A woman died of lupus at age 37 after going online to take a self-diagnosing Lyme disease test. The case of the woman is featured in a new manuscript accepted for publication in Joint Bone Spine and outlines the dangers of using self-diagnostic online tools while also ignoring the recommendations of physicians.
According to the article, the woman received a diagnosis of lupus at age 23 after having a stroke, swelling in the lining of the heart, and swelling in the lining of the lungs. Following her diagnosis, multiple practitioners prescribed the woman immunosuppressive drugs.
After doctors discharged the woman from the hospital, the woman took the drugs for a short period. However, she rejected the doctor’s diagnosis of lupus. Instead, she focused her energy on chronic Lyme disease. A history of her health issues paints a picture for why she refused treatment.
When the woman was just ten years old, a tick bit her. Doctors treated her for Lyme disease shortly after the bite. After successful treatment of Lyme disease, she developed joint pain. Doctors suspected the girl had juvenile rheumatoid arthritis.
By age 19, she received a full diagnosis of RA. At the same time, she requested doctors recheck her for Lyme. The lab work showed a positive serology for Lyme disease. Doctors treated her a second time with antibiotics.
After her second round of antibiotics, she achieved remission from her joint pain. Naturally, the woman attributed the remission of the RA to the antibiotics. As a result, she became fixated on the idea that she had chronic Lyme disease.
Then at age 23, the women had a life-threatening illness. She had a stroke, developed heart failure, and has swelling in the tissue of the heart and lungs. Labwork and testing completed during her hospitalization confirmed the diagnosis of lupus.
After her diagnosis, her doctors prescribed immunosuppressive medications. The medications prevent lupus from attacking her organs and tissue. Without proper treatment, individuals with lupus die from organ failure.
For a short period, the woman took the drugs but stopped the treatment within months. Instead of listening to doctors, she went online and took internet based Lyme disease tests. The questionnaire asks users to describe non-specific symptoms such as back pain, neck pain, headaches, and joint pain that are common in the population.
The websites promise cures from chronic Lyme disease through the use of antibiotics. Because the woman desperately wanted to stop her symptoms, she clung to these promises.
Evidence has shown that the online questionnaires are ineffective in properly diagnosing Lyme disease. Additionally, research shows that self-diagnosing tools increase anxiety in users and contribute to a sense of panic about having chronic Lyme disease.
For more than ten years, the woman went back and forth to doctors to take powerful antibiotics for her perceived Lyme disease. What the woman didn’t know is that the long term use of the medicines could create drug-induced lupus.
In drug-induced lupus, the body attacks the organs and tissue like lupus. However, the cause of the lupus is not autoimmune but rather as a result of drugs. For years, she took antibiotics that were so strong they attacked her organs and body and created a lupus-like disease. When she was 25 years old, she developed renal failure.
By the time she turned 37, she had decided she wanted to get pregnant. Unable to get pregnant on her own, she sought out help via fertility doctors.
Patients that have lupus and other autoimmune disorders are at risk of their disease flaring up from fertility treatments. The woman ended up in a severe flare from the medications needed to have a baby.
Unfortunately, the woman developed a severe illness after starting in-vitro treatments. While hospitalized with an acute flare of lupus, lab results during the illness confirmed she had lupus. Doctors recommended the immediate start of immunosuppressive drugs. Instead, she clung to the fact that she had chronic Lyme disease and refused the treatment.Doctors took enormous lengths to try to save her life, and they placed her on life support. However, she continued to refuse any treatment for lupus. After rejecting the life-saving medications, the woman died only months after she started IVF treatments. Her cause of death was multiple organ failure as a result of lupus.
The most concerning aspect to the authors of the article is the effect the longterm use of antibiotics has on the body. Because there is strong indication the drugs used for Lyme disease can cause drug-induced lupus, the authors believe the medicines contributed to her death.
What remains unknown is whether the antibiotics used to treat chronic Lyme Disease worsened her lupus. However, the long term use of antibiotics did not help treat her underlying autoimmune disorder.
For more than a decade, the woman sought help online instead of trusting doctors. She used websites that pushed and recommended the use of the antibiotics, and she followed that advice.
Even though she experienced many symptoms of lupus, she never accepted the diagnosis and continued with antibiotic treatment. As a result of her denial, she died from a disorder that can be treated. Had the woman followed the doctor’s advice and taken the immunosuppressive drugs, her lupus would have been easier to manage.
Online self-diagnosing tools are dangerous because they rely on using non-specific symptoms. Non-specific symptoms can be the result of dozens of disorders and illness. The American Academy of Pediatrics warns,
“Misinformation about chronic Lyme disease on the Internet and in popular media has led to publicity and anxiety about Lyme disease that is out of proportion to the actual morbidity that it causes.”
The woman refused this advice and sought out doctors that make a living treating chronic Lyme disease. Even though the CDC advises against using antibiotics for patients that fit this category, these practitioners continue to prescribe the medicines. The antibiotics destroy organs and attack the body.
This patient is a casualty to a belief in chronic Lyme disease, a condition not recognized by medical science.
Had the woman not been sold the fictitious dream of experiencing a full recovery from chronic Lyme disease, she might still be alive today.
*Katie Joy is a columnist and hosts Without A Crystal Ball on Patheos Non-Religious Channel. She writes articles on parenting, disability advocacy, debunking pseudoscience, atheism, and crimes against women and children.
She co-hosts the YouTube show, “The Smoking Nun,” with Kyle Curtis. The show airs weekly and tackles pseudoscience, current events, and crime stories.
Buy Katie Joy a cup of Coffee.
Individuals wishing to help Katie with her expenses can become patrons. Patrons gain exclusive access to stories, new projects, and future books.