Lyme disease and associated tick-borne diseases are a serious public health problem in the U.S. Below are just a few facts to illustrate this issue:
- Lyme disease is the most common vector-borne illness in the U.S., with an estimated 400,000 cases per year.
- The Centers for Disease Control and Prevention (CDC) recognize at least thirteen common and emerging tick-borne diseases in the U.S., including Lyme, Tick-Borne Relapsing Fever (TBRF), the potentially fatal Rocky Mountain Spotted Fever, and more.
- Climate change and land use practices have caused tick hotspots to spread geographically, and warmer average temperatures are making tick season longer, increasing overall cases of tick-borne diseases.
In light of these trends, it’s important to stay informed on how Lyme disease and other tick-borne diseases spread, what symptoms to look for, and how to protect yourself. Unfortunately, there are lots of misconceptions about Lyme and other tick-borne diseases. Understanding the difference between myth and fact can help you protect yourself and your family from tick-borne diseases. That’s why IGeneX has gathered some of the most common tick and Lyme disease myths to set the record straight.
9 Common Lyme Disease Myths and Facts
Lyme Disease Myth #1: You can’t have Lyme disease if you don’t have a rash.
Fact: Symptoms of Lyme disease vary widely from person to person.
If you look up common symptoms of Lyme disease, you’ll see that one of the most distinctive signs is the erythema migrans rash, also known as the bull’s eye rash – a circular rash that spreads in rings around the infection site (tick bite). This can lead many to incorrectly assume that if they don’t have this bull’s eye rash, they can’t have Lyme disease.
In fact, it’s quite common to not have or not notice a rash with Lyme disease. Data varies widely, but research shows that anywhere from 20% to 70% of Lyme patients never develop a rash.
Other common early-stage Lyme symptoms, such as fever, fatigue, and muscle and joint aches, can also vary from person to person. If you think you’re experiencing Lyme disease symptoms, it’s important to obtain the most accurate testing possible from a reputable lab to confirm your case.
Lyme Disease Myth #2: You can’t have Lyme disease if you didn’t find a tick on you.
Fact: Many Lyme disease patients don’t remember ever being bitten by a tick.
Many cases of Lyme disease are caused by ticks in the nymphal stage, which are very small – about the size of a poppy seed – and difficult to see. What’s more, ticks drop off once they’ve finished feeding, so you may not have a chance to notice it. Finally, tick bites tend to be painless due to an analgesic contained in the tick’s saliva, making it unlikely you’ll feel the bite.
Note: If you do find a tick attached to you, it’s crucial that you remove it promptly and safely. The CDC provides guidelines for proper tick removal.
If possible, save the tick and send it for testing at IGeneX.
Lyme Disease Myth #3: You can’t have Lyme disease if you got negative Lyme disease test results.
Fact: It is possible to get negative test results and still be infected with Lyme or other tick-borne diseases.
There are many reasons you might receive negative Lyme test results but still be infected with Lyme disease. For one, the two-tier testing strategy recommended by the CDC is extremely limited. The tests used in this strategy (typically an ELISA and then, if and only if the first test is positive, a Western Blot) are only about 70-75% accurate and are not designed to detect all the possible types of Borrelia that cause Lyme disease.
It’s also important to understand that typical Lyme disease tests do not detect the presence of bacteria itself, but instead detect antibodies produced by the immune system in response to the disease. It can take days to weeks for the body to produce enough antibodies to show up on a test. If you test too early after the tick bite or use a test that is not sensitive enough, you could test negative but still be infected. Additionally, some patients who are immuno-suppressed may not produce detectable antibodies and so may need to be tested by an alternative method, such as PCR.
Finally, it’s not uncommon to test negative for Lyme disease but be infected with a different tick-borne disease, such as Tick-Borne Relapsing Fever, that has similar symptoms. This can cause a missed diagnosis that can be physically and financially debilitating.
Lyme Disease Myth #4: You can only get Lyme disease during the summer.
Fact: You can get Lyme disease any time of year.
While the ticks that cause Lyme disease – Eastern or Western blacklegged ticks, also called deer ticks – are most active in the summer, some are active in the winter and can bite at any time of year. This is especially true as climate change causes increased average temperatures and “longer” summers, allowing ticks to stay active for longer.
Lyme Disease Myth #5: Lyme disease is an East Coast disease.
Fact: You can get Lyme disease anywhere in the U.S.
Just as you can get Lyme disease any time of year, you can also get Lyme disease anywhere in the U.S. While cases are most common in wooded areas home to large mammals like deer – such as in the Northeastern U.S. and Pacific Northwest – cases have been found in all 50 states. What’s more, tick ranges are expanding geographically, especially as climate change allows ticks to survive in new areas.
It’s also important to note that Lyme disease is only one of many tick-borne diseases common in the U.S. As you can see from map below, tick-borne diseases are a threat in all 50 states.
Learn more about expanding Lyme geography in the Tick Talk article 7 Places You Wouldn’t Expect to Find Lyme (But Do).
Lyme disease isn’t the only tick-borne disease with a misleading name, either. One of the most common and dangerous tick-borne diseases in North America, Rocky Mountain Spotted Fever, is not just confined to the western U.S., as the name might suggest. The CDC acknowledges that it’s actually much more widespread than previously thought, and cases have turned up throughout the eastern U.S.
Lyme Disease Myth #6: The Eastern blacklegged tick is the only tick you need to worry about.
Fact: Many more American tick species can transmit diseases, including Lyme-causing Borrelia.
If you know anything about Lyme disease, you might know about the Eastern blacklegged tick or “deer tick,” which is commonly known to transmit Lyme. However, there are many different species of ticks in the U.S. that transmit diseases to humans, and even more ticks transmit diseases to animals. For example, the Lone Star tick is known to carry bacteria that cause several different diseases, including Lyme.
Lyme Disease Myth #7: Chronic Lyme disease isn’t real.
Fact: Untreated or undertreated Lyme disease can develop into a debilitating chronic condition.
Unfortunately there is a lot of misinformation out there about the true threat of chronic Lyme disease. Authorities like the CDC focus instead on conditions like Post-Treatment Lyme Disease Syndrome (PTLDS), in which a patient who has been diagnosed with and treated for Lyme disease goes on to experience chronic symptoms. However, chronic Lyme disease is not only real, but it affects all too many patients, partly because of the limitations in sensitivity and accuracy of the CDC-recommended tests.
It is important to note that untreated Lyme disease can absolutely develop into chronic Lyme disease, in which symptoms become much more varied, debilitating, and most importantly, difficult to treat. PTLDS does not accurately describe this problem, because it does not acknowledge the many people who never receive an accurate diagnosis and consequently go on to develop chronic Lyme.
Lyme Disease Myth #8: You can’t have a co-infection if you don’t have Lyme.
Fact: You do not have to be infected with Lyme disease in order to have a common Lyme co-infection.
The term “co-infection” implies simultaneous infections with multiple diseases. In the context of Lyme, the most common scenario is to be infected with both Lyme disease and another tick-borne disease, such as Babesiosis, at the same time. Because of this, many patients believe it’s not possible to have one of these co-infections if you do not have Lyme.
On the contrary, many ticks that are not known to carry Lyme do in fact carry other tick-borne diseases. For example, a bite from the Brown Dog Tick, Rhicephalus Sanguineus, can cause Babesiosis, Ehrlichiosis, and/or Anaplasmosis.
Lyme Disease Myth #9: You can only get Lyme or TBRF Borrelia infection, not both.
Fact: It is possible to be infected with just Lyme, just TBRF, or both at the same time.
Of the two known groups of Borrelia bacteria, one group causes Lyme disease while the other causes Tick-Borne Relapsing Fever (TBRF). Many are not aware that you can be infected with both Lyme and TBRF at the same time. Though most cases of TBRF in the US are caused by a different type of tick – known as soft ticks – than those that cause Lyme, some ticks that carry Lyme bacteria – namely the Eastern and Western blacklegged ticks – can also carry the TBRF-causing bacteria B. miyamotoi.
It’s important to note that symptoms of Lyme and TBRF are so similar, it can be difficult to distinguish between the two without accurate testing.
Because of the threat of chronic Lyme, co-infections, as well as the other realities of tick-borne diseases highlighted in this article, it is crucial that the public be aware of how these diseases spread, how they are diagnosed, and how to spot signs and symptoms so that you can get tested promptly with the most accurate testing. Explore your options for testing for Lyme or other tick-borne diseases with IGeneX today.