Guest guest Posted March 24, 2010 Report Share Posted March 24, 2010 Hi Natasha, You mentioned your daughters have congenital Lyme. Can you tell me a little about how you know that? I assume you had/have Lyme. I'm asking because I was bit as a child, had a few symptoms throughout my life, but they didn't really worsen until about 3 yrs ago when my father died and after my son had been very sick (undiagnosed Lyme). I'm curious about your kids with congenital Lyme. It sounds like your daughter and my son's symptoms flared at about the same age. Our LLMD said that's common--with the onset of puberty. Also, does your husband have Lyme? thanks, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2010 Report Share Posted March 24, 2010 Hi Elaine -- Ours is a bizarre story. My husband grew up in Maine and was probably bitten in his senior year of high school -- he remembers getting sick and never reaching his athletic peak again after that, but he does not remember being bitten specifically by a tick (he had many mosquito and other insect bites so who knows) and does not recall having a bullseye rash. I have had strange symptoms for years but nothing I could identify as Lyme. My daughters had strange symptoms too -- the older was was always very sensitive to stimuli, light, sound, textures, etc. The younger one had fine motor and neuropsych stuff from an early age too, as well as asthma and other strange things, but nothing, again, that one would identify as Lyme. The older one complained periodically (even in kindergarten) about pain in her ankles and legbones, but the pediatrician chalked it up to " growing pains. "  If you read Ann Corson's article (google Corson and " betterhealthguy " and you will find it -- GREAT article) you will see all these diverse symptoms of pediatric Lyme. Anyway, our older daughter flared just after her 8th birthday. After a few months is subsided more or less, and came back with a vengeance when she was about 10 1/2 (fifth grade). From then on it was just bad. Some weeks were less bad, but it never went away for more than a couple of weeks. She was diagnosed with fibromyalgia and then, when the treatments weren't working, I took her to a doctor who specialized in chronic fatigue to see if he would put her on Valcyte. After about 15 minutes he diagnosed her clinically with Lyme and coinfections (esp bartonella) and the tests came back positive. Her little sister had had these neuropsych symptoms for a long time, but we didn't connect them. She was bitten by a tick last May and started to have a lot of bad symptoms, joint pain, exhaustion and so on so we had her tested too. Sure enough, positive. The doctor felt that the recent tick bite was the gift that got her tested, but given her medical history he felt she had probably been infected for some time. I figured it was just bad luck that both had Lyme, but we camp a lot so I figured that explained it. As time went on, I read the Corson article and got hold of my kids' full medical records and, as I went back and back, it seemed they had shown signs of Lyme since birth! Also, I had watched Under Our Skin about 4 times and it really hit home that Lyme can be sexually transmitted and transmitted in utero. So as I read the list of symptoms I noticed that I had complained of many of these seemingly random, unconnected things over the past many years, and so had my husband. Our LLMD thought it made perfect sense that we would also be infected and that the girls were congenitally infected. And then the tests came back positive. So that's how we came to that conclusion. It makes a lot more sense than that all four of us were independently infected and none of us remembered the tick bite or had a rash. Our LLMD says that the best thing that can happen for congenitally infected kids is to be treated before they finish growing. They can make a full recovery, even from the massive neuropsych symptoms. So we are holding onto that hope. Also, if there is a lot of brain involvement, prepare yourself that your child will have a lot of joint pain down the road because as the spirochetes leave the brain they migrate to the joints and then out. Bummer, but I've seen it happen to my younger daughter. The good news is that I do see major cognitive improvements, so there you go. Good luck and keep us/me posted. It's a long haul and it's nice to have people walking the walk with you. Cheers Natasha From: <ecckwalk@...> Subject: Re: [ ] New member- Natasha Date: Tuesday, March 23, 2010, 6:26 PM  Hi Natasha, You mentioned your daughters have congenital Lyme. Can you tell me a little about how you know that? I assume you had/have Lyme. I'm asking because I was bit as a child, had a few symptoms throughout my life, but they didn't really worsen until about 3 yrs ago when my father died and after my son had been very sick (undiagnosed Lyme). I'm curious about your kids with congenital Lyme. It sounds like your daughter and my son's symptoms flared at about the same age. Our LLMD said that's common--with the onset of puberty. Also, does your husband have Lyme? thanks, Elaine Quote Link to comment Share on other sites More sharing options...
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