Guest guest Posted November 9, 2011 Report Share Posted November 9, 2011 Happy you're getting some answers. And glad she's doing better too! Will be interested to hear how the psychologist appointment goes, do update us! > > The strep and Lyme tests we had done came back negative. Thankfully, DD seems to be in a better place this week with a lot fewer intrusive thoughts and more of an ability to dismiss them when they come up. It seems like when she's really involved with an activity, like riding her bike or dance class, we see less of this. We've got the meeting with the psychologist in a couple of weeks so we'll just keep trucking along until then. > -BC > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2011 Report Share Posted November 12, 2011 For what its worth, my dd was negative for elevated ASO/AntiDnase and was still diagnosed with PANDAS by 3 doctors. Subsequently, she had several negative Lyme tests but was also diagnosed (and had symptoms and lyme specific bands positive, though not 4 bands positive for a CDC positive) with Lyme Disease by the top pediatric Lyme specialist in the US. Don’t take a negative western blot for face value unless you’ve seen it yourself, its been the more thorough Igenex test, and there are NO lyme specific bands that are positive. You can see what each band means on www.drjoneskids.com under LAB TESTS, then TESTS EXPLAINED. If you think PANDAS or Lyme might be a possibility, make sure you explore these further. Since starting Lyme treatment, my dd is finally making progress again....it’s a long road, but it is curable. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2011 Report Share Posted November 12, 2011 For what its worth, my dd was negative for elevated ASO/AntiDnase and was still diagnosed with PANDAS by 3 doctors. Subsequently, she had several negative Lyme tests but was also diagnosed (and had symptoms and lyme specific bands positive, though not 4 bands positive for a CDC positive) with Lyme Disease by the top pediatric Lyme specialist in the US. Don’t take a negative western blot for face value unless you’ve seen it yourself, its been the more thorough Igenex test, and there are NO lyme specific bands that are positive. You can see what each band means on www.drjoneskids.com under LAB TESTS, then TESTS EXPLAINED. If you think PANDAS or Lyme might be a possibility, make sure you explore these further. Since starting Lyme treatment, my dd is finally making progress again....it’s a long road, but it is curable. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2011 Report Share Posted November 12, 2011 For what its worth, my dd was negative for elevated ASO/AntiDnase and was still diagnosed with PANDAS by 3 doctors. Subsequently, she had several negative Lyme tests but was also diagnosed (and had symptoms and lyme specific bands positive, though not 4 bands positive for a CDC positive) with Lyme Disease by the top pediatric Lyme specialist in the US. Don’t take a negative western blot for face value unless you’ve seen it yourself, its been the more thorough Igenex test, and there are NO lyme specific bands that are positive. You can see what each band means on www.drjoneskids.com under LAB TESTS, then TESTS EXPLAINED. If you think PANDAS or Lyme might be a possibility, make sure you explore these further. Since starting Lyme treatment, my dd is finally making progress again....it’s a long road, but it is curable. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2011 Report Share Posted November 13, 2011 - I am a bit confused. Is it pandas or Lyme? Also what kind of improvements are you seeing with Lyme treatment? Thanks! Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2011 Report Share Posted November 13, 2011 - I am a bit confused. Is it pandas or Lyme? Also what kind of improvements are you seeing with Lyme treatment? Thanks! Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2011 Report Share Posted November 13, 2011 - I am a bit confused. Is it pandas or Lyme? Also what kind of improvements are you seeing with Lyme treatment? Thanks! Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 I have to echo 's recommendation to look very closely at test results and educate yourself about how a positive or negative interpretation is made. If you had the Western Blot, do any numbers show up at all? Our dd was diagnosed with PANDAS in June 2010 (only slighltly elevated strep titer, very high Cunningham results). At that time she was also tested for Lyme through a standard Western Blot. The interpretation was negative, at the time, by the doctor that ordered the test (whom, by the way, I deeply respect, but that at the time may not have been as well versed as he is now about how Lyme and co-infections can cause OCD). She was treated with Zithromax for the strep and improved quickly, but stalled and then declined six months later. After playing around for a few months with other antibiotic combinations, the same doctor ordered more test, including Lyme, Bartonella and other tick born infections (but this time through IgeneX). She was positive for Bartonella and Ehrlichiosis, but negative for Lyme. The doctor referred us to a Lyme specialist at that point. We started treating her for the Bartonella with Bactrim and Zithromax. She improved slowly, with lots of ups and downs, but is now, almost 8 months later, doing very well, about 90-95%. But here's a kicker, we just saw our Lyme doctor again on Saturday. I showed him those original results that were ordered in 2010. She showed antibodies for one of the specific protein bands for Borrelia (the bacteria that causes Lyme). HIs interpretation of that was different from the original doctor. In his opinion, she showed evidence of exposure to Borrelia (a.k.a. Lyme). So he expects that it may be in cyst form, thus the negative IgeneX results. He has added a third antibiotic to the mix, a cyst buster, called Tindamax. We will be doing that 2 days a week in addition to the daily Bactrim and Zithromax. Time will only tell, but the hope is that this will be the final piece to the puzzle in getting her to 100%. Please feel free to email or post if you have any questions. Best wishes, Kara > > - I am a bit confused. Is it pandas or Lyme? Also what kind of improvements are you seeing with Lyme treatment? Thanks! > > > Sent from my iPhone > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 I have to echo 's recommendation to look very closely at test results and educate yourself about how a positive or negative interpretation is made. If you had the Western Blot, do any numbers show up at all? Our dd was diagnosed with PANDAS in June 2010 (only slighltly elevated strep titer, very high Cunningham results). At that time she was also tested for Lyme through a standard Western Blot. The interpretation was negative, at the time, by the doctor that ordered the test (whom, by the way, I deeply respect, but that at the time may not have been as well versed as he is now about how Lyme and co-infections can cause OCD). She was treated with Zithromax for the strep and improved quickly, but stalled and then declined six months later. After playing around for a few months with other antibiotic combinations, the same doctor ordered more test, including Lyme, Bartonella and other tick born infections (but this time through IgeneX). She was positive for Bartonella and Ehrlichiosis, but negative for Lyme. The doctor referred us to a Lyme specialist at that point. We started treating her for the Bartonella with Bactrim and Zithromax. She improved slowly, with lots of ups and downs, but is now, almost 8 months later, doing very well, about 90-95%. But here's a kicker, we just saw our Lyme doctor again on Saturday. I showed him those original results that were ordered in 2010. She showed antibodies for one of the specific protein bands for Borrelia (the bacteria that causes Lyme). HIs interpretation of that was different from the original doctor. In his opinion, she showed evidence of exposure to Borrelia (a.k.a. Lyme). So he expects that it may be in cyst form, thus the negative IgeneX results. He has added a third antibiotic to the mix, a cyst buster, called Tindamax. We will be doing that 2 days a week in addition to the daily Bactrim and Zithromax. Time will only tell, but the hope is that this will be the final piece to the puzzle in getting her to 100%. Please feel free to email or post if you have any questions. Best wishes, Kara > > - I am a bit confused. Is it pandas or Lyme? Also what kind of improvements are you seeing with Lyme treatment? Thanks! > > > Sent from my iPhone > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 I have to echo 's recommendation to look very closely at test results and educate yourself about how a positive or negative interpretation is made. If you had the Western Blot, do any numbers show up at all? Our dd was diagnosed with PANDAS in June 2010 (only slighltly elevated strep titer, very high Cunningham results). At that time she was also tested for Lyme through a standard Western Blot. The interpretation was negative, at the time, by the doctor that ordered the test (whom, by the way, I deeply respect, but that at the time may not have been as well versed as he is now about how Lyme and co-infections can cause OCD). She was treated with Zithromax for the strep and improved quickly, but stalled and then declined six months later. After playing around for a few months with other antibiotic combinations, the same doctor ordered more test, including Lyme, Bartonella and other tick born infections (but this time through IgeneX). She was positive for Bartonella and Ehrlichiosis, but negative for Lyme. The doctor referred us to a Lyme specialist at that point. We started treating her for the Bartonella with Bactrim and Zithromax. She improved slowly, with lots of ups and downs, but is now, almost 8 months later, doing very well, about 90-95%. But here's a kicker, we just saw our Lyme doctor again on Saturday. I showed him those original results that were ordered in 2010. She showed antibodies for one of the specific protein bands for Borrelia (the bacteria that causes Lyme). HIs interpretation of that was different from the original doctor. In his opinion, she showed evidence of exposure to Borrelia (a.k.a. Lyme). So he expects that it may be in cyst form, thus the negative IgeneX results. He has added a third antibiotic to the mix, a cyst buster, called Tindamax. We will be doing that 2 days a week in addition to the daily Bactrim and Zithromax. Time will only tell, but the hope is that this will be the final piece to the puzzle in getting her to 100%. Please feel free to email or post if you have any questions. Best wishes, Kara > > - I am a bit confused. Is it pandas or Lyme? Also what kind of improvements are you seeing with Lyme treatment? Thanks! > > > Sent from my iPhone > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 Kara, I'm interested to hear how she responds to the added Tindamax. Any idea how long til you know it may be helping (a month, 12 weeks...)? > > > > - I am a bit confused. Is it pandas or Lyme? Also what kind of improvements are you seeing with Lyme treatment? Thanks! > > > > > > Sent from my iPhone > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2011 Report Share Posted November 15, 2011 What I really question is how tests that show " exposure " to borrelia are automatically assumed to mean he person succumbed to Lyme. I thought any healthy person who was exposed to borrelia would produce antibodies to it, not necessarily meaning they are still sick with it. It scares me a bit Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2011 Report Share Posted November 15, 2011 I'll let you know after we start it. He told us to do it one Friday and Saturday in case she experiences any herxing (i.e. an increase in symtpoms) it will start to occur over the weekend. So we will give her first dose this Friday. He said she would stay on it until we take her off of all of the antibiotics. That is supposed to happen two months after all of her symptoms are gone. (Hopefully by spring???) I think we should know relatively quickly by any herxing if there actually is LY\yme in cyst form or not. > > Kara, I'm interested to hear how she responds to the added Tindamax. Any idea how long til you know it may be helping (a month, 12 weeks...)? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2011 Report Share Posted November 15, 2011 I believe you are correct. If you've been exposed to Lyme but don't have any symptoms, then you haven't succumbed to Lyme. What many don't realize is that Lyme can cause a lot of neuro-psychiatric symptoms, including OCD. Most people just think it causes things like fatigue, arthritic like pain, etc. here is a link to a brochure explaining Psychiatric Lyme Disease: http://www.ilads.org/lyme_disease/Psychiatric_Brochure_08_08.pdf In the end, like so many other things, it is a clinical diagnosis based on symptoms and supporting blood work. > > What I really question is how tests that show " exposure " to borrelia are automatically assumed to mean he person succumbed to Lyme. I thought any healthy person who was exposed to borrelia would produce antibodies to it, not necessarily meaning they are still sick with it. It scares me a bit > > > Sent from my iPhone > Quote Link to comment Share on other sites More sharing options...
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