Just a few months ago, Elise Graham, 24, believed she was going to die.
"It hit a point where I became at peace with it," she told weather.com. "[My health] was completely out of my control."
Now, Graham knows through a clinical diagnosis that she has chronic Lyme, a controversial syndrome believed to be a more progressed version of the better known tick-borne disease.
Currently, there are more than 30,000 cases of Lyme reported to the U.S. Centers for Disease Control and Prevention every year, but experts believe around 300,000 are actually infected with the disease annually. For most Lyme patients, a blood test is conducted to confirm infection, and they are treated with antibiotics. But some develop chronic Lyme that either isn't detected by the routine blood test, or they never receive a test, typically because they aren't in a Lyme-endemic region.
Officially, the Infectious Diseases Society of America does not consider chronic Lyme to be a real condition, and believes the term is overused to describe other conditions that cause fatigue, muscle aches, headaches and neurological symptoms. On its website, it warns against any long-term antibiotic use without a known bug bite, rash or positive Lyme test. Paul Gisbert Auwaerter, M.D., the clinical director of the division of infectious diseases at Johns Hopkins, is one of the top doctors speaking out against chronic Lyme, arguing that the term is overused and calling some chronic Lyme advocates "antiscientists" who "pose a threat to public health" in an article in The Lancet Infectious Diseases.
Different than chronic Lyme is post-treatment Lyme, which occurs in 10 to 20 percent of patients who have a positive blood test and the routine antibiotics course. This condition is recognized by the CDC and most infectious disease specialists. These patients have "lingering symptoms," including "muscle and joint pains, cognitive defects, sleep disturbance or fatigue," according to the CDC.
Dr. Ray Stricker, M.D., the president-elect of the International Lyme and Associated Diseases Society and an internist who has treated thousands of chronic Lyme patients through his San Francisco practice, considers this denial of chronic Lyme partly a "political move" by some infectious disease doctors. "Thousands of [Lyme] patients go to these doctors and are told, 'what you have doesn't exist,'" he told weather.com, though the U.S. Centers for Disease Control and Prevention does acknowledge that "up to 5 percent of untreated patients may developed chronic neurological complaints months to years after infection" without naming the condition chronic Lyme.
Chronic Lyme advocates say it can occur when someone is bitten by a tick, but doesn't know it, or they don't have the bite's hallmark "bull's-eye rash," which is present in about 80 percent of Lyme patients, according to the CDC. Or patients can be like Graham, who had a visible bite, but didn't know it was from a tick, nor as a Texas native, knew that ticks could carry Lyme or other serious infections.
Cases like Graham's are a concern, as climate change is increasing the disease's range. (Right now, most cases occur in the Northeast and Upper Midwest, though it's been confirmed in every U.S. state.)
For Graham, Lyme disease hit like a bad cold; she felt ill and exhausted constantly.
Then other symptoms hit. "My hands and my feet started getting really numb and tingling," she said. "My balance was off; I started getting dizzy all the time. I felt like I was walking on a ship — I couldn't even walk in a straight line." That's when the healthy, active Graham knew something was really wrong.
The next few months were a blur of tests, as her symptoms worsened. Vitamin deficiencies, multiple sclerosis, lupus and fibromyalgia, even Lyme disease — all came up negative. "Things were getting worse and worse every day," she said. "I was having trouble breathing and getting air into my lungs. I felt like there was an elephant sitting on my chest."
Over Thanksgiving weekend 2013, she had stroke symptoms. "I just blacked out," she said. Late in the year, Graham couldn't function at work and had to temporarily move from New York City to her mother's house in Texas. That's when she read online about chronic Lyme, and everything clicked.
At that point, a doctor in Texas performed a clinical exam and diagnosed her with the disease. She's never had a positive blood test for Lyme, a problem typical of those who go through months of illness without a disease diagnosis, according to patient anecdotes, and one issue with the diagnosis of chronic Lyme, Dr. Auwaerter said in a video posted to the IDSA website.
Dr. Stricker said that problems with Lyme disease tests and treatment regimens could be eased with better study. "There are some combinations of antibiotics that seem to work better, but unfortunately there really aren't a lot of studies looking at the best regimens to treat chronic Lyme disease," he said. "We need new research and better drugs."
Graham has been on a non-antibiotic treatment program called the Cowden Support Program, which is a strict regimen of high-dose vitamins and other supplements, as well as lymphatic massage, since March. She's back at work and already feeling quite a bit better. "My friends who have known me for years were saying they can see a huge difference in me, that the light is back in my eyes," Graham said of her treatment plan. "The brain fog has been lifted. I feel like my personality is coming back." (She writes occasional updates about her condition on her blog.)
But some Cowden patients say it takes up to two years to work — another problem with the idea of chronic Lyme, said Dr. Auwaeter, who urges these patients to seek other medical attention.
Graham also eats soy, dairy, sugar and gluten free, an anti-inflammatory diet that she believes helps manage the condition. Many people with chronic conditions follow such diets and swear by them, but there are not many randomized controlled trials, the pinnacle of scientific study, to back up then up. (That said, any way of eating that is high in fruits, vegetables and lean protein and low in processed foods can be beneficial for overall health.)
Dr. Stricker noted that, as with most alternative remedies for other conditions, the Cowden Support Program is controversial and untested. "There's no real [scientific] evidence that they work, but there's theory that they work," he said. "If there were more research into better treatments, a lot of these [alternative treatments] would probably fall by the wayside," he said.
Besides a lack of research, Lyme is also difficult to treatment because it often comes with coinfections, also usually from ticks, he said. (Many patients compare Lyme to HIV, though Dr. Stricker says this is not "scientifically accurate," as Lyme does not destroy your immune system the way HIV does, and does not usually kill.)
Ticks are considered "sewers of infection," he said, a particular concern because of the ever-warming planet. "With global warming, we're certainly going to see the tick range expanding, and that's a very scary thing."
As for Graham, she was once skeptical of an alternative treatment program, but now, she's just glad to have her life back.