This story is part of a partnership between MedPage Today and VICE News.
Mavis Kelly was diagnosed with multiple sclerosis a few years ago, but after seeking out a "Lyme literate" doctor, she says she actually has chronic Lyme disease, which the doctor says is an indefinite bacterial infection that hides in the body and must be controlled with antibiotics and other therapies.
Gideon Baugher says he also has chronic Lyme, and he spent more than $35,000 on treatments last year alone.
But according to the majority of doctors and medical groups, there's no proof chronic Lyme disease is real, and they charge that the so-called "Lyme literate" doctors who diagnose and treat it with years of antibiotics and other unproven therapies are quacks, and that they're taking patients — and their wallets — for a ride.
"Many people who like to use the term 'chronic Lyme' feel that there's a hidden persistent infection that is long-term," said Dr. Paul Auwaerter, the clinical director of the division of infectious diseases at Johns Hopkins. "There's really a scarcity of data to back up that part of the proposition."
What's more, Auwaerter said he regularly sees patients who've spent $10,000 to $20,000 on antibiotics and herbal supplements prescribed by Lyme literate doctors who charge "concierge-style" prices. He often finds that they never had Lyme and had an entirely different health problem that wasn't being treated.
Lyme disease is caused by the bacterium Borrelia burgdorferi, and it's spread via bites from infected black-legged ticks, according to the Centers for Disease Control and Prevention. There were 25,359 confirmed Lyme disease cases in 2014, according to the most recent data from the CDC.
The CDC also says the disease is curable. The National Institutes of Health, the American Academy of Neurology, the American College of Physicians, the American Academy of Pediatrics, and the Infectious Diseases Society of America all agree. Even if symptoms linger after treatment with antibiotics, the bacteria goes away, and studies have repeatedly shown that continued, long-term antibiotic therapy does nothing to alleviate symptoms. The most recent was published just last month in the New England Journal of Medicine.
A group of mostly primary care physicians, who call themselves "Lyme literate" doctors have bucked these medical institutions, and say that for people with what they call "chronic Lyme disease," the bacterium never really goes away and can cause a range of different symptoms for different people — even if they never test positive for Lyme disease via the standard tests.
Kelly, 46, of Virginia, was diagnosed with MS nearly a decade ago after doctors found lesions in her brain and she experienced double-vision, tingling, numbness, headaches, confusion, and a drop-foot. She sought a Lyme literate doctor after hearing about chronic Lyme on the radio.
Baugher, 77, of Maryland, was diagnosed with Lyme but still felt "sick as a dog" after his antibiotic course ended. After experiencing continued "burning" pain and itchiness, he sought a Lyme literate doctor at the suggestion of people who went to his church.
According to the CDC, early Lyme disease symptoms can include fever, chills, a rash shaped like a bull's eye, a swollen knee, fatigue, and achy muscles and joints. If the illness is left untreated for more than a month, however, its symptoms can include more severe joint pain, drooping on one or both sides of the face, confusion, irregular heartbeat, nerve pain, and severe headaches.
Kelly's Lyme literate doctor was so solidly booked, it took Kelly four months to get an appointment, which cost $700.
"He doesn't need to take insurance," Kelly said, adding that her drug plan covered many of her antibiotics, but not the herbs and other treatments the doctor prescribed. "People are willing to pay whatever the cost... People meandering, trying to figure out what the hell is wrong, are just so happy to have someone who actually gets it."
It took Baugher three months to get an appointment with his Lyme literate doctor, who also did not take insurance.
They've both been on either oral or intravenous antibiotics for years.
"You name it, I've been on it at one point in my life," Kelly said. "All the different medicine just gets to be a little bit like it's taking over your life. For me, it's manageable."
Kelly's Lyme literate doctor, Dr. Samuel Shor, president of the International Lyme and Associated Diseases Society, which has pushed for recognition of chronic Lyme, says the problem is that mainstream doctors don't want to believe in chronic Lyme.
"You've got clinicians who don't want to believe that this is within their rubric of specialty because they can't see the data," Shor said. "Unfortunately, a lot of folks, like myself who were forced to practice the art of medicine, believe what [patients] have to say for the most part, putting things together in a way that isn't rock solid. It's nuanced."
But in addition to being ineffective against symptoms associated with chronic Lyme, long-term antibiotics have been shown to result in various negative health effects, including kidney stones and yeast infections resulting from altered bacterial populations, said infectious disease specialist Dr. William Schaffner, chief of preventive medicine at Vanderbilt University Medical Center.
In a 2000 case study, a 30-year-old woman died after treating her chronic Lyme with intravenous antibiotics for 27 months. A month after stopping the antibiotics, she suffered a seizure and went to Mayo Clinic in Rochester, Minnesota. There, doctors determined that she had no signs of Lyme. She had developed an infection and died within a day.
Case studies have shown that patients who are diagnosed with chronic Lyme are later found to have other health problems, such as fibromyalgia. A case series published in the Journal of the American Medical Association last year included three patients who were prescribed long term antibiotics by "Lyme literate" doctors and actually had cancer, instead. One of them had stage IV Hodgkin's lymphoma, which killed him two years later.
It's been nearly ten years since Kelly's symptoms began, and she said she still has headaches, tingling skin, and "floaters" in her eye that obstruct her vision. When asked what the neurologist who diagnosed her with MS thought of the chronic Lyme diagnosis, she said he didn't know because she hasn't seen him in seven years.
"I was like, 'I really don't think I have MS, so I just stopped going,'" she said.
Baugher said the fact that he's still alive is proof that the antibiotics and other chronic Lyme treatments helped. Although he still sees his Lyme literate doctor, he's begun to see Auwaerter at Johns Hopkins, who takes his insurance.
"He doesn't have any infectious disease that I can tell but other health problems which we are investigating," Auwaerter said.
But Baugher isn't convinced. Auwerter says that happens about half the time because patients become so invested in their chronic Lyme diagnosis that it's difficult for them to accept that something else may be wrong.
Shor says he's he can prove that chronic Lyme is real, and points to a study he completed that he says measures a substance in urine that is only present when the bacterium that causes Lyme is also present and "burrowed" in the tissue.
"That was proof positive, from my opinion, that chronic Lyme exists," Shor said.
His study, published in the Journal of Translational Medicine in 2015, failed to make waves among mainstream doctors. The medical journal had an impact factor, which is used as a measure of the relative importance of a journal within its field, of 3.930. Two of the most respected medical journals, the New England Journal of Medicine and the Journal of the American Medical Association, have impact factors of 55.873 and 35.289, respectively.
Most people fighting for the recognition of chronic Lyme are family doctors, not researchers or academics, Shor said. As such, he said, mainstream medical professionals who don't want to believe chronic Lyme is real "influence and suppress research and publications" proving its existence.
But Schaffner said this argument doesn't make sense, because infectious disease doctors are basically turning down the opportunity to make more money by denying chronic Lyme disease exists.
Schaffner said he expects "continuing turbulence" regarding Lyme because of the vague aspects of lingering symptoms, but advocacy groups pushing for recognition of chronic Lyme — and only chronic Lyme — are not the answer.
"What you need is, rather than advocacy, a prospective control trial done in rigorous fashion," he said. "People need to raise questions and do studies and determine the answers and be prepared for positive and negative results."
To date, the best available research debunks chronic Lyme and the use of long-term antibiotics. But for patients desperate for answers about symptoms they don't understand or don't want to understand, a group of doctors, who may mean well, have made that research easy to overlook.
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