Ten Facts About Lyme Disease Everyone Should Know

The misconceptions of Lyme disease leave patients searching for answers

In honor of Lyme Disease Awareness Month, I’m sharing what I didn’t know years ago.

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Information about Lyme disease is often misunderstood, misreported, and leaves patients searching for answers. I know. I’ve been one of them.

After years of research, I now have information that, had it been widely available years ago, would have prevented my son from becoming severely ill with Lyme and other tick-borne infections.

I’m not a physician, but I’m well-versed in the science of Lyme. I write about it to prevent others from experiencing what my son and I, and millions of other patients have experienced.

I’ll start with ten facts that everyone should know about Lyme.

1. Lyme disease is a bacterial infection that has been reported in every state and found on every continent except Antarctica.

Lyme disease is an infection caused by several strains of the bacteria Borrelia burgdorferi (Bb). The bacteria is transmitted to humans through the bite of an infected tick.

Ticks can also transmit other bacterial, viral, and parasitic diseases and infect pets and livestock too.

2. Lyme disease is the most common vector-borne disease in the United States.

According to the National Institute of Health (NIH), vectors like mosquitoes, ticks, and fleas, carry infective pathogens, such as viruses, bacteria, protozoa, and other parasitic infections. The most common way vectors transfer pathogens is through a bite.

The CDC estimates there are 500,000 new cases of Lyme disease each year in the United States, but Lyme experts believe the actual number of new cases is as high as 1–2 million new cases per year in the US alone.

3. Patients with Lyme disease are frequently misdiagnosed

Patients are frequently misdiagnosed with chronic fatigue syndrome, fibromyalgia, multiple sclerosis, and various psychiatric illnesses, including depression.

Misdiagnosis with these other diseases often delays the correct diagnosis and treatment, allowing the underlying infection to progress unchecked.

This was the case for me. By being misdiagnosed with Chronic Fatigue Syndrome and later with Lupus, the infections causing my symptoms were left to progress and infiltrate my nervous system, leading to a progressive autoimmune condition.

4. Lyme disease can be transmitted by an infected tick quickly

Transmission of Lyme disease and other infections can take place in a matter of minutes, particularly if the tick is not removed properly. Scientists from the Institut Pasteur used mice to study the transmission of bacteria by ticks infected with various European and North American species of Borrelia.

They found evidence of rapid bacterial transmission following a bite, with infection occurring within 24 hours of an adult tick bite and sometimes even sooner for nymph bites.

Animal studies indicate transmission can occur in less than a day.

Yet, the CDC website leads patients to believe that a tick must be attached for 36 to 48 hours or more before the Lyme disease bacterium can be transmitted.

Interestingly, the CDC does suggest that if you remove a tick quickly (within 24 hours), you can greatly reduce your chances of getting Lyme disease.

What we do know for sure is that other bacterial pathogens that cause serious disease and can be life threatening, can be transmitted rapidly.

For example, the CDC reports that Rocky Mountain spotted fever is a serious tickborne illness which can be deadly if not treated early.

The clinical timeline of RMSF on the CDC website notes:

RMSF can be fatal within 7–9 days. All patients with suspected RMSF should receive immediate antibiotic treatment with doxycycline.

So when it comes to Lyme and the suggestion that ticks need to be attached for 3–4 days, please know that you are at risk if a tick is attached for any length of time.

5. You don’t feel a tick bite, and you may never see the tick

You won’t feel a tick bite. The tick anesthetizes the skin as it bites you. It can attach, feed, and detach without you knowing.

Some ticks are so tiny that you’d never realize they’re attached.

Ticks Pictured (Left to Right): Deer Tick Larva, Nymph, Adult Male, Adult Female; American Dog Tick Adult Female and Adult Male (Picture from MN Dept of Health)

6. Lyme disease is known as the “great imitator”

Lyme disease can be mistaken for ALS, MS, Chronic Fatigue Syndrome, Fibromyalgia, Alzheimer’s, Parkinson’s, autism, and other illnesses. It’s called the Great Imitator.

Lyme disease can attack any of your body’s systems: cardiac, neurological, orthopedic, digestive, muscular, nervous, etc., and Lyme symptoms often look like other diseases.

7. Lyme disease can be transmitted from mother to fetus in utero

Research shows that Lyme disease and other infections can be spread from mother to fetus during pregnancy.

If you are pregnant and suspect you have Lyme, please find a Lyme Literate physician and get treatment.

Sue Faber is a Registered Nurse (BScN) and Co-founder and President of LymeHope, a not-for-profit organization in Canada. Faber’s specific area of expertise and research is in the compilation and analysis of the literature that exists on maternal-fetal transmission of Lyme and congenital Lyme borreliosis. She’s been on the cutting edge of this topic for years and recently presented: Perinatal Transmission of Lyme disease: A Path Forward, at the 2023 LivLyme Foundation Summit.

8. Lyme disease is a clinical diagnosis and standard Lyme tests miss more than 50% of all Lyme cases

According to the CDC, Lyme disease is diagnosed based on:

• symptoms

• physical findings (e.g., rash)

• and the possibility of exposure to infected ticks

Lyme disease is a clinical diagnosis although many practitioners still rely on outdated testing and most patients believe that a negative Lyme test means they don’t have Lyme.

It’s not that simple.

Standard laboratory diagnostic tests for Lyme disease are blood tests that detect the antibodies created by your body to fight and kill the bacteria that causes Lyme.

With early-stage Lyme, your antibodies may not have had time to develop in your body. Therefore, a blood test at this time will often appear negative.

It can take your body up to two months to develop enough antibodies to be detected by these tests.

In other words, you could have Lyme, but the test results will still come up negative.

Even later in the illness, two-tiered testing is highly insensitive, missing roughly half of those who have Lyme disease.

Unlike testing for HIV/AIDS, which is both highly sensitive and highly specific and accurate more than 99% of the time, standard Lyme disease testing misses more than 50% of patients.

Lyme disease is a clinical diagnosis and not one that should be made based on laboratory testing.

9. You can have Lyme disease without a bulls-eye rash

Whether you have a bulls-eye rash or not is another point that is often misunderstood and leaves many patients wondering if they have Lyme disease.

There are numerous divergent statistics regarding the presence of a rash.

According to MyLymeData, only 34% of patients with Lyme disease recall a tick bite or any rash.

The Centers for Disease Control and Prevention report that as many as 80% may exhibit an EM (erythema migrans, EM rash) but this number varies by region and study.

A 2010 study showed that in the state of Maine only 43% of Lyme patients exhibited the erythema migrans.

In 2019, the California Department of Public Health Annual Report cited only 33% exhibited the EM.

Furthermore, in a study by Dr John Aucott, only 20% had the bulls-eye presentation.

If you do have a rash, the best thing is to document it — take a picture next to a ruler so you can determine the size. This can be very helpful to a healthcare provider in evaluating the rash.

You can also draw a ring around the contours to see if it expands over time.

More importantly, know that you do not need to see a bulls-eye rash to have Lyme disease.

10. Lyme persists, and there are two vastly different opinions on how to treat it

The politics of Lyme disease are real and continue decades after the bacteria that causes Lyme was identified.

Most patients do not know that there are TWO standards of care for the treatment of Lyme disease.

The Infectious Diseases Society of America (IDSA), and the International Lyme and Associated Diseases Society (ILADS), each publish peer-reviewed Treatment Guidelines which have been accepted into the National Guidelines Clearinghouse within the U.S. Department of Health and Human Services.

As of March 2016, The IDSA Guidelines have been removed from the NGC for being out of compliance, and are currently undergoing review.

The two guidelines are vastly different and reflect the disagreements between these two organizations on a number of points relating to Lyme disease, including the question of whether the Borrelia bacteria can persist following treatment with antibiotics; the complexity of the disease; and the best approaches to diagnosing and treating it.

Despite irrefutable scientific evidence, the IDSA refuses to acknowledge new research such as that conducted at Northeastern University by Dr. Kim Lewis that found “persister” cells, a previously unidentified morphological form of the bacteria, can survive traditional antibiotic treatment.

In addition, definitive evidence of the persistence of the bacteria after antibiotic treatment was reported in 2021 and published in Frontiers in Neurology.

Monica Embers, associate professor of microbiology and immunology at Tulane University and a team of researchers found the existence of spirochetes in the brain tissue of a woman who had long suffered neurocognitive impairment after her diagnosis and treatment for Lyme disease.

The presence of the corkscrew-shaped Borrelia burgdorferi spirochetes in the former Lyme disease patient’s brain and spinal cord were evidence of a persistent infection.

Embers added:

These findings underscore how persistent these spirochetes can be in spite of multiple rounds of antibiotics targeting them.

To date, the IDSA has yet to acknowledge these findings.

The CDC exacerbates the problem.

Most patients may not know that according to the American Medical Association, when there are multiple Standards of Care for a condition or disease, the physician has an ethical obligation to present ALL options to the patient, and work with the patient to determine which option is preferred.

This is not happening in Lyme disease.

In fact, most patients do not know that there are TWO standards of care and that they have the right to ask for the treatment of their choice.

To make matters worse, insurance companies, medical facilities, and many medical practitioners only follow the outdated guidance of the CDC (IDSA), preventing patients from benefitting from new research, new treatment options and a better chance of recovery.

Patients and the general public need the following:

• to understand what is really at stake when it comes to Lyme disease.

• to understand the issues, the challenges, and the treatment options available to them.

• to know that there are options in terms of treatment, and if they are not told about both sets of guidelines, they must advocate for their options.

Whether you live in the country or the city — the risks of Lyme disease exist as soon as you step outside.

Prevention is key to avoiding Lyme disease.

Look for more about Lyme prevention in an upcoming article.

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If you’re wondering why I write about Lyme disease and chronic illness:

• I’m a patient advocate with the Center for Lyme Action

• I’ve spent six years researching the medical literature for Lyme and vector-borne diseases.

• I’ve worked with leading Lyme physicians.

• I’ve lived with Lyme disease for thirty years.

• I was misdiagnosed with Lupus and Chronic Fatigue Syndrome for more than two decades and dismissed by dozens of specialists before being properly diagnosed in 2018.

• I’m a mother to a child with Lyme disease.

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  A link to the ILADS Treatment Guidelines and additional Lyme Resources will be posted in a separate piece on The Power of Change in the coming days.