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Hello,

I was wondering if anyone has tried an antiviral during pandas treatment, and if so did it seem to work? My dd has very high Coxsackie titers and Dr. T suggested adding Acyclovir to her abx treatment. He said that in many cases when a child is on an antiviral the titers come down, especially when used for Coxsackie, even though it isn't clear if it's a current or past infection. I'm more wondering if there is a reduction in PANDAs symptoms along with the titer change. I don't want to add it just for the sake of decreasing the numbers, but if it means the virus can actually be causing some symptoms, I would consider it.

 

Thanks in advance for you input!

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My son was on Valtrex (and supplements) for several months for another virus that showed high on tests. Did not improve and ND believes in treating everything that shows up so the overall load on body is low so when an illness happens body can fight it better. She then gave us the choice to do Valcyte (big anti-viral that makes it so virus cannot replicate) or GCMAF. Decided on Valcyte. After about 4 months she took him off it. Son started to feel better after 2 Yrs. Then he caught chest infection, his PANS trigger, 2 months ago and has not made it back to that new better baseline. Dr. said he is testing healthy with muscle testing. Waiting on blood work to see if he is keeping those viral numbers down. If not next step is GCMAF.

 

So it seems that you may want to address the virus. Maybe not all viruses are created equally tho? Sons was HHV-6.

 

We have not been measuring titers just mostly how son is feeling so hopefully that approach will work for you.

Best wishes in healing.

 

Sorry about typos hard to type on phone. :)

Edited by JuliaFaith
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We are in the middle of trying acyclovir. So far it hasn't helped symptoms. My dd is also very high with cocksakie so I was willing to try. We will be changing next to another antibiotic cocktail. Even though it didn't necessarily work for her, I am happy to have tried it, to have ruled another infectious cause out. Anything that lessens the burden on her immune system is a plus in my book. We are still in crisis and trying to find anything that will improve her. Good luck to you

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Thanks to both of you for responding. Was wondering if either of you saw any side effects while your children were on their anti virals?

While my son was being treated for viruses, he was also being treated for lyme, babesia, mico, etc. So there were many mini flairs going on so not sure if the Valtrex was part of any of that. He did seem to feel worse on the Valcyte for several days a month. Sometimes for 3 days, some for more. Did have higher TGF-beta 1 (inflammatory marker) #'s during the treatment which dr. thought could be from anti-viral treatment.

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