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 Oftentimes, this was because of outdated and inaccurate testing methods.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) want to cover some of the 2023/2024 advances in Lyme testing. There have been some upgrades and changes that you need to know about regarding 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!

Lyme and co-infections: How my family was personally affected

One of the main reasons I’m passionate about this topic is because inaccurate testing prolonged my wife’s battle with Lyme and co-infections.

When my wife got sick and started experiencing symptoms, I ran low-quality, poor testing. I didn’t know any better at the time. I trusted that the CDC-recommended testing was accurate. 

Because of this, my wife and I were led down the wrong path for years as we tried to figure out the cause(s) of her debilitating symptoms. 

Those early years of marriage were the roughest for us because my wife’s health was extremely poor. 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. 

Dr. Warren and wife Anne

Running bad tests is worse than not testing at all

Due to our experience, I truly believe that running inaccurate testing is just as bad, if not worse than not running tests at all. Here’s why: If you run tests that don’t produce accurate results, you rule those possibilities out, even though the illness could be caused by the problems that tested negative. Bad testing gives a false assurance and can make it even harder to know what’s really happening in your body. 

If you have unexplained symptoms and you live in a tick-endemic area like Minnesota, Wisconsin, the Northeast, or anywhere where there are ticks, thorough tick-borne illness testing for Lyme disease (and its various species) and co-infections (and their many species) is a must.

Why is Lyme testing so bad?

One of the questions I often get asked is “Why is Lyme testing so bad?”

Part of the reason Lyme testing is often inaccurate is because the main strain of Lyme, Borrelia burgdorferi, was only discovered in the mid-1980s. The testing for it came around in the 1990s, and the diagnostic and treatment standards for doctors haven’t evolved with the research that has come out since then. 

For almost 30 years, these standards haven’t been updated in Western medicine, and that is problematic, especially because of all the research that has been done in recent years. 

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 have fallen through the cracks of the medical system and have been left to suffer with their symptoms. It misses around 30-50% of people who have Lyme and co-infections.  

This isn’t giving patients accurate information, and the high potential to mislead patients is devastating to their lives and the lives of their families. 

CDC’s standard for Lyme testing vs. Lyme doctors

According to the CDC’s standard protocol for doctors, you first need to do an ELISA screening test for Lyme. If that’s positive, it’s followed by a western blot. Five bands need to be positive for it to be considered a CDC-positive case of Lyme disease. 

This criteria is extremely strict. It was originally meant for research purposes as a homogenous group of people who absolutely, without a doubt, had Lyme. The drawback of testing this way is that 30-50% of people who have Lyme disease are missed. Through this testing criteria, many people are told they don’t meet the criteria and aren’t positive enough for Lyme.  

Many of the doctors who started learning about and treating Lyme in the ‘80s and ‘90s, who have been working with Lyme patients their entire careers have been saying this for decades: The standards for Lyme testing aren’t adequate. Because of this, they decided to diagnose based on symptoms. 

On one hand, you have doctors who require strict criteria to diagnose Lyme disease, and on the other, you have doctors who don’t trust the testing and just base diagnoses on symptoms. This has been confusing for patients and medical professionals alike.

How specialized Lyme testing is better

A narrative you often hear in Lyme communities is that Lyme testing is 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 isn’t accurate 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.

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.

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?

Another misguided aspect of past testing involves the interpretation of antibodies. 

In the past, many doctors believed the following when testing antibodies of a Lyme infection: If immunoglobulin M (IgM) is high, it means it is a current infection; if immunoglobulin G (IgG) is high, it is a past infection. In other words, if a Lyme infection shows up on your IgG, they would say you have nothing to worry about; it’s a past infection.  

I cannot stress how wrong this is and how much it leads people astray. 

When you first get sick (also known as the acute Lyme stage), your body makes IgM. It takes about a week for your body to make this. 

It takes about three to four weeks for your immune system to make IgG. These are your long-term antibodies. The presence of IgG indicates you’ve had this infection longer than about a month. That’s it. It doesn’t mean it’s a past infection that’s already been conquered.

When it comes to Lyme, there’s the initial phase of infection, but after about two to three months it morphs into a chronic state.

Many people are IgG positive for Lyme, or they have IgG reactions, but doctors falsely tell them, “Oh, that’s a past infection.” But the only thing this tells you is that you’ve had it for more than a few weeks.

Almost every Lyme patient in my clinic has chronic Lyme. They have been dealing with it for months, years, or decades. When you’ve had it longer than a few weeks, we would expect it to show up as IgG-positive. 

In other articles and videos, I’ve gone over 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 actually still causing persistent symptoms. 

Remember: IgGs don’t indicate a past infection. IgGs just mean 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 a 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

The most common co-infections we find in Minnesota are Babesia, Bartonella, Anaplasma, and Powassan virus. It’s extremely important to know which infections you’re fighting because it will change your protocol. 

Just like Lyme, Bartonella is a bacteria. However, Lyme hates oxygen and Bartonella thrives off of it. This means they like living in different parts of the body. Bartonella bacteria love hanging out in the cardiovascular system. Because it’s a different bacteria than Lyme, you need to take different strategies to help support your body and fight it.

Babesia is a parasite, so fighting a bacteria versus fighting a parasite is also different.

Powassan is a virus, so helping your body fight a virus varies as well. 

If you know the combination of what you’re fighting, you can come up with a proper, effective strategy. This is why you need to run Lyme and co-infection tests and check for multiple species of each.

Test for multiple species of co-infections

Just as Lyme has multiple species that should be tested, the same goes for all of these co-infections. 

For example, in our clinic, we check for eight different species of Babesia, 10 different strains of Bartonella (which includes four different species), numerous tests for Anaplasma, etc. As with Lyme, there are multiple proteins and species you can match with co-infections. 

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?

Besides the tickborne illness panel, I also run a micronutrient panel that checks vitamin, mineral, and antioxidant levels. 

This test is imperative in understanding your body better. If you are trying to fight one or more of these bugs, your immune system may be running out of the raw materials it needs to thrive and fight back.

Whether you’re taking antibiotics or herbals to kill Lyme and co-infections, you still need your immune system to work properly. Whatever products you are taking won’t kill 100% of the bad bacteria, viruses, or parasites. It may kill a majority of it, but you need your immune system to finish the battle. You need to strengthen your body as you fight against these infections. 

The other reason this panel is imperative in your healing journey is because of the symptoms deficiencies can produce. 

For example, Lyme and co-infections can deplete energy and cause nerve problems, but when you’re deficient in vitamin B12, you’ll feel even worse. A vitamin B12 deficiency alone can cause fatigue and neuropathy, so having a deficiency will only add to the intensity of the symptoms caused by these invaders. 

After fighting 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:

  1. It helps us come up with a strategy to strengthen and support your body (particularly your immune system) as you fight off these bugs.
  2. 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?

Lyme testing ranges in cost. 

When someone comes to our office, we treat everyone individually. You’ll fill out your history and we will go through your symptoms. Based on your history and symptoms, we will customize the testing panel.

I can tell you from experience that most people will spend between $2,000-5,000 in testing to try to discover the root of their problems. A large part of that includes the most thorough tick-borne panel we can put together. 

As we mentioned, it’s also imperative to do 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? 

A concern many patients have is running these tests, only to have everything appear normal. 

This does not happen often. Usually, we run thorough testing and discover the problem. 

However, a few times a year, we’ll get a patient who comes up as borderline, even with good testing. When this happens, remember that certain co-infections, particularly Babesia and Bartonella, can suppress the immune system.  

If you’re borderline on the tick-borne panel, I can usually tell within two or three months if tick-borne illnesses are the issue or not. 

We would first nourish and strengthen your immune system. Then we would do part of the protocol to see if this brings any bugs that may be present out of hiding. In two to three months we would retest to see if your immune system is rising up to fight any of these particular infections. 

While it can take a bit of trial and error, I cannot stress how important it is to do accurate testing to know what you’re fighting.

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.  

To watch the correlating video on advancements in Lyme testing, click here. 

I hope this article helps you in your journey toward health. Remember: You can get better and you can be healthy! 

If this article was helpful for you, consider sharing with friends and family. Follow us on Instagram and Facebook for more information on Lyme and co-infections and other health topics. 

By Dr. Kyle Warren

Edited by Meghan Feir Walker

Summary

  • Inaccurate testing can prolong your battle against Lyme and co-infections.
  • If you have unexplained symptoms and are having trouble pinning down the source(s) of your symptoms, thorough tick-borne illness testing for Lyme disease (and its various strains) and co-infections (and their many strains) is a must.
  • Standard Lyme tests are outdated and inaccurate. It misses around 30-50% of people who have Lyme and co-infections.
  • While the standard, CDC-recommended testing may be a waste of money and time, more specialized, thorough tests aren’t.
  • The western blot test can be helpful in diagnosing Lyme disease, but additional tests should be used as well.
  • Newer specialized Lyme testing can test for multiple species of Lyme and co-infections.
  • 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.
  • We used to think different variations of Lyme were specific to certain regions. However, ticks and these different species are being found throughout the U.S.
  • IgGs don’t indicate a past infection. IgGs just mean the infection has been present for longer than a few weeks.

“…93% of patients with chronic Lyme have 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 a 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 found in Minnesota are Babesia, Bartonella, Anaplasma, and Powassan virus.
  • It’s extremely important to know which infections you’re fighting because it will change your protocol.
  • You need to run Lyme and co-infection tests and check for multiple species of each.
  • 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.
  • 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.
  • 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.
  • Besides the tickborne illness panel, I also run a micronutrient panel that checks vitamin, mineral, and antioxidant levels.
  • This test is imperative in understanding your body better. If you are trying to fight one or more of these bugs, your immune system may be running out of the raw materials it needs to thrive and fight back.

“Whatever products you take won’t kill 100% of the bad bacteria, viruses, or parasites… you need your immune system to finish the battle.”

  • Whatever products you take won’t kill 100% of the bad bacteria, viruses, or parasites. It may kill most of it, but you need your immune system to finish the battle.
  • Deficiencies can also produce symptoms.
  • Good Lyme testing ranges in cost.
  • Based on your history and symptoms, we will customize the testing panel.
  • Most people will spend between $2,000-5,000 in testing to try to discover the root of their problems. A large part of that includes the most thorough tick-borne panel we can put together.
  • 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.
  • If you’re borderline on the tick-borne panel, I can usually tell within two or three months if tick-borne illnesses are the issue or not.
  • If you know what you’re fighting then you can make a reasonable, effective plan to get better. 
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