Woman’s Death Connected to Internet Self-Diagnosis

Woman’s Death Connected to Internet Self-Diagnosis January 22, 2019
photo credit shutter stock

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.

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What Are Your Thoughts?leave a comment
  • Graham Heron

    Looking forward to seeing an indepth analysis and discussion on this via Science Based Medicine.

    Proactive denial is difficult to deal with.

  • Tawreos

    I am the exact opposite. I use WebMD’s self diagnosis thing and usually the possible diagnosis scare me right into the doctor’s office. My doctor at one time learned to recognize what was happening when I would say “Oh” after he told me what it was. I think he got a laugh out of me being scared about truly horrible diseases. Now, when something gets bad enough to go to the doctor I just go and let the professional tell me what it is instead of scaring the crap out of myself. =)

  • Jim Jones

    There isn’t enough face-palming WTF powder in the world to deal with this.

  • YouthInAsia

    Either that or the Lyme disease condition was undertreated and so became disseminated, and taking the immunosuppressive drugs while having a dangerous infection made it much, much worse, and led to Lyme carditis and other problems and she died as a result. Wanting to avoid a possible lawsuit for prescribing immunosuppressive drugs to a patient with long term borreliosis, the doctors came up with an alternate theory. Both Lupus and Lyme are hard to diagnose and treat so Lupus was a good alternative. Btw, it’s never Lupus.

    https://www.youtube.com/watch?v=vpkzhvZ_CFM

  • I can only upvote this once.

  • Costa

    It’s shocking this doesn’t happen more often. The “chronic Lyme” cult is dangerous and well-funded.

  • Costa

    Lyme is not difficult to diagnose and is easy to treat. You are part of the problem.

  • Nope, she was diagnosed with Lupus. Sit down.

  • Valerie Hawkins

    Not really. Lyme can be very difficult to diagnose. Western blot is only used after a positive ELISA test; the ELISA won’t come up positive if you are in the early stages of Lyme, if you don’t have very specific antibodies, if you’ve been infected for a very long time, if you’ve just finished a course of antibiotics unrelated to the Lyme. The gold standard of Lyme testing is about $500 and most insurance won’t cover it (IGENEX). Only 70% of those infected with Lyme develop the telling bulls-eye rash.

  • Chronic lyme does not exist.

  • Valerie Hawkins

    I am sorry that you are misinformed then. I sincerely hope you or anyone you know never has to go through the pain and trails of recurring Lyme.

  • it doesn’t recur. you need to get your facts straight. I feel bad for people that belong to the chronic lyme cult

  • Valerie Hawkins

    I do have my facts straight. I have Lyme. Do you?

  • you have chronic Lyme?

  • Valerie Hawkins

    You didn’t answer my question so I’m going to interpret that as you do not have Lyme and therefore do not understand.

  • Banrion

    There are good reasons for the two step test and the western blot only shows if you have EVER been exposed to Lyme. It cannot differentiate between past infection and current infection.

    https://sciencebasedmedicine.org/lyme-testing/

  • Banrion

    The reason you have ongoing untreated disease is because you think you have Lyme and are therefore not finding the actual source of your troubles. I am sorry you are suffering, but believing in a garbage diagnosis will not make you better.

  • Valerie Hawkins

    I didn’t realize you had a medical degree and were my doctor! Please, tell me more!

  • chronic lyme is not a recognized disease by the CDC or any medical journal

  • I do understand – and you do not have Lyme.

  • Valerie Hawkins

    You trust the CDC? oh you sweet summer child. Now I get it.

  • Valerie Hawkins

    You know that “article” is more than 2 years old, right? Too bad there isn’t a peer-reviewed journal somewhere out there covering the issues of lyme and it’s continuing medical complications.

    That’s why you take the IGENEX test. It tells you if it’s current or not.

  • Valerie Hawkins

    Again, glad to know that you are now my personal doctor! And you have access to my medical records!
    You obviously have no idea what you are talking about. Please, educate yourself about Lyme and stop believing everything you read on the internet. Talk to people who actually have Lyme Disease. Understand their struggles and medical history. I would have been a font of information for you, with the tests and results to back it up.

  • and you trust Quacks selling you on the dangers of a fake disease.

  • I work with medical doctors and scientists educated in this field. Chronic Lyme is not a recognized disease nor does long term antibiotic treatment work. I hope if you don’t trust the CDC – you never use a hospital in case of an emergency.

  • Valerie Hawkins

    Ah, so you are a Doctor? and you treat Lyme disease on the regular? Where are you located so I can make an appointment? I’ll let my current Doc know that she’s off the hook since I’ve found THE EXPERT in the field.

    Please, tell me more about my fake illness? I didn’t get the bulls-eye rash, so I must be making this up. My test results from the past 5 years are all wrong too. I’m sure you are 100% random internet warrior who has obviously never dealt with Lyme.

  • Valerie Hawkins

    Nah, don’t reply. I’m done. You obviously know more than I do about this disease that i don’t have. That’s cool. Wish some day I can be as knowledgeable as you about this fake disease.
    I’m off to cleanse my crystals and apply some essential oils that will heal everything! TOODLES!

  • Costa

    Val, you are so wildly misinformed (brainwashed?) you might as well have less than zero knowledge about Lyme disease. Your ignorance is blatantly obvious to anyone who knows anything about Lyme disease. Not trying to bash you, because you are a victim whether you realize it or refuse to.

  • Costa

    Igenex was recently caught handing out false positives to 57.5% of healthy patients over a period of 5 years, and their defense was laughable. Nobody who suggests igenex testing is remotely credible about Lyme disease. The CEO of Igenex was a founder of ILADS, (which should raise huge red conflict of interest flags), who left to get rich selling fake tests for a fake disease and refer suffering people right back to ILADS’ self-anointed “Lyme-literate” physicians, who don’t even have to have any training in infectious disease. You aren’t doing your argument any favors by failing to provide any evidence (sorry it doesn’t exist) to back up your claims.

  • YouthInAsia

    It’s shocking this doesn’t happen more often.

    Whenever I find something shocking or highly unexpected, I reexamine my assumptions, not double down on them.
    I don’t quite understand how a “cult” of sick, poor and marginalized patients can somehow be dangerous and well-funded though. Doesn’t really add up does it? I’d guess more assumptions are involved. By dangerous I assume you meant by running over people’s toes with their wheelchairs.

  • YouthInAsia

    I”m comfortably seated thank-you. I read the article so I know what she was “diagnosed” with. A disease that is very difficult to diagnose and prone to misdiagnosis. Oddly the article is quite vague regarding what testing was done so we’re left to guess. Very specific about what she didn’t have though, even though her Lyme tests came back positive repeatedly. She was bitten at age 10, was seropositive, and was still seropositive at 19, perhaps reinfected, or undertreated or both.

    How is SLE diagnosed?
    SLE is diagnosed by a health care provider using symptom assessments, physical examination, X-rays, and lab tests. SLE may be difficult to diagnose because its early signs and symptoms are not specific and can look like signs and symptoms of other diseases. SLE may also be misdiagnosed if only a blood test is used for diagnosis. Because diagnosis can be challenging, it is important to see a doctor specializing in rheumatology for a final diagnosis. Rheumatologists sometimes use specific criteria to classify SLE for research purposes.

  • KG

    Ms. Hawkins, there are cases of chronic post-Lyme complications, but the pathogen itself is no longer present and antibiotics cannot help. I hope a real cure is found soon.

  • Banrion

    IGENEX is a test done by a single lab. It can’t be confirmed by another lab. It has not been reviewed by the FDA. It means nothing.

  • Valerie Hawkins

    IN THE US – all other countries in the world acknowledge that chonic lyme does exist except for the US and I hardly think we can consider ourselves the leaders in health care anymore.

  • Valerie Hawkins

    Not even remotely true. For most people, one round of antibiotics helps but doesn’t wipe the infection. It’s like getting a script from your doc and stopping it as soon as you start to feel better instead of finishing your dose.

  • Valerie Hawkins

    Neither are you.- where is your source for the above mentioned false positives?
    Once again, you are proving that just because you think something doesn’t exist, you must be right, and are veering dangerously into ablest territory. Check yourself. Just because you don’t understand my narrative doesn’t mean my story isn’t true.
    This is just like saying that because you’ve never personally had cancer or come out of remission of cancer, no one could possibly have that disease. Sad really. There is SO MUCH accurate knowledge out there concerning Lyme and it’s co-infections, but for some reason you are choosing not to seek that knowledge. You keep denying, that’s fine. I hope, for my sake so I never have to deal with you again, that you or anyone you love, never get Lyme. It’s a terrible burden, made worse by uneducated people like you.

  • Valerie Hawkins

    Because she/he obviously believes that one dose of antibiotics is a cure all and no one anywhere ever has anything like a recurring infection. I guess those with chronic lyme are actually just getting re-infected over and over and over again.

  • Valerie Hawkins

    Please, don’t address me like we are friends. You are cruel to a group of marginalized people who are doing their best to find answers and help for something that is awful at best and life-threatening at worst. It in no way, shape, or form, hurts you for someone to seek treatment for chronic lyme. No one is withholding treatment from you because someone else is taking a round of antibiotics, having blood work done, or seeing a doctor. Go fight for a real cause like vaccinations for children.

  • Banrion

    False, the NHS in the UK mentions nothing of chronic lyme. They simply say that if you still have symptoms see your physician for further testing.

  • Valerie Hawkins

    Y’all win. Lyme doesn’t exist, there is no treatment and people who are suffering are just making up symptoms.

  • you are on the wrong page.

  • swbarnes2

    Sigh. Lyme disease exists. Chronic Lyme disease does not. These people putting people on antibiotics for months are charlatans.

  • YouthInAsia

    Lyme is not difficult to diagnose

    Indeed. Please tell the idiot at the CDC to change their graphic. They even used a bold font! Dummies.

  • YouthInAsia

    Lyme is not difficult to diagnose

    Indeed. Please tell the idiot at the CDC to change their graphic. They even used a bold font! Dummies.
    https://www.cdc.gov/otherspottedfever/images/tickborne-for-spotted-fevers-button.jpg

  • YouthInAsia

    Lyme is not difficult to diagnose

    Indeed. Please tell the idiot at the CDC to change their graphic. They even used a bold font! Dummies.
    https://www.cdc.gov/otherspottedfever/images/tickborne-for-spotted-fevers-button.jpg

  • YouthInAsia

    Lyme is not difficult to diagnose

    Indeed. Please tell the idiot at the CDC to change their graphic. They even used a bold font! Dummies.
    https://www.cdc.gov/otherspottedfever/images/tickborne-for-spotted-fevers-button.jpg

  • Erin Costello

    Back in 2004 I was convinced my husband was cheating on me. I would’ve bet money on it, hell but Ben my life! Then in June he told me he had to work the door at a party, something he did often so that wasn’t unusual, but what was unusual was that this party was for a frat party. It was June, college let in almost a month prior. So I thought this was my chance to catch him. I went to Radio Shack and bought recording equipment to hook up to our land line. Days later I played the tape. Nothing. In fact, he really did have to work the door at a frat party. I kept it hooked up to the phone for a couple weeks and there was nothing unusual. My gut, my instincts, my own reasoning had convinced me he was cheating but he really wasn’t.

    Sometimes, we are just wrong. It’s sad this person had to lose their life to learn this though.

  • YouthInAsia

    There is no test for proof of cure, so you clearly have no idea what you are talking about.

  • Sophotroph

    You’re an idiot layman who wants to believe she’s figured out her medical problems when real doctors couldn’t.

    That’s understandable, but it doesn’t make you knowledgeable.

    If you don’t think the CDC knows its stuff, demonstrate that you know better.

    Announcing that your untrained, ignorant arse is more qualified to make decisions than the world’s foremost authority on medical issues marks you out for a conspiracy theorist and a cognitive-ease-seeking ignoramus.

    You have no medical knowledge. Leave the question of whether a disease is real or not to those who do.

  • pedro cardenas

    Interesting. No names, dates or firsthand testimony from the actual patient or they’re family. Just a reference to a brief, very vague article from doctors (Oh wait, they don’t seem to be doctors either) in the Czech Republic. Couldn’t have gotten this from U.S.A. sources? Seems that no one wants to be tied directly to these fluff pieces as much as they used to. These articles are in fewer & fewer & lesser & lesser reputable publications as time goes on. Also interesting. Never Heard of Patheos before. This has less to do with Lyme itself and is just more evidence of how completely off the rails and dangerous the medical industry has become. Big Pharma has brain washed an entire generation of medical professionals to ignore & abuse patients so they can diagnose & prescribe ailments & medications that benefit the industry. Antibiotics are huge money losers for them and perpetual immunosuppressants are a cash cow that we as consumers could never imagine. The amount of lawsuits for kick backs and even denying lyme disease to save money for the insurance companies are to numerous to catalog. But keep on believing the industries have the public’s best interest in mind. It’s a lot more comforting that way. Just like the opioid epidemic.

  • YouthInAsia

    Also not true. IgM antibodies are measured for recent infections, IgG for past infections. In the case of Borrelia burgdorferi, IgM antibodies are continually produced as the germ exhibits antigenic variation so the CDC had to tell doctors to ignore this unexplained “anomaly” that doesn’t occur with any other infection, just this one…lol. What a sad joke medicine has become. It’s like a parody of itself these days.

  • sapphiremind

    The symptoms are real to the sufferers, but the source of the symptoms are not what they think they are.