Doctors are missing Lyme, even in Lyme-endemic states

By Dr. Kyle Warren
Edited by Meghan Feir Walker

When we stumbled upon this article published in January 2024 titled “Medical Gaslighting and Lyme Disease: The Patient Experience,” we were excited for various reasons. It’s highlighting the immensely important topic of medical gaslighting—a confusing, painful, frustrating experience the vast majority of Lyme patients have gone through when seeking help.  

Another point made in the study was that doctors are missing Lyme, even in Lyme-endemic states like Minnesota, Wisconsin, and the Northeast.  

Without further ado, let’s break down what this article means for you and others suffering from Lyme disease.

To watch the accompanying video, click here.

What is “medical gaslighting”?

If you’ve ever walked into a doctor’s office and explained your symptoms (and possibly even mentioned your symptoms align with Lyme) only to have said doctor tell you, “It’s only anxiety,” “It’s all in your head,” “Chronic Lyme disease isn’t real,” “I’m not going to test you for Lyme,” and/or other horrible comments and conclusions, you’ve experienced medical gaslighting. 

Psychology Today describes medical gaslighting like this: “‘Medical gaslighting’ describes the experience of having a medical concern dismissed or arbitrarily attributed to a psychological or neutral cause by a healthcare provider.”

When my wife and I were in the midst of seeking answers for her debilitating symptoms, one doctor actually took me aside to tell me my wife was “just trying to get attention.” 

I knew my wife well and had the common decency to not suppose she was just an attention seeker. She had real symptoms that were causing her to miss out on life’s everyday joys. She was unable to do what she’d once done happily, energetically, and without a second thought. My wife was not pretending to be sick, as the doctor had concluded. 

This was an infuriating, frustrating, demeaning experience for us both, and I know innumerable other Lyme patients have encountered the same, awful experiences with doctors across the nation. 

Before coming to Restorative Health Solutions for help, many of my patients had been laughed at, dismissed, ridiculed, and written off as hypochondriacs by doctors when they were trying to get to the root cause of their debilitating symptoms. 

This is unacceptable.

How is Lyme disease being missed?

If you’ve followed our other videos and articles, you already know the CDC has finally acknowledged that chronic Lyme, aka, post-treatment Lyme disease syndrome (PTLDS) is real. While there’s still a long way to go, this giant step of acknowledgment was decades in the making. This was a huge victory for all of us in the Lyme community. 

That being said, medical gaslighting of Lyme disease patients is still a perpetual problem. 

The study we’re going through addresses gaslighting techniques used on patients who have Lyme disease, either before or after they found they had Lyme. 

The researchers start their abstract by explaining the sheer magnitude of this issue that so often gets ignored and missed by medical professionals.

“Even though there are approximately half a million new cases of Lyme disease in the US annually, according to the CDC, it is often undiagnosed or misdiagnosed, which can result in a chronic, multisystemic condition.” 

Of those 500,000 new cases of Lyme disease a year, we know there is a 10-20% fail rate. This means 50-100,000 new cases each year aren’t getting help for their Lyme disease from the medical system and are ping-ponging from one uninformed specialist to the next. They aren’t getting solutions or accurate explanations for their symptoms. That’s a ridiculously high number of people left to fend for themselves, and it’s unacceptable. 

In Minnesota alone, around 10,000 new Lyme cases are falling through the cracks of the medical system every year. 

The researchers say that “Both acute and chronic Lyme disease (CLD) have been relegated to the category of ‘contested illnesses,’ which can lead to medical gaslighting.”

Because of doctors’ ignorance and, in many cases, unwillingness to explore Lyme disease as a plausible cause, patients are either left without any possible causes or they are misdiagnosed. 

If not Lyme, what?
To what conditions do doctors attribute Lyme symptoms?

The grand majority of the time, patients who visit doctors and specialists get told they are “merely” dealing with symptoms of anxiety, mental illness, stress, and/or aging. 

“By analyzing results from an online survey of respondents with Lyme disease, we elucidate the lived experiences of people who have been pushed to the margins of the medical system by having their symptoms attributed to mental illness, anxiety, stress, and aging.”

Far too often, when doctors aren’t willing to dig deeper, they tell their patients all their problems are due to one or more of these conditions. 

In other words, they have no idea what’s going on and they aren’t willing to explore all the possible options.

Patients’ symptoms (often various types of pain caused by Lyme) are also greatly downplayed by doctors.

Doctors are discounting Lyme disease even with a rash and a positive test

The article goes on to say that even respondents to the survey who displayed positive Lyme blood tests and erythema migrans (EM) rashes (the classic Lyme-indicative bullseye rash) were written off.

“Further, respondents have had their blood tests and erythema migrans (EM) rashes discounted and were told that CLD (chronic Lyme disease) simply does not exist. As a result, a series of fruitless consultations often result in the delay of a correct diagnosis, which has deleterious consequences.”

After analyzing the results of the study, the results revealed that “a patient’s positive blood test status did not influence how likely a doctor was to believe the patient had Lyme disease. Doctors were no more likely to believe a positive blood test patient had Lyme disease (79% unconvinced) than a patient who had not obtained a blood test (74% unconvinced).”

Even a positive test plus an EM rash still gets discounted by many doctors.

“According to our data, even the telltale bullseye rash left many doctors unconvinced of active Lyme disease infection.”

Lyme patients already face a mountain of hurdles when trying to get a proper diagnosis, let alone when doctors deny the obvious facts in front of their faces.

Here are just a handful of the problems Lyme patients are up against: 

  • Many doctors won’t order a basic Lyme test (and they definitely are not ordering the more up-to-date, thorough, accurate tests for patients).
  • Many doctors don’t believe it’s Lyme, even with the presence of an EM rash.
  • Many doctors don’t believe it’s Lyme, even with positive test results.
  • Many doctors will only administer 10 days to 2 weeks of doxycycline, yet 2-4 weeks of doxycycline only works when you get it right away (within 2 months of getting the tick bite).

Doctors are missing obvious Lyme cases

How then can more complicated cases get diagnosed and helped?

This study clearly shows that doctors are missing some of the obvious indicators of Lyme disease, such as arthritis, flu-like symptoms, an EM rash, positive Lyme tests, and more. 

This is an enormous problem.

If Western medicine is missing the patient with an EM rash and a positive Lyme test, the most clear, obvious signs of Lyme disease, how are they going to find a neuro-Lyme case that presents without the rash? How are more complicated Lyme cases going to get a correct diagnosis and the proper care? 

Doctors must start doing better. They must start being aware of epidemics like Lyme that are sweeping across our nation, greatly affecting the lives of individuals who just want to live a normal, healthy life. Not only are Lyme patients struggling to get through their day, but they’re also facing great financial strain as they spend thousands of dollars a year in search of help and answers. 

This disease is negatively (to put it very lightly) affecting their health, their abilities, their relationships, their livelihoods, their finances, their outcomes in life, and their hope that anything will ever change for the better, and they need help!

Lyme disease affects their lives on every level, and doctors must start being Lyme-aware and a part of the solution.

How many doctors do Lyme patients see before getting an accurate diagnosis?

As is unfortunately the case with most Lyme patients, this study found that the average Lyme patient has to go to a median of 10 doctors before getting a proper diagnosis of Lyme disease. This is mind-boggling, yet not surprising to anyone who has Lyme themself or is familiar with the condition’s continual frustrations. 

“We also contend that a median of 10 doctors seen before diagnosis is, in and of itself, highly suggestive that medical gaslighting occurred.”

This article also mentions previously researched polls on the average number of doctors seen before a proper diagnosis. They mention that Adrion and researchers indicated five physicians were seen by the average Lyme disease patient before receiving a proper diagnosis, and Johnson and researchers found that half of their 2,424 respondents saw at least seven physicians before their Lyme disease diagnosis.

Do you have a better chance of getting a proper diagnosis in Lyme-endemic states like Minnesota?

Lyme-endemic states versus non-Lyme-endemic states

You’d think that in states with a large number of people contracting regionally known infections like Lyme disease, such as Minnesota and Wisconsin, doctors would regularly be on the lookout for telltale signs of the disease. 

Unfortunately, this isn’t the case. 

Results indicated that residing in an LE state does seem to influence some experiences patients had while seeking testing and treatment (see table 2), but the numbers are still unimpressive.

In LE states, a little over half of doctors refused to administer a Lyme test upon a patient’s request, while around 65% of doctors refused to in non-LE states. 

Doctors are supposed to work for the patient, so why are they refusing to administer tests, especially when Lyme disease is commonly known in the area?

Doctors assumed you were a drug seeker

One area that’s especially concerning is the second line down on table 2: “Doctor assumed you were a drug seeker.” Almost 76% of doctors assumed their patients were making symptoms up to acquire medication in LE states, even more than doctors in non-LE states.

Is over-prescribing a problem? Yes, but insinuating your patient, who has very real symptoms, is lying is also a monumental problem. 

Misdiagnosed with an autoimmune disease

A few lines down, you’ll see “Misdiagnosed with an autoimmune disease.” This is a common problem I have seen with patients who walk through my doors. They’ve been misdiagnosed as having HLA-B27 rheumatoid arthritis, lupus, multiple sclerosis, psoriasis, and other autoimmune conditions when it was actually Lyme causing their symptoms all along. Oftentimes, even if tests are negative, doctors will diagnose patients as having a condition because they don’t know what else could be causing their symptoms. 

Lyme bacteria can cause a wide array of symptoms, from massive inflammation to serious neurological problems. Hence why it can resemble so many conditions. 

Note: While many patients get misdiagnosed with autoimmune conditions when it’s actually Lyme, many patients do have autoimmune conditions and Lyme disease. 

Doctors in LE states only slightly better than non-LE states

While geography definitely “influenced how doctors explained patients’ Lyme disease symptoms,” the results from Lyme-endemic (LE) states are still staggeringly unimpressive. The doctors in LE states only have a slightly better track record than doctors in non-LE states. 

“Doctors in LE states were more likely to grant the patient’s request for a Lyme disease test (49%) than doctors in non-LE states (35%). Doctors in LE states were also more likely to believe a positive test result (28%) than doctors in non-LE states (18%). These two findings were corroborated by LE state patients’ reports that they generally obtained a Lyme disease diagnosis in fewer years and after seeing fewer doctors than those living in non-LE states.”

Told not Lyme, no ticks in your area

Patients in non-LE states encountered more doctors who told them they could not possibly have Lyme disease because there were no ticks or Lyme disease in the area. However, patients in LE states ridden with deer ticks and known Lyme cases are still getting told misinformation by doctors. They’re still being told, “There’s no way you have Lyme disease.”

Let’s put it this way: If you live in an area with deer, mice, and other tick-carrying varments, you can have Lyme disease and Lyme co-infections in the area. While the prevalence of Lyme disease may be larger in certain regions, cases of Lyme have been found across the United States. Also, patients could encounter ticks during trips to certain Lyme-endemic areas.

In other words, no: It’s not impossible that Lyme disease could be the problem, even if you live in non-Lyme-endemic areas.

It’s all in your head

Often, after patients are told there’s “no way” they have Lyme or that “chronic Lyme isn’t real,” they’re foolishly written off by doctors and told their symptoms are all caused by mental illness. 

When patients have Lyme disease, for various reasons, they can easily become depressed and anxious, or preexisting mental illness symptoms become elevated. Some reasons for developing or exacerbating depression and anxiety include:

  • The immense inflammation Lyme bacteria can cause
  • The impact Lyme bacteria has on the nervous system
  • The stress and discomfort of living with symptoms caused by Lyme
  • The impact having Lyme has on daily life, relationships, work, sleep, etc.
  • The lack of answers, help, and effective and affordable treatment options
  • The many months or years of searching for answers and relief
  • The medical gaslighting
  • Many other factors

There is no doubt that Lyme disease often causes depression, anxiety, and other mental distress in patients. However, depression and anxiety aren’t the sole sources of their problems, and that’s what doctors are missing. They’re missing the root cause(s).

As my wife and I experienced, patients are even told by some doctors that their symptoms are entirely made up.

“Finally, there was a marginally significant result showing more non-LE state doctors than LE state doctors directly told patients their Lyme disease symptoms were just in their head (i.e., psychosomatic).”

We have a ways to go but don’t lose heart

First off, know this: Chronic Lyme is real. Your symptoms aren’t just “all in your head.” Symptoms point to a greater problem and shouldn’t be ignored.

After 30 years of misguiding the public and doctors alike, the CDC even admitted that chronic Lyme is real in 2022. And in 2023, the National Institute of Health (NIH) finally began funding research on Lyme disease for the first time.

In recent years, most Lyme research has been directed toward proving the reality of chronic Lyme disease, when it goes from acute to chronic, and that this is an epidemic of growing proportions. Those have all been necessary to prove to institutions the realities of chronic Lyme disease. However, fewer studies are being done on effective treatments for Lyme. 

Mainstream medicine is still a long way from coming to a solution for Lyme disease sufferers. They’re even further away from realizing the grave magnitude of co-infections such as Bartonella, Babesia, Anaplasma, Rickettsia, and many others. 

While we have a long way to go before patients, particularly Lyme patients, are treated as they should be, we are slowly getting to a better place.

We are so appreciative of and excited by the research continually done by institutions like Johns Hopkins, Tulane, Columbia, MIT, Rutgers, Cornell, and others. 

You can be healthy and live your life!

While it’s incredibly frustrating, life-altering, and angering that modern medicine hasn’t caught up to the suffering of Lyme patients yet, know that you can regain your health. There is abundant life to be lived after Lyme, and thousands of patients have recovered.

If you’re frustrated that no one can find the source of your symptoms, especially if you live in a Lyme-endemic area, Lyme and its co-infections should, without a doubt, be checked through thorough testing. (link to article about testing) 

If you know what is causing the problem, you can find a solution.  

I hope this article going over this study’s findings has been helpful. If it has, consider sharing it with friends and family. Remember to follow us on Facebook and Instagram for daily health tips and news on Lyme disease, Lyme co-infections, and other conditions. 

Watch the video and follow RHS

To view the accompanying video on this topic, click here. If this article was helpful for you, consider sharing it with friends and family. Follow us on Instagram and Facebook for more information on Lyme, tick-borne co-infections, and other health topics.

Summary

  • In this study from January 2024 called “Medical Gaslighting and Lyme Disease: The Patient Experience,” researchers addressed gaslighting techniques used on patients who have Lyme disease, either before or after they found they had Lyme.
     
  • If you’ve ever walked into a doctor’s office and explained your symptoms (and possibly even mentioned your symptoms align with Lyme) only to have said doctor tell you, “It’s only anxiety,” “It’s all in your head,” “Chronic Lyme disease isn’t real,” “I’m not going to test you for Lyme,” and/or other horrible comments and conclusions, you’ve experienced medical gaslighting.

Gaslighting is still a huge problem

  • Although the CDC finally acknowledged that chronic Lyme, aka, post-treatment Lyme disease syndrome (PTLDS) is real, medical gaslighting of Lyme disease patients is still a perpetual problem. “Even though there are approximately half a million new cases of Lyme disease in the US annually, according to the CDC, it is often undiagnosed or misdiagnosed, which can result in a chronic, multisystemic condition.”
  • The researchers say that “Both acute and chronic Lyme disease (CLD) have been relegated to the category of ‘contested illnesses,’ which can lead to medical gaslighting.”
  • Patients who visit doctors and specialists are usually told they are “merely” dealing with symptoms of anxiety, mental illness, stress, and/or aging.
  • “By analyzing results from an online survey of respondents with Lyme disease, we elucidate the lived experiences of people who have been pushed to the margins of the medical system by having their symptoms attributed to mental illness, anxiety, stress, and aging.”

Patients symptoms get downplayed

  • Patients’ symptoms are also greatly downplayed by doctors.
  • The results of the study revealed that “a patient’s positive blood test status did not influence how likely a doctor was to believe the patient had Lyme disease. Doctors were no more likely to believe a positive blood test patient had Lyme disease (79% unconvinced) than a patient who had not obtained a blood test (74% unconvinced).”
  • Even a positive test plus an EM rash still gets discounted by many doctors. “According to our data, even the telltale bullseye rash left many doctors unconvinced of active Lyme disease infection.”
  • This study shows that doctors are missing some of the obvious indicators of Lyme disease, such as arthritis, flu-like symptoms, an EM rash, positive Lyme tests, and more.
  • If Western medicine is missing the patient with an EM rash and a positive Lyme test, how are more complicated Lyme cases going to get a correct diagnosis and the proper care?

Lyme patients usually see at least 10 doctors before diagnosis

  • This study found that the average Lyme patient has to visit an average of 10 doctors before getting a proper diagnosis of Lyme disease.
  • Results indicated that residing in an LE state does seem to influence some experiences patients had while seeking testing and treatment, but the numbers are still unimpressive.
  • Almost 76% of doctors assumed their patients were making symptoms up to acquire medication in LE states, even more than doctors in non-LE states.
  • Many patients with Lyme are misdiagnosed with autoimmune conditions, including HLA-B27 rheumatoid arthritis, lupus, multiple sclerosis, psoriasis, and other autoimmune conditions.
  • Patients in non-LE states encountered more doctors who told them they could not possibly have Lyme disease because there were no ticks or Lyme disease in the area. However, patients in LE states ridden with deer ticks and known Lyme cases are still getting told misinformation by doctors.
  • If you live in an area with deer, mice, and other tick-carrying varments, you can have Lyme disease and Lyme co-infections in the area.
  • Patients are even told by some doctors that their symptoms are entirely made up (psychosomatic).
  • Chronic Lyme is real. Your symptoms aren’t just “all in your head.” Symptoms point to a greater problem and shouldn’t be ignored.
  • While modern medicine hasn’t caught up to the realities of Lyme patients yet, know that you can regain your health.
  • If you’re frustrated that no one can find the source of your symptoms, be checked through thorough testing.
  • If you know what is causing the problem, you can find a solution. 
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