natterbus Posted November 20, 2008 Report Share Posted November 20, 2008 The doctors tell me no but from some of your stories I am wondering if they know what they are talking about. Can a throat culture be negative for strep and strep still be somewhere in the body waiting to surge when antibiotics are gone? I ask because ds8 (whose had an Aspergers diagnosis for 2 years) has had 3 strep infections in 3 months, with 1 or 2 tests of cure in between each one. It is like a miracle...2 weeks after the first treatment started I had a completely different child. Then a month later anger symptoms returned only for us to realize about 10 days later that it was strep again. Again a month later, odd behavior and anger increased but took us 10 days to suspect strep. I am wondering if he never really got rid of the strep in the first place despite a negative throat culture. The rapid culture has NEVER been positive and we often push 48 hours before the culture starts to grow despite weeks of symptoms. The other thing is that his main symptom for 3 months has been headache (also stomach ache) and while this improves after treatment, it never completely goes away for more than a few days in between infections. Thoughts? Thanks, Natterbus Link to comment Share on other sites More sharing options...
amy s Posted November 20, 2008 Report Share Posted November 20, 2008 The doctors tell me no but from some of your stories I am wondering if they know what they are talking about. Can a throat culture be negative for strep and strep still be somewhere in the body waiting to surge when antibiotics are gone? I ask because ds8 (whose had an Aspergers diagnosis for 2 years) has had 3 strep infections in 3 months, with 1 or 2 tests of cure in between each one. It is like a miracle...2 weeks after the first treatment started I had a completely different child. Then a month later anger symptoms returned only for us to realize about 10 days later that it was strep again. Again a month later, odd behavior and anger increased but took us 10 days to suspect strep. I am wondering if he never really got rid of the strep in the first place despite a negative throat culture. The rapid culture has NEVER been negative and we often push 48 hours before the culture starts to grow despite weeks of symptoms. The other thing is that his main symptom for 3 months has been headache (also stomach ache) and while this improves after treatment, it never completely goes away for more than a few days in between infections. Thoughts? Thanks, Natterbus I'm sure there will be someone who can answer this better than I can but I wanted to give you my experience with my dd. She had a negative culture with symptoms of fever and sore throat at the same time her brother was treated for strept with scarlet fever. 7 months later her strept titer that was FINALLY done (her pandas symptoms started about a month after the scarlet fever in her brother) at that time was positive for strept some time in the past. I don't know why she cultured negative. I think those tests are only about 85% anyway. I know there are multiple sites that strept can occur. People have written here about perianal strept and there is also impetigo which is caused by strept. If you don't already, I would definately change his toothbrush next time he gets on antibiotics for strep (about 24 hours after). Maybe also you could ask for titers. Good luck. regards, amy s Link to comment Share on other sites More sharing options...
EAMom Posted November 20, 2008 Report Share Posted November 20, 2008 Hi Natterbus, Yes, strep can be in skin, perianal, or sinuses. Here is a thread that might be helpful: http://www.latitudes.org/forums/index.php?...art=#entry26703 Have you throat cultured other family members, to check for a carrier who might be re-infecting your 8-year-old? Our 5-year-old (non-pandas, we hope) dd is a strep carrier (and she doesn't have any symptoms when she gets strep). It's also possible your son is a sort of strep "carrier" himself. Strep carriers are harder to clear. Azithromycin is supposed to be better for eradicating intracellular strep (which carriers likely have) than amoxicllin, augmentin, or cephalosporins. Our ped also wanted to try Clindamycin (when Augmentin didn't work) to clear our 5-year-old...the liquid version was totallly nasty tasting though, so she wouldn't take it. We were able to clear her (last May) on Azithromycin. My 8-year-old PANDAS dd is has been on Azithromycin 250mg daily since June. She is doing well on this drug but has even reacted (mild pandas symptoms) when her sister gets a (asymptomatic) strep infection. Anyway, it's possible your son never fully cleared his strep infection. The other possiblity is that there is someone else in the household who is re-infecting him. Or both. Good luck! EAMom Link to comment Share on other sites More sharing options...
peglem Posted November 20, 2008 Report Share Posted November 20, 2008 Bacteria are known to colonize w/ other pathogens (yeast, fungi) in biofilms. A protective film covers the biofilm like a "cloaking device" allowing the pathogens to hide from the body and most antibiotics. Here sre a few articles about biofilms: http://www.medicalnewstoday.com/articles/47091.php http://www.erc.montana.edu/Cbessentials-SW...elude060602.htm What is not mentioned in these articles is that Azithromycin is the only antibiotic, so far, that is known to be able to penetrate the biofilm's defenses and kill the bacteria w/in. Link to comment Share on other sites More sharing options...
EAMom Posted November 20, 2008 Report Share Posted November 20, 2008 Natterbus...re headaches: here is a thread that you may find interesting: http://www.latitudes.org/forums/index.php?showtopic=3965 Lots of PANDAS kids seem to get headaches during episodes. I would stay away from tylenol in this case: http://www.latitudes.org/forums/index.php?...art=#entry28176 We did find that Ibuprofen has helped our dd's PANDAS symptoms (possibly through decreasing inflammation in the basal ganglia?) when we gave it to her for her headaches. I would say it helped about 20%...she was able to sleep and had better mood/appetite/more normal behavior after the Ibuprofen. We noticed this effect even when she didn't have a headache. We ended up giving Ibuprofen daily for the months of June/July when she was recovering from her bad PANDAS episode. Link to comment Share on other sites More sharing options...
natterbus Posted November 20, 2008 Author Report Share Posted November 20, 2008 Thanks for all the info. All of us in the family were tested for strep during the last episode (1 month ago). Only my oldest 2 sons were positive and both were treated with Amoxacillin. My 2nd son could possibly be a carrier I suppose...I'm not sure if he's had a negative test. Natterbus Link to comment Share on other sites More sharing options...
michele Posted November 20, 2008 Report Share Posted November 20, 2008 Why is it not being published that Azith has the abilities to penetrate the biofilms defenses and kill the bacteria within? I thought we had a few medical researchers on this site. In my opinion that would be a great article to write and publish. It would also be useful to all the parents out there who are trying to explain this connection to our Dr's that don't seem to get the PANDAS /strep connection because our kids often culture negative from a throat swab. If only that article was out there I believe the treatment of our PANDAS kids would be so much more cut and dry. I pray one day the confusion of this diagnosis will be cleared. Bacteria are known to colonize w/ other pathogens (yeast, fungi) in biofilms. A protective film covers the biofilm like a "cloaking device" allowing the pathogens to hide from the body and most antibiotics. Here sre a few articles about biofilms: http://www.medicalnewstoday.com/articles/47091.php http://www.erc.montana.edu/Cbessentials-SW...elude060602.htm What is not mentioned in these articles is that Azithromycin is the only antibiotic, so far, that is known to be able to penetrate the biofilm's defenses and kill the bacteria w/in. Link to comment Share on other sites More sharing options...
peglem Posted November 20, 2008 Report Share Posted November 20, 2008 Why is it not being published that Azith has the abilities to penetrate the biofilms defenses and kill the bacteria within? I thought we had a few medical researchers on this site. In my opinion that would be a great article to write and publish. It would also be useful to all the parents out there who are trying to explain this connection to our Dr's that don't seem to get the PANDAS /strep connection because our kids often culture negative from a throat swab. If only that article was out there I believe the treatment of our PANDAS kids would be so much more cut and dry. I pray one day the confusion of this diagnosis will be cleared. The research being done on zith's effects on biofilms is in the area of cystic fibrosis, and there have been papers published on its effectiveness in that area- it just hasn't been applied to other areas. I suspect many doctors would simply say that it doesn't apply because your child doesn't have cystic fibrosis, but, If I was trying to convince a doc to try zith, I'd bring the info on biofilms and the studies done on using zith to destroy biofilms in CF. Link to comment Share on other sites More sharing options...
pmoreno Posted November 20, 2008 Report Share Posted November 20, 2008 Hi Natterbus, Yes, strep can be in skin, perianal, or sinuses. Here is a thread that might be helpful: http://www.latitudes.org/forums/index.php?...art=#entry26703 Have you throat cultured other family members, to check for a carrier who might be re-infecting your 8-year-old? Our 5-year-old (non-pandas, we hope) dd is a strep carrier (and she doesn't have any symptoms when she gets strep). It's also possible your son is a sort of strep "carrier" himself. Strep carriers are harder to clear. Azithromycin is supposed to be better for eradicating intracellular strep (which carriers likely have) than amoxicllin, augmentin, or cephalosporins. Our ped also wanted to try Clindamycin (when Augmentin didn't work) to clear our 5-year-old...the liquid version was totallly nasty tasting though, so she wouldn't take it. We were able to clear her (last May) on Azithromycin. My 8-year-old PANDAS dd is has been on Azithromycin 250mg daily since June. She is doing well on this drug but has even reacted (mild pandas symptoms) when her sister gets a (asymptomatic) strep infection. Anyway, it's possible your son never fully cleared his strep infection. The other possiblity is that there is someone else in the household who is re-infecting him. Or both. Good luck! EAMom I'm really interested in this abx controversy. Gaby has been on augmentin since her IVIG 6-7 weeks ago and after 2 weeks gradually started having PANDA like symptoms which have been on-going and fairly consistent now. When I mentioned to Dr. K that maybe the augmentin wasn't working for her & wanting to try zith, he rejected this idea and said there is nothing to prove that zith works better than augmentin and that her issue now is not strep (since she's on the abx), but rather just the behavior from the immune response that's been going on long-term. What I don't get is how they can have symptoms even while on the abx, why they seem better at first on abx, then slowly get worse and whether one abx is truly better than another. The other question is about this carrier thing - If someone is a carrier, but doesn't actively have strep, then wouldn't they test negative on a strep test? and if so, then how do you identify them as a carrier? Additionally, if the child herself is the carrier and keeps re-infecting herself, would that mean that she would always test positive? Gaby tested negative at the onset of her PANDAS, although she had all the typical symptoms of strep (sore throat, fever, stomach ache, headache) which lasted quite a long time (a week or more). I heard that carriers usually don't get strep symptoms ??? Pat Link to comment Share on other sites More sharing options...
pmoreno Posted November 20, 2008 Report Share Posted November 20, 2008 Bacteria are known to colonize w/ other pathogens (yeast, fungi) in biofilms. A protective film covers the biofilm like a "cloaking device" allowing the pathogens to hide from the body and most antibiotics. Here sre a few articles about biofilms: http://www.medicalnewstoday.com/articles/47091.php http://www.erc.montana.edu/Cbessentials-SW...elude060602.htm What is not mentioned in these articles is that Azithromycin is the only antibiotic, so far, that is known to be able to penetrate the biofilm's defenses and kill the bacteria w/in. What I'm trying to figure out from all this is why some of the kids immediately do better on the zithro, but then after a few weeks of being on it, they start to have symptoms again. Link to comment Share on other sites More sharing options...
EAMom Posted November 20, 2008 Report Share Posted November 20, 2008 Thanks for all the info. All of us in the family were tested for strep during the last episode (1 month ago). Only my oldest 2 sons were positive and both were treated with Amoxacillin. My 2nd son could possibly be a carrier I suppose...I'm not sure if he's had a negative test. Natterbus Yes, make sure the kids that were positive test negative after antibiotics (wait 3 weeks to test...if you test too soon you may get a false negative). Link to comment Share on other sites More sharing options...
pmoreno Posted November 20, 2008 Report Share Posted November 20, 2008 Bacteria are known to colonize w/ other pathogens (yeast, fungi) in biofilms. A protective film covers the biofilm like a "cloaking device" allowing the pathogens to hide from the body and most antibiotics. Here sre a few articles about biofilms: http://www.medicalnewstoday.com/articles/47091.php http://www.erc.montana.edu/Cbessentials-SW...elude060602.htm What is not mentioned in these articles is that Azithromycin is the only antibiotic, so far, that is known to be able to penetrate the biofilm's defenses and kill the bacteria w/in. This is very interesting to me because Gaby has had a speech deficit which makes it difficult for her to pronounce things exactly the way she hears them and we have had her hearing tested and they say she is able to hear sounds OK - I've been wondering if she hears quantity (loudness), but not quality (the exact sounds) - She's had a few ear infections when she was an infant, although I don't remember her having a ton of them - nothing out of the ordinary I guess. However, whenever we fly anywhere she is (more so than any of the other people in the family) completely uncomfortable (crying) about the pressure in her ears which would suggest that she might have fluid in her ears. However, she must not have had any visible signs of inflammation because that should have been picked up by the pediatrician on visits. It is entirely possible, after reading these articles about biofilms that she may have fluid in her ear with bacteria (such as strep) attached and for that reason is not really responding to the antibiotics. We have not yet tried her on zith (have asked Dr. K to put her on it, but he maintains that there's no reason to switch her off augmentin) I'll let this go a little longer, and if no improvement, will see if I can't find a way to get her on zith at least to be able to see if there's a difference. Pat Link to comment Share on other sites More sharing options...
EAMom Posted November 20, 2008 Report Share Posted November 20, 2008 Pat, a strep carrier can definitely culture positive (unless the strep is hiding out elsewhere, sinuses etc.). The main thing about strep carriers is that they don't tend to have signs (sore throat, fever etc.) when they test positive. Also, a "normal" person should naturally clear a strep infection (w/out antibiotics) within a couple of weeks. A strep carrier can have strep hanging out for months/years. It used to be thought that the strep carrier state was benign, but now experts (like Ed Kaplan) are starting to question that. The fact of the matter is that we don't really know if the strep carrier state is benign or not. Strep carriers can infect other (and give them active "strep throat") but they are not as contagious as someone that is sick (with sore throat/fever) with strep. There was a journal article article I read somewhere that discussed how if you have a lot of contact (# hours) with a strep carrier (like you live with them, or a sleepover) you are more likely to get strep form them. They are unlikely to infect someone with brief casual contact. Also, my impression is that strep carriers are a bit more difficult to culture positive (since their strep is likely intracellular and intracellular strep is harder to grow) and harder to clear with abs, but it definitely can be done. Our strep carrier 5-year-old seems to have no problem culturing positive (w/ no sore throat)! Azithromycin seems to work (2x) at clearing her. I don't know if the actual definition of a strep carrier is set in stone...Kaplan would consider our PANDAS dd to be a strep carrier. She had symptoms (likely strep) in Jan. (mild sore throat x 1 d, 3 day fever, other kids in class sick with strep) and cultured positive 2 mo. later. B/c she cultured positive so long after infection, she may be a carrier. Re Dr. K: I think he is right that the "turning back the pages stuff" may be strictly immune. However, Azithromycin also has immune modulating effects so maybe that would help from that perspective. Also, Kaplan has a paper that does demonstrate that Azirhomycin is more effective at getting intracellular strep (vs. cephalosporins, pen, etc.) http://www.journals.uchicago.edu/doi/pdf/10.1086/508773. Certainly, that has been our personal experience when trying to clear our strep carrier 5-year-old. To further complicate matters, PANDAS kids seem to react when strep is in the environment (like our older dd reacted last month when our younger had asymptomatic strep) so this may be like a kid with a severe peanut allergy reacting to peanuts even if they aren't actually eating them. Link to comment Share on other sites More sharing options...
peglem Posted November 21, 2008 Report Share Posted November 21, 2008 When you guys say"intracellular" strep, are you talking about biofilms, or is that something different? Anyway, my understanding of the biofilms is that they are like "motherships". The organisms inside are sheilded from the body's defenses and most antibiotics. But, the colony reproduces and sends out microbes into the body. These, I believe are what can be detected with a strep swab. My daughter, for years, tested postive for strep 3 days after finishing a course of antibiotics. Then she'd be given another course...ad nauseum. But, even if the colonies don't "shed" active microbes, they still have waste products (everything poops) that must be removed from the colony, and waste products from yeast, fungi, and bacteria are nearly all neurotoxins. So, even if its only the biofilm and not an actual infection (with an immune response), the nervous system of the colonized person can still be affected. Link to comment Share on other sites More sharing options...
natterbus Posted November 21, 2008 Author Report Share Posted November 21, 2008 My dr. always says 3 days after antibiotics is adequate for a cure check. Where does the 3 weeks number come from? Last time we tested 11 days after finishing the antibiotics and it was negative. I started seeing PANDAS symptoms at 19 days after antibiotics and 9 days after that he tested positive. natterbus Link to comment Share on other sites More sharing options...
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