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Okay I am thinking all 3 going on here. Her immune system is not fighting. CD57 was 36 - low. I am still waiting on interpretation of her lyme test. It looks like chronic lyme to me. We know she has mold and she has all the neuropsych sx's of PANS. UGH!

 

working on gut first- detoxing the mold, then onto methylation.. she has 13 snp's.

 

anyone on a similar journey. abx make her very sick. we are waiting to start until gut better and try to wake up the immune system.

 

looking for input, support, thanks:)

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Okay I am thinking all 3 going on here. Her immune system is not fighting. CD57 was 36 - low. I am still waiting on interpretation of her lyme test. It looks like chronic lyme to me. We know she has mold and she has all the neuropsych sx's of PANS. UGH!

 

working on gut first- detoxing the mold, then onto methylation.. she has 13 snp's.

 

anyone on a similar journey. abx make her very sick. we are waiting to start until gut better and try to wake up the immune system.

 

looking for input, support, thanks:)

 

I don't know about input, but here's some support for sure! :) We started with PANDAS, went on to discover lyme, and now are looking at mold. Antibiotics made all 3 of my kids miraculously better for a year. But 2 out of 3 could no longer tolerate them (stomach pains) and they didn't hold the improvements after they stopped taking them. So back to square one. For PANDAS DS we have decreased abx and added Abilify. After 1.5 weeks we are definitely seeing improvement, but it's too soon to say anything for sure. Meanwhile, tackling mold issues in our 1800s farm house - wow, not fun.

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We have also been on a similar journey in the last 2 yrs. (son has been ill for 2+ yrs.). If you look at my threads (prior posts) you can get an idea of what we have been thru with mold/lyme/PANS. The majority of his treatment (at least for the last 2 yrs. with ND) has been with natureopathic & homeopathic meds. He has done some bouts of abx but not more than a few months worth. Ds CD57 was 24 when we started treatment 2 yrs. ago and it is now 48 so seeing some improvement there.

 

After final remediation (we hope!) in our house and anti-viral meds. this last summer my son started feeling better after over 2 yrs. of flu-like symptoms and initial PANS flair. At first I thought it was because remediation was just finished before that but now not sure.

 

In hindsight, he started feeling worse at the end of that 6 weeks but we do not know if it was from a PANS flair (after several jolts to his body-yes literally) or virus coming back in full force. He is now back to those flu-like symptoms unfortunately but not testing for mold so we are still on a healing journey.

 

It seems that with PANS, just getting the immune system working properly is the main thing we want to accomplish (along with treating and getting rid of as much other illnesses as possible). Since that has not worked yet, ds seems to have other things that keep popping up (parasites/viruses etc.). So we are still working on trying to get immune system to work, while trying to treat and deactivate other illnesses that keep popping up. He is also on a maintenance protocol for parasites/anti-bacterial/anti-viral that, apparently is doing as much as possible.

 

We are seriously considering and waiting to start the GcMAF since the viruses have not subsided with quite a few med. approaches.

 

Mold is a serious thing for anyone's health, so good that you are addressing it now. Let me know if there is anything else you would like to know. I am a little slow on posting these days while trying to be a teacher and all the rest to family. :)

Edited by JuliaFaith
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Thank your help! It is very helpful to know others have dealt with all of these problems together. So far we are addressing my daughter's gut health - detox mold and get immune system moving again. We then plan on working on methylation. she has 13 snp's. Lots of issues with that. After we get methylation working better then we will see what is leftover. thinking LDN may be a good choice, since daughter has hashimotos and psoriasis. plus the PANS.

 

Mold inspector comes Monday. So we will see. I am a bit nervous but we need to know.

 

I may have more questions as we proceed.

 

thanks:))

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My daughter got to the point of not tolerating abx (gut issues) and my son just wansn't responding to oral abx. We made the switch to IV treatments and have seen a lot of improvement, but we are still not quite there. Daughter (infections only) has been on IV since March and son (PANS + infections) since January. Not sure when it will end.

 

My son's CD57 was 13 in March 2011 and dipped to 9 after 16 months of treatment. Babesia as well as Lyme can suppress CD57 (and I imagine other things can do this as well). It's the lowest the LLMD has ever seen.

 

Mold is something that nags me everyday, but we are not prepared financially to remediate. So I ignore it for now knowing I will have to open Pandora's box at some point.

 

Best of luck with the mold inspector. Keep us posted.

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wow it is crazy how much we all have to deal with. Having more then one child sick too...I don't know how you do it.

 

I live in az so dont think of mold. If there is something it will be a leak somewhere. i hope no remediation is needed. we will see.

 

we see pans/pandas neurologist and then psych nurse end of this month. i want to wait to add abx - the last few times we have tried she got so sick...i think if we can build her up she will be better ready if we need to use them...seems shots or iv would be less harsh on the gut...

 

thank you.

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I live in az so dont think of mold. If there is something it will be a leak somewhere. i hope no remediation is needed.

Make sure you check air conditioner if you have one.

 

Have read that dry area do have mold that really gets kicked up when it rains. Weird huh?

 

Wish you the best on everything.

Edited by JuliaFaith
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