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Is being a strep carrier real significant?


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Hi! A few questions after some recent testing dd10 has had.

Her PCM ran a bunch of tests at the end of feb and gave her a 6week trial of azith. We didn't see enough improvement in her tics for us to say YES, This IS PANDAS though. At the time she had cultured + for strep. Took her in for a follow up last week (this is about a month post abx) and the culture was again +. PCM says she is most likely a strep carrier and is referring to ENT. My question: is being a step carrier significant in the non PANDAS world? What does it mean exactly? Can she infect others being a carrier? She doesn't get the classic strep symptoms herself.

Other tests came back normal. They Lyme test was negative, although this was just a blood test so I don't know how reliable? She's never had a known tick bit though.

The myco P was 2.26 which is high. And the igM was well under the reference range. PCM said the elevated IGG simply means she had the bacteria in the past....not an active infection. So i took this to mean that she will always measure high because she has immunity now? Am I way off track here?

Her vitamin D was low but the PCM said that is quite "normal" for a 10 year old and said we could supplement if we wanted.

Th only allergen she reacted highly too was dust mites. This was an IgE serum test for about 90 items. Everything else came back below the reference range. Besides dusting/vacuuming more, does anyone have tips to control those little organisms.

TIA....I know there are a lot of questions here. I appreciate ANY help/advice.

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From what I know yes she can definately infect others if she is a carrier . Especially in the pandas world. If not pandas i have know several children who are okay and are still carriers. It just sucks for the kids who do react I guess. The pandas kids get it. Severam people I have known and believe being a carrier is no big thing bc there child is okay but in pandas world that is a no no and are chd ten react. Its crazy!

Mar

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My PANDAS son was a "carrier" for years. Our GP told me carrier status is benign and not to worry about it. But I disagreed with the doctor. I don't believe he ever was a carrier. A carrier shows no symptoms. My DS had major symptoms, just not the typical strep throat symptoms. Instead he got horrific PANDAS symptoms (exorcist version). I believe he had a chronic infection, rather than being a carrier. Regular antibiotics didn't touch his chronic strep infection. It wasn't until we treated for lyme with high dose combo abx that the strep finally cleared and the PANDAS symptoms faded.

 

My middle son is a carrier. Or at least I think he truly is a carrier - always swabs positive, no symptoms. Unfortunately for PANDAS DS this means constant exposure to strep in the house. When the boys were treated simultaneously for lyme they all cleared strep and were healing. Even carrier DS cleared. But then we had to stop his lyme treatment early because his stomach could no longer tolerate all the abx, no matter how we supplemented. Within 2 weeks of stopping his antibiotics, PANDAS DS was symptomatic again. Currently we are back in PANDAS nightmare land. Carrier DS can't tolerate antibiotics so we can't escape strep. I'm looking into getting his tonsils out, but doc is not cooperative and thinks I'm nuts.

 

So in answer to your questions, YES being a strep carrier is VERY significant in the PANDAS world. It means you always have strep exposure, and yes, the strep is still infectious. IMO a regular lyme blood test is not reliable. My DS tested negative, but we went on to do private testing via Igenex and he had so many positive bands his test was lit up like a Christmas tree. He even showed antibodies to lyme's DNA. No known tick bite. So I decided to test myself, wondering if he got it from me, and my test came back CDC positive. There are mixed opinions on Igenex, but there are other labs such as Stonybrook, which will give you a full test report, including all bands. There is also a new test by Advanced Laboratories that is an actual blood culture, rather than an antibody test.

 

I don't know about myco p, but my understanding is that in general IgM is for current infection and IgG is for past infection. However, I've heard chatter on this board in the past about myco not following the "rules", and lyme is also known for this. So who knows? Good question for an infectious diseases doc.

 

I think almost all of our PANDAS kids here on the board are vit D deficient. We had to supplement heavily - 5000 iu for my PANDAS DS - to get his level in the normal range. But vit D3 is fat soluble so it is possible to overdose. Blood levels will need to be checked periodically.

 

So that's my experience with the things you asked about. I hope that helps! Good luck!

Edited by momcap
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