2023/2024 Advances in Lyme Disease Tests
Dr. Kyle Warren
Meghan Feir Walker
As anyone in the Lyme community knows, Lyme testing can often be confusing and inaccurate and can lead to years of prolonged suffering without an accurate diagnosis. Many of my Lyme patients previously tried to discover the underlying causes of their health problems to no avail. Oftentimes, this was because of outdated and inaccurate testing methods. Because of this, I (Dr. Kyle Warren) will cover some of the 2023/2024 advances in Lyme testing.
WARNING: Because there is extensive information we need to share, this article is long. Although we encourage everyone to read this in its entirety, if you don’t have time to read the whole article, you can read particular sections or the summary at the end. Remember, the biggest waste of time and money is doing the wrong thing, so read on!
CDC’s golden standard for Lyme testing vs. Lyme doctors
According to the CDC, diagnosing Lyme disease requires a two-step process also known as the golden standard: first, an ELISA screening test, and if that is positive, you will have a follow-up western blot test.
For the CDC to consider a case Lyme-positive, five specific bands must show up. However, this strict criterion was originally created for research, resulting in 30-50% of real cases being missed. This has left many patients without a proper diagnosis. Through this testing criteria, many people are told they don’t meet the requirements and aren’t positive enough for Lyme.
Doctors experienced with Lyme have long criticized these rigid standards and often rely on symptom-based diagnosis instead. This divide between those strictly following the CDC's criteria and those trusting their clinical judgment creates confusion for both patients and healthcare providers.
How specialized Lyme tests are better
A narrative you often hear in Lyme communities is that the standard Lyme disease tests are terrible, so it's not worth the money.
That's true if you're talking about the standard, CDC-recommended testing. However, it’s not true when we’re talking about more specialized, thorough tests.
Today, several companies run accurate testing for Lyme and co-infections. For this reason, the idea that all Lyme testing is inaccurate just isn’t accurate.
Here are some ways in which Lyme testing has improved over the years.
Understanding the Western blot test: Running bands specific to Lyme
One of the standard tests is the Western blot test. While I don’t like the ELISA screening test used, the western blot test can be very helpful in diagnosing Lyme. In this blot test, different bands that are generally associated with Lyme bacteria are matched.
To help illustrate how this works, imagine the different ways you can be identified. Fingerprints are a very specific way to identify you. One of the broad things that can be determined about you is that you’re a human. It rules out other species on the planet, but it's not very specific.
Similarly, some of the bands on the Western blot will tell you this is a bacteria that has a flagella. However, 50% of bacteria have flagellums. Lyme is included in that, but it’s not a super specific way of identifying Lyme bacteria.
Certain bands such as a C6 peptide and bands 23, 31, 34, 39, and 93 are very specific to Lyme and don't cross-react with other things. This means that when those bands are positive, it carries a little more weight than some of the general bands. If you have specific bands that are positive, this can be helpful in diagnosing Lyme disease.
Lyme and co-infections: How my family was personally affected
Inaccurate Lyme testing led to years of misdiagnosis and prolonged suffering for my wife, severely impacting her health and our lives. I trusted the CDC-recommended tests, unaware that they were inadequate, which made finding the true cause of her symptoms difficult.
Both my wife and I know the strain chronic health problems (Lyme and co-infections, in particular) can put on your relationships, your parenting, your family, your career, and your life in general. It’s incredibly stressful when you keep searching for a cause, but you can’t find the source of the problems, let alone the solution.
This is why I’m so passionate about advocating for better Lyme diagnostics.
Running bad tests is worse than not testing at all
In my experience, inaccurate testing can be just as harmful as not testing at all. When tests show incorrect results, they rule out potential causes, leaving you in the dark. This false sense of security complicates diagnosis and delays effective treatment.
Keep in mind that Lyme and co-infections can be found anywhere now. If you have unexplained symptoms, comprehensive testing for multiple species of Lyme and co-infections is essential. It's especially necessary to test if you live in tick-heavy regions like Minnesota, Wisconsin, or the Northeast.
Why is Lyme testing so bad?
One of the questions I often get asked is “Why is Lyme testing so bad?”
The main strain of Lyme, Borrelia burgdorferi, was only discovered in the mid-1980s, and the testing for this species was developed in the 1990s.
For almost 30 years, the diagnostic and treatment standards haven’t been updated in Western medicine. Even with all the research that has been done, the standards haven't evolved, leaving current testing insufficient for accurately detecting Lyme and its many species.
We've discovered many holes in the standard protocols that we didn't know about in the ‘90s. By keeping these outdated methods in place, innumerable people (roughly 30-50% or more) have fallen through the cracks of the medical system and have been left to suffer from their symptoms.
These standard protocols aren't giving patients accurate information, and the high potential to mislead patients is devastating to their lives and the lives of their families.
Newer specialized Lyme testing can test for multiple species of Lyme and co-infections
The biggest improvement in updated testing methods has been the addition of checking for multiple species of Lyme, along with co-infections and many of their strains and species.
The main type of Lyme that has been checked in the past is Borrelia burgdorferi. That is the first species of Lyme that was discovered, but in the last 30 to 40 years, many other strains and species of Borrelia (Lyme) that can affect humans have been discovered.
For example, in the ‘90s Borrelia garinii and Borrelia afzelii were discovered, and in 2016, the Mayo Clinic discovered and named Borrelia mayonii.
Each species is a little bit different, but they usually present extremely similar symptoms.
About a third of my Lyme patients were previously told they didn’t have Lyme because they tested negative for Borrelia burgdorferi. However, they do have Borrelia, they do have Lyme, but a different type. This is why we run testing on about 16 different species of Borrelia alone in our clinic.
Can you test negative for Lyme disease and still have it?
One of the greatest problems right now is that people are falling through the cracks of the medical system. Since Borrelia burgdorferi is the only species of Lyme tested by Western medicine, they are missing a staggering number of patients who are left to suffer in the dark without answers.
This is why testing for multiple species of Lyme is crucial.
Are species regional?
We used to think different variations of Lyme were specific to certain regions. However, in the last several years multiple lab companies that offer these multi-species panels are finding that these species are everywhere. This is because ticks will latch on to animals, particularly deer, and the deer travel to different regions, thus spreading different varieties of tick-borne illnesses.
IGG vs. IGM: Is the infection current or conquered?
A common misconception in Lyme testing is that high levels of IgM indicate a current infection, while high IgG levels indicate a past infection.
Many doctors tell patients there is nothing to worry about if a Lyme infection shows up on their IgG. They tell them, "It’s a past infection." But this is incorrect.
I cannot stress how wrong this is and how much it leads people astray.
IgM appears during the first week of illness, while IgG takes 3-4 weeks to develop, marking a longer presence of the infection — not necessarily a resolved one.
Most of my Lyme patients are IgG-positive because they have been dealing with it for months or years. The reality is, IgG positivity simply means you’ve had the infection for over a few weeks and does not confirm the infection has been conquered. IgG indicates the infection has entered a chronic state.
In other articles and videos, I explain how Lyme changes from its normal active phase into a chronic phase (a stationary or biofilm phase). If doctors don't know that Lyme changes forms over time, they're going to be misled into believing it's gone when it's still causing persistent symptoms.
Remember: IgG doesn't indicate a past infection. It just means the infection has been present for longer than a few weeks.
The importance of testing for Lyme co-infections
Another major problem is that patients only get tested for Lyme and not possible co-infections.
If you have a chronic case of Lyme, meaning you’ve been sick with the infection for more than two or three months, you need to test for co-infections. This is because 93% of patients with chronic Lyme have co-infections, according to Dr. Daniel Cameron, the founder and former president of ILADS.
The vast majority of the time, you're getting multiple infections from the same tick bite that transmitted Lyme. The combination of these infections makes it nearly impossible for your body to ward off these infections without assistance.
You can also have one or more co-infections without the presence of Lyme disease.
The most common co-infections
In Minnesota, the most frequently found co-infections are Babesia, Bartonella, Anaplasma, and Powassan virus.
Each pathogen behaves differently in the body and prefers settling in different areas. Lyme hates oxygen, while Bartonella thrives on it, preferring the cardiovascular system. Babesia is a parasite, requiring a different approach than Lyme’s bacterial nature. And Powassan is a virus that also needs unique treatment strategies.
Identifying which infections are present is key to developing an effective treatment plan.
Test for multiple species of co-infections
Just as Lyme has various proteins and species, co-infections do too. For example, we test for eight Babesia species, 10 Bartonella strains (including four different species), and multiple variations of Anaplasma. Comprehensive testing reveals the specific species affecting your health and ensures your treatment plan targets each infection correctly.
Don’t base diagnoses on symptoms alone: Lyme and co-infections produce similar symptoms
While Lyme and each co-infection species vary a bit from one another, they can work together in many ways to protect each other and exacerbate symptoms.
Lyme and Bartonella can both cause intense neurological symptoms. Babesia and Lyme can cause breathing issues—but Bartonella can, too. All of these infections, including Powassan virus, can make you extremely fatigued.
This is why basing everything on symptoms can be problematic. It’s too difficult to differentiate which symptoms come from which bugs. Objective testing is incredibly important; it helps keep you on track, helps you know which infections you’re still fighting, and can help you decide on the best treatment protocols.
PCR testing
Another important type of test is PCR testing. If you can catch the DNA of the bug, amplify and identify it directly, that can be useful as well.
Our testing checks for multiple species of various bugs and checks for IgGs and IgMs, along with the PCR testing.
Running this thorough panel will help so many patients who have slipped through the cracks due to previous older, inaccurate testing methods.
Once you find what you’re dealing with, you can come up with a strategy to get better. If you don't know what you're fighting. It's hard to fight it and improve your health.
Do we run other tests besides the tick-borne panel?
Whether you’re taking antibiotics or herbals to kill Lyme and co-infections, you still need your immune system to work properly. Alongside Lyme and co-infection testing, I run a micronutrient panel on patients to assess vitamin, mineral, and antioxidant levels, which are essential for your immune system to function effectively. Antibiotics and herbals alone won’t completely eliminate these infections—your immune system has to finish the job.
For example, if you’re low on key nutrients like vitamin B12, you might experience worsening fatigue and nerve problems, which only compound the issues caused by Lyme.
By testing these levels, we can identify hidden deficiencies that may be hindering your recovery and tailor a strategy to support your body’s healing process.
After fighting Lyme and co-infections for a time, you may retest and find you are negative for certain infections, yet particular symptoms remain. Why do you still feel depleted? When we test your micronutrient levels, we can usually discover why.
We started using this micronutrient panel because:
- It helps us come up with a strategy to strengthen and support your body (particularly your immune system) as you fight off these bugs.
- It helps repair the damage these bugs have done to your body.
When your body has enough of the raw materials it needs to function, you’ll feel better and be more successful in your battle against these bugs.
What does good Lyme testing cost?
The cost of Lyme testing can vary significantly, typically ranging between $2,000 to $5,000 depending on the complexity of your symptoms and health history. At our office, we customize the testing panel for each patient to ensure we’re targeting the root causes, often including a thorough tick-borne panel and a micronutrient panel. Depending on your individual history and case, it may also be necessary to test for other causes that are contributing to your health problems.
You won’t be successful in getting better unless you know what’s causing your issues in the first place. If we can find the root cause(s), we can come up with a plan to improve your health.
What if you run tests and still can’t find the problem?
If your tests come back normal but symptoms persist, don’t lose hope. Sometimes co-infections like Babesia and Bartonella can suppress the immune response, leading to borderline results. In these cases, we focus on strengthening your immune system and then retest in a few months to see if the infections become detectable. It may take some trial and error, but knowing exactly what you’re dealing with allows us to create an effective treatment plan and track what’s working to get you back on the path to health.
If you know what you're fighting then you can make a reasonable, effective plan to get better. You can also track your symptoms as you’re going through the protocol to see when you started feeling better and which parts did or did not succeed. This helps us make adjustments until your tests come back negative and you feel energetic and healthy.
I hope this article helps you in your journey toward health. Remember: You can get better and you can be healthy!
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