Lyme disease is a growing concern that affects approximately 476,000 people, according to recent estimates by the CDC. The condition features a variety of diagnostic challenges, which is why it’s often misunderstood. Misinformation, lack of standardized guidelines, and the absence of definitive testing also make the condition difficult to pin down.
According to studies by B.J. Webber at the U.S. Air Force School of Aerospace Medicine in 2019, around 53.3% of patients get false positives for Lyme. Similarly, surveys at the LymeDisease.org center suggest that 14% to 50% of patients are initially misdiagnosed with MS instead.
This brings forward the question: what are the doctors not telling us? How is this condition still so misunderstood? This article will offer some insight into the matter.
Lyme disease is a widely recognized tick-borne condition where bacteria spread through a tick bite. The illness is controversial because there’s debate on whether or not it could become chronic.
Once doctors deliver the Lyme disease treatment, all lingering symptoms are referred to as “Post-Treatment Lyme Disease.” As patients miss symptoms and doctors misdiagnose due to limited data, the immune system reacts negatively even after the supposed “healing.”
Lyme disease infections are caused by the Borrelia Burgdorferi bacteria (sometimes Borrelia Mayonii). The bacteria are carried by ticks and are transmitted to humans through their bites. Studies by the CDC in 2025 show that 50% of blacklegged ticks (Ixodes scapularis) carry the bacteria that cause Lyme.
Conventional data says that the tick has to be attached for at least 36 to 48 hours for the infection to spread. However, recent studies at the Canadian Lyme Foundation show that the disease can spread as soon as 12 hours.
Lyme disease exhibits a series of early symptoms once it enters the body. This includes the following:
The difference between early Lyme and late-diagnosed Lyme is that the former is treated with a course of antibiotics since it is an acute infection. If it’s missed, misdiagnosed, or overall dismissed, the patient develops late-stage complications.
Symptoms of these complications include neurological symptoms including memory problems, facial palsy, and disruptions in the heart rhythm. Most doctors stop the treatment once the flu-like symptoms go away, dismissing the lingering, chronic ones. The patients are left to suffer, which makes the condition so controversial.
Lyme disease is frequently misdiagnosed or missed because its symptoms mimic a variety of other conditions. It has been nicknamed “The Great Imitator,” as it can look like CFS, fibromyalgia, and even a series of neurological disorders.
Symptoms are inconsistent, as a rash sometimes appears and other times it doesn’t. The lack of awareness among doctors and unreliable blood tests make it difficult to catch the disease in its incipient stages. Studies done on ticks by the CDC show that infection percentage ranges from none to 50%. Since tick infections seem to be crossing borders, it’s difficult to predict the likelihood of them being an infection.
Some people infected with Lyme disease experience an erythema migrans, frequently referred to as a “bullseye rash.” This rash has a red spot at the bite point, followed by a clear layer, and then a red ring. It looks like a bullseye, hence its nickname.
Many believe that the rash is the first clear symptom of infection. However, based on studies from the CDC, Global Lyme Alliance, and more, around 30% to 50% of patients never get such a rash, causing the condition to be misdiagnosed.
Even if a rash appears, there’s no guarantee it will look like a bullseye. Some other rash types can include the following:
These rashes are easily mistaken for eczema, spider bites, ringworms, or even allergic reactions.
The average doctor frequently misdiagnoses the condition if the rash is not the classic bullseye. This can prove particularly harmful if the patient doesn’t recall the tick bite or doesn’t live in a hubspot for Lyme.
Lyme disease doesn’t always show up on standard test results due to delayed immune responses or incorrect testing timing.
The first test used to determine Lyme’s presence is the Enzyme-Linked Immunosorbent Assay (ELISA). This looks for antibodies that your body produces after Borrelia Burgdorferi infection. If the test shows positive, it’s followed by the Western blot test to confirm the result.
These results are useful, but their accuracy depends on proper timing and an individual’s immune response. False positives occur due to reasons such as:
To put it simply, tests will only detect the infection if the immune system behaves exactly as expected. Since that’s not always the case, many people end up being misdiagnosed or testing negative, despite having all the symptoms.
It is believed that Lyme disease spreads within 24 to 48 hours after the tick bite. Throughout this time, the tick has to be attached so it can transfer the bacteria during feeding time. However, the timeline varies from one individual to another.
In my experience, I have seen patients sick from Lyme even if the tick was not attached for long. I do suspect Lyme may be spread even at first bite.
The “24-hour rule” is increasingly challenged by patient reports and emerging research. This suggests that even a brief infection could lead to an infection of Lyme disease if the bacterial content is high enough.
Once the tick attaches to the body, it begins feeding and exchanging pathogens with the host. After it’s fed enough, the tick virtually starts regurgitating some of its contents back into the bloodstream. This includes digestive enzymes, saliva proteins, and sometimes Borrelia Burgdorferi.
Studies led by Agnetha Hofhuis at the Centre for Infectious Disease Control Netherlands show that there’s a 2% risk of developing Lyme within less than 12 hours after attachment. This may not seem like much now, but when compared to the 5.2% chance after four days, it can be quite concerning.
These limitations in transmission windows caused people to falsely assume they were in the clear. Many patients remove the tick early and assume they haven’t been infected. Since they don’t test, the condition goes untreated and leads to a series of complications.
Antibiotics don’t always prevent chronic Lyme due to Borrelia burgdorferi’s ability to evade treatment. Conventional wisdom believes that a short course of treatment is enough to clear the disease. However, research shows the matter is more complex than that.
Studies led by Felipe C. Cabello at the New York Medical College reveal that 20% of patients still develop post-treatment Lyme disease syndrome (PTLDS). In these cases, the antibiotics failed to fully stop the spread and associated long-term damage.
Early treatment fails when the patient experiences persistent symptoms after completing the treatment. These could linger for months, perhaps even years after a patient was technically “cured.”
Conventional medicine may try to argue that the infection is gone and these are just some “lingering” effects. However, some believe it to be a sign that the infection persists, despite treatment. The bacteria manage to survive the hostile conditions while evading detection, triggering long-term inflammation.
Co-infection with bacteria such as Bartonella or Babesia could also prevent the Borrelia burgdorferi from fully clearing. That’s because the body is doing twice the work with the same resources. The treatment was not strong enough to handle both, so the immune system failed to eradicate everything.
When Lyme becomes chronic, the condition evolves into something referred to as Post-Treatment Lyme Disease Syndrome. Whether you call it PTLDS or chronic Lyme, the reality remains the same: you technically test negative, but you’re still suffering.
As the infection persists, patients experience a series of chronic Lyme symptoms, including the following:
These symptoms linger over the next few months, perhaps even years. However, this is where things get controversial. Some say that the bacteria remain in the body, whereas others claim it’s an immune overreaction.
Mainstream medicine leans towards the latter. Still, the Borrelia Burgdorferi survives in the following circumstances:
Should this happen, what the patient feels is not just a “leftover.” It’s a sign that the bacteria are still there and waiting for the best moment to start multiplying again.
Doctors fail to tell you that Lyme disease is not a clear-cut disease with obvious symptoms. For decades, they said that you’re in the clear if you remove the tick within 24 hours, and that early infection goes away with antibiotics. That’s not always the case.
Real experiences with Lyme don’t always feature all the textbook symptoms. Many infected patients claim that they didn’t have a rash. This is confirmed by a 2024 CDC study, which says that 20% to 40% of patients don’t get erythema migrans.
Studies led by Eunice Chou also show that ELISA testing catches up to 40% of Lyme cases, but that also means that 60% remain undiagnosed. This caused the doctors to dismiss or overlook certain symptoms, leading to the condition worsening.
Doctors are trained to follow textbook symptoms, but the unspoken reality is sometimes different. Very often:
Patients are still suffering, but have lost their trust in conventional medical treatments. This leads them to turn to functional medicine so they address the root cause of the disease.
Co-infections and immune system issues worsen Lyme disease, making it more difficult to treat. What doctors fail to tell you is that ticks don’t just carry Borrelia Burgdorferi. They carry a whole cocktail of bacteria that get transmitted alongside the Lyme-causing one.
These can put a strain on the immune system. Instead of working to flush out one type of bacteria, it’s working on multiple types. With the combination of symptoms, doctors may not be able to diagnose the condition if the patient is unaware of the tick bite.
When you get Lyme disease, there’s a good chance other pathogens have made their way through your bloodstream. These co-exist in your body, and the immune system becomes overwhelmed.
Some common pathogens include the following:
Their presence puts extra strain on your immune system and delays recovery, triggers unusual symptoms, or causes the antibiotics to fail. According to studies at the University of Zürich, co-existing bacteria also share siderophores and enzymes. This way, they shield each other from the body’s natural defenses.
If you suspect Lyme, you advocate for yourself by taking action. The first 24 hours after a tick bite are critical. Waiting puts you at risk of Lyme disease, but rushing could lead to an incorrect tick removal technique.
If you get bitten by a tick, you need to take immediate action, starting with the tick removal. Here’s what you’ll have to do after a tick bite:
Sometimes, doctors prescribe prophylactic antibiotics (doxycycline, amoxicillin, cefuroxime) in a single dose if the tick is attached for more than 24 hours. It needs to be taken during the antibiotic window, which is 72 hours.
On the downside, one dose may not be sufficient or allowed by the providers. Plus, it may give a false sense of security, even if symptoms start later.
In my experience, if the tick did transmit Lyme, 1 pill has not shown effective at preventing acute and chronic lyme symptoms.
You should request a series of key tests after a tick bite. This includes the ELISA and Western Blot test, which are the CDC-recommended tests for Lyme.
Keep in mind that a test that came out negative in the first 2-3 weeks doesn’t rule out Lyme. You should still get a repeat test after 4-6 weeks if your symptoms persist and you suspect the disease.
If your doctor seems dismissive or unfamiliar with Lyme, ask for a referral. Doctors refer to specialists in this case, allowing for a second opinion.
Remember that patients are their own advocates. Push for differential diagnoses by asking what else it could be and testing for co-infections. Never settle for vague answers; a professional should be willing to answer your questions.
In my experience…
Doing an ELISA test only is extremely unhelpful. The traditional ELISA testing with reflex to western blot only if the ELISA is positive creates more issues with proper diagnosis. I had a patient who had a negative ELISA so it never reflexed the Western Blot. Thankfully I also ordered a stand alone Western Blot and she was CDC positive.
I can’t personally rely on Elisa in my patients, because it is rare it is actually positive. Remember, these tests are checking the immune response to these pathogens, not if the pathogen is actually in your body.
No, Lyme disease doesn’t always appear with a bullseye rash. In fact, about one-third to half the infected people don’t get a rash at all. Some even get a regular-looking rash that looks like a simple bug bite reaction. This leads doctors away from tick-borne diseases and delays treatment.
Conventional wisdom says no, but recent data says yes. Patient experiences say that Borrelia Burgdorferi can be transmitted after 12 to 16 hours, under certain conditions. This happens if the tick ate before attaching itself to you, causing it to regurgitate faster. Dr. Sue suspects transmission even occurs sooner than 12 due to her experience treating lyme patients for several years.
Are Chronic Symptoms All in Your Head?
No, the symptoms are not in your head. Post-Treatment Lyme Disease Syndrome (PTLDS), or “chronic Lyme” is real. It includes symptoms such as joint and muscle pain, persistent fatigue, and cognitive issues. However, this neurological Lyme condition is often overlooked because the test fails to detect the infection.
It can be Lyme, but there’s also a possibility of being something else. This is especially the case when co-infections occur. Babesia, Anaplasmosis, and Bartonella can be transmitted alongside the Lyme-causing bacteria, requiring a different treatment route.
Understanding Anxiety Anxiety is a complex condition that can have both physical and psychological components. From a holistic medical perspective, anxiety involves the interplay between genetic, environmental, and lifestyle factors. Here are a few takeaways from a holistic viewpoint: It’s
The month of April sees National Infertility Awareness Week, a full seven days dedicated to a struggle that roughly 17.5% of women in the world experience. Infertility can be one of the most isolating experiences for both men and women.
The art of relaxation… Some people reach for a glass of wine; others book a yoga class. But what if we told you there’s a new wave of relaxation taking the wellness world by storm? And what if we told
Let's Connect on Instagram
Sign up for my newsletter for the latest holistic health advice. By signing up, you will receive my Healthy Lifestyle Guide right away to your inbox! This guide will have the most important tips and tools to get started on a holistic lifestyle!
© 2024 Naturally Sue Wellness, LLC. All Rights Reserved. Privacy Policy | Disclaimer
Website designed with 🖤 by Mel Judson Design
Sign up for my newsletter for the latest holistic health advice. By signing up, you will receive my Healthy Lifestyle guide right away to your inbox! This guide will have the most important tips and tools to get started on a holistic lifestyle!
We will never spam you or share your email with anyone. In addition to the guide you’ll also receive semi-regular email updates with tips, tools, offers and exclusive resources. All emails include an unsubscribe link, you may opt-out at any time. Read our Privacy Policy to see how your data is handled.
