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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 posted in the PANDAS group, too. TIA for any input!

 

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 by browneyesmom
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I pray you are seeing improvement with Lyme treatment. Its tough road to recovery no matter PANs/PANDAS/Lyme.

 

I am not sure who your treating LLMD is but I did notice from the PANDAS board she is being treated with Clindamycin/Rifampin which is great combo. AND, you have found out just how difficult it is to clear strep and bring down titers even while on combo antibiotics. For our family, it took a good two years for DH titers to come down and anti-DNase-Bs is still in the 400s but heading in right direction. His ASO is now sub negative. When we first starting treating him for strep/Lyme his anti-DNase-B went up to 980 and not down as well.

 

First: I would confirm no other individuals in household are carrying strep inclusive of any household pets. As you know, you could easily be passing it back and forth in household. My friend who has Lyme got strep and also had a horrible time resolving the infection on combo'd antibiotics, it turns out PANs/Lyme son had it in his nose. Culture both tonsil and nose of household members if possible or just treat.

 

Second: Consider a third antibiotic with LLMD to see if you can clear the strep. It is not unheard of to be on three or four antibiotics during treatment. I am on Bacillin Shots, Melarone, Minocycline, hd Valtrex, IV Glutatione.

 

Third: Consider homeopathy specifically for strep or herbal remedies on top of current protocol.

 

Fourth: Gargle with some type of remedy. We've opened Oil of Oregano pills added water and gargled (taste horrible). We've used the nose spray X-Clear and spray in both nose and back of mouth. Same with Silver spray both in mouth and back of tonsils, etc.

 

Hope that gives you some ideas.

Edited by SF Mom
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My son's AntiDnase was over 2,000 for more than a year before we had his tonsils and adnoids removed. I know some say this isn't recommended but when you have tonsils that are so infected that they just won't clear, it's the only way. I would just recommend high dose antibiotics before and after surgery. This is what finally cleared the strep for my oldest son. Best of luck.

 

Dedee

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Hi Denise,

 

Please be sure to look for other underlying TBIs in addition to Lyme, even if test results come out negative. Don't assume Lyme is the only TBI. I "thought" we were done treating DD's Bartonella a while ago but that seems to be the most difficult to clear. In fact, DD's strep titers have been elevated consistently for the past several months and I'm guessing it's due to Bartonella. We have been treating Lyme for over 2 1/2 years.

 

Nancy

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