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I have noticed a few of you are using antivirals. Our ds Dr recommended amantadine but we have not tried it yet. Can you tell me if you are seeing success with ocd symptoms, and which antiviral you are using? Have any of you used amantadine? He is on 500 mg biaxin daily.


Thanks! Kathy

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Have not tried amantadine.


Ds has been on Valtrex in the past for several months but did not have any improvement per bloodwork. He is now on his second try with Valcyte (heavy hitter). Last year he was on it for 4-5 months and when we quit, he had his first 6 weeks of 'feeling better' then in the prior 2 yrs. He had several major disruptions to his body after that time (concussion etc.) and had a huge PANS flair-up. So that put us back at his previous, not feeling so well, baseline.


Now that he is on GcMAF, which gets the immune system working again, he is having higher inflammation than usual. His OCD/intrusive thoughts went thru the roof (more than any other time in the last 3 yrs.) along with his other flu-like symptoms. So it appears the inflammation in the body definitely has a connection to the OCD symptoms.


His dr. is putting him on a supplement called 'Sage Memories' to help with the brain inflammation along with taking fish oil.

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I've been on valtrex for 2.5 months but had to stop because of extreme side effects. Since sunday I have not been able to eat and have had terrible nausea, diarrhea, and puking. I've never felt so sick in all my life and I think it is because of the valtrex, however I am overly sensitive to all medications.


Did not notice any improvement in anything, in fact my ocd is worse. Sorry to say something negative but this is what happened and I still can't eat.

I was taking it for coxsackie A and B.


For some reason patients with CFS have major reactions to medications so this probably won't happen to everyone.

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