u/chelsea_land_sky

Disclaimer: Lyme disease is REAL. Post-Lyme syndrome and associated auto-immune diseases are REAL. A chronic, active infection for years after is NOT REAL. CDC, IDSA, Stanford Medicine, etc.

TW: medical abuse

TL;DR - As a kid, I was brainwashed with chronic lyme pseudoscience and it almost killed me. AMA.

I grew up in the chronic Lyme pseudoscience "cult" from age 8 to 24. I was the poster child of "chronic lyme" and my story was shared around our state. My mom was friends with a bunch of the people at the Lyme pseudoscience think-tank ILADS and we helped create May as Lyme awareness month in our home state.

I had gastroparesis, which my parents thought to be chronic lyme. They doctor-shopped, as many doctors would not treat me for chronic lyme in my home state. I went to the infamous Charles Ray Jones in Connecticut. He, with the help of a few "Lyme literate Medical Doctors (LLMDs)" aka snake oil salesmen, prescribed me IV antibiotics for YEARS. On top of that, years of 160 hyperbaric oxygen therapy treatments (HBOT, 1-1.5 hour at 2.4 ATP). I had MANY PICC and central line infections, 2 of which made me go septic. Child protective services was called by local doctors on my parents. My brother (also treated with IV antibiotics) and I were given to our grandparents, who immediately gave us back to our parents. We fled to CT while my parents got legal help and the "treatments" continued.

I kept getting super sick ("Jarisch-Herxheimer reaction"), but they would say this meant I was healing, as the bacteria was "fighting back". Sometimes I would pretend to be better to get it to stop, but then I would always have my real illness (gastroparesis) flare up and then I'd be back at the LLMDs. This went on until I was 23. I had another bad flare up, more antibiotics, and sepsis. After moving away and A LOT of therapy, I realized almost all of my childhood was a lie. If you're asking why doctors would do this - we lost our house, and through my Mom's church we probably gave upwards of $100k or more to these quacks for non-covered treatments.

I got actual help for my gastroparesis, moved away, and have healed almost completely. My doctors today say my gastroparesis is not even related to Lyme... Due to years of IV antibiotics, too much HBOT (can cause fractures in your teeth), and subsequent issues caused me to lose all my teeth last year at 32. I have implant dentures now and I at least look way better. I am healing, one day at a time. AMA.

Update - Wow, thank you all for your great questions and support. I am hoping my story can at least save one person from having a similar experience. Keep the questions coming, I'm an open book.

*** If you suspect medical abuse of an adult, consider reporting the physician to your local medical board. If you suspect it in a child, PLEASE contact your local CPS or national hotline 1-800-4-A-CHILD (1-800-422-4453) ASAP. You could save a life! ***

If you caught up in the chronic lyme would, I suggest checking out https://lymescience.org/. It is easy to get duped, but real help exists after moving past the chronic lyme diagnosis. I am also happy to help <3