” Cotter, now 41, said. “Nothing was getting better.”
During this time, Cotter lost her ability to walk, leaving her dependent on her daughter to bathe her daily. At one point, she was bed-bound for six months.
Cotter said she also twice went blind in her left eye, lost her job and had a “relapse,” causing her to go to Beth Israel Deaconess Medical Center in Boston for a two-month rehabilitation stint. The doctors, she said, told her the relapse was due to the MS.
About five years ago, Cotter’s sister was working in a doctor’s office and began having second thoughts about Cotter’s MS diagnosis. She suspected it might instead be Lyme disease, and Cotter had a round of blood tests performed at Beth Israel Deaconess.
Those tests found nothing, but Cotter sent the blood work to Igenex seeking an answer. The results confirmed her sister’s suspicions.
“That’s when it came back showing out of 21 bands, 19 showed positive [for Lyme disease],” Cotter said, also noting another “in-depth” test from Igenex also determined the diagnosis.
Cotter was recommended by Geraghty to see Gloor and was immediately placed on two oral antibiotics and one strong antibiotic called Bicillin, a shot taken once a week. Her antibiotics were switched every couple of months because the antibiotics would attack and the Lyme disease bacteria would “go into hiding.”
“You have to take different antibiotics to bring it out of hiding and attack it,” Cotter said.
Cotter’s health improved. She said her vision and speech returned and she was also able to walk again. But she still struggles with joint pain and fatigue, feeling as if she is “constantly running on empty.” She also fears relapses, which cause her brain to swell, triggering seizures.
“It’s just so scary because you never know when they’re going to hit again,” she said.
Cotter is currently off antibiotics and still regularly sees Gloor to monitor her progress. She considers Gloor her “angel” and said her life “turned around” after she began seeing him.
“Because if [I didn’t see him], I would’ve just cuddled in bed and probably just died,” she said.
North Kingstown resident Lane Poor points to Gloor’s battles with the state Department of Health as an example of physicians not being given the freedom to treat Lyme disease as they see fit, even though state law grants them that privilege.
According to Rhode Island General Law 5-37.5, under “Lyme Disease Diagnosis and Treatment – long-term antibiotic treatment” – a passage enacted in 2002 – a physician may “prescribe, administer, or dispense antibiotic therapy for therapeutic purpose to a person diagnosed with and having symptoms of Lyme disease if this diagnosis and treatment plan has been documented in the physician’s medical record for that patient.”
The law also allows the board to “deny, revoke or suspend” a physician’s license if the physician fails to monitor the patient’s care or keep proper records.
Jane Barrows, who runs Lyme Newport – the state’s only support group for Lyme disease patients – said she worked to have the law posted on the Rhode Island Department of Health’s website earlier this year. She described the law as having been “buried” for the prior 15 years, and spoke of a “three-year struggle” to have the health department also provide the International Lyme and Associated Disease Society’s treatment guidelines online.
Poor hopes an online petition will help get the state’s attention on the matter. Titled “RI Governor [Gina] Raimondo, Please Endorse and Enforce Our Forgotten Lyme Laws” and found on MoveOn.org, it asks the governor “to endorse and enforce our forgotten Lyme laws and help to restore hope, faith and trust in the medical delivery system for our tick-borne diseases.”
Poor’s petition has garnered more than 540 signatures, including more than 70 from North Kingstown residents – including state Sen. James C. Sheehan (D-Dist. 36, North Kingstown, Narragansett), who said he has Lyme disease and sought out Gloor for treatment – and approximately 20 more from Narragansett and South Kingstown residents, as of Aug. 18. Poor hopes to get 1,000 signatories for the petition.
Poor and a former North Kingstown elected official also believe the Department of Health targeted Gloor, based on an email the department’s current director sent out before Gloor was first investigated.
According to an April 5, 2012, email sent to more than 45 medical professionals under the subject line “Physician mismanagement of Lyme disease,” Nicole E. Alexander-Scott, then listed as a “Medical Director (Consulting)” with the department within the Division of Infectious Disease and Epidemiology, wrote there had been “several complaints” about Gloor treating Lyme patients “differently from the standard clinical guidelines.”
As a result, the message states, the Board of Medical Licensure and Discipline opened an investigation to “subpoena the records of patients negatively impacted by his Lyme mismanagement choices.”
“If you have had similar concerns, please recognize that the more patient records the board is able to review, the more substantial the investigation to assess for mismanagement,” Alexander-Scott wrote, also asking respondents to confidentially provide “case information and/or names of the patients” if they had “treated or recall cases negatively influenced by Dr. Gloor.”
Michael Fine, who was health director at the time, wrote to attorney Joseph Larisa Jr. about the Gloor investigations, stating he believed the accusations made against Gloor were “inappropriate” and that he was “very concerned with the apparent breach of protocol and professionalism regarding confidential Board investigations.”
Fine also wrote he would look into the matter and planned to take “any and all appropriate measures” to prevent re-occurrences of confidentiality breaches.
In an email to Sheehan dated March 4, 2015, opposing the governor’s nomination of Alexander-Scott to be the next health director, former North Kingstown School Committee member Lynda Avanzato asserted Alexander-Scott was “the architect of a witch hunt” against Gloor.
Avanzato said Alexander-Scott’s actions were a “direct contravention of Rhode Island law preventing disciplinary actions against doctors treating Lyme disease with long term antibiotics,” offering Alexander-Scott’s 2012 email – which Avanzato argues is a “gross and knowingly willful violation” of state confidentiality law – as her evidence.
“It struck me as how partisan [the email] was,” said Avanzato, who has seen Gloor for non-Lyme disease related illnesses since 2005. “It was directly about trying to get him in trouble and also it struck me the same thing [was] happening in other states. So, I knew it wasn’t just this issue and that just scared me. Some doctors … went out of business and I didn’t want that to happen here, especially since Rhode Island passed a law supporting these doctors.”
Poor also said he believes Alexander-Scott’s email seeking medical records violated the federal Health Insurance Portability and Accountability Act regarding privacy of medical information. He said he plans to soon file his own complaint against Alexander-Scott alleging “unprofessional misconduct.”
The Alexander-Scott and Avanzato emails, and the Fine letter, were all obtained by The Independent through a source. The Independent asked the health department in an email July 19 about Alexander-Scott’s email, why it was made public and if there was a predetermination made that Gloor had mismanaged his treatments for Lyme disease. Those questions were not answered.
Dr. Utpala Bandy, a state epidemiologist and medical director for the Rhode Island Department of Health’s Division of Preparedness, Infectious Disease and Emergency Medical Services – while not exclusively in the licensure and discipline office – said any investigation matters are confidential and declined to comment.