By Dr. Kyle Warren
Edited by Meghan Feir Walker

You’re not alone if you’ve gone to doctors for answers but didn’t receive solutions to your concerns. Patients frequently get ignored, dismissed, or forgotten, causing them to slip through the cracks of the medical system, especially when it comes to chronic Lyme disease and other tick-borne illnesses.

In 2022, the Centers for Disease Control and Prevention (CDC) updated its guidelines for diagnosing and treating Lyme disease. However, what they recommend doctors do and what doctors actually do are completely different.

Today we’re highlighting disparities between what the CDC recommends as guidelines for Lyme disease diagnosis and treatment and how the medical system actually handles potential and existing Lyme patients, acute and chronic. We’ll also touch on certain areas that greatly need to be updated when working with patients and diagnosing Lyme disease and other tick-borne illnesses.

Are you getting the published standard of care?

As you scan the CDC’s Lyme webpage, it is encouraging that after 40 years of denial, they changed their stance on chronic Lyme in 2022, which they now acknowledge and call post-treatment Lyme disease syndrome (PTLDS). 

To be honest, I hate the new name. It causes more confusion. It leaves out a huge group of people who have had chronic symptoms for months, years, or decades but haven’t ever been treated with antibiotics. I don’t like any system that causes more people to slip through the cracks of the labeling system.

Much is left to be desired with the CDC guidelines. While significant progress has been made, there is still much the Lyme community doesn’t agree with. 

I don’t like everything the CDC suggests or states on their website. However, I want to highlight their published standard of care for those with Lyme or those who think they may have Lyme.

When we hear most patients’ stories, we learn they aren’t remotely getting this published standard of care. This is a huge problem everywhere, but it’s especially confounding that patients in Lyme-endemic states (Minnesota, Wisconsin, and the Northeast, in particular) are still facing these issues.

Typical symptoms of Lyme 

In the section titled “Signs and symptoms,” the CDC states that the typical symptoms include fever, headache, fatigue, and a characteristic rash called erythema migrans (EM).

Notice it does not say that the only symptom of Lyme disease is an EM rash. It includes fevers, headaches, fatigue, and so on. They go on to say that “Untreated Lyme disease can produce a wide range of symptoms, depending on the stage of infection.”

According to the CDC, untreated Lyme disease can lead to:
  • Severe headaches and neck stiffness
  • Additional EM rashes on other areas of the body
  • Facial palsy (loss of muscle tone or droop on one or both sides of the face)
  • Arthritis with severe joint pain and swelling, particularly the knees and other large joints.
  • Intermittent pain in tendons, muscles, joints, and bones
  • Heart palpitations or an irregular heartbeat (Lyme carditis)
  • Episodes of dizziness or shortness of breath
  • Inflammation of the brain and spinal cord
  • Nerve pain
  • Shooting pains, numbness, or tingling in the hands or feet

All of these symptoms, plus, many others, can all occur from Lyme disease and other tick-borne illnesses. This wide variety of symptoms can affect your nervous system, heart, joints, and other organs.

Yet when you go to the doctor, they’re looking for a bullseye rash to indicate a Lyme infection. If you don’t present the EM rash, most doctors won’t take you seriously. In some cases, even patients who have a rash get turned down for Lyme treatment, which is ridiculous.

At least 50% of Lyme patients don’t present a rash (the CDC overestimates the percentage of Lyme-infected patients who present the rash), and these patients usually get missed. 

If you walk into your doctor’s office with a rash, you have a better chance of getting diagnosed with Lyme. If you walk in with a myriad of other Lyme symptoms but don’t present the bullseye rash, you’ll probably get dismissed.

The current medical system does not think of Lyme disease when you come in with heart symptoms, joint symptoms, nervous system problems, etc. When you go to the doctor with these symptoms, you get referred to a cardiologist, a neurologist, or a rheumatologist who will check for certain things, but not Lyme. Patients are sent on wild goose chases and left with more questions than answers. 

This is a huge problem. It wastes the patient’s time and money, prevents them from finding answers, and they are left to suffer longer. 

Other parts of this website state that 13 to 17% of people who have Lyme get neurological symptoms, yet the only patients doctors usually catch are the 3% of people who get meningitis where it’s so bad that you end up in the hospital having to do a spinal tap. 

The rest of the 14% of people with neurological problems are missed. 

When you walk in with these kinds of symptoms, you get bounced through the medical system. Patients can go from one doctor to the next for months to years, yet no one figures out the cause of their symptoms. 

We must start diagnosing Lyme disease based on symptoms, more accurate lab tests, physical findings, and possible exposure to infected ticks. 

Testing is helpful, but…

The CDC says laboratory testing is helpful. Here’s what they aren’t saying: They aren’t telling doctors to “ignore exposure to ticks, ignore patients’ symptoms, and base everything on CDC-positive test results,” yet this is what happens in reality. The CDC is not recommending this kind of protocol anywhere.

Even when you have symptoms and exposure, most doctors won’t do anything unless you have tested CDC positive. If you’re negative, they might give you meds to cover up symptoms, but this is never an adequate solution and leads to further difficulties down the road. This is a huge obstacle we fight against. 

This isn’t the published, recommended standard of care anywhere. Testing is only supposed to be one portion of the picture, and there are much better, more accurate tests available to test for Lyme disease and other tick-borne infections. The CDC testing methods are stringent and outdated and should not be the standard for diagnosing Lyme disease accurately.

A positive CDC Lyme test is not the end-all-be-all. It’s one piece of information doctors are to use when diagnosing patients. If someone comes in with these kinds of symptoms, doctors need to be aware that a certain number of these patients have Lyme or co-infections. A certain number of people in the ER or who are referred to neurology, rheumatology, psychiatry, and/or cardiology, are actually suffering from Lyme disease and/or other tick-borne co-infections. We see this happening all the time, and patients are left without answers and solutions to their problems.

Lyme isn’t just Borrelia burgdorferi

On the top of the CDC’s Lyme page, they state, “Lyme disease is caused by Borrelia burgdorferi and rarely, Borrelia mayonii.” That is true, yet it’s false if you end it there. 

Lyme disease isn’t just caused by Borrelia burgdorferi, and it can be caused by the mayonii species more often than doctors are realizing. There are multiple species of the bacteria Borrelia, and they can also cause Lyme disease. Yes, “burgdorferi” was the first Lyme bacteria species discovered in 1982, but we have since discovered additional species. 

What’s especially silly is that even the Mayo Clinic, which discovered Borrelia mayonii (get it? Mayo-nii?) in 2013, doesn’t test for more than Borrelia burgdorferi, even though they themselves discovered an entirely different species of Lyme bacteria.

So far, there are eight species known to cause Lyme disease (Borreliosis). The top three are Borrelia burgdorferi, Borrelia afzelii, and Borrelia garinii.

Lyme isn’t the only tick infection you should test

The overwhelming majority of the time, people with chronic Lyme disease also have at least one or more of these other tick-borne co-infections, such as Bartonella, Babesia, Anaplasma, Rickettsia, Powassan Virus, Ehrlichia, Rocky Mountain Spotted Fever, etc. According to Dr. Daniel Cameron, the founder and a former president of ILADS, 93% of Lyme patients also suffer from at least one of these co-infections. You can also suffer from a co-infection without having chronic Lyme disease. 

As with Lyme, there are multiple species of each co-infection, and those must be tested too. 

For example, Bartonella henselae is the most common species of Bartonella. If your doctor actually has the insight to test you for Bartonella, they will only test one species. If that comes back negative, they rule out Bartonella, even though you could have a different type, like Bartonella quintana. This is why testing must be thorough and accurately done. 

Click here to read this article and watch this video to learn more about testing multiple species of Lyme and other tick-borne infections. 

What your doctor should know, but likely doesn’t

When you go to your doctor, they should know more about Lyme disease than the small section they read in medical school. It’s the most common vector-borne disease in the United States. They should know it’s caused by a bacteria called Borrelia, most commonly Borrelia burgdorferi, but that many other species of Borrelia exist and can infect humans. 

They should also know that ticks can carry several illnesses at one time that are often just as devastating as Lyme disease. These other tick-borne infections should be on their radar as well. 

If you rule out Lyme or a co-infection after testing just one species, this could lead to an even more frustrating journey for answers. 

They should also know that there are better tests available. 

When meeting with a potential Lyme patient, doctors should consider these questions and determine exposure probability.

They should ask the following questions: 

  • Do you live in Minnesota, Wisconsin, or other Lyme-endemic areas (while remembering that Lyme can be found anywhere now)?
  • Do you spend time outdoors?
  • Do you camp? 
  • Do you have known exposures? 
  • Do you have symptoms, such as joint pain, fatigue, headaches, neurologic problems, heart symptoms, etc. that are otherwise unexplained?

In other words, doctors should consider the reasonableness of exposure. It could be as simple as that you were out gardening, spending time at the lake, or perusing the lawn. Lyme exposure isn’t reserved for avid outdoorsmen, and while it’s most likely found in northern regions, Lyme can now be found almost anywhere. 

If you have unexplained symptoms, particularly if they’re acute onset (they come on relatively quickly or progressively) or they’ve been going on for a long, long time, Lyme should be seen as a possible explanation for the cause of your symptoms. 

What should happen vs. what actually happens

As has been the case with the vast majority of my patients and my own family’s experience with Lyme and co-infections, doctors often don’t take people seriously when they suspect they may have Lyme disease. Many don’t believe you can have chronic Lyme.

Lyme disease should be higher on doctors’ radars, the testing and methods should be updated, patients shouldn’t have to beg to get tested for Lyme and co-infections, and symptoms should be taken seriously. 

When you have thousands upon thousands of patients getting categorized as “medical mysteries” or whose symptoms are written off as psychosomatic (“It’s all in your head.”), you have to recognize the gaping hole in the medical system that thousands of patients are falling through. 

Most of the time, the patients who are left without answers stop seeking help from medical professionals because the ones they visited, were vulnerable in front of, and spent hard-earned money to see offered no help. They are left to struggle and suffer on their own. 

To make matters worse, these doctors often gaslight them, producing medical trauma instead of help, empathy, and solutions. 

This needs to stop. 

We’re still hopeful

This is unfortunately what’s still happening with the diagnosis process, but we are hopeful things will change as we advocate for Lyme awareness and better patient treatment. 

There must be a more comprehensive approach, including testing multiple Lyme species and considering a broader range of symptoms. Dr. Warren also discussed challenges in diagnosing Lyme disease, advocating for a holistic approach that considers a patient’s exposure history, symptoms, and physical findings, rather than relying solely on outdated laboratory tests.

I ran the standard testing on my wife and missed Lyme as the root of her illness for years! For years, we chased the wrong things and she wasn’t healing. Save yourself the time and effort.  Work with a doctor who thoroughly considers your risk factors and runs up-to-date, accurate testing for Lyme and co-infections.

Click below to watch the accompanying video!

Article summary

  • What is recommended for Lyme diagnosis and treatment by the CDC is not typically what happens in reality. 
  • Patient fall through the cracks of the medical system left to fend for themselves.
  • Doctors shouldn’t base everything on outdated, stringent CDC Lyme testing. 
  • Doctors should look at risk exposure and symptoms as well. 
  • You can have Lyme disease without the EM rash.
  • If you have nerve issues, pain, fatigue, headaches, and heart symptoms with no other known causes, Lyme should be considered. 
  • There is better Lyme and co-infection testing available. 
  • At least eight species of Borrelia can cause Lyme disease, not just Borrelia burgdorferi.
  • There are many tick-borne infections that should be tested accurately.
  • Those co-infections have multiple species that should be tested for as well.
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