Chronic Lyme disease patients dismissed by medical community

chronic-lyme-disease

All too frequently, individuals with Lyme disease are dismissed by the medical community with their symptoms attributed to another medical condition or unrecognized entirely. Lyme disease, acute and chronic, has been labeled a “contested illness,” according to the authors of a new study. This labeling can lead to medical gaslighting.

In their article, “Medical Gaslighting and Lyme Disease: The Patient Experience,” Fagen and colleagues examine the extensive range of gaslighting techniques experienced by chronic Lyme disease patients.¹ And, explore the demographic variables (i.e., geographic location) that may be associated with higher rates of medical gaslighting.

What is medical gaslighting? Gaslighting refers to a type of manipulation which results in a person questioning their own reality or experiences. Medical gaslighting occurs when a medical professional dismisses or downplays a patient’s symptoms.

ONLINE SURVEY: Chronic Lyme disease patients

The authors conducted an online survey involving nearly 1,000 individuals who had Lyme disease or had a child with Lyme disease. The majority resided in the United States (48%), Australia (15%), Canada (15%), Ireland (9%), and the UK (8%).

“The number of Lyme disease patients with lingering symptoms in the US was projected to be as high as 1,944,189 in 2020.”

Respondents answered questions about their experiences with the medical community while they were in the process of being diagnosed and treated for Lyme disease. The majority (71%) had received a diagnosis based on a positive blood test ordered by a physician, while 13% were diagnosed based on a physician’s symptom-driven clinical diagnosis.

STUDY RESULTS:

  • The authors found that patients were “much more likely to be told by practitioners that they were just overreacting to their symptoms, there was no such thing as [chronic Lyme disease], or that their symptoms were caused by normal aging, mental illness or stress.”
  • “Many patients also felt that medical professionals frequently implied the patient’s symptoms were merely psychosomatic.”
  • “… a patient’s positive blood test status did not influence how likely a doctor was to believe the patient had Lyme disease.”
  • “physicians in Lyme endemic regions were more likely to grant a patient’s request for a Lyme disease test than those in non-endemic regions.”

Doctors frequently did not believe a patient had Lyme disease, even though they had a positive blood test.

Additionally, patients in non-Lyme endemic states were frequently told:

  • they could not have Lyme disease because there were no ticks or Lyme disease in their area;
  • they did not have Lyme disease despite having a “bulls-eye” rash;
  • their Lyme disease symptoms were just in their head.

According to the study, “a striking majority of respondents felt that they were treated as a marginalized patient group.” They were also told by medical professionals that they were overreacting and that [chronic Lyme disease] does not exist.

“We also contend that a median of 10 doctors seen before diagnosis is, in and of itself, highly suggestive that medical gaslighting occurred,” the authors state. And, of particular concern – physicians dismissed a Lyme disease diagnosis despite having a positive blood test.

The authors point out, “attributing symptoms solely to the aging process, dismissing patients’ bloodwork results, and outward manifestations of a medical condition (e.g., the EM rash) are indicative of medical gaslighting.”

CONTESTED ILLNESSES

The authors point out, “Many diseases were previously thought to be contested illnesses because their biological basis was not understood.” These include inflammatory bowel disease, endometriosis, peptic ulcers, and, more recently, Long COVID.

“The contestation of [chronic Lyme disease] has created a climate in which doctors may be less inclined to believe that Lyme disease patients’ persistent symptoms are attributable to an ongoing infection. Thus, such patients may not receive treatments for their underlying infection,” the authors state.

References:
  1. Fagen, J.L.; Shelton, J.A.; Luché-Thayer, J. Medical Gaslighting and Lyme Disease: The Patient Experience. Healthcare 2024, 12, 78. https://doi.org/10.3390/healthcare12010078

24 Replies to "Chronic Lyme disease patients dismissed by medical community"

  • T Allen
    01/02/2024 (4:43 pm)
    Reply

    Not believing a patient has Lyme after a positive test? That is truly appalling! It’s bad enough to have all the symptoms and not have a positive test, because your body doesn’t produce antibodies anymore. My guess is the only way this will be resolved, in the patients favor, is when DRs start getting sued for malpractice. Then word starts spreading because insurance companies get involved. Ticks are getting worse with global warming. We need a huge education campaign for both Drs and people worldwide!

  • Alta J Messbarger
    01/02/2024 (10:00 am)
    Reply

    My husband still has Lyme disease symptoms 12 years after the initial tick bite that almost killed him because the Doctor wouldn’t believe it was Lyme.I pounded my fist on his desk and screamed doxycycline to him until he finally gave us the prescription.
    After 45 days on the doxycycline and 3 blood test to prove it wasn’t something else the symptoms finally ceased and the doctor did admit that it was probably Lyme.
    He still has flare-ups from Lyme when he gets over stressed, over worked and exhausted. Lucklily we found a doctor at our urgent care facility that gladly gives us the doxycycline when he needs it.
    I believe that overall our medical community has abandoned us and the only solution is to try to stay healthy and pray a lot.

  • Allison Russell
    01/02/2024 (7:42 am)
    Reply

    This happened to me. I came in with positive tests, got tested again with one of the worst labs through LabCorp that doesn’t test for two very important genetic markers for Lyme. The Nurse Practitioner ordered a test for the wrong species of Babesia as well then proceeded to tell me to go home and do yoga and prescribed me a muscle relaxer. She said it might be fibro myalgia. I went to another doctor after I realized I was never going to be heard, and tested again with positive results for Borrelia burgdorferi, Borrelia afzelii, Borrelia maritima, and Bartonella vinsonii. I had self-treated the Babesia infection with herbs by that time. This was after 6 years of doctors trying to figure out what might be wrong, and me spending a whole year not being able to get out of bed. I think it’s criminal what’s happening.

  • Janice Anthony
    01/02/2024 (7:38 am)
    Reply

    Who does the IGenx test in PA?

    • Sue Savod
      01/02/2024 (1:26 pm)
      Reply

      Call them in California and see how to get a test done. There is another lab back east that is as efficient. Columbia University perhaps.
      IGeneX 650-424-1191
      Palo Alto, Ca.

      • Marcia Datson
        01/02/2024 (5:59 pm)
        Reply

        Sue, IGenex Lab moved from Palo Alto, Ca approx 4-5 years ago. Their current address/phone is:
        556 Gibralter Drive
        Milpitas, CA 95035
        800/832-3200

    • Jim
      01/15/2024 (11:15 am)
      Reply

      If your in the western part of PA Dr.Joesph if your in the eastern part Reta Rohdes Martinez NP ..Also go to ilads.org they have a list llmd’s

  • Annalisa Walker
    01/02/2024 (6:15 am)
    Reply

    This happened to me. I was so sick I thought I was going to die. I was in the hospital and every person that saw me had something to say. A nurse in the ER asked if I was crying out for attention, another nurse once I was admitted said “women your age often need counseling (I was 43), another one asked if I was being abused, and a neurologist said “you’re a zebra amongst horses and we don’t treat zebras”. All the while I couldn’t walk without help, was forgetting my own kids’ names and common words, had a heart rate of 170, and every other Lyme symptom there was! It was true hell on earth for four months as I was in and out of the hospital. Finally I was sent to San Francisco and had my blood work done through igemex labs. I finally got a Lyme and co-infection diagnosis after getting those results back and seeing an LLMD.

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