Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 My name is Tiffanie. I live on Long Island. My son just turnrd 13. He fell back in Sept. playing football. He complained for 4 days about his knee hurting. No swelling or bruising. Dr. said just sprained/twisted. 4 days later it looked like a balloon. It was HUGE !! Went to ER where they drained it and called me next day saying he has Lyme. I was shocked. He never got bit that I knew of. Went to infectious disease dr. and they said it was late stage for him to develop knee arthritis. He had a spinal tap. 7 times to get it right. Thank gos no meningitis or lyme in cerebral fluis. They said there was trace amount which was a pass through from the blood ?? So he didn't need a pickline (?). He was on doxyxline for 2 days and back in hospital getting IV fluids from violently throwing up and dehydration. Stopped Doxy for 2 wks then started again. I'm sorry for rambling but I know nothing about this disease just what I read online. Now his knee hurts again and is tiny bit swollen. I'll call I.D. in the am to follow up. Will he always have this ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 hey  i only have a min to write... toddler wrecking the house as we speak my son is 12 and got lymeover summer never found any ticks but he had the rash... he couldnt handle the doxy it would make his body shake incredibly so the dr put him on another combo and he really didnt get better it was august and he was just laying on the couch all day long.. usually in aug i cant even get him to come in the house he is skteboarding, swimming, ect...anyway his health did not improve and finally i amde an appt to see dr charles ray jones in ct. it is expensive just try not to think about the cost and call and ask for their first avail appt and then they wont put you on their cancellation list but i called them every single week usually 2x a wk to ask if they had any cancellations and then finally they did happened to be on his 12th bdaythey took a ton of blood for testing and changed his meds and in 2weeks he was perfect! no more symptoms!everyone's story is different but i am so thankful i had done that b/c 3months had gone by of me giving him other meds from another dr and he just wasnt improvingdr jones is def the way to goi only wish he took adults too so i could gogood luck! peace,laina From: Tiffanie <tiffanies_towing@...> Subject: [ ] HI. I'M A NEW MEMBER Date: Tuesday, January 12, 2010, 9:26 PM  My name is Tiffanie. I live on Long Island. My son just turnrd 13. He fell back in Sept. playing football. He complained for 4 days about his knee hurting. No swelling or bruising. Dr. said just sprained/twisted. 4 days later it looked like a balloon. It was HUGE !! Went to ER where they drained it and called me next day saying he has Lyme. I was shocked. He never got bit that I knew of. Went to infectious disease dr. and they said it was late stage for him to develop knee arthritis. He had a spinal tap. 7 times to get it right. Thank gos no meningitis or lyme in cerebral fluis. They said there was trace amount which was a pass through from the blood ?? So he didn't need a pickline (?). He was on doxyxline for 2 days and back in hospital getting IV fluids from violently throwing up and dehydration. Stopped Doxy for 2 wks then started again. I'm sorry for rambling but I know nothing about this disease just what I read online. Now his knee hurts again and is tiny bit swollen. I'll call I.D. in the am to follow up. Will he always have this ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Hi Tiffanie -- No, he won't always have it but if it's late stage a few weeks will not do the trick. Also, there are other drugs besides doxy, which can really be hard on your system. For example, my kids and I are all on Amoxicillin. Where do you live? IT is a good idea to have a Lyme Literate doctor follow your son's progress, become conventional doctors generally do not understand that a few weeks will not cure the Lyme. So sorry that you have to deal with this but so very glad it was diagnosed so simply and quickly. Take care, Natasha From: Tiffanie <tiffanies_towing@...> Subject: [ ] HI. I'M A NEW MEMBER Date: Tuesday, January 12, 2010, 6:26 PM  My name is Tiffanie. I live on Long Island. My son just turnrd 13. He fell back in Sept. playing football. He complained for 4 days about his knee hurting. No swelling or bruising. Dr. said just sprained/twisted. 4 days later it looked like a balloon. It was HUGE !! Went to ER where they drained it and called me next day saying he has Lyme. I was shocked. He never got bit that I knew of. Went to infectious disease dr. and they said it was late stage for him to develop knee arthritis. He had a spinal tap. 7 times to get it right. Thank gos no meningitis or lyme in cerebral fluis. They said there was trace amount which was a pass through from the blood ?? So he didn't need a pickline (?). He was on doxyxline for 2 days and back in hospital getting IV fluids from violently throwing up and dehydration. Stopped Doxy for 2 wks then started again. I'm sorry for rambling but I know nothing about this disease just what I read online. Now his knee hurts again and is tiny bit swollen. I'll call I.D. in the am to follow up. Will he always have this ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 I am sorry about your son. I know where he is coming from. You need to consider getting him tested through Igenex or Fry labs for co-infections. It sounds like he could have Babesia or others. Good luck, Mimi www.iammimi.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2010 Report Share Posted January 19, 2010 Just got blood results back. 's Lyme titre is very high. Same levels as when dignosed. What does this mean. Please I'm a wreck. From: Tiffanie <tiffanies_towing@...> Subject: [ ] HI. I'M A NEW MEMBER Date: Tuesday, January 12, 2010, 9:26 PM My name is Tiffanie. I live on Long Island. My son just turnrd 13. He fell back in Sept. playing football. He complained for 4 days about his knee hurting. No swelling or bruising. Dr. said just sprained/twisted. 4 days later it looked like a balloon. It was HUGE !! Went to ER where they drained it and called me next day saying he has Lyme. I was shocked. He never got bit that I knew of. Went to infectious disease dr. and they said it was late stage for him to develop knee arthritis. He had a spinal tap. 7 times to get it right. Thank gos no meningitis or lyme in cerebral fluis. They said there was trace amount which was a pass through from the blood ?? So he didn't need a pickline (?). He was on doxyxline for 2 days and back in hospital getting IV fluids from violently throwing up and dehydration. Stopped Doxy for 2 wks then started again. I'm sorry for rambling but I know nothing about this disease just what I read online. Now his knee hurts again and is tiny bit swollen. I'll call I.D. in the am to follow up. Will he always have this ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2010 Report Share Posted January 19, 2010 I just stopped crying. He has to go into Ped. ICU thurs. morning for a pickline(?).thats an IV through the heart. I'm so scared. I'm gonna have a breakdown. > > From: Tiffanie <tiffanies_towing> > > Subject: [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > > My name is Tiffanie. I live on Long Island. My son > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Hi , I have to respond to you briefly because I remember the panic I felt when I decided to have a PICC line for my son. He was in 7th grade. It was the best decision I ever made. The procedure was not nearly as scary as I thought, but I was very mindful of making sure the doctors explained it to him before they began so he knew what to expect. They do it in the hospital and administer the first dose to assure there are no adverse reactions. Bring an IPod or a book to keep him distracted. Make sure they use some numbing cream on his arm (although some people have the PICC line inserted without it). This is very common. I know how scary it is, but you can do this and assuming that you have a Lyme-literate doctor s/he would not suggest your child have it unless s/he thought your son would benefit. My son had a PICC line for about seven months. He is now in 9th grade and doing beautifully. He is off all medication. And, while I still worry daily, I feel that having a pro-active doctor who clinically diagnosed my son and prescribed the right treatment for his symptoms saved my guy's life. Take a deep breath. Put on a positive face for your son. Believe that the IV treatment may be the difference in his eradicating the spirochetes from his body. And use a good clean tube sock to fit over the IV line to help keep it in place. My best wishes, From: [mailto: ] On Behalf Of Tiffanie Sent: Tuesday, January 19, 2010 6:14 PM Subject: Re: [ ] HI. I'M A NEW MEMBER I just stopped crying. He has to go into Ped. ICU thurs. morning for a pickline(?).thats an IV through the heart. I'm so scared. I'm gonna have a breakdown. > > From: Tiffanie <tiffanies_towing> > > Subject: [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > > My name is Tiffanie. I live on Long Island. My son > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 That is so enlighteneing to hear!!!!! Hugs judy ________________________________ From: Natasha Moiseyev <nmoiseyev@...> Sent: Thu, January 21, 2010 10:18:09 PM Subject: Re: [ ] HI. I'M A NEW MEMBER  Our LLMD sais that the neuropsych issues will be the last to resolve BUT that as long as our daughter is still growing (which she is), she can grow completely out of those neuropsych symptoms -- she has been diagnosed with ADHD, auditory processing and sensory integration disorders and bipolar -- and most recently, with Lyme and multiple coinfections including Babesia, Bartonella and Erlichia. After 6 months I am seeing incremental changes in her cognitive stuff, organizational skills and physical coordination. I have to remind myself that as babies, humans get gross motor and big cognitive stuff and then fine motor and cognitive refinements, and that as she builds them it will be the same thing. So she won't be catcher on her softball team any time soon, but she remembered this week to put her social studies packet in the social studies section of her binder, she doesn't fall over when she stands on one leg any more, and she is less hyper overall and has her moods more in control. Pretty big steps. In treatment since August. It just started kicking in this month. What a long and tedious process, but when I see these glimmers I get so excited and delighted for her -- she's had a hard time in life and I am thrilled to imagine her getting better eventually. > > From: Tiffanie <tiffanies_towing> > > Subject: [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > > My name is Tiffanie. I live on Long Island. My son > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Thank you, I just thought I would see some miniscule improvement in my son's mental health by now, but sometimes I think he is even worse! Hugs Judy ________________________________ From: <InRNette@...> Sent: Thu, January 21, 2010 11:02:17 PM Subject: Re: [ ] HI. I'M A NEW MEMBER Â Judy: Be patient, it will improve. The Lyme bacteria is a deep tissue critter. It burrows its ugly self deep in the tissue. The antibiotic should be one that crosses the brain/blood barrier. If the antibiotic is not crossing the psych problems will be slower. Sent via BlackBerry from T-Mobile [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > > My name is Tiffanie. I live on Long Island. My son > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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