How Lyme Disease Changed One Girl's Life in an Instant



Tovah Quan Berlin all men Rex far enough damp and should know them like the back of my hand for the bruise easy family in Brooklyn it's become a weekly ritual an assembly line on the kitchen table dividing a pills and supplements for fourteen-year-old Julia it's necessary her doctor says because Lyme disease and infections caused by it are ravaging her body so bad she's unable to walk Lyme is known as the great imitator it can look like lupus they look like rheumatoid arthritis it could look like multiple sclerosis it can cause psychiatric symptoms it's a view that made dr. Richard Horowitz a hero to thousands of patients and a renegade in the medical world the Hudson Valley intern is is a renowned proponent of what's commonly called chronic Lyme that bacteria from infected tick bites can hide inside the body even go dormant and wreak havoc months or years later people call this crazy Julia's nightmare began two years ago seemingly out of nowhere though as a dancer you know sports player I was active and then you know suddenly like a second my life just changed in class one day her legs went numb followed by fevers joint pain exhaustion and hair loss I must approach Julia to at least 60 70 different specialists and doctors from the looks of her she was losing her life Lyme disease was suspected since Julia once had a bull's-eye rash off on a red flag but doctors had dismissed it then and now blood tests were negative there was no explanation for her condition these doctors were calling it psychological they were saying she was faking it they tried to convince me that I was making it up I realized that the only shot that Julia had was me convinced that Julia had chronic Lyme her father decided to fight back only to find himself right in the middle of a mind-boggling medical war on one side doctors like Horowitz who believed in chronic Lyme and say can be hard to diagnose and to treat and on the other side the Centers for Disease can and much of the medical establishment including doctors like Gary Wormser there's a lot of misinformation out there about Lyme disease recently the American Journal of Medicine he equated some of the chronic Lyme conversation to fake news in terms of the patients I see referred to me for chronic Lyme I of the patients I see don't have any evidence of ever having headline worms or as chief of infectious diseases at New York Medical College he never treated Julia but he influenced many who did Wormser was a lead author of lime treatment guidelines followed by the CDC they say it's fairly easy to diagnose and most patients can be cured in 10 to 28 days with antibiotics David Benson the father in Morris County New Jersey could be a case study I tested positive back in April fatigue and a bad rash were among his symptoms I did 30 days of antibiotics and I was I was feeling pretty good after that he does have a few lingering problems which the CDC calls post Lyme disease syndrome but for people like Julia who never tested positive the official line is that she has a different or new illness we have no explanation or they have another illness the medical system essentially is broken at the heart of the Lyme war is a disagreement over blood tests approved by the FDA to detect line have you been sick for months and months the laboratory test should be positive the science is there the science is there that the testing is unreliable the government says the tests are reliable but the accuracy depends upon the stage of the disease and often don't detect Lyme until four weeks after an infected tick bite did Julia's father that sounded like mad science my only one goal was to get Julia treatment he found it with a lime specialist who used different blood tests that found julia was positive for Lyme and for four other tick-borne diseases on the first week of treatment you know I got my upper body back I was able to feel my toes but with that step forward the bruises hit new minefields I couldn't get better because we couldn't afford it and the insurance company when it covered it was really hopeless you know I felt like I wasn't I was gonna stay like that forever I was just gonna die but in her darkest hour when her treatment wasn't blessed by the medical powers olia says a higher one came to her rescue invited to meet Pope Francis during his trip to New York in 2015 she says this moment aired live on news 4 changed everything came over and touched me and I know it's asking for a miracle and I didn't get up and walk I was all over the news the coverage triggered an outpouring of help and letter to dr. Horowitz who cleared a spot at his years long waiting list in Julia's case because the nerves have been severely affected for her lower extremities it's gonna take a while it can take years for the nerves to regrow my sense is with good physical therapy she will be able to start to walk a dream of Julia walking you know I I envisioned her standing and you know posing for a picture Julia's faith and incredibly even bigger dreams I think everything happens for a reason and you know I think God gave me this this thing and now I have to use it you know now I see like what my mission is to do you know to help other people there's such a controversy with Lyme disease and so many people suffer in silence you know that don't deserve it

3 comments

  1. Imagine if there was something like affordable healthcare that could make sure that everyone can get the treatment they need without having to rely on the goodwill and welfare of other people.

  2. Heartbreaking that this story is more common than anyone realises and it can happen to literally anyone, showing up in different ways!!! 🙁 The medical system is absolutely broken. What a strong girl, we share her mission!!! ✊🏻

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