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I find it curious that some people are getting good results with valcyclovir because my father has dementia/Alzheimer's. He had herpes zoster and was given valcyclovir (I think 1000 mg three times per day) when we took him to the hospital, and it had a marked effect on his mental status, the very next day mind you. His doctor was a little hesitant when we brought this up at his next followup appointment, but each and every one of us noted the improvement, and she prescribed him a maintenance dose of 1000 mg once daily. It really HAS helped with his mind, and this just makes it so clear to me that the doctors really DON'T know exactly what they're dealing with as regards mental illness.

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Yes! That is the dose my son takes and we gave it to my Father-In-Law and it knocked out "Alzheimer" symptoms too.

 

He had started acting just like my DS, smells bothered him, quick to irritate, confused, OCD about how I put food back in the refrigerator. We got him back quickly.

 

After talking to a MS Dr who attended a PANDAS conference I wondered if there were any similarities. Following a couple of MS blogs I learned that some people were able to get rid of using their canes for walking after taking Valcyclovir.

 

There is no coincidence Autism and Alzheimers have skyrocketed in the last 15 years. Toxins will effect the young and old first. The most vulnerable.

 

My frustration is the "Big University" hospital similar to our experience would not do blood work for my Father-in-Law. We found out 6 months later when his elderly and curious Internist followed my request. He had both HHV-6 and low levels of myco.

 

Thank God for Dr.'s who have a passion for healing!

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Our DD age 5 1/2 takes Acyclovior 200mg twice a day, and it has been much more helpful for her than antibiotics in treating her PANS. Some of her docs are upset she's on it, which I don't understand, but they see it as unproven and unnecessary. She has very elevated HHV-6 titers and a possible genetic deletion indicating she's prone to viruses like HHV, this drug has been soooo helpful.

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Our PANDAS DS gets it from an AUTISM immunologist. My older DS has chronic fatigue at 19. He is much improved on Valcyclovir and no longer looks pasty white. He gets it from his internist. Any titers over 4 fold should be addressed.

 

My oldest son got ADD at 20. His Dr. said titers don't mean anything even though his titers were 20x higher than normal! He gave him a year long prescription for a SSRI and no follow up! Needless to say we left him. With treatment cognition and behavior should improve and titers either drop back to zero or at least in normal range.

 

Our Pediatrician once said if a medicine doesn't have bad side effects and it may help it should be worth a try. He said there is still so much we don't understand. Wish I had seen him before we went to the hospital! It would of saved us the trauma of a psych ward. In 36 hours with Valcyclovir my PANDAS DS turned the corner.

 

Mamaluvsyou how do you know about the possible genetic deletion? Looks like we probably have that too.

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My son had high HHV when tested a year and a half ago. If I can get him Valcyclovir how soon should I be able to tell if it is working, or not working? I'm trying to come up with a game plan, and we have tried Augmentin with no success. Next I was looking at steroids or Zithromax, but maybe should see about the Valcyclovir first. Should he try it for a week, two, a month before moving on to the next thing? He is currently half way through CBT ERP and not really making any progress.

 

Ginger

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Our PANDAS DS gets it from an AUTISM immunologist. My older DS has chronic fatigue at 19. He is much improved on Valcyclovir and no longer looks pasty white. He gets it from his internist. Any titers over 4 fold should be addressed.

 

My oldest son got ADD at 20. His Dr. said titers don't mean anything even though his titers were 20x higher than normal! He gave him a year long prescription for a SSRI and no follow up! Needless to say we left him. With treatment cognition and behavior should improve and titers either drop back to zero or at least in normal range.

 

Our Pediatrician once said if a medicine doesn't have bad side effects and it may help it should be worth a try. He said there is still so much we don't understand. Wish I had seen him before we went to the hospital! It would of saved us the trauma of a psych ward. In 36 hours with Valcyclovir my PANDAS DS turned the corner.

 

Mamaluvsyou how do you know about the possible genetic deletion? Looks like we probably have that too.

We had some genetic testing done and it indicates our DD has only 1/2 of the DOCK8 gene. If a person is missing both halves they would be very very ill, no one is really sure what missing 1/2 does. However, DOCK8 is linked to NK cell production and those missing the entire gene are very susceptible to viruses like HHV-6. So it seems there must be a link.

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In regards to my father's Alzheimer's/dementia, we saw also immediate improvement with the valcyclovir. Of course he's not well, but he went from sleeping almost all day to being somewhat interactive, which for him is a great improvement.

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mamasluvyou, thanks for the info.

 

flmom, We did one month of diet, than slowly started Valacyclovir HCL at 1 gram for a week, than 2 pills, than 3/day. My DS was 11 and 1251lbs at the time. We didn't see die off with him but we did with my father-in-law who appeared more confused but than much improved. One step back two steps forward.

 

We were lucky and saw some improvement right away but his flare was horrific. Everyday he got better and became more rational. Because our Dr goes slow and one thing at a time, we didn't lose some serious compulsions till antibiotic was added a month later. The combo was truly what he needed.

 

The good news for evidence based medicine is his titers moved from 16x normal to 0 in 6 months. I think that is important since I had a Dr say titers don't mean anything. Our Dr. is older and in medical school he said they were taught treat anything 4x higher.

 

My middle child when age two got cold sores 4x a week and was put on a liquid form of Valacyclovir for 7 years. This was thru a large hospital and many tests. I am trying to get his records. Always wondered if he would of had Autism, since it was after his vaccination, and he is also my dyslexic son. I definitely wonder about that gene.

 

I will keep you in my prayers. Please keep me posted.

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3bmom, do you think asking for 2 or 3 weeks worth is a reasonable start to see if he would show any changes? What kinds of issues did your son show improvement with? Basically I'm looking for OCD related changes and mood.

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flmom,

 

Go for the 3 weeks if you can. Just like antibiotics you want a consistent level. We had improvement in OCD and compulsions/tics, along with the irritableness. My husband and I couldn't be in the same room with him....36 hours later sitting on sofa together watching tv. Later when we gave him antibiotics all OCD faded away. Wish you the same.

 

Mamaluvsyou, I don't get the deal with Valcyclovir. I had a two year old on it and side effects are low compared to psych drugs. I begged for it in the ER and the Dr refused but then again he wouldn't even do blood work. We had three infections!

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