Hopeny Posted December 8, 2012 Report Share Posted December 8, 2012 My DD has Lyme/Pans and is being seen in NY/CT. My niece is 12 and has a LONG history of what was thought to be PANDAS, tics, behavioral issues, textbook OCD rituals etc. She was on Zith for 1-2 years and literally as soon as abx were stopped, tics came back. She got bad leg pain on augmentin and had to stop. Now she is on Cefdinir. I have been asking about Lyme as a possible reason as to why she was not recovering. I just got a copy of her stonybrook test which has band 93 IND which our LLMD told us 100% convinces him of Lyme, he said he does not need to see anything else with that result. (gave me a paper on this topic too) To complicate matters they live very far outside the US, and my SIL is very concerned about the prolonged use of Abx. It is going to take me a huge amount of convincing to get them to bring her here for treatment. Due to the severity of her case which has gone on for years, and my SIL's views and prefernce for naturals, I was thinking that maybe I could try to convince them to see Dr. K. If you have seen him please pm me what yor experiences have been, does he use abx and naturals, is he open to PANDAS if you know etc. Any suggestions are welcome. Just as an aside, this makes a niece with Lyme, a nephew (differet sib) who got Lyme and recovered, my DD with chronic Lyme and my 3 yo who got a bullseye this summer. There has got to be some genetic predisposition here! Many thanks, Link to comment Share on other sites More sharing options...
JuliaFaith Posted December 8, 2012 Report Share Posted December 8, 2012 PM'd you. Link to comment Share on other sites More sharing options...
Hopeny Posted December 10, 2012 Author Report Share Posted December 10, 2012 PM'd you. Thank you! Link to comment Share on other sites More sharing options...
dex3703 Posted December 11, 2012 Report Share Posted December 11, 2012 Hi, I live in Seattle and have a good doctor, but it'd be nice to see someone for a second opinion on Lyme matters. Thanks! PM'd you. Link to comment Share on other sites More sharing options...
JuliaFaith Posted December 12, 2012 Report Share Posted December 12, 2012 (edited) Dex 3703 will pm you as soon as possible. Edited December 12, 2012 by JuliaFaith Link to comment Share on other sites More sharing options...
DsMom Posted January 3, 2013 Report Share Posted January 3, 2013 1354924874[/url]' post='150700']My DD has Lyme/Pans and is being seen in NY/CT. My niece is 12 and has a LONG history of what was thought to be PANDAS, tics, behavioral issues, textbook OCD rituals etc. She was on Zith for 1-2 years and literally as soon as abx were stopped, tics came back. She got bad leg pain on augmentin and had to stop. Now she is on Cefdinir. I have been asking about Lyme as a possible reason as to why she was not recovering. I just got a copy of her stonybrook test which has band 93 IND which our LLMD told us 100% convinces him of Lyme, he said he does not need to see anything else with that result. (gave me a paper on this topic too) To complicate matters they live very far outside the US, and my SIL is very concerned about the prolonged use of Abx. It is going to take me a huge amount of convincing to get them to bring her here for treatment. Due to the severity of her case which has gone on for years, and my SIL's views and prefernce for naturals, I was thinking that maybe I could try to convince them to see Dr. K. If you have seen him please pm me what yor experiences have been, does he use abx and naturals, is he open to PANDAS if you know etc. Any suggestions are welcome. Just as an aside, this makes a niece with Lyme, a nephew (differet sib) who got Lyme and recovered, my DD with chronic Lyme and my 3 yo who got a bullseye this summer. There has got to be some genetic predisposition here! Many thanks, My ds12 sees Dr.K in Redmond for PANDAS which he's had for over a year now with little relenting. He got a bullseye bite reaction 2 months pre-PANDAS onset so now seeing integrated MD in Woodinville, Dr. Klinghardt, who is LLMD (Dr. K referred us). He also practices in Europe I beleive, every other month...is that the 'Dr K' you are curious about? I won't elaborate unless we r talking about the same Dr. Link to comment Share on other sites More sharing options...
Hopeny Posted January 3, 2013 Author Report Share Posted January 3, 2013 1354924874[/url]' post='150700']My DD has Lyme/Pans and is being seen in NY/CT. My niece is 12 and has a LONG history of what was thought to be PANDAS, tics, behavioral issues, textbook OCD rituals etc. She was on Zith for 1-2 years and literally as soon as abx were stopped, tics came back. She got bad leg pain on augmentin and had to stop. Now she is on Cefdinir. I have been asking about Lyme as a possible reason as to why she was not recovering. I just got a copy of her stonybrook test which has band 93 IND which our LLMD told us 100% convinces him of Lyme, he said he does not need to see anything else with that result. (gave me a paper on this topic too) To complicate matters they live very far outside the US, and my SIL is very concerned about the prolonged use of Abx. It is going to take me a huge amount of convincing to get them to bring her here for treatment. Due to the severity of her case which has gone on for years, and my SIL's views and prefernce for naturals, I was thinking that maybe I could try to convince them to see Dr. K. If you have seen him please pm me what yor experiences have been, does he use abx and naturals, is he open to PANDAS if you know etc. Any suggestions are welcome. Just as an aside, this makes a niece with Lyme, a nephew (differet sib) who got Lyme and recovered, my DD with chronic Lyme and my 3 yo who got a bullseye this summer. There has got to be some genetic predisposition here! Many thanks, My ds12 sees Dr.K in Redmond for PANDAS which he's had for over a year now with little relenting. He got a bullseye bite reaction 2 months pre-PANDAS onset so now seeing integrated MD in Woodinville, Dr. Klinghardt, who is LLMD (Dr. K referred us). He also practices in Europe I beleive, every other month...is that the 'Dr K' you are curious about? I won't elaborate unless we r talking about the same Dr. Thanks yes its Dr. Klinghardt, I'm interested to hear your feedback. Link to comment Share on other sites More sharing options...
DsMom Posted February 4, 2013 Report Share Posted February 4, 2013 1357229758[/url]' post='151711']1357223838[/url]' post='151702']1354924874[/url]' post='150700']My DD has Lyme/Pans and is being seen in NY/CT. My niece is 12 and has a LONG history of what was thought to be PANDAS, tics, behavioral issues, textbook OCD rituals etc. She was on Zith for 1-2 years and literally as soon as abx were stopped, tics came back. She got bad leg pain on augmentin and had to stop. Now she is on Cefdinir. I have been asking about Lyme as a possible reason as to why she was not recovering. I just got a copy of her stonybrook test which has band 93 IND which our LLMD told us 100% convinces him of Lyme, he said he does not need to see anything else with that result. (gave me a paper on this topic too) To complicate matters they live very far outside the US, and my SIL is very concerned about the prolonged use of Abx. It is going to take me a huge amount of convincing to get them to bring her here for treatment. Due to the severity of her case which has gone on for years, and my SIL's views and prefernce for naturals, I was thinking that maybe I could try to convince them to see Dr. K. If you have seen him please pm me what yor experiences have been, does he use abx and naturals, is he open to PANDAS if you know etc. Any suggestions are welcome. Just as an aside, this makes a niece with Lyme, a nephew (differet sib) who got Lyme and recovered, my DD with chronic Lyme and my 3 yo who got a bullseye this summer. There has got to be some genetic predisposition here! Many thanks, My ds12 sees Dr.K in Redmond for PANDAS which he's had for over a year now with little relenting. He got a bullseye bite reaction 2 months pre-PANDAS onset so now seeing integrated MD in Woodinville, Dr. Klinghardt, who is LLMD (Dr. K referred us). He also practices in Europe I beleive, every other month...is that the 'Dr K' you are curious about? I won't elaborate unless we r talking about the same Dr. Thanks yes its Dr. Klinghardt, I'm interested to hear your feedback. Link to comment Share on other sites More sharing options...
Allie Posted March 17, 2013 Report Share Posted March 17, 2013 What about either of these DR's in CT, DR J who knows lyme/ PANDAS very well Or DR C. who is wonderful and uses combinations of homeopathic's, herbs, antibx's and more. I have heard her speak many times, and think this DR is really on top of it. Also has a son who was very sick with lyme and he is well now. This DR can also do Skype! *Seen DR K, in WA. Has some good things, but is not available after your appt for phone calls, that to me is a big issue for follow up care. I don't know any parent who has gone to him, who has been cured of whatever he was treating them for. Maybe made some improvements. He's big on giving the same protocol use for all patients, so it was sounding to me like a cookie cutter treatment plan. You can google him and find his protocols online if interested. Link to comment Share on other sites More sharing options...
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