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Thank you so much.

 

I took a look at her slide presentation. There was a good overview of lyme and coinfections in general, but no real mention of any association with PANS reactions. I look forward to hearing the talk if/when it is released.

Edited by rowingmom
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In one of the Q&A panel discussions, Dr. Cunningham was asked of the 1000 subjects in her study, how many had a strep infection? Mycoplasma Pneumoniae? Lyme? She answered that only 45% had strep,

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Thank you so much.

 

I took a look at her slide presentation. There was a good overview of lyme and coinfections in general, but no real mention of any association with PANS reactions. I look forward to hearing the talk if/when it is released.

 

Her talk was more about lyme than specifically about PANS reactions with lyme and coinfections. Lyme was discussed when other doctors talked about PANS as opposed to pure PANDAS and there was discussion about lyme, mycoplasma, mono, and other infections causing an exacerbation.

 

I think the tricky part for folks with lyme and PANS is to sort out which symptoms are directly from lyme and which may be the result of an autoimmune (misdirected antibody) response in the brain.

 

One think that I came away with is that chronic infection is very different from acute infection in the way the immune system reacts, and that the kids who are caught early with their first Strep-based exacerbation are likely NOT having the same level of immune system changes that kids with chronic infection are experiencing.

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It was an awesome conference! Had some great conversations with some of the researchers and speakers. It was also a very emotional and bonding experience. My husband got to go with me and I think one of the best things he brought home was a validation that our daughter does indeed have lyme. There was never any doubt from me but I think he has always held back some reservations until after the Lyme presentation. Not anymore. It was good for him to hear some of the things he has always heard from me also come from other Mom's and from the speakers. I am so glad we went.

 

Dedee

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Thank you, I have sent this along to our PANDAS-friendly but unable to treat (Canadian practice) pediatric psychologist.

we believe myself and my son have bartonella, but he is not handling any treatments at all, makes his rages psychotic, just single drop of an herb makes him crazy, wondering if you could share your LLMD with me and if anyone has heard of someone going psychotic on the slightest bug killer?

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Thank you, I have sent this along to our PANDAS-friendly but unable to treat (Canadian practice) pediatric psychologist.

we believe myself and my son have bartonella, but he is not handling any treatments at all, makes his rages psychotic, just single drop of an herb makes him crazy, wondering if you could share your LLMD with me and if anyone has heard of someone going psychotic on the slightest bug killer?

 

 

Yes, bartonella treatment can cause extreme raging herxes and did for us until we managed to get her bacterial load down. Our daughter is still herxing with changes in her herbal protocols, but they consist only of minor bone pain now.

 

If you post a new topic requesting an LLMD in your area someone will get back to you.

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I am so glad I went. I reconnected with Dedee and her husband, whom I had previously met in Indianapolis at a parents meeting. She is the nicest southern lady you could ever meet. We had ourselves some good laughs. Meeting parents was the highlight. Dedee has your head done blowed up this morning?

Edited by nicklemama
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Awe shucks girl......we did have us some good times didn't we. I have to say, I felt very connected to so many people there. It was a wonderful experience on so many levels. Can't wait for the next one. Thinking about leaving the husband at home next time. I think he was a little overwhelmed with all the estrogen. Still, it was good for him to hear all the information.

 

Think there is another conference in Atlanta in Feb. Going to start saving my pennies for that one.

 

Dedee

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