I may be a cynical bitch, but I still love to consume the occasional nugget of wholesomeness that the internet has to offer: cute animals doing cute things, feel-good stories, and hell, even the occasional cute baby. I recently saw a Twitter post that got a lot of attention for its wholesomeness and was so happy: it was Lil Naz X, already a wholesome person, telling someone that he would pay off a $20,000 medical debt. All of the comments on the post were celebrating his charity.
Then I looked to see who he was giving the money to and what the debt was for: a boy named David who needed help conquering Lyme Disease. That seemed odd — America is one of the worst industrialized nations in the world when it comes to affordable healthcare but spending more than $20k for Lyme Disease is insane — generally, you find a tick or a bullseye rash left by the tick, you see a doctor, they may do a simple test for antibodies to confirm, and then you take antibiotics for two to three weeks. 200 mg of doxycycline per day for 3 weeks would be 42 pills, which would cost less than $50. Even if you go to the ER to see the doctor with no insurance, it’s going to cost less than $500. So how did this family rack up more than $20k in medical debt?
It’s because David doesn’t have Lyme Disease. His family claims he has “chronic neurological Lyme disease,” which, I am happy to inform you, does not exist. Congratulations, David, you’re cured!
Okay, I’m not actually happy to report that. It’s pretty terrible. Chronic Lyme is a made-up disorder. Real Lyme disease sometimes leaves people experiencing lingering pain after treatment and they either need a second course of antibiotics or just have to live with the occasional inflammations, but those inflammations are not caused by an active infection. It’s called Post-Treatment Lyme Disease Syndrome and it may be caused by an auto-immune reaction, which occasionally happens after many diseases or injuries are successfully treated.
With chronic Lyme, people claim they are plagued by an active infection. It was most likely originally invented by frustrated people who had a collection of vague symptoms like fatigue, muscle aches, and headaches, to explain why they didn’t feel good. There was no evidence of any disease so they added that into the diagnosis. Then predators capitalized on that, selling “treatment” for something that doesn’t actually exist.
Every major medical association in the world agrees that chronic Lyme is not real, and that “patients” are either sick with some undiagnosed disease or are simply collecting the symptoms of modern life together — the problems that come from getting older, or having a poor diet, or not getting enough sleep.
Thanks to the internet, people who think they have chronic Lyme can find one another and then find “Lyme-literate” doctors, who are medical professionals who either dismiss all scientific findings that say the disease isn’t real or who know it isn’t real but charge people through the nose to treat it anyway. David’s family says that their Lyme-literate doctor is charging them $1,200 a month for “co-pays, doctor visits, blood tests, and multiple medications.”
David’s family says he developed chronic Lyme after he had pneumonia, not after a tick bite, and they say he’s been fatigued ever since. His doctor had him tested for chronic Lyme (whatever that means) and “The tests were positive according to (the International Lyme and Associated Diseases Association) standards. The International Lyme and Associated Diseases Association (terrible name, by the way) was set up by people who think they have chronic Lyme as a way to legitimize chronic Lyme.
The family says he now suffers from:
– moderate headaches (much less severe since starting treatment)
– weakness and numbness in his legs
– tremors and muscle spasms in his hands and feet
– noise sensitivity and constant ringing in his ears
– vertigo and poor balance
– intermittent facial paralysis (Bell’s Palsy)
– tachycardia (rapid pulse)
– extreme fatigue
They say they are treating him for “the main Lyme bacteria (Borellia), as well as co-infections with Babesia, Bartonella, and a yet-to-be-determined fungal co-infection.” In addition to scientists being unable to find any evidence that chronic Lyme exists, they’ve also found that antibiotics simply do not fix the symptoms the patients complain about.
Not only does the disease not exist and the treatment not work, but by convincing people like David that they have chronic Lyme, a real disease may be going untreated. This past January, researchers published a case study on a woman who went on the Internet and diagnosed herself with chronic Lyme. She had actually had real Lyme from a tick bite when she was ten, but she decided it was chronic and started taking regular antibiotics at the age of 19. By the time she was 23, the antibiotics had given her drug-induced lupus which resulted in a stroke, heart failure, and swelling in her heart and lungs. She took her lupus drugs for a few months but eventually decided the doctors were wrong about the lupus and she went back to taking antibiotics for chronic lyme.
She got renal failure when she was 25. By 37, she was dead of multiple organ failure. Why? Because the internet convinced her she had a disease that doesn’t exist.
I hope the same doesn’t happen to David. And I hope that Lil Nas X, who is, in my mind, a god damn saint who is amazing, throws his vast amounts of wealth at better causes in the future. I know, it’s hard enough to suddenly have millions of dollars and not know what to do with it — I’m glad he didn’t spend it on something more destructive to himself, like a lot of new millionaires do. But I hope he learns not to spend it on things that are secretly destructive to society.