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Top Ten Myths About Lyme Disease

by Jennifer Crystal

Lyme is an enormously complex disease. To properly understand its symptomology, diagnostic issues, and treatment options, you’ve got to do a good deal of research. And thats just for Lyme; there are many other tick-borne infections such as babesia, ehrlichia, and bartonella that cause their own complications and require different treatments. Then theres the politics of Lyme. Theres a lot of misunderstanding surrounding tick-borne illness, and many myths. This blog seeks to enumerate—and hopefully put to rest—the top ten myths I’ve heard about Lyme:

10. People get over Lyme: Yes, some people get over Lyme, especially when their infections are diagnosed and treated immediately, and their prognosis is not complicated by co-infections. Even so, some 20% of those patients go on to experience continuing symptoms after treatment. Other patients who were not treated immediately often suffer long-term, severe symptoms, especially once the Lyme bacteria has crossed into the central nervous system. My own case went undiagnosed for eight years. My status was called Stage 3 Lyme, also known as Late Disseminated Lyme Disease, and while Ive battled symptoms into remission, the infection is not fully eradicated from my body. Therefore, I am not cured.

9. All cases of Lyme are the same: In fact, no two cases of Lyme are alike. There is no typical” case of Lyme disease, especially once it enters the late chronic stage. Every case runs a different course; every case requires different treatmentand every case can have a different outcome. Lyme manifests on a broad spectrum.

8. People with Lyme are just anxious or depressed: Lyme disease can cause anxiety and depression. These are two psychological manifestations of the disease, not its cause. Patients may also experience situational depression and anxiety from being isolated, sick, and disbelieved. But anxiety and depression are secondary to the root tick-borne infection. A positive outlook, talk therapy, and psychiatric medications can help mediate anxiety and depression, but they cannot treat its root cause, which is Lyme disease.

7. Lyme patients would feel better if they just got out of the house/worked/volunteered: Lyme disease is not a mentality, nor is it a mental illness. It is a physical bacterial infection whose symptoms include serious fatigue, joint and muscle aches, brain fog, and other neurological difficulties. It cannot be cured with a mind over matter” approach. It requires antibiotic treatment and rest, like many other illnesses. Naturally, patients with Lyme disease dont want to be sick. They want to be working and making a living; they want to be exercising; they want to be enjoying their time with friends and family. But they are simply too sick to do so. And pushing themselves before they are well will in the long run only make them relapse. That’s what happened to me.

6. Lyme patients just need to exercise more: In fact, exercising before the infection has resolved enough can just worsen your spirochete activity (the bacteria itself) and make you feel worse, not better. This is especially true for people suffering from the co-infection babesia, which depletes oxygen in your red blood cells. When I tried physical therapy before my babesia was adequately treated, thirty seconds—not minutes, but seconds!—on a stationary bike gave me a migraine that sent me to bed for a week. Once a Lyme patient is ready, light exercise, but nothing too strenuous can be beneficial. Pushing yourself before it’s time will only worsen your condition. 

5. Theres no such thing as chronic Lyme disease: Chronic is a disputed word, often replaced by Post Treatment Lyme Disease Syndrome (PTLDS). But as its name implies, PTLDS only applies to patients who have been diagnosed with and treated for Lyme disease. Many patients whose infections become chronic were never treated at all. In my case, I became chronic precisely because for eight years I didnt receive a proper diagnosis or treatment. The Lyme bacteria, and two of its co-infections babesia and ehrlichia, ran unchecked in my body. Obviously, the pathogens then became much more serious and difficult to treat. The appropriate term for this kind of case is Late Stage Disseminated Lyme Disease. Whatever the nomenclature though, the fact is that long-term cases of tick-borne illness do exist and there’s definitive scientific research to prove it.

4. People who think they have Lyme disease actually have something else: 

Again, Lyme disease isn’t a choice. Nor is it a catch-all disease for those who can’t otherwise be diagnosed. A patient should never determine on their own whether they have Lyme disease, in the same way that you shouldn’t self-diagnose any ailment based on an internet search. The internet is full of misinformation. Only a Lyme Literate Medical Doctor (LLMD) can make an accurate diagnosis of tick-borne illness, and they do so through both specialized testing and clinical assessment. They rule out many, many other possibilities and make diagnoses after careful consideration of a patient’s symptoms and medical history.

3. There isnt scientific evidence to support chronic/late stage/PTLDS: In fact, there’s a lot of evidence. There are peer-reviewed studies and important research coming out of reputable institutions like Columbia University, University of New Haven, Stony Brook University, and the University of Massachusetts. There are many books and articles written by prominent physicians and researchers demonstrating clinical evidence of long-term, treatment-resistant Lyme disease. Global Lyme Alliance has supported a great deal of this research

2. You can only get Lyme in the woods of New England, and its only carried by deer: Cases of Lyme disease are now documented in all 50 U.S. states. There are also tick-borne diseases such as Rocky Mountain Spotted Fever, and Southern Tick Associated Rash Illness (STARI), that are endemic to other areas of the country. While ticks are especially prevalent in wooded areas, they also live in tall grasses, wood piles, gardens, leaf piles, and any moist or shady area. In addition to deer, they also feed on mice, chipmunks, birds, shrews, and other small mammals. Remember, pets can bring them inside your house, too.

And the Number One myth I hear about Lyme disease:

1. Its called Lymes disease: People might think Lyme, like many other diseases, is named for people who either discovered or suffered from them, i.e. Lou Gehrigs disease (ALS) or Hashimotos disease. The scientific name of the Lyme spirochete, borrelia burgdorferi, was named for the man who discovered it, Willy Burgdorfer. But the popular name comes from the town in which the first cluster of cases was discovered and studied in the 1970s: Lyme, Connecticut. 

The next time someone questions the validity of your Lyme or other tick-borne disease, perhaps you can hand them this top ten list, and teach them several truths about tick-borne illness in one quick lesson.

Related Posts:
You’re Not Crazy—You Have Lyme
Dealing With Brain Fog
The Importance of Digging Deep
Partisan Politics in Lyme Disease

 


jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at [email protected].

The Lyme Disease Divide

How to Make Sense of Conflicting Lyme Disease Facts

 

by Scott Santarella, CEO, Global Lyme Alliance

With the possible exception of HIV, no infectious disease in recent history has been as misunderstood and divisive as Lyme disease.  On one hand, there are tens of thousands of people suffering from debilitating physical and neurological symptoms who are unable to get the help they need from physicians, public health officials and insurance companies. On the other hand, the Infectious Diseases Society of America (IDSA) and the Centers for Disease Control and Prevention (CDC) maintain that Lyme disease is “easy to diagnose, easy to cure” and dismiss the persistence of symptoms over time, even after treatment. It’s no wonder that many people are confused about Lyme prevention, symptoms and treatment fundamentals.

Recently we’ve attended a number of public Lyme discussions held in Lyme endemic states and are both encouraged and concerned about how the disease is being discussed by the public and some in the medical community.

One event we attended focused on the very real threat of Lyme disease and children. Children ages 3-14 have a higher risk of contracting Lyme because they are physically closer to the ground, where ticks are plentiful. Children play in the grass, roll in leaves, run through bushes, thus increasing their exposure to Lyme-infected ticks. But because the symptoms of Lyme can be varied and non-specific—headaches, joint pain, anxiety, confusion, memory loss, anger, insomnia, for example— parents and teachers may not realize their children are ill. And physicians who are not well-versed in Lyme may not attribute it to the illness.

We were glad to hear speakers talk about the challenges in diagnosing Lyme and co-infections. If the disease is left untreated, it can cause a host of problems that can severely affect children’s long-term health, their behavior and school performance. Current Lyme tests are highly inaccurate, so diagnosis should be a combination of testing and a consultation with a Lyme-literate doctor.

Those attending the event walked away with a clear understanding of the true challenges related to Lyme disease in children. And also the importance of being a strong advocate for your child—you know their symptoms better than anyone. However, we attended another talk that was riddled with common misperceptions about the disease’s symptoms, diagnosis and treatment. A few examples:

What We Heard: Lyme is a very treatable, curable disease.
FACT: Although Lyme can be cured if diagnosed and treated in the early stages, up to 20 percent of those who are treated still go on to develop serious chronic symptoms including severe fatigue, muscle and joint pain, insomnia, headaches and “brain fog.”

What We Heard: It takes 36-48 hours for tick to infect a person.
FACT: The longer a tick is attached, the higher the risk of transmission. But it is possible to get Lyme disease even if a tick is attached for less than 24 hours.

What We Heard: If you have Lyme, you will see a clear bull’s eye rash, unless it’s on your back or somewhere hard to see.
FACT: Not everyone who has Lyme exhibits a rash, much less a bull’s-eye rash.  At least 20 percent of patients never develop the rash and fewer than 50 percent of Lyme patients ever recall seeing one. If you are “lucky” enough to see any type of rash, take a picture to show your doctor. A flu-like condition is also a common sign of Lyme infection and it can occur with or without a rash.

What We Heard: There’s a lot of bad press about the tests not being good.
FACT: There is still no reliable diagnostic test for Lyme. The standard blood test lacks sensitivity and is more than 55% inaccurate.

What We Heard: You shouldn’t need more than 4 weeks of antibiotics, 6 at the most if the patient requests it.
FACT: Existing guidelines from the CDC recommend against treating Lyme disease-positive patients with antibiotics for more than 28 days. However, up to 20% of patients treated with this recommended course of antibiotics will have lingering symptoms such as fatigue, pain, or joint and muscle aches. Longer treatment is advocated by the International Lyme and Associated Diseases Society (ILADS), based on a patient’s symptoms.

What We Heard: It’s very atypical with late Lyme disease for one’s hands and feet to be affected.
FACT: Although knee pain is most common in late-stage Lyme, the disease can cause pain and tingling in other body parts. In addition to Lyme, a tick can carry other tick-borne co-infections as well such as Babesia, Bartonella and Ehrlichia and transmit them in a single bite. When a patient suffers from atypical symptoms, a doctor must also consider possible co-infections as the cause.

What We Heard: Getting a tick tested for Lyme is unnecessary unless you think it helps the town learn how many cases of Lyme disease it has from ticks.
FACT: Some doctors will not treat a patient until symptoms of Lyme disease have manifested and this loss of precious treatment time often results in more severe symptoms. Tick testing can help you make treatment decisions before symptoms arise since testing may reveal the presence of other disease-causing co-infections the tick is carrying and transmitting.

The challenges in diagnosing Lyme and its co-infections early make it difficult for both the patient and the clinician. Knowing the facts about the disease can help. Your best option is strong prevention, but that’s not fail-proof. If you feel that you or someone you love may have Lyme, learn the symptoms and contact a Lyme-literate doctor for guidance. Please explore our website for the latest information, resources and support.

Scott Santarella