You may have heard of cases where people feel the symptoms of Lyme disease for prolonged periods of time. Avril Lavigne said she battled with it for years. Earlier in 2020, Justin Bieber revealed he had been suffering from Lyme as well. The symptoms associated with Lyme can persist for months or years, but doctors disagree about the reasoning behind why this happens, even after treatment. Terminology for what to call these cases is also not agreed upon. Some doctors welcome the diagnosis of "chronic Lyme," while others do not. It's complex — so let's get into it.
What Causes Lyme Disease and What Are the Symptoms?
Lyme is a tick-borne disease caused by the bacteria Borrelia burgdorferi. The CDC reports that Lyme is spread through the bite of infected blacklegged or deer ticks in the nymph stage of their life cycle (the phase before adulthood). The CDC also notes that around 300,000 Lyme cases in the US are reported to them each year as of 2018. However, that number is believed to be much higher. And, Lyme typically is found in the following areas: northeastern states from Virginia to Maine, north central states — mainly Wisconsin and Minnesota — and northern California.
In most cases, the tick has to stay attached to a person's body for 36 to 48 hours or more before the bacteria can be transmitted, according to the CDC. However, doctors are divided on how quickly transmission can occur. Mark Engelman, MD, founder and president of the Engelman Health Institute and director of clinical consulting for clinical immunology lab Cyrex Laboratories, told POPSUGAR that some literature suggests Lyme bacteria can be transmitted after 24 hours.
Early symptoms of Lyme are often easily mistaken for those of fatigue or even the flu. They include fever, chills, muscle and joint aches, and headache. Another common symptom is a rash that forms around a tick bite called erythema migrans (EM), which appears within a week on average. It looks like a bullseye or target, but it doesn't happen to everyone; it occurs in about 70 to 80 precent of cases, according to the CDC. Symptoms can get worse and result in neurological and cardiovascular complications the longer Lyme goes untreated. Infection that gets progressively worse and has not been treated for months or even years is referred to as late disseminated Lyme disease. People can develop arthritis, numbness in the legs or arms, heart palpitations, inflammation of the brain and spinal cord, and facial palsy (drooping).
How Is Lyme Disease Diagnosed and Treated?
Testing for Lyme bacteria in the blood is a two-step process to detect antibodies in response to infection, but sometimes, especially early on, you could test negative even if you present with symptoms. That's because, as the CDC explains, antibodies against Lyme bacteria usually take a few weeks to develop. Some doctors suggest that you, therefore, don't wait for the blood test to be positive if you're feeling ill. Dr. Engelman advised that if you know you were bitten by a tick and start experiencing symptoms, you should talk to your doctor about getting antibiotics.
Off the bat, though, doctors disagree on the best course of action for treating patients with a known tick bite (prior to known Lyme). Here lies the first problem, according to Paul Auwaerter, MBA, MD, clinical director of the division of infectious diseases at Johns Hopkins. He told POPSUGAR that some physicians give a short course of antibiotics as a means of prevention, which he advocates for — the recommendation by the Infectious Diseases Society of America (IDSA) and the CDC is that a single dose of doxycycline is effective in initially lowering the risk of developing Lyme — but some recommend long courses of antibiotics for prevention.
For instance, the International Lyme and Associated Disease Society (ILADS) has in its guidelines that doctors should use 20 days of doxycycline for known tick bites, and that using a single dose isn't effective enough in preventing infection. ILADS states, "This practice is based on a flawed study that has never been replicated." The CDC does recommend a similar course of antibiotic treatment, but only when Lyme disease is confirmed. ILADS guidelines recommend four to six weeks of antibiotics for early Lyme disease — separate from the preventative dosage.
Linda Williams, MD, a board-certified psychiatrist, further told POPSUGAR that she believes there are long-term functional impairments when patients don't get the proper treatment early on. She's been a member of ILADS since 2004 and was the first physician in Washington State to be trained in and treat patients with tick-borne illness under the ILADS guidelines. (She noted that ILADS offers a daylong course in Lyme fundamentals, though her training is ongoing through scientific seminars, and she's trained under physicians who have treated Lyme for 10 years or more.)
How soon patients recover depends on their immune response and how long they've had Lyme, Erica Lehman, MD, a board member of LymeDisease.org, told POPSUGAR (aka, the earlier it's caught, the easier it is to treat). It also depends on whether they have other infections. These are what are called "coinfections" spread by ticks — for example, Babesia, which is a cousin to malaria — and they can make treatment more difficult. However, Dr. Auwaerter said that these coinfections cause more of an acute illness than one that's chronic.
What Is Chronic Lyme Disease?
Simply put, we know that Lyme disease symptoms can persist for months or even years. According to the New England Journal of Medicine, 10 to 20 percent of people who are treated for Lyme experience lingering symptoms. What doctors don't agree on is what causes these prolonged symptoms and what should be used to treat them.
What Do Doctors Disagree on Regarding Chronic Lyme?
What Causes the Long-Term Symptoms
The CDC and National Institute of Allergy and Infectious Diseases (NIAID) refer to the concept of prolonged Lyme symptoms as post-treatment Lyme disease syndrome (PTLDS),, which Dr. Auwaerter further clarified is used to describe someone who has suffered from Lyme disease and gotten antibiotic treatment, but has persistent symptoms. The CDC specifically defines PTLDS as having symptoms that last for more than six months after treatment. "We have no definitive proof why some people feel unwell for post treatment Lyme disease syndrome," Dr. Auwaerter said. He's a member and former president of the IDSA, which he said follows standards set by the National Academy of Medicine and has a similar stance to the CDC on all things PTLDS (and Lyme disease in general, for that matter).
It's believed by ILADS that, in contrast, the actual infection persists, which is why they have adopted the use of "chronic Lyme" as terminology. As mentioned, tests for Lyme disease detect antibodies made by the immune system to fight off Lyme and, according to the CDC, your immune system continues to make the antibodies for months or years after the infection is presumed to be gone. Because of that, the CDC notes there is no test that can prove a cure. "This means that if your blood tests positive, then it will likely continue to test positive for months or even years even though the bacteria are no longer present," the CDC states.
Dr. Williams, who believes that symptoms could be a result of persistent bacteria themselves and the body's inflammatory response, points to a study published in 2012 that showcased the extraction of Lyme bacteria DNA from monkeys treated for PTLDS with antibiotics. The CDC does note that DNA fragments can be detected months after treatment, but that doesn't necessarily mean they are active or infectious.
One theory about why Lyme symptoms persist post treatment was noted by Dr. Engelman, who said that it could be due to the bacteria's biofilm, which might protect against treatment. He also noted that patients can feel like they have Lyme in the long term even if the infection is fully treated due to what Dr. Williams briefly mentioned: an autoimmune response after the fact similar to autoimmune responses from other infections, something the CDC talks about as well. Ultimately, it's unclear.
Long-Term Antibiotics and Proper Treatment
NIAID states that there is no known proven treatment for PTLDS, but doctors who argue that Lyme infection persists after treatment will make a case for long-term antibiotics. "To me, there's just not any evidence yet to back that theory sufficiently to treat my patients that way," Dr. Auwaerter said. NIAID reports that the extended use of IV antibiotics and oral antibiotics showed little to no effect on PTLDS in many studies. One in particular revealed that patients were more likely to feel less fatigue, but cognitive function didn't improve as consistently after 28 days of IV antibiotics. NIAID states that a positive response to treatment has occurred and might be due to a placebo effect. The CDC also notes that long-term antibiotics meant to treat Lyme can lead to serious complications.
The view of ILADS is that antibiotic retreatment should be considered after other potential causes are ruled out and a patient's quality of life is deemed impaired. They maintain that "the very real consequences of an untreated chronic Lyme infection far outweigh the potential consequences of long-term antibiotic therapy."
You'll also hear stories of patients spending hundreds of thousands of dollars on treatments for chronic Lyme — including alternative treatments that aren't necessarily proven to be effective. Dr. Auwaerter told Vice in 2016 that he's seen patients who've spent $10,000 to $20,000 on antibiotics and herbal supplements prescribed by Lyme-literate doctors. These doctors are often referred to as LLMDs, according to The Cut, which published a detailed feature on chronic Lyme last year. (Note: Dr. Williams said the use of the term LLMD is, in her experience, "entirely patient generated." Dr. Auwaerter said it seems to be self-declared, and he doesn't believe doctors in "mainstream medicine" use it.)
Across the board, it's a matter of ruling out other causes of these lasting symptoms, and treating these symptoms (and the persistent infection, if that is the doctor's belief). That's why you might see alternative treatments along with antibiotics. Dr. Lehman, who has a background in ophthalmology and has been treating patients with Lyme since 2009, specifically said she uses both functional- (like homeopathy) and western-medicine (namely, antibiotics) practices. In fact, she diagnosed and treated Bieber for Lyme disease. The Cut noted that one of Dr. Lehman's patients received nine months of ozone therapy, where "blood is drawn, mixed with ozone, and then reinjected into the body."
There is no "cookie cutter" recipe for treating patients, everyone is different, Dr. Lehman told POPSUGAR — adding that ozone therapy has long been used to kill bacteria. She suggested ozone therapy for patients who don't tolerate oral or IV antibiotics, or for those who want it in addition to antibiotics. The patient The Cut spoke to said ozone therapy made her feel worse, and it's important to note that there is no definitive research on the therapy's effectiveness on persistent Lyme symptoms. However, there are some anecdotal accounts of positive effects.
Overdiagnosis Vs. Underdiagnosis
Some doctors believe Lyme is overdiagnosed while others believe the opposite. Dr. Auwaerter makes his case for overdiagnosis, pointing to a study he worked on last year. It found that, out of 1,261 patients referred to an academic infectious diseases practice over presumed diagnoses of Lyme, around 72 percent were identified as not having Lyme disease. And, over 80 percent of those people already had antibiotic treatment. That being said, he noted that it's important to not be dismissive of a patient's fears (regardless, these symptoms are real and oftentimes frustrating).
ILADS argues that many doctors are missing a Lyme diagnosis and therefore are underdiagnosing. Despite acknowledging that there's a common overlap in symptoms, ILADS points to a study that suggested potential differentiation between PTLDS and chronic fatigue syndrome. The study, published in 2011, looked at cerebrospinal fluid (CSF) proteins in patients who were healthy, those with chronic fatigue syndrome, and those with PTLDS. Ultimately they were able to find proteins that only existed in one group or existed differently between groups, noting that this should be further analysed.
Dr. Lehman said persistent Lyme symptoms (what she called "chronic Lyme") could be misdiagnosed as neurological diseases like Parkinson's or Alzheimer's, but Dr. Auwaerter said he's seen the other way around. "Over the decades, MS, ALS, Parkinson's have all been hypothesized as due to Lyme disease, yet those diagnoses all occur in areas where Lyme disease doesn't exist. In fact, a patient who I saw suffered from 'chronic Lyme disease' for nine years. When she came to me, she actually had end-stage Parkinson's disease."
This brings us to another issue that comes up: patients having these long-term symptoms and not feeling like they are being believed, which The Cut feature goes in depth about. NIAID notes that the diagnosis of chronic Lyme has sometimes been used to describe symptoms in people who "have no clinical or diagnostic evidence of a current or past infection." Misdiagnosis in general can be harmful, all doctors agreed.
Having Persistent Symptoms You Think Might Be Lyme? You Have Options
Dr. Auwaerter advised the following if you're concerned about persistent Lyme symptoms:
- Speak with a family doctor or an internist who knows your history and is willing to sit down with you to come to a diagnosis.
- If you're experiencing pain, rheumatologists can be helpful.
- If the symptoms you're experiencing are mainly migraine or headaches, consider a neurologist.
- Infectious disease doctors are very good, he said, at helping sort through illnesses, interpreting blood tests, and trying to get patients on the right track.
In Dr. Auwaerter's opinion, if someone has had symptoms for months or years, a negative blood test for Lyme disease is reliable evidence that they are not or have not suffered from Lyme (this goes back to what we were saying before: blood tests can often be positive long after the fact due to antibodies). "I would say people can feel very secure that, if the test is negative, they should look elsewhere for an explanation of their symptoms."
And, ultimately, Dr. Williams said the most important thing to her is patient care — and that's how it should be for any doctor despite where they stand in the debate over the use of a chronic Lyme diagnosis. "Because the polarization between these groups that are within the Lyme community," she explained, "does not benefit the patient."