mom2gsd Posted May 10, 2010 Report Share Posted May 10, 2010 Looks like an excellent documentary on Lyme disease: Link to comment Share on other sites More sharing options...
JTs-Mom Posted May 10, 2010 Report Share Posted May 10, 2010 Thanks for posting this. I think it is extremely important for everyone to know how insidious Lyme Disease, and the many coinfections that go along with it, can be. It can manifest in many different ways and look like MANY other diseases/disorders/conditions, including tic disorders, Tourette's, and OCD, just to name a few. Although the disease is 'recognized' by most docs, most have NO CLUE how to treat it properly. After my son's tick bites, his pediatrician prescribed the WRONG antibiotic (she chose one that is ineffective for Lyme) and the script was for a completely inadequate length of time (5 days) even if it had been the right one. I didn't know anything about Lyme Disease at the time, and sadly my son paid the price for both of our ignorance. Thanks to this board (someone posted an abstract on Lyme Disease presenting as Tourette's.... THANK YOU!), I sought testing for my son and he was positive for Lyme. Because of a weakened immune system, he had also acquired mycoplasma pneumonia. He is currently in treatment, but unfortunately he went undiagnosed/untreated for almost two years. I know many parents on here have already sought testing and confirmed PANDAS, but for those who are new and still exploring, this is just a reminder to look at ALL possibilities. Link to comment Share on other sites More sharing options...
mom2gsd Posted May 11, 2010 Author Report Share Posted May 11, 2010 The pieces are beginning to fall into place, yesterday I posted this documentary and later that day my DAN called to tell me that my DS has Lyme! Call it, intuition, I guess. After a year of IVIG, with only some improvement, this may answer the why(?) question. I would suggest to everyone, if your child is not improving....DO NOT...fail to test for Lyme! I do not honestly remember him ever having a tic attached, possibly when he was very young. Link to comment Share on other sites More sharing options...
justinekno Posted May 11, 2010 Report Share Posted May 11, 2010 Which test did you do for your son that came out positive? We just have the positive 41 band (g) on the Western Blot for now. The pieces are beginning to fall into place, yesterday I posted this documentary and later that day my DAN called to tell me that my DS has Lyme! Call it, intuition, I guess. After a year of IVIG, with only some improvement, this may answer the why(?) question. I would suggest to everyone, if your child is not improving....DO NOT...fail to test for Lyme! I do not honestly remember him ever having a tic attached, possibly when he was very young. Link to comment Share on other sites More sharing options...
mom2gsd Posted May 11, 2010 Author Report Share Posted May 11, 2010 We did the IGeneX basic Lyme panel.....he was positive for 3 double star bands..... 31: 2+; 41: 1+; 83: 1+ Link to comment Share on other sites More sharing options...
justinekno Posted May 11, 2010 Report Share Posted May 11, 2010 I think we may end up going that route too. I am waiting for my own western blot test results before my son and I do the IGenex panel. How long did it take to get the results? We did the IGeneX basic Lyme panel.....he was positive for 3 double star bands..... 31: 2+; 41: 1+; 83: 1+ Link to comment Share on other sites More sharing options...
mom2gsd Posted May 11, 2010 Author Report Share Posted May 11, 2010 I think we may end up going that route too. I am waiting for my own western blot test results before my son and I do the IGenex panel. How long did it take to get the results? We did the IGeneX basic Lyme panel.....he was positive for 3 double star bands..... 31: 2+; 41: 1+; 83: 1+ about 2 1/2 weeks Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted May 11, 2010 Report Share Posted May 11, 2010 I highly recommend the IGENEX over the Western Blot since my daughter had positive lyme results on the 31 and 34 bands of the IGENEX, which are not on the Western Blots tests and which are highly indicative of lyme. I would also recommend testing for co-infections. Elizabeth Link to comment Share on other sites More sharing options...
mom2gsd Posted May 11, 2010 Author Report Share Posted May 11, 2010 I highly recommend the IGENEX over the Western Blot since my daughter had positive lyme results on the 31 and 34 bands of the IGENEX, which are not on the Western Blots tests and which are highly indicative of lyme. I would also recommend testing for co-infections. Elizabeth Are you treating her for Lyme? Link to comment Share on other sites More sharing options...
worriedmommy Posted May 11, 2010 Report Share Posted May 11, 2010 We did the IGeneX basic Lyme panel.....he was positive for 3 double star bands..... 31: 2+; 41: 1+; 83: 1+ Which Igenex test did you do? I went on their website but was confused at which test would be best. My daughter had a Western Blot by Quest Diagnostics and came up IgG & IgM positive for band 41 and IgG positive for band 66. Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted May 11, 2010 Report Share Posted May 11, 2010 Yes, we were treating our daughter for lyme, babesia, mycoplasma and strep. She no longer has mycoplasma and strep, but we are still treating her for the lyme and babesia. She is currently on 3 different antibiotics. Elizabeth Link to comment Share on other sites More sharing options...
EAMom Posted May 11, 2010 Report Share Posted May 11, 2010 Thanks for posting this. I think it is extremely important for everyone to know how insidious Lyme Disease, and the many coinfections that go along with it, can be. It can manifest in many different ways and look like MANY other diseases/disorders/conditions, including tic disorders, Tourette's, and OCD, just to name a few. Although the disease is 'recognized' by most docs, most have NO CLUE how to treat it properly. After my son's tick bites, his pediatrician prescribed the WRONG antibiotic (she chose one that is ineffective for Lyme) and the script was for a completely inadequate length of time (5 days) even if it had been the right one. I didn't know anything about Lyme Disease at the time, and sadly my son paid the price for both of our ignorance. Hmmm....just like PANDAS! well, except for the part about being recognized by many docs... Link to comment Share on other sites More sharing options...
EAMom Posted May 11, 2010 Report Share Posted May 11, 2010 Looks like an excellent documentary on Lyme disease: Wow! We need something like that on PANDAS. Do we have any parent film-makers? Link to comment Share on other sites More sharing options...
laurenjohnsonsmom Posted May 11, 2010 Report Share Posted May 11, 2010 I bought this DVD for Dr. Bouboulis. I can't wait for him to finish watching it so I can!!!! It's supposed to be amazing! Lynn Looks like an excellent documentary on Lyme disease: Wow! We need something like that on PANDAS. Do we have any parent film-makers? Link to comment Share on other sites More sharing options...
mama2alex Posted May 11, 2010 Report Share Posted May 11, 2010 I just looked for this DVD on Amazon and it's selling for $99.99! WHAT? Link to comment Share on other sites More sharing options...
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