browneyesmom Posted March 15, 2013 Report Share Posted March 15, 2013 (edited) DD13 recently diagnosed with Lyme. She's been positive for strep since around September. We've been fighting it all along; but, having trouble clearing the Strep, which I assume is due to the Lyme involvement, since they bind, making it harder to clear. I strongly suspect she still has strep... snoring loudly during the night & elevated PANDAS symptoms. Should have recently drawn strep titers soon. In the meantime, I'd appreciate input on how people are SUCCESSFULLY clearing it, when both Lyme & Strep are involved... as well as an immune deficiency. She has IVIG monthly for the immune deficiency and is being treated for the Lyme. It's the Strep I'm not sure how to address when Lyme is involved, since our prior effective protocols are not clearing it now. Help! We see her Ped this morning and he often asks me about that.... I'll post in the Lyme group, too. TIA for any input! P.S. Edited to add: Just saw her labs. Anti-DNase B is not back yet; but ASO is and it's elevated... surprise, surprise. Sigh... Edited March 15, 2013 by browneyesmom Link to comment Share on other sites More sharing options...
browneyesmom Posted March 15, 2013 Author Report Share Posted March 15, 2013 (edited) Deleted duplicate. Edited March 15, 2013 by browneyesmom Link to comment Share on other sites More sharing options...
dcmom Posted March 15, 2013 Report Share Posted March 15, 2013 (edited) Hi Denise- My two girls were diagnosed with strep (culture positive, symptomatic) while already on treatment doses of zithromax and augmentin. We immediately removed (temporarily) those two antibiotics and did a 14-day course of clindamycin. This is the suggested antibiotic treatment for strep carriers, and both my ped (not pandas knowledgeable) and my neuro (pandas doc) were on board. The clindamycin did the trick immediately. The girls had a small pandas flare with the strep, which cleared with a short course of steroids, started after the course of clindamycin was over. They were fine after that! Good luck- I hope this is a SHORT setback. BTW- you mention snoring... does she still have her tonsils? Edited March 15, 2013 by dcmom Link to comment Share on other sites More sharing options...
browneyesmom Posted March 15, 2013 Author Report Share Posted March 15, 2013 Thx... Cliinda & Rifampin had been our 'go to' protocol before Lyme hit the scene... didn't work during the fall. I'll discuss trying that again with Ped today, now that we know about Lyme & it's being treated. Tonsils were removed in August 2009... a few months after first severe exacerbation... or was it the second? Sorry, kind of tired. Thx for your input! Link to comment Share on other sites More sharing options...
PowPow Posted March 16, 2013 Report Share Posted March 16, 2013 How has she been doing? Wondering about you for awhile! Link to comment Share on other sites More sharing options...
tpotter Posted March 16, 2013 Report Share Posted March 16, 2013 Hi Denise- My two girls were diagnosed with strep (culture positive, symptomatic) while already on treatment doses of zithromax and augmentin. We immediately removed (temporarily) those two antibiotics and did a 14-day course of clindamycin. This is the suggested antibiotic treatment for strep carriers, and both my ped (not pandas knowledgeable) and my neuro (pandas doc) were on board. The clindamycin did the trick immediately. The girls had a small pandas flare with the strep, which cleared with a short course of steroids, started after the course of clindamycin was over. They were fine after that! Good luck- I hope this is a SHORT setback. BTW- you mention snoring... does she still have her tonsils? But, if you're dealing with lyme, you don't want to use steroids. Makes the lyme worse. There was a post just recently on the lyme forum about having cleared lyme 2 1/2 years ago from both her kids. Can't remember all the details, but just in the past week or so. Since you're dealing with immune deficiency, lyme and strep (at least), I would definitely be also looking at co-infections, such as bartonella, babesia, erlichiosis, etc, as well as viruses, and parasites. You really have to clear all infections, plus see if there's heavy metals that are impeding the process, and other problems. Browneyesmom, are you working with an LLMD? There are specific protocols for each type of infection, and they definitely do help. I would also recommend that you consider alternative treatment (in addition to the LLMD, abx, etc.) We have gotten a lot of benefit from LLMD tx plus ART (helps figure out what is going on) plus my kids really like chiropractics, and I've gotten some great results with acupuncture. Although abx, IVIG and PEX helped my kids a lot, they just weren't holding. That's where the alternative tx has helped. Link to comment Share on other sites More sharing options...
Pandasphilly Posted March 16, 2013 Report Share Posted March 16, 2013 Hi Denise- My two girls were diagnosed with strep (culture positive, symptomatic) while already on treatment doses of zithromax and augmentin. We immediately removed (temporarily) those two antibiotics and did a 14-day course of clindamycin. This is the suggested antibiotic treatment for strep carriers, and both my ped (not pandas knowledgeable) and my neuro (pandas doc) were on board. The clindamycin did the trick immediately. The girls had a small pandas flare with the strep, which cleared with a short course of steroids, started after the course of clindamycin was over. They were fine after that! Good luck- I hope this is a SHORT setback. BTW- you mention snoring... does she still have her tonsils? But, if you're dealing with lyme, you don't want to use steroids. Makes the lyme worse. There was a post just recently on the lyme forum about having cleared lyme 2 1/2 years ago from both her kids. Can't remember all the details, but just in the past week or so. Since you're dealing with immune deficiency, lyme and strep (at least), I would definitely be also looking at co-infections, such as bartonella, babesia, erlichiosis, etc, as well as viruses, and parasites. You really have to clear all infections, plus see if there's heavy metals that are impeding the process, and other problems. Browneyesmom, are you working with an LLMD? There are specific protocols for each type of infection, and they definitely do help. I would also recommend that you consider alternative treatment (in addition to the LLMD, abx, etc.) We have gotten a lot of benefit from LLMD tx plus ART (helps figure out what is going on) plus my kids really like chiropractics, and I've gotten some great results with acupuncture. Although abx, IVIG and PEX helped my kids a lot, they just weren't holding. That's where the alternative tx has helped. Tpotter Should there be ART in conjunction with LLMD? Is ART not enough to treat Lyme, strep, virus parasites etc? If so which doctor do you recommend first? Link to comment Share on other sites More sharing options...
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