What You Should Know About Chronic Lyme Disease

 

Real Housewives of Beverly Hills star Yolanda Foster is making waves with her recent blog post about her struggle with chronic Lyme disease. Foster, who was diagnosed with Lyme in 2012, according to People.com, says she’s had severe mental impairment from her condition, writing, “I have lost the ability to read, write, or even watch TV, because I can’t process information or any stimulation for that matter.”

But don’t antibiotics cure Lyme disease and, if so, what exactly is chronic Lyme? Health has the scoop:

 

 

What is Lyme disease and how is it treated?

Lyme disease is a bacterial infection, caused by the bacteria Borrelia burgdorferi and transmitted by ticks. It hits more of us than we realize—the Centers for Disease Control and Prevention estimates that about 300,000 people are diagnosed with the disorder each year, about 10 times higher than the number actually reported to the CDC. Left untreated, it can cause symptoms such as headaches and neck stiffness, pain and swelling in joints, even neurological symptoms such as memory problems.

Lyme is diagnosed based on symptoms (including the distinctive “bull’s-eye rash”) and blood tests. Most people recover with a 21-day course of antibiotics, though if the disease has spread to your central nervous system, you may need a longer course (2-4 weeks) of intravenous antibiotics.

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Is there such a thing as chronic Lyme?

While in rare cases an infection can still persist, “when patients talk about chronic Lyme, they’re usually referring to what doctors term ‘post-treatment Lyme disease syndrome,’ where you still have a cluster of symptoms such as fatigue, trouble concentrating, and muscle and joint aches after treatment,” explains Brian Fallon, MD, MPH, director of the Lyme and Tick-Borne Diseases Research Center at Columbia University Medical Center. The CDC says approximately 10 to 20% of Lyme disease patients will have lingering symptoms like these. While it’s not clear what causes it, “it could be damage done to the body by the bacteria itself, or it could even be neurotransmitter changes in the brain induced by the prior Lyme disease,” Dr. Fallon says.

 

 

How is post-Lyme syndrome treated?

The treatment is itself controversial, mainly because it’s virtually impossible to tell if symptoms remain due to a recurrent infection or if they’re due to residual damage from Lyme. “The current diagnostic tests just reveal whether someone has antibodies due to previous exposure to Lyme disease, so while they indicate if you’ve ever been infected, they don’t show whether or not you’re infected now,” explains Dr. Fallon.

A small subgroup of doctors argue that the condition is caused by residual bacterial infection and should be treated with long-term antibiotic therapy for months or even years. (Indeed, animal studies do suggest that Lyme infection may persist in some cases, Dr. Fallon says.) However, groups such as the Infectious Diseases Society of America frown on this approach. “There’s no research to show that this type of treatment works—several studies have shown that people taking long-term antibiotic for Lyme disease to treat lingering symptoms fare the same as those who take placebo,” states Chris Ohl, MD, an infectious disease expert at Wake Forest Baptist Medical Center.

Dr. Fallon allows for another possibility: Lyme bacteria are “very slow growing, so if you go off antibiotics but find your symptoms return within two to three weeks, it’s highly unlikely that Lyme is the culprit,” he explains. “But if they return within a few months, or even a year, you may have a recurrent infection” and thus may need another (short) course of antibiotics.

 

 

If it's not really Lyme, what causes those symptoms?

It could be another condition entirely—such as another tick-borne infection. “It may very well be that [a patient has] developed an autoimmune disease such as rheumatoid arthritis, which was triggered by the Lyme disease,” adds Dr. Fallon.

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“Most of the cases I’ve seen, we’ve done a thorough workup and eventually come up with an underlying condition like anemia, a thyroid condition, a viral infection like Epstein-Barr virus, or even hepatitis C,” says Michael Parry, MD, Thomas J. Bradsell Chair of Infectious Diseases at Stamford Hospital in Stamford, Connecticut.

If extensive testing reveals nothing, then most doctors recommend cautious monitoring and addressing the symptoms (for example, treating joint or muscle pain with either over-the-counter or prescription anti-inflammatory drugs). It’s also important to utilize therapies also used with conditions like chronic fatigue syndrome, including good sleep and exercise habits and, if needed, treatment for depression.

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What You Should Know About Dog Ticks and Lyme Disease

I found a dog tick on my ankle. Do they cause Lyme disease?

Not Lyme, thankfully, but dog ticks can give you Rocky Mountain spotted fever, which can be just as serious, and even fatal. Despite the name, this infection happens throughout the country, though most cases occur in five states: North Carolina, Oklahoma, Arkansas, Tennessee and Missouri. Symptoms include fever, headache, vomiting and a red, spotty rash.

There are several species of ticks, each one associated with different diseases. For example, lone star ticks are more common in the Southeast and South Central U.S. and can cause ehrlichiosis, which leads to head and muscle aches, while deer ticks (the kind that transmit Lyme) are mainly in the Northeast.

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Ick, I know. But keep in mind that a bite doesn’t guarantee that you’ll get an infection. Not every tick is diseased, and removing the bug within 24 hours can reduce the likelihood of illness. Also, you don’t have to run to the doctor right away.

First remove the tick and snap a picture of it. Then, over the next few weeks, keep a close eye out for symptoms, either a red bullseye rash (suggesting Lyme disease) or a fever (an indication of many tick-borne illnesses). If you do develop symptoms, take the photo of the tick with you to the doctor. Knowing the type of tick that bit you can help her prescribe the right antibiotics, which are effective when started early.

Health‘s medical editor, Roshini Rajapaksa, MD, is assistant professor of medicine at the NYU School of Medicine and co-founder of Tula Skincare.

RELATED: What You Should Do If You Find a Tick

 

Why Is It So Hard to Get a Lyme Disease Diagnosis?

 

Avril Lavigne opened up again this week about her struggle with Lyme disease, a tick-borne illness she says left her bedridden for months and desperate for answers. The 30-year-old singer told Good Morning America this week that she saw many doctors and underwent a battery of tests in the last year, but that it wasn’t until she found a Lyme disease specialist that she was given a correct diagnosis.

“I was in Los Angeles, literally, like the worst time in my life and I was seeing, like, every specialist and literally, the top doctors. It’s so stupid,” Lavigne said in an interview televised yesterday. She says that some misdiagnosed her symptoms—debilitating pain and fatigue—as chronic fatigue syndrome or depression, while others told her she was simply dehydrated or exhausted from touring.

“This is what they do to a lot of people who have Lyme disease,” she said. “They don’t have an answer for them so they tell them, like, ‘You’re crazy.'”

Lavigne began to suspect she had Lyme disease—the number-one insect-borne disease in the United States—a few months after she began feeling exhausted and lightheaded. Her symptoms eventually got so bad she felt like she couldn’t breathe, talk, or move. “I thought I was dying,” she told People in April.

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So why did it take so long for Lavigne to get answers? And could her experience happen to others, as well?

Fortunately, most cases of Lyme disease are caught and treated much earlier, says Anne R. Bass, MD, a rheumatologist at the Hospital for Special Surgery in New York City, and this degree of misdiagnosis isn’t very common. But pinpointing this type of infection is not an exact science, and symptoms are not always crystal clear.

“Many people will develop a bulls-eye rash, which makes it fairly easy to diagnose,” she says. But this telltale symptoms is sometimes faint or on hidden parts of the body, and some people don’t get one at all.

“Other early symptoms, like fever or aches and pains, could be attributed to a virus or flu,” says Bass. “So if you don’t see a rash, you might not even go to the doctor—or it’s possible your doctor might not recognize it.” (Some Lyme disease cases go away on their own, she adds, so it’s possible to have had it and never known.)

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Most physicians, especially those who practice in tick hot-spots like the northeastern United States, know to look out for Lyme disease symptoms during spring and summer months. But the disease is less prevalent in Southern California, where Lavigne says she was seeking treatment. If a patient hasn’t had a rash and doesn’t remember being bitten, doctors there may be slower to identify ticks as a potential factor.

Bass says that anyone who’s experienced fatigue or joint pain for several months should think back to when their symptoms started, and whether they spent time in area of the country known for Lyme disease outbreaks. A blood test cannot confirm whether you are currently infected, but it can tell if you have been exposed to Lyme bacterium in the past. (It actually tests for antibodies, which develop a few weeks after a person has been infected and remain in the blood forever.) Doctors can use these test results, along with a person’s current symptoms, to make a diagnosis.

“But even these test results can be complex and confusing, especially for physicians who aren’t used to dealing with Lyme,” Dr. Bass says. Some doctors also believe that Lyme disease can be diagnosed without a positive blood test, she adds—although there’s no evidence that these methods are accurate or that antibiotics, in these cases, work any better than placebo.

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(Lavigne did not reveal exactly how she was diagnosed or whether she tested positive for Lyme antibodies, although she did say she had blood tests when she first became ill.)

Once Lyme disease is diagnosed, two to three weeks of oral antibiotics usually help patients feel better and eliminate all symptoms. If it goes untreated for several months, however, a longer course of drugs—usually four weeks—is often needed. In extreme cases, antibiotics may also be given through an IV.

Bass says that it’s uncommon for patients to be prescribed antibiotics for more than a month, even if they continue to experience fatigue and pain. “It does take longer for them to get better when there is a delay in diagnosis, but it doesn’t really change our duration or course of treatment,” she says. “They may just need to rest and take it easy a bit longer until they have their energy back.”

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Lavigne is finally feeling better, and says she expects to make a full recovery. That’s a good thing, since 10 to 20 percent of people with Lyme disease continue to experience symptoms for months or even years after treatment. This condition is sometimes called chronic Lyme disease, although it’s technically known as post-treatment Lyme disease syndrome.

Doctors aren’t sure what causes post-Lyme syndrome (some believe that symptoms are due to other tick-borne illnesses, or to chronic conditions like rheumatoid arthritis), and treatments like long-term antibiotic therapy are controversial. But a recent study from Johns Hopkins University showed that one thing is clear: Prolonged Lyme-related illness is more common than was once believed.

“Our data show that many people who have been diagnosed with Lyme disease are in fact going back to the doctor complaining of persistent symptoms, getting multiple tests, and being retreated,” the study authors said in a news release. “It is clear that we need effective, cost-effective, and compassionate management of these patients to improve their outcomes, even if we don’t know what to call the disease.”

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“Chronic Lyme Disease” Isn’t a Real Diagnosis. So Why Are Doctors Prescribing Risky Treatment for It?

Unproven treatments for symptoms sometimes described as “chronic Lyme disease” can be dangerous and even deadly, according to a recent report from the Centers for Disease Control and Prevention (CDC).

The paper, published in Morbidity and Mortality Weekly, documents several cases from recent years in which long courses of IV antibiotics and other supposed remedies led to septic shock and serious bacterial infections. What’s more, the authors say, there’s no evidence these treatments actually help the patients who seek them out.

Chronic Lyme disease is not a medical diagnosis, and the CDC recommends against using the term at all. Still, some doctors use it to describe situations in which a confirmed case of is treated, but the patient still has lingering symptoms. This condition, which is estimated to occur in 10% to 20% of Lyme disease cases, is technically called post-treatment Lyme disease syndrome, or PTLDS.

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Some doctors also use the term chronic Lyme disease to diagnose patients who have otherwise unexplained symptoms (including joint and muscle aches, fatigue, and neurological problems) but no actual evidence they were ever infected with Lyme in the first place.

When Lyme disease is caught early, within weeks of the first symptoms after a tick bite, most people recovery completely after a short course of oral antibiotics. For cases that have gone untreated for longer, a four-week course of IV antibiotics might be necessary.

If a person’s symptoms still don’t go away after that, though, that’s where confusion often sets in. Research on PTLDS is ongoing, and the cause of these symptoms is still unknown. Experts believe that some of these symptoms may be caused by residual damage to tissues and the immune system, and some may not be related to Lyme disease at all.

 

But one thing Lyme researchers know for sure is that longer courses of antibiotics do not lead to meaningful improvements; at least five randomized, placebo-controlled studies have shown this much. Nevertheless, some doctors still prescribe them for months or even years, says report co-author Christina Nelson, MD, medical epidemiologist for the CDC.

Other doctors or alternative-medicine practitioners recommend other unproven remedies—like IV infusions of peroxide, immunoglobulin therapy, hyperbaric oxygen therapy, electromagnetic frequency treatments, garlic supplements, colloidal silver, and stem cell transplants.

“We’ve known about cases like these for quite some time, but anecdotally, we did seem to be hearing about them more frequently,” says Dr. Nelson. A 2015 study noted a 50% increase in long-course antibiotic therapies prescribed for Lyme disease between 2004 to 2006 and 2010 to 2012. 

Doctors who provide these treatments “don’t typically follow the most commonly recommended treatments and the evidence-based guidelines,” she says, and they may diagnose Lyme disease even if blood tests are negative. “Most general practitioners and infectious disease physicians would not provide this type of care.”

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Besides being unproven, these treatments can be dangerous, says Dr. Nelson. In the paper, she and her co-authors describe a woman in her 30s who received a chronic Lyme diagnosis and, when oral antibiotics didn’t help her symptoms, was given three weeks of IV antibiotics.

She became sick and eventually died from septic shock. In another case of antibiotic-related septic shock, an adolescent girl survived but required several weeks of treatment in a hospital intensive-care unit.

Antibiotics work well for certain infections, but the use of long-term IV medicines—which require an “in-dwelling catheter” (often called a PICC line) to be inserted in the skin—can actually expose people to other dangerous bugs. “Other bacteria from the skin or from the hospital or wherever can enter through that IV line or attach to that IV line, and the drugs may not be effective against them.” says Dr. Nelson.

In another case described in the paper, a woman in her 40s tested positive for Lyme disease but didn’t feel better after four weeks of oral antibiotics. She received various IV antibiotic treatments over the next year and eventually developed back pain—which a scan revealed to be a serious bone infection.

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Another big concern with diagnosis of chronic Lyme disease is that the actual cause of a person’s symptoms could go ignored or untreated. This was the case for a 50-something woman diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. When she sought a second opinion, she was told she had chronic Lyme disease along with other tick-borne illnesses, babesiosis and Rocky Mountain Spotted Fever.

The woman was treated with herbs, homeopathic remedies, and antibiotic, antifungal, and antiviral drugs, and eventually developed an intestinal infection that caused severe cramps and diarrhea for more than two years. “She was on this cocktail of medications for months and months, and it set her up for the bad bacteria in her gut to take over and overpower the good bacteria,” says Dr. Nelson.

Dr. Nelson says the woman, who eventually died from complications of ALS, was simply trying to make sure she had pursued every possible treatment option for her symptoms. “She had gotten this devastating diagnosis, and understandably it can be hard to accept,” she says. “She wanted to make sure she was doing everything she could, and unfortunately this was a very tragic case.”

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These are just a few of the cases reported to the CDC in recent years, says Dr. Nelson, but they bring to light the very real risks associated with these types of unproven treatments.

The actual number of people who undergo these types of treatments—or who develop complications from them—is unknown, the authors wrote. They hope that more research can be done to better quantify this phenomenon, and to help more doctors and patients understand the dangers involved and make informed decisions about their care.