Chronic Lyme disease patients dismissed by medical community
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.
Related Articles:
Involuntary body movements due to Lyme disease dismissed as psychosomatic
Near universal negative experiences with healthcare providers reported by Lyme disease patients
Chronic Lyme disease patients want to be treated, not managed
References:
- 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
Cherryn Douglas
01/03/2024 (12:59 am)
As the parent of a Lyme patient in Australia, the struggle is real and we were one of the lucky ones!! It only took 8 months and 2 doctors plus about $10,000 Au to get the blood work done and tested in the US before we got a diagnosis.
Lyme is not recognised here in Australia at all, and our government actively persecute doctors who attempt to get testing and provide treatment for Lyme patients. They will never admit they got it wrong and will most likely rename it to avoid the malpractice law suits.
It always intrigues me though that when we state my daughter has a diagnosis of Lyme disease and two co infections, their first reaction is to dismiss it without ever asking if we have travelled to a Lyme endemic area! It’s like overseas travel isn’t even a thing!! For the record hers is locally acquired, but you never get that far in the conversation before they dismiss it anyway. Our standard response now is “she has a diagnosis of Lyme Disease and 2 co infections, yes we know the government and medical fraternity here don’t like that, but that doesn’t make her positive blood test results any less positive!!
We managed her ourselves and went to ground to treat her, you learn very quickly how to work in the grey areas to get the help you need!
We were lucky a chance meeting with a German tourist who had Lyme at work one day and a mother with an internet connection and nothing to loose, managed to get my daughter the help she needed very quickly.
Dr. Daniel Cameron
01/05/2024 (3:57 pm)
I am glad you worked out a solution
Caroline Kleindienst
01/02/2024 (10:30 pm)
This happened to me as well. Including a 4 week hospital stay where doctors did not believe me that I had lyme disease ( even with positive test). I was given steroids, which finally put me into a wheelchair and bed bound for 9 months. I started treating myself with herbs, until I found a doctor who helped with further treatment that put me out of the wheelchair. I saw over 20 doctors in 3 different countries before I found one who believed it was Lyme. Medical gaslighting happened to any other Chronic Lyme patient I have talked to and it has to stop. Many of us are alone with this illness until we find support groups, etc. In worst case scenarios this leads to suicide. Thank you for this article and for bringing this issue to light!
Tình Nguyen
01/02/2024 (9:33 pm)
I have experienced chronic Lyme disease. My doctor and a ID doctor believe I suffer PTLDS but don’t understand the reason. They insist I was treated properly, first 10 days of doxycycline, which still showed positive Lyme blood test, then I was treated another 21 days (twice daily) of the same antibiotic 2 months later. Now after almost two years I still suffer fatigue/very low energy, itch abdomen, hard to sleep, and abdomen discomfort. I believe the Lyme bacteria is still in my body. Recently after treatment for 14 days with two antibiotics for my pylori infection, I felt really well for 30 days but then the fatigue came back. I believe if I was treated with the combo antibiotic longer, eg. 28 days, my problem would have gone away. I recently saw published results proving that the standard doxy treatment does not eradicate Lyme bacteria in mice but several combined two or three antibiotics do. I have asked my doctor for prolonged antibiotic treatments, but he does not want to do it because CDC has not approved any treatment. We urgently need clinical trial on human of the encouraging combo antibiotic treatment, or CDC needs to recommend a treatment for PTLDS asap. At the moment, my only hope is time will heal my late stage Lyme problem. Any suggestion to cure my Lyme-induced fatigue is greatly appreciated.
Pj
01/03/2024 (10:44 am)
Even if you been treated you do not know what co-infections you acquired. If (if) the lyme was treated successful, you still were not treated for many other possible illnesses. I had Babesia (similar to malaria) and Rocky mountain spotted fever.
Dr. Daniel Cameron
01/05/2024 (3:53 pm)
I have the same experience in some of my patients.
Jennifer Lara Fagen
01/02/2024 (7:18 pm)
Thank you for this wonderful post about our article, Dr. Cameron!
Jennifer Fagen
Monika
01/03/2024 (2:01 am)
Yes that’s been pretty much my experience.
I am polish, but living in UK. I got really unwell after COVID. Pregnancy and birth already reactivated my symptoms, but many people got their Lyme and co reactivated after the virus.
It took me 2 years to find out. Everything paid from my own pocket. The illness spreaded to every part of my body including the heart. I lost half of my teeth as this bacteria hides in gums.
My GP surgeries were total ignorants. And they still are.
Gladys
01/03/2024 (1:00 pm)
My dentist was shown enlarged photos of spirochetes halfway burrowing into a jaw bone.My dentist acknoledges Lyme. Two of my teeth became hollow inside from the pulp. It was rare, the dentist said especially since it was the same tooth on each side. No cause known as the root and enamel of the tooth was healthy. It was a big mystery but not to me. I’m a 25 yr victim of post-treatment Lyme and Bartonella. Many of my symptoms have been asymetrical. When I exercise (but not too much)and eat healthy my symptoms of nerve, brain fog, neck and joint pain, calloused skin, vertigo, gout feet can feel better. There is no doctor where I live who acknowledges Lyme with any of these. I’m on my own unless I want to fly to special doctors who will treat. Wishing you help from yourself and from within your own strength to exercise and eat only healthy food.
Dr. Daniel Cameron
01/05/2024 (3:53 pm)
There is very little research on dental issues.
Dr. Daniel Cameron
01/05/2024 (3:55 pm)
I hope your journey ends soon.
Sympathizer
05/14/2024 (3:24 pm)
Hi Monika,
I am so thankful for your post. I too have lost nearly all my upper teeth and a few on the bottom after getting a Lyme infection with 2 co-infections in 2020 and that was within about 18mos of testing positive for all 10 bands on the Igenex Immunoblot test.
Hoping you are doing better!
Jenna Luché-Thayer
01/02/2024 (6:26 pm)
Great summary of many key points from our article.
Thank you Dr. Cameron!
Jenna Luché-Thayer