The Truth About Chronic Lyme Disease

Can a tick bite truly change your life forever? (Photo: Getty Images)

Last summer, South Carolina resident Julie Rambo felt totally rundown, unable to recover from the birth of her fourth child the year before. “I felt like I was dragging myself around,” she recalls. Rambo, now 35, found brief respite in her garden — ironically, the same place she would acquire an illness that would leave her in excruciating pain and often bedridden for the better part of a year.

That’s because one day last July, while gardening, Rambo was bitten by an insect no bigger than a poppy seed. Although the spot swelled up a little, “I didn’t think much of it,” she tells Yahoo Health. After all, Rambo had been bitten by a tick several years before with little effect, even though it had been attached to her shoulder for well over 24 hours.

But then, a week or two later, the flulike symptoms — chills, weakness, mental fog — began, along with what seemed to be a constant case of mastitis, a breastfeeding-related infection. “[My doctor] told me, ‘Oh, your body is just under a lot of stress. You need to go on a cruise,’” she says. “I was like, ‘I’ve had a lot of stress — this isn’t stress.’”

Yet a battery of blood tests revealed nothing abnormal, even though her symptoms continued to worsen. Determined to find answers, Rambo sought the care of a homeopathic nurse, who did more testing and suggested that an autoimmune disorder was to blame. “I was floored,” she recalls. “I knew I didn’t have lupus” — although she was, at one point, so exhausted she couldn’t care for her children and had to move in with her parents.

“Everything was kind of moving in slow motion. [I was] having trouble carrying on conversations, holding on to thoughts,” Rambo says. The joint pain was crippling. “I couldn’t even hold my 1-year-old, my wrists and hands hurt so badly. Even holding my cellphone was just excruciating pain.”

It was at this point, about a month after her symptoms began, that her primary care doctor suggested testing for Lyme disease, even though Rambo didn’t have the bull’s-eye rash that’s widely considered a hallmark of the tick-borne illness. She had, however, been bitten in the middle of Lyme disease season, which runs from May to September.

The test came back positive, marking the beginning of a yearlong journey of struggling for answers and seeking relief, all while trying to hang on to hope.

In 2013, the year before Rambo was diagnosed, there were only 33 confirmed cases of Lyme disease in South Carolina, her home state; in 2012, the stats were similar, with just 35 confirmed cases. Though Rambo was one of the unlucky few in South Carolina, the illness is far from rare in other parts of the country: About 30,000 cases are reported each year in the U.S., primarily in the Northeast and upper Midwest, according to data from the Centers for Disease Control and Prevention.

The often-debilitating disease begins with a bite from a black-legged tick infected, in North America, with the bacterium Borrelia burgdorferi. “Most humans are infected through the bites of immature ticks called nymphs,” according to the CDC. “Nymphs are tiny (less than 2 mm) and difficult to see.” A nymph is what Rambo suspects bit her in her garden, though it typically takes upward of 36 hours for the immature tick to transmit the bacterium — not the few seconds it took her to brush the insect away with her gardening glove.

In the early stages of the disease, three to 30 days post-bite, patients may experience fatigue, chills, fever, headache, joint and muscle pain, and swollen lymph nodes. This is also when the telltale red rash, called erythema migrans, may crop up, gradually expanding with time.

But contrary to popular belief, the rash doesn’t always have the ring-within-a-ring appearance that we’ve all heard is a sure-fire sign of Lyme disease. “People are looking for the bull’s-eye, like you see on the side of a Target store,” says John Aucott, MD, director of the Johns Hopkins Lyme Disease Clinical Research Center.

Most people look for a target-shaped rash, like this one, when diagnosing Lyme disease. (Photo: Paul Auwaerter, MD)

But the truth is, “that’s only about 20 percent of the rashes. The majority just are round and red” — in which case both patients and physicians may write the spot off as a spider or bug bite. “People miss the opportunity to make an early diagnosis,” Aucott tells Yahoo Health.

The rash that often signals Lyme disease doesn’t always have a bull’s-eye. (Photo: Paul Auwaerter, MD)

Left untreated, Lyme disease may progress over the course of days or weeks, with symptoms — joint pain, heart palpitations, Bell’s palsy — manifesting in parts of the body beyond the site of the bite. As many as 60 percent of untreated patients go on to develop late-Lyme arthritis, often in the knee.

Keep in mind, though, this is the course of the illness only when a patient isn’t given antibiotics. Typically, infected folks are prescribed oral antibiotics, like doxycycline, amoxicillin, or cefuroxime axetil, and quickly recover, especially if the disease is detected in its early stages.

However, there are also patients like Julie Rambo — those who take antibiotics and continue to experience symptoms for months, sometimes even years. In a 2003 study of people with culture-confirmed Lyme disease, all of whom had been treated with antibiotics, 10 percent were still symptomatic after an average of 2.6 years. More recently, in a 2013 study, Aucott found that six months post-treatment, 11 percent of patients continued to suffer from fatigue, widespread musculoskeletal pain, or cognitive complaints. In another study, Aucott and his co-researchers reported that half a year after treatment, more than a third of Lyme patients complained of new-onset fatigue, one in five said they had widespread pain, and nearly half reported neurocognitive trouble.

In early August of last year, Rambo’s primary care physician prescribed a one-month course of amoxicillin, to treat what was assumed to be mastitis. Then, when Rambo was officially diagnosed with Lyme disease — and the antibiotics hadn’t wiped out her symptoms — her doctor gave her an additional two months’ worth of the drug.

Julie Rambo found herself unable to care for her four children after being diagnosed with Lyme disease last summer. (Photo: Julie Rambo)

This is where Rambo’s story becomes controversial: When the amoxicillin didn’t work, she sought the care of a “Lyme-literate” physician, who prescribed a three-week round of doxycyline — another antibiotic routinely used to treat Lyme disease, as well as malaria — on top of the amoxicillin. Lyme-literate doctors, or LLMDs, are a small band of physicians who believe Borrelia burgdorferi infection can persist for months, sometimes years, necessitating long-term antibiotic therapy, according to an article in The Lancet.

In fact, the antibiotic treatment prescribed to Rambo — which extended weeks longer than is recommended for Lyme by the Infectious Diseases Society of America — was conservative by LLMD standards. “I’ve seen people on up to seven different antibiotics at a time,” says Paul Auwaerter, MD, clinical director of the Division of Infectious Diseases at Johns Hopkins University School of Medicine, who has spoken out against LLMDs in the literature, “sometimes in rotating fashion for a period of months or years.” This is despite the findings of two randomized-controlled National Institutes of Health-sponsored studies that showed that 60 days of additional antibiotics, after a 30-day course, are no more effective than a placebo at combating Lyme disease.

Even more controversially, it’s not just patients like Rambo — those who have tested positive for Lyme disease or have, at the very least, reported a tick bite — who are receiving such intensive antibiotic treatment. “Many patients who receive long-term treatment have no convincing evidence of ever having had B. burgdorferi infection, by history (sometimes including having never been exposed to ticks, never having been in an endemic area, and never having had objective clinical findings suggestive of Lyme disease), physical examination, or laboratory test results,” Auwaerter and his co-researchers wrote in a 2011 article in The Lancet.

“Some doctors, who call themselves Lyme-literate doctors, will say, ‘Ah, that symptom complex must mean you have Lyme disease,’” Auwaerter tells Yahoo Health. “Why do you have Lyme disease? ‘Because I have clinically diagnosed it.’ Clinical diagnosis means you’re not really relying on any tests.”

Auwaerter goes on to tell me that if I were to see an LLMD, he guarantees I’d be diagnosed with Lyme disease — a statement he makes because I have fibromyalgia, a chronic-pain syndrome that can produce strikingly similar symptoms to those that LLMDs label “chronic Lyme disease.” This condition is characterized by a cluster of subjective complaints, such as fatigue, muscle pain, headache, and impaired concentration. “Physicians come with a point of view,” says Auwaerter, suggesting that LLMDs may develop diagnostic tunnel vision, zeroing in on chronic Lyme disease without doing due diligence and exploring other potential causes of a patient’s symptoms.

Related: Avril Lavigne and 6 Other Celebrities Touched by Lyme Disease

Like many patients before me, I endured a frustrating medical guessing game and volleyed from doctor to doctor before finally being given a diagnosis for my symptoms. For months, I’d been experiencing joint pain, migraines, constant fatigue, and middle-of-the-night episodes that I can only describe as severe charley horses on the entire right side of my body, rendering me quite literally speechless. Finally, my provider settled on fibromyalgia.

But the truth is, the symptoms of chronic Lyme disease, fibromyalgia, and chronic fatigue syndrome are both similar and nonspecific. In fact, “they overlap with the symptoms that the general population has over the age of 40,” says Aucott. After months of searching — and feeling totally wiped out — patients are often understandably eager for the mental vindication a diagnosis can provide. “It’s very hard to live with uncertainty, especially in regards to your health,” Aucott explains. “Without a label, you can’t form predictions about what your future holds.”

For the past 100 years, doctors and patients alike have been trying to find a label — a catchall diagnosis — to explain chronic fatigue and related symptoms. Persistent infection is often the one they settle on. In the 1930s, it was brucellosis, a bacterial infection often transmitted through cattle. It can become chronic, leading doctors to believe, at one time, that worn-out folks were plagued by the bacterium. Then in the 1970s, doctors moved on to chronic infection with the Epstein-Barr virus (the cause of mononucleosis) and chronic yeast infection as potential reasons for persistent fatigue. “There have been many infectious pathogens put out as a universal cause for this complex of symptoms,” says Auwaerter. “I think Lyme disease is just one that currently has a lot of favor.”

That may be because being diagnosed with a syndrome — think fibromyalgia or chronic fatigue syndrome — often means accepting symptom-management as the extent of your treatment, since there are no cures and the conditions are often poorly understood, says Auwaerter. For this reason, these diagnoses are considered “unpalatable” and “pejorative” by some, he wrote in a 2015 editorial in Clinical Infectious Diseases.

By contrast, if you’re diagnosed with chronic Lyme disease, “this suggests we know the cause [of your illness],” he says, and according to Lyme-literate physicians, there’s a well-defined path to wellness: as many antibiotics as it takes to cure you, along with a bevy of alternative-medicine therapies. “Many people, I think, subconsciously favor that paradigm because it seems more clear-cut” than receiving a fibromyalgia or chronic fatigue diagnosis, says Auwaerter. In other words, the chronic-Lyme label gives sick people hope that, eventually, with the right drugs and, if necessary, alternative therapies, their illness will disappear.

When diagnosed with Lyme disease, Rambo wasn’t willing to simply wait for relief, to hope her illness would resolve on its on. “[My regular doctor] gave me an article saying I would have symptoms for up to a year to three years after my antibiotics,” says Rambo. “You can’t be happy with that: Don’t be satisfied with being stuck in your bed. Keep fighting for answers.”

As Auwaerter says in his recent editorial, “In essence, a responsible clinician using best available evidence often appears to be removing hope and therefore a pathway to improvement. This often further exacerbates the fear and anxiety of having disabling symptoms that may not improve — no matter how they are labeled.” Translation: The opinion of mainstream medicine is that symptoms of Lyme disease may truly persist even after antibiotic treatment, leaving patients to manage symptoms as they would if they had an ongoing syndrome like fibromyalgia. But that message isn’t a welcome one among patients.

For Rambo, who was determined not to accept this plight, long-sought hope came in the form of a parasite cleanse, a treatment recommended by her LLMD, which she does monthly, along with low-dose immunotherapy (LDI), which her church helped pay for because her insurance won’t cover it.

The idea behind LDI is that chronic Lyme disease is an autoimmune disorder — an immune-system flare-up, lingering long after the bacterium is gone — treatable with small, repeated doses of allergy meds. Her LLMD suggested it months ago, and after a particularly bad bout of Lyme-related symptoms this May, Rambo finally took his advice, contacting a doctor in Alaska who specializes in LDI for Lyme. “We Skyped and did an interview over the phone,” she says. “He put together my medicine and overnighted it to me. Right now, I take it every seven weeks.”

Rambo has also tried cryotherapy — a pain-relieving treatment that involves sitting in an extremely cold chamber for a few minutes — and swears by a combination of essential oils, which she drips down her back to help combat pain. “I’m telling you, I have been pain-free and symptom-free since May,” she says, though she still continues to do parasite and candida cleanses. Her success story, albeit after nearly a year of trial-and-error care, isn’t necessarily an uncommon one among patients of Lyme-literate physicians, though mainstream medicine insists that experimenting with unproven therapies is risky.

In a 2015 study, Auwaerter and his co-researchers identified more than 30 alternative therapies marketed toward people with Lyme disease, which he placed into five broad categories: 1) oxygen (e.g., hyperbaric oxygen chambers); 2) energy and radiation (e.g., lasers, heat, and magnets); 3) metal/chelation (e.g., mercury removal); 4) nutritional supplements (e.g., vitamins C and B12, fish oil, and salt); and 5) biological and pharmacologic (e.g., enemas, stem cell transplantation, and bee venom).

“These have not really been looked at with any rigor,” Auwaerter says, which is why he has referred to LLMDs as a “threat to public health.” “The cynic in me says this is a business model for these physicians,” he says. “The more empathetic side of me says these physicians truly believe they are helping patients with these alternative therapies.”

Related: Lyme Disease Symptoms: What to Look Out For

The chronic Lyme disease patient is often desperate — for answers, for validation, for help — and too often their experiences with traditional medicine are unsatisfying. In a 2014 BMC Family Practice study, people with chronic Lyme disease said mainstream practitioners were often dismissive of their diagnosis and the severity of their symptoms, leading many to seek LLMDs or alternative-medicine providers. “I do think these patients are often given short shrift in doctors’ offices because they have problems that are not easily solved,” says Auwaerter.

“There is no FDA-approved therapy at this point” for chronic Lyme disease, adds Aucott, “so people try all sorts of things” — and, unfortunately, many of the treatments are not without their side effects. Excessive antibiotic therapy has been linked to severe allergic reactions and sepsis, caused by infections around the IV catheters administering the drugs. (Rambo experienced serious stomach pain from her antibiotic therapy.) And wormwood, a supplement sometimes sold to treat Lyme disease, can cause seizures and kidney failure, according to the BMC Family Practice study. Another alternative-therapy marketed to Lyme disease patients, oral colloidal silver, is associated with kidney damage and neurological problems.

There’s also the element of cost. Since health insurance providers often deny coverage for alternative therapies, patients are left to shoulder the financial burden or, as Rambo did, seek help from the community. “I saw a patient who was on five medications. Her insurance wasn’t paying for them, so she was paying $1,000 a month out of pocket,” says Auwaerter. “She finally gave up after three years of treatment, because of expense.”

The mid-Atlantic region is one of the country’s hot spots for Lyme disease: There were more than 7,000 confirmed cases in 2013 in Maryland, Delaware, Pennsylvania, and Virginia alone, so it’s fitting that Johns Hopkins University, in Baltimore, is leading the charge in chronic Lyme disease research. Earlier this year, a group of the university’s researchers, lead by Aucott, launched the Lyme Disease Clinical Research Center, with the aim of developing better diagnostic tests for the early phase of the disease and creating a test to identify people with “post-treatment Lyme disease syndrome.”

Aucott and his team use this term — post-treatment Lyme disease syndrome — intentionally, insisting that, despite its clunkiness, it’s more accurate and clinically useful than the generic “chronic Lyme disease label” so casually tossed around. “Chronic Lyme disease is an imprecise label,” he says. “It would be like me saying, ‘You have cancer.’ Well, yeah, but what kind of cancer? I think it’s a starting place, not a final diagnosis.”

Post-treatment Lyme disease syndrome is a label well suited to patients like Rambo. “It is what the name says: It’s post-treatment Lyme disease syndrome, so [patients] have to have been exposed and treated, and then developed these symptoms,” explains Aucott. This label is sufficiently specific, helping to eliminate the cadre of patients who have never actually been tested for Lyme disease or, at the very least, potentially been exposed to the black-legged tick. Why this matters: “The key danger is that you’re treating something that either doesn’t exist — or you’re missing the diagnosis,” says Auwaerter.

In other words, too quickly labeling someone with chronic Lyme disease may mean missing the real root of the problem. “I saw a patient [recently] who ended up having a problem with their adrenal glands. They were fatigued, and they had Addison’s disease,” he says. Had he jumped to a chronic Lyme disease diagnosis, as some doctors are prone to do, this patient would have never received the hormone therapy necessary for the condition.

But how do patients react to being smacked with the dreaded “syndrome” label? They experience less frustration than might be expected, since unlike fibromyalgia or chronic fatigue syndrome, there’s a clear cause: previous Borrelia burgdorferi infection. “In other words, there is a distinct, identifiable trigger for the constellation of symptoms they are experiencing,” says Aucott. That’s half the battle in coping with a syndromic diagnosis, though patients are still left to deal with the fact that there’s no established treatment. “I address that frustration with the promise of our research to find new therapies,” he says.

“The most important thing is an accurate diagnosis first,” Auwaerter emphasizes, “and then from that would flow the proper recommendations.”

If the final diagnosis is, in fact, post-treatment Lyme disease syndrome, Auwaerter doesn’t suggest round after round of antibiotics. Rather, he borrows from the more well-established treatment handbook for fibromyalgia, suggesting low-impact exercise, cognitive behavioral therapy, and a sleep study to make sure patients don’t have a sleep-phase disorder that could be affecting their ability to bounce back. There are also FDA-approved drugs for fibromyalgia that can help decrease pain in people with post-treatment Lyme disease syndrome, he says.

In Auwaerter’s practice, these therapies, which are evidence-based, unlike many of the alternative-medicine options pushed by LLMDs, have proved “very helpful” for patients with post-treatment Lyme disease syndrome.

“We’re trying to come up with a specific test for post-treatment Lyme disease syndrome, so patients can be accurately identified,” says Aucott. “Then you can look them in the face and say, ‘I have a specific diagnosis for you. Here’s what to expect. Here’s a specific diagnosis that carries a specific prognosis and, hopefully in the future, [proven] treatment.”

Read This Next: Could You Have Lyme Disease and Not Even Know It?

Let’s keep in touch! Follow Yahoo Health on Facebook, Twitter, Instagram, and Pinterest.

Have a personal health story to share? We want to hear it. Tell us at [email protected].