tu4four Posted March 25, 2013 Report Share Posted March 25, 2013 Is this true? Today the dr told me he wouldn't do the rapid strep again on my kiddos because they just had the bicollin shot a week ago today, and something about a biochemical reaction could cause a false positive. I have never heard of this. I have four kids who cannot seem to clear strep and at least one who is definitely PANDAS. We don't have the usual symptoms and are sometimes completely without symptoms, which is why I wanted a rapid strep test. My diagnosed PANDAS daughter is raging and super-irritable again, and I want to make sure this is gone. When I told the dr (dd was out of the room) that she was not able to function and is having rages, he smiled and said, yeah, but not for long, right? When I told him yes and that she pulled a knife out this am, he asked what was going on at the time. I need some chocolate! Link to comment Share on other sites More sharing options...
beeskneesmommy Posted March 25, 2013 Report Share Posted March 25, 2013 How annoying. I do not know if this is true, never heard of it. However, a rapid swab should always be followed by a longer culture. I cannot imagine why he would not do both, as the longer culture will provide more. I have had my kiddo come up neg. on the rapid and then pos. on the culture. Link to comment Share on other sites More sharing options...
Mayzoo Posted March 25, 2013 Report Share Posted March 25, 2013 He can culture the test instead of a rapid if he is concerned. I doubt his concern for a false positive on the rapid exceeds your concern for your child's long term well being. Continued Strep is not to be taken lightly, so he cannot in good conscious do nothing to discern her current health status. First do no harm, and to assume she cleared the strep can do great harm. I would insist on a culture being done. Link to comment Share on other sites More sharing options...
AmySLP Posted March 25, 2013 Report Share Posted March 25, 2013 Clindamycin and then find a new MD. Link to comment Share on other sites More sharing options...
Missmom Posted March 26, 2013 Report Share Posted March 26, 2013 Find a new doctor!!!! Link to comment Share on other sites More sharing options...
tpotter Posted March 26, 2013 Report Share Posted March 26, 2013 Find a new doctor!!!! Ditto, ditto! What an arrogant ****! Also, if your daughter is raging, I would be also testing for mycoplasma pneumonia, bartonella and babesia. Keep in mind, though that bart and babesia, like lyme, have a very high rate of false negatives, so you may need an LLMD if you suspect it. Does she have a dry cough, chest pain, or salty tasting sputum (all symptoms of mycoP). Does she have a rash that looks like reddish/purple stretch marks (or cat scratches) on her torso, arms chest, back or legs? This could be bartonella. Does he have elevated liver enzymes, enlarged spleen? This could be babesia. All 3 of these disorders can cause rages. Strep usually doesn't (although I would still followup with the rapid plus a longer culture, and even if they come back negative, I would also get a blood test for ASO and AntiDNAse B, because the strep may elsewhere. Our kids don't clear infection like other people do, because of their autoimmune conditions, so to assume that she's cleared it because of 1 shot of bicillin is absurd. My DS has been on bicillin injections weekly (just decreased to every other week) for a year, and his ASO is not completely down. Find another doctor fast! You don't need to be wasting your time on people who just don't get it. Link to comment Share on other sites More sharing options...
tu4four Posted March 26, 2013 Author Report Share Posted March 26, 2013 Find a new doctor!!!! Ditto, ditto! What an arrogant ****! Also, if your daughter is raging, I would be also testing for mycoplasma pneumonia, bartonella and babesia. Keep in mind, though that bart and babesia, like lyme, have a very high rate of false negatives, so you may need an LLMD if you suspect it. Does she have a dry cough, chest pain, or salty tasting sputum (all symptoms of mycoP). Does she have a rash that looks like reddish/purple stretch marks (or cat scratches) on her torso, arms chest, back or legs? This could be bartonella. Does he have elevated liver enzymes, enlarged spleen? This could be babesia. All 3 of these disorders can cause rages. Strep usually doesn't (although I would still followup with the rapid plus a longer culture, and even if they come back negative, I would also get a blood test for ASO and AntiDNAse B, because the strep may elsewhere. Our kids don't clear infection like other people do, because of their autoimmune conditions, so to assume that she's cleared it because of 1 shot of bicillin is absurd. My DS has been on bicillin injections weekly (just decreased to every other week) for a year, and his ASO is not completely down. Find another doctor fast! You don't need to be wasting your time on people who just don't get it. We have had her tested for myco--her igm? was really high, I've never seen stretch marks on her. We've had her tested through labcorp for babesia and bartonella--both negative, but I know that testing isn't reliable. I do think that she probably has bartonella, but i couldn't prove it. However, I did just get confirmation that she, or someone, has strep. She has been raging this evening, of course, and 20 minutes ago, she came into our room telling me she was sorry--highly unusual for her these days. And soon she was saying that she couldn't sleep upstairs, it was too scary. Couldn't sleep in a room with a window, not our room, etc., everythng was scary to the point of shrieking. Sudden OCD which has only been happening when she, or someone else has strep. Might happen with other illnesses, too. Our family just seems to love strep, so it seems like it's always around. Link to comment Share on other sites More sharing options...
tpotter Posted March 26, 2013 Report Share Posted March 26, 2013 Find a new doctor!!!! Ditto, ditto! What an arrogant ****! Also, if your daughter is raging, I would be also testing for mycoplasma pneumonia, bartonella and babesia. Keep in mind, though that bart and babesia, like lyme, have a very high rate of false negatives, so you may need an LLMD if you suspect it. Does she have a dry cough, chest pain, or salty tasting sputum (all symptoms of mycoP). Does she have a rash that looks like reddish/purple stretch marks (or cat scratches) on her torso, arms chest, back or legs? This could be bartonella. Does he have elevated liver enzymes, enlarged spleen? This could be babesia. All 3 of these disorders can cause rages. Strep usually doesn't (although I would still followup with the rapid plus a longer culture, and even if they come back negative, I would also get a blood test for ASO and AntiDNAse B, because the strep may elsewhere. Our kids don't clear infection like other people do, because of their autoimmune conditions, so to assume that she's cleared it because of 1 shot of bicillin is absurd. My DS has been on bicillin injections weekly (just decreased to every other week) for a year, and his ASO is not completely down. Find another doctor fast! You don't need to be wasting your time on people who just don't get it. We have had her tested for myco--her igm? was really high, I've never seen stretch marks on her. We've had her tested through labcorp for babesia and bartonella--both negative, but I know that testing isn't reliable. I do think that she probably has bartonella, but i couldn't prove it. However, I did just get confirmation that she, or someone, has strep. She has been raging this evening, of course, and 20 minutes ago, she came into our room telling me she was sorry--highly unusual for her these days. And soon she was saying that she couldn't sleep upstairs, it was too scary. Couldn't sleep in a room with a window, not our room, etc., everythng was scary to the point of shrieking. Sudden OCD which has only been happening when she, or someone else has strep. Might happen with other illnesses, too. Our family just seems to love strep, so it seems like it's always around. Is the mycoP being treated? It won't go away on it's on, and is very hard to treat. Actually, the tx for it is very similar to bartonella tx. Turns out my IgM was the one that was high in our family, DH's was extremely high normal (top number), and both my boys IgG was very high...would double when my IgM went up again. Been treating it along with bartonella and others for the past 2 years with the help of an LLMD. I would highly recommend that you get to a good LLMD with her, as soon as possible, especially since you suspect Bartonella, too (Lyme, Bart, Babesia, Erlich are all clinical diagnoses in the absence of positive blood tests, because the tests are so highly unreliable.. What state do you live in, and people can give you suggestions. I would suggest you post this on the Lyme forum, too....boy I really wish these were combined back to "PANS." It's really all inter-related. Link to comment Share on other sites More sharing options...
tu4four Posted March 26, 2013 Author Report Share Posted March 26, 2013 We are in Texas. We are seeing a Lyme dr. in Colorado in early April. He's not one that I see mentioned here, but my friend who has a daughter with identical symptoms saw him and has had a lot of success. I'm hoping that I can get her on the plane and manage her until we get there....and then back again. No, mycoP is not being treated. We found that high number a couple of years ago with her pedi who said she couldn't tell if that was an old infection or a current one and wouldn't treat because of that. We just saw a doc in northern Texas almost 2 weeks ago, and he tested for all of that again. I'm going to call today and see if they have the test results before our phone consult in 2 weeks. Maybe he will go ahead and start treating if it is positive. Link to comment Share on other sites More sharing options...
T_Anna Posted March 26, 2013 Report Share Posted March 26, 2013 As far as rapid strep tests. You can buy these on Amazon. I am on my third box and it is the first to give me false positives, but the previous two wereon the mark. That said, you can always go to a walkin clinic and they will send it out (much more reliable and results in 24-48hours). The clinics don't seem to care since they charge for the walk in. T.Anna Link to comment Share on other sites More sharing options...
Dedee Posted March 26, 2013 Report Share Posted March 26, 2013 Yes, I agree you need to dump the current physician. When my daughter first started this journey we tried a couple of bicillin injections when we thought this was just strep(before we got the myco p results in). It always helped for about a week or two, then everything went back to ****. I could'nt figure it out until we got the myco p results back and then it was more clear. The bicillin didn't work for that. We ended up using some topical antibiotics for a while till I was able to teach her to take capsules because she was so set against liquids. Finding the right combination of antibiotics is key. I think you are most likely dealing with lyme / myco / strep. Once you get in to see your LLMD things will get on track. In the mean time, you need to start looking for someone locally who will support your diagnosis. You are doing a great job handeling this. Keep fighting the good fight. Don't back down. Dedee Link to comment Share on other sites More sharing options...
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