Claudia wrote:

o2bdead wrote:



I would like to see one long-term chronic Lymie who has gone into remission untreated. Can you point me to even one? Even a second-hand story of one would be okay.





Stalking Dr. Steere Over Lyme Disease

By DAVID GRANN



... In the late 1970's, as Steere's team fanned out along the Connecticut River, about 50 miles away in Westport, Conn., my 11-year-old sister woke up with tingling in her joints. My father, a cancer specialist, thought she had some sort of flu, but 24 hours later she couldn't walk. As my mother and I looked on, my father carried her out to the car and took her to Stamford Hospital. When he returned with her several hours later in a wheelchair, I could hear him talking to my mother in hushed voices in the bedroom. The next day, he took her to a specialist at Yale, who said that despite negative tests, she probably had an acute form of juvenile rheumatoid arthritis and might die. He recommended that my father admit her to the hospital and treat her with high dosages of steroids. But still unsure why her tests were negative, my father decided to wait . That night, he searched his medical books, trying to find out what she had. I could see him in the study, hunched over his desk, folding the pages in half. Medicine, he always believed, was like a language: each disease has its own meaning. But what was a disease that had no name?



[SNIP]



... When my father stumbled upon his findings in the Annals of Internal Medicine in 1977, my sister's disease had already subsided on its own, as it would in many , but her affliction now had a name -- Lyme," after the town in Connecticut in which it was discovered.



http://www.nytimes.com/2001/06/17/magaz ... 1220155200 from The New York Times, June 17, 2001By DAVID GRANN... In the late 1970's, as Steere's team fanned out along the Connecticut River, about 50 miles away in Westport, Conn., my 11-year-old sister woke up with tingling in her joints. My father, a cancer specialist, thought she had some sort of flu, but 24 hours later she couldn't walk. As my mother and I looked on, my father carried her out to the car and took her to Stamford Hospital. When he returned with her several hours later in a wheelchair, I could hear him talking to my mother in hushed voices in the bedroom. The next day, he took her to a specialist at Yale, who said that despite negative tests, she probably had an acute form of juvenile rheumatoid arthritis and might die. He recommended that my father admit her to the hospital and treat her with high dosages of steroids. But still unsure why her tests were negative,. That night, he searched his medical books, trying to find out what she had. I could see him in the study, hunched over his desk, folding the pages in half. Medicine, he always believed, was like a language: each disease has its own meaning. But what was a disease that had no name?[SNIP]... When my father stumbled upon his findings in the Annals of Internal Medicine in 1977,, but her affliction now had a name -- Lyme," after the town in Connecticut in which it was discovered.

She said that Dr. Steere told her that "you never totally get rid of the infection," even with antibiotics.

Fri 29 Aug 2008 9:21(from http://www.lymeneteurope.org/forum/view ... 8&start=10 o2bdead, here's two:Last year I was hiking on some local trails here in Connecticut with my dog and met a woman also out hiking along with her two dogs. As we hiked and began talking, I mentioned that my son and dog both had chronic Lyme infections. She listened to me and later into the conversation she told me she was one of the original Old Lyme patients that the Steere/Yale team studied back in the 1970's and she was coming up on the thirtieth anniversary of it all.Here's what she told me:She was six years old at the time that she became infected -- her family spent summer vacations camping at the beach camping grounds in Old Lyme. That summer she had a massive circular rash and became unable to move from terrible back, hip and knee pain. At its worse, her father had to carry her, she couldn't move. She had to start first grade on crutches. She was placed in the antibiotic placebo group in the study. She went on to fully recover within several weeks and has been followed up with yearly by Yale, tested each year with blood work. She still tests "highly positive." She has continually refused the antibiotics she has been offered each time based on each year's positive test. Mainly because she feels no need for them because overall she feels fine.What she told me is that she occasionally feels "Lymie" over the years, "you can just tell" she said "when it's the Lyme," this happens when she is really stressed, not sleeping well, and her immune system is further compromised from being sick from a bad flu or virus. She told me that the worse relapse she had was while away at college when she was over-tired from not getting enough sleep, stressed with class work during finals, and caught a bad stomach illness/flu that was making a lot of people ill in her dorm, including her roommate. She left her college campus in Colorado, returned home to Connecticut and saw Dr. Steere, who had left New Haven/Yale and was in Boston. He wanted to put her on IV antibiotics, but she refused it because she wanted to get back to college and didn't want to be hooked up to an IV line at college. She eventually returned to feeling well again.When I had this interesting chance meeting with her she was 36 years old, had a successful professional career, commuting into NYC for her job, and had even bought her own home as a single woman. She had recently become engaged to be married. Her only fear was passing the infection on to any children they may have, based on the fact that she continues to test positive for an active infection.She was orginally acutely ill with Lyme disease, never took any antibiotics, and in her case it resolved on it's own with only one major relapse in 30 years and several minor relapses.Did the children in these two examples of untreated, long-term remission have just Bb and no other complicating TBI's? Is there something different about their immune systems? Their genetics? Will they eventually become chronically ill down the road?