Everything you need to know about getting tested
By Dr. Kyle Warren
Edited by Meghan Feir Walker
In today’s article, we’re going to run through the various Lyme disease tests and almost everything you need to know about Lyme disease testing.
This is such an important topic because so many patients slip through the cracks due to unreliable and inaccurate test results. They wrongly assume they don’t have Lyme disease and go on an endless search for answers and relief. A chronic Lyme infection can completely alter someone’s life, and accurate testing and early diagnosis are vital to their health and well-being.
At RHS, we want to end the cycle of suffering and help you get answers and relief.
What is Lyme disease?
When people either get bitten or start experiencing symptoms, they go to the doctor hoping to get reliable testing, answers, and relief. If a doctor actually runs a test for Lyme (which doesn’t happen nearly enough), patients assume that the test is accurate. Unfortunately with Lyme, that is not a safe assumption.
Lyme is a bacteria and is most associated with the species Borrelia burgdorferi. However, there are other species of Borrelia that can also cause Lyme. Testing for only one species of Borrelia (Borrelia burgdorferi) is one of the biggest mistakes doctors make when testing for Lyme.
While B. burgdorferi is the most common Lyme disease species, many patients are infected with other species of Lyme. When doctors do think to test for Lyme, they’re still missing at least a quarter of Lyme patients that walk through their door. Different types of Borrelia include B. mayonii, which was discovered at the Mayo Clinic, or garinii, spielmanii, californiensis, etc.
Doctors must run multiple species of Lyme when testing.
What are the symptoms of Lyme disease?
When it comes to Lyme disease infections that are caught within a month or two, the symptoms often look like a case of the summer flu and often present joint pain, muscle pain, headaches, fatigue, etc. If you’re lucky, you’ll get a bullseye rash that will clearly show you are dealing with a Lyme infection. However, most people don’t get the classic rash (erythema migrans). They can present a different type of rash or don’t get a rash at all.
When the infection has not been addressed swiftly, it enters into a different phase and symptoms can present differently.
In the chronic stage, patients often experience chronic symptoms of severe fatigue, joint and muscle pain, headaches, neck aches, joint swelling, digestive problems, and numerous neurological issues. Some of the most common neurological issues include neuropathy, trouble finding words, insomnia, anxiety, depression, bouts of rage—really any symptom related to the nervous system.
Doctors should never solely rely on test results, especially when their tests are outdated and unreliable. They should base a diagnosis on symptoms, history, and testing, and that testing should be updated and more accurate.
Types of Lyme disease tests and testing accuracy
There are different types of standard tests used for detecting Lyme disease that vary greatly in reliability.
ELISA test (Enzyme-linked immunosorbent assay)
The standard for testing Lyme disease is the ELISA test, which commonly produces false negatives. The ELISA is also known as the screener test, and its technology is outdated and severely needs to be updated. This was originally created so testing could happen quickly in a hospital setting.
I personally think the ELISA test should be eliminated. It’s highly misleading and is a shockingly oversimplified test that misses a large portion of people. It has falsely led innumerable doctors and patients down the wrong path in their search for answers.
If the results of the ELISA come back positive, they will proceed to do a Western Blot test.
Western Blot test
The Western Blot is a more thorough test than the ELISA, but it still supplies far too many false negatives because of its strict criteria.
This test looks at 10 markers for the Borrelia burgdorferi B31 strain, but there should be at least 14 markers tested. Years ago, they took off bands 31 and 34 because they were developing a vaccine (that bombed, by the way). When they stopped production of the failed Lyme vaccine, they never put those markers back on the Western Blot test. This was a massive oversight on their part because they are excellent markers for Lyme and should be added to every Lyme panel.
There is also good evidence to support adding C6 and VlsE1 to the test. These are proteins that match what Lyme produces, and few or no other bacteria produce these types of proteins, making them terrific indicators of Lyme. If your immune system is trying to fight these proteins, we know it's specifically fighting Lyme disease.
At a minimum, the Western Blot should be upgraded to include these four markers. However, that’s not the only issue with the Western Blot.
Check for more than one species
Just as with the ELISA, this test checks for only one species of Lyme disease, Borrelia burgdorferi. You must test for other species of Lyme. At this point we have proven trans-Atlantic travel of these species, meaning ticks travel all over the place, just as humans travel. If you’re not running a panel that includes Borrelia mayonii, hermsii, spielmanii, garinii, and other species, the test is incomplete.
About a quarter of the people who have come to my office were slipping through the cracks of the medical system. No doctors or specialists could figure out what was wrong with them. If they did test for Lyme, they wrote them off because they didn't have that specific type of Borrelia.
Borrelia burgdorferi may have been the first species of Lyme discovered in the 1980s, but it’s not the only species of Lyme we’ve discovered. This single oversimplification has resulted in years of suffering, depression, hopelessness, and grief for thousands upon thousands of Lyme patients.
PCR (polymerase chain reaction) test
PCR (polymerase chain reaction) tests can detect bacterial DNA rather than antibodies for Lyme. In this test, you're actually directly finding the bug DNA, as opposed to the immunoglobulins test where you are testing to see if your immune system is fighting the bug.
If you get a positive PCR test, that’s excellent. Unfortunately, once Lyme has entered into its chronic phase it reproduces at a much slower rate. It is called a “low abundance bacteria.” This is true of the co-infections as well. In this case, the cell counts are lower, making it more difficult to find on a PCR test.
At our clinic, we run a lab that runs both tests. We conduct IgM, IgG, and PCR testing because those are different ways to look at what’s occurring in your body. You want to know if you can find the bug directly and what your immune system is trying to fight. Both types of testing offer beneficial information.
With chronic infections, the markers don’t show up as strongly as when the infection is acute, and this is important to keep in mind. Chronic infections move into different phases that are harder to detect. However, that doesn’t mean your symptoms have become any less aggressive. Quite the opposite many times.
While a chronic Lyme infection might not kill you, it can make you incredibly miserable.
If you've had a long-term infection, it will still show up when testing multiple markers. You can make immunoglobulin M (IgM) within a week of getting infected, and you can make immunoglobulin G (IgG) within three weeks.
What Does Lyme Disease Testing Look Like?
When testing for Lyme disease, what does the process look like?
At our clinic, we make it easy. First, we send you a kit in the mail that has all the necessary testing supplies and forms. You will fill out some of your information on the sheet and then the lab you visit for the blood draw will fill in certain information as well.
After receiving your kit, go to an Any Lab Test Now location or another approved lab (please check with our office to find other approved labs) and get your blood drawn by a phlebotomist. They will then ship it to a lab to get tested, and three weeks later, you will find out your test results. We will then go over your test results and what they mean and put together a plan to help you heal.
Who needs to be tested for Lyme disease?
If you have a known exposure to a tick bite and are presenting symptoms or the classic bullseye rash, it’s time to get tested immediately. If you don’t recall getting bitten and didn’t get a bullseye rash, that doesn’t mean you should rule out Lyme or co-infections as a possibility.
While ticks can be found practically everywhere in this day and age, you should be especially suspicious if you live near forested areas, spend time outdoors, or have pets that do. Places like Minnesota, Wisconsin, and the Northeastern states are especially vulnerable to tick-borne illnesses. If there are deer around you, then there are deer ticks.
Another cause for suspicion is if you have had mysterious symptoms and a difficult time getting diagnosed by your doctors.
Two of the most common diseases that Lyme often mimics are rheumatoid arthritis (RA) and anxiety.
How Lyme mimics rheumatoid arthritis
Because Lyme can cause immense, chronic muscle and joint pain, headaches, neck aches, and more, it often appears to be inflammatory arthritis. You then get sent to a rheumatologist who tests for RA markers. Even if those results come back negative, these doctors have been taught for 30 years that chronic Lyme isn’t real, so 9.9 times out of 10 they won’t mention Lyme as a possible cause of your symptoms.
Although the CDC finally (and quietly) changed its stance in 2022, that doesn't mean the 30 years of education these doctors and rheumatologists had will be undone in a year or two—if they’ve even heard about the CDC’s updated take on chronic Lyme at all.
For this reason, they get confused because it looks like rheumatoid arthritis, but your RA markers aren’t conclusive. It resembles some kind of inflammatory arthritis, but the test results aren’t definitive. At this point, many people either get dismissed or placed on anti-inflammatory medications that merely mask a bit of the pain.
If you have been tested for RA or inflammatory arthritis and your results come back negative, this should make you extremely suspicious of Lyme being the cause of your pain.
How Lyme can cause anxiety
Anxiety is another hugely common misdiagnosis for Lyme.
Columbia University has done wonderful work in recent years researching the neurological presentations of chronic Lyme disease and has showcased its effects in various ways. They have highlighted how chronic Lyme can cause issues like sleep problems, anxiety, depression, different types of neuropathy, and many other central nervous system symptoms. The symptoms can vary depending on where it’s hitting the nervous system.
Many patients in search of answers end up at a neurologist’s office. The neurologist can see something is neurologically wrong, but they can’t find any answers as to why.
An overwhelming number of Lyme patients I’ve worked with have been told by doctors that they “just have anxiety” when they’re experiencing a host of unusual and scary symptoms. They are offered anti-anxiety medications and sent on their way.
In other words, you get labeled with anxiety because they have no idea what’s wrong with you.
Are anxiety and other mental health problems common symptoms of Lyme disease and co-infections? Absolutely. When you feel like your health has left you, you can’t enjoy the small or big moments in life, and every moment of every day feels miserable, it only makes sense that you would feel anxious. However, these mental health problems are just symptoms of a much deeper problem.
Let me say that again: Mental health problems are a symptom of what’s happening beneath the surface.
Current Lyme testing must be updated
The current testing protocol leads to very few false positives, but it produces an overwhelmingly high number of false negatives. This leads to extremely sick people being left without answers or help.
Current Lyme testing must be updated.
- The ELISA screener test is extremely misleading. If the results are positive, fine, but if it's negative, that doesn't mean anything to me because it's such a poor screening test.
- More markers should be featured on the Western Blot.
- Multiple species of Lyme need to be tested every time Lyme is suspected.
Another immense problem I can’t emphasize enough is that doctors aren’t testing for co-infections—other tick-borne diseases besides Lyme.
In 93% of chronic Lyme cases, patients are also suffering from additional co-infections. These include infections like Bartonella, Babesia, Anaplasma, Rickettsia, Ehrlichia, Powassan virus, and others.
Just as with Borrelia, there are multiple species of each of these infections that should be checked as well.
As a doctor who has worked with thousands of Lyme disease and co-infection patients, I prefer extremely thorough testing that checks for multiple species of Borrelia and multiple species of all the co-infections. It’s the only way to truly know whether a patient is dealing with tick-borne diseases.
Several years ago, I ran the standard ELISA test on my wife. Because it came back as negative, we spent three years doing the wrong things. It was a huge waste of time, frustration, and pain that added years to her suffering. When we finally retested her with more accurate, thorough tests, we discovered she did have Lyme after all, along with several tick-borne co-infections, like Anaplasma and Bartonella.
The biggest waste of your time, money, happiness, and health is just barking up the wrong tree. This is why the standards need to be updated—like, yesterday. Today’s Lyme standards at your doctor’s office were set in 1994, but guess what; we’ve learned a lot in 30 years, and the testing and protocols should reflect the updated research.
How is RHS different when treating Lyme?
When you become a patient at Restorative Health Solutions, we are determined to accurately and thoroughly test you for tick-borne infections.
After running thorough tick-borne panels, we will run through your test results together and come up with a plan for you going forward. We have seen thousands of patients recover from chronic Lyme disease and co-infections like Bartonella, Babesia, Anaplasma, Rickettsia, and many other types of tick-borne illnesses.
Thorough, accurate testing helps you know what you’re fighting, and research-based protocols help you reach your health goals faster.
Ready to learn more and get tested?
Are you ready to learn more about Lyme disease and co-infections? Click here to view our Lyme resources page.
If you have questions about past test results or want to run up-to-date, thorough testing, just reach out to us at the clinic to set up your initial appointment with me, Dr. Warren. We’re here to help you recover from tick-borne diseases and restore your health.
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