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Slightly off topic, but thought maybe someone here might have an insight on this??? I just watched a clip on new discovery re: synapse connections and autism, and the VP of A-Speaks discussed a research study using one of these two antibiotics which appeared to rid the mice of "symptoms of autism"...and they used an ANTIBIOTIC!!! (I can't hear the video clearly enough to hear if it is Rifampcin or Rapamycin...

 

Has anyone used either of these with PANS?

 

Results?

 

Just wondering...thanks.

 

http://blog.theautismsite.com/SynapsePruning/?utm_source=social&utm_medium=autaware&utm_campaign=SynapsePruning&utm_term=20141106#swtWvwaVrEJ2PU1i.03

(here is the clip)

Edited by t_mom

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We were on rifampin earlier in our pans journey-- I forgot how long, it maybe was a two or three week course, along w clindamycin. Interestingly, the first week my son was on the rifampin, he did did beautifully, to the point that there appeared to be nothing ailing him at all. Week two he went down the tubes.

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Rifampin was used by our LLMD to treat DD's bartonella infection. It must always be used with another antibiotic, as resistance to rifampin monotherapy can happen quickly. DD was prescribed rifampin in combination with baixin and then plaquinel, azith, tindamax etc. for a period of approx. 1 year.

 

We did see improvement in cognitive ability, executive function and sensory processing disorder (so her main ASD symptoms) with bartonella treatment, although DD didn't progress to 99% (especially in the executive function category) until we treated babesia/protozoa as well.

Edited by rowingmom

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I think if Rifampin is 'working' for PANDAS/ PANS,

it's because it is either targeting imbedded strep, or,

Bartonella. Bartonella being a wicked infection, with very few options available to properly treat,

Rifampin being one (paired with another antibiotic).

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Rifampin has been a game changer for us. We have chronic strep - it was the first antibiotic to keep the strep at bay (prevent re-infection), and it reduced symptoms almost entirely. When we stopped a course of rifampin, my asked if we could go see the doctor - when we got there, he told him "when I was on the red medicine, Harvey was gone (what he calls his OCD), now that we're all out of the red medicine, Harvey is back. Could you give me more red medicine?" He was 4 years old at the time.

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