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wornoutmom

Epstein Barr Virus

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I didn't want to take this further on Melanie's thread - she just needs all the direct support we can give her. But I'm hoping to find out what any one knows about EBV beyond the regular mono infection. My son tested pos. for EBV antibodies in Dec. Our ped. doc ran this as he had been experiencing abnormal fatigue. He never had mono symptoms (swollen glands, sore throat, fever) that we can pinpoint, and the infection was not current. But he slept ALOT in August and that's when anxiety and obsessions, memory loss and rages started up again. I have heard this virus sticks around forever - literally. And if antibodies are reacting to it the same way they do to strep, wouldn't that make the PANDAS/PITAND chronic? We are working with Dr T, but he has not talked alot about this - only searching for other, additional "triggers". Has anyone else had conversations with the docs about this? Buster? Know anything about this??

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One connection I have heard of recently, talking with my doctor and reading book, would be lyme. Apparently those with lyme can have various other infections beyond the ones typically considered "lyme coinfections". Some of these are strep, mycoplasma pneumonia, and there is quite a list of viruses, and Epstein Barr is high on that virus list. There could be other connections of course, just mentioning the one that comes to my mind as I read the question, and my mind is very much on lyme these days as I continue to research my own condition here. If the EBV is hard to get rid of, perhaps it could simply be the autoimmunity triggers that some people get with strep.

 

Michael

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My daughter, Allison, then 4 1/2 had EBV diagnosis approx. 5 months into her battle with PANDAS. Just an important note to parents-if you suspect this, be sure you doctor orders the EBV panel bloodwork to be done. Our pediatrician suspected the EBV and ran the "quick" test once which was negative. Then the following day ordered more lab work doing both the "quick" test and the more sensitive panel (which took several days to get results) and sure enough, she had EBV. Interestingly enough, I am on the board searching if underlying EBV, which truly nevers goes away, can cause hives. My daughter has been free of her PANDAS for nearly a year but there has been a chronic strep outbreak in her classroom for the last several weeks. She's been getting some odd symptoms like random fever, large hives on her torso, face and especially extremeties, bloody noses. Wondering if this could be her body's reaction to strep or EBV, although I saw none of these symptoms before.

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If you have EBV and take amoxicillin or Augmentin, it causes hives. Is your daughter on any abx now? Prior to the hives appearing?

Colleen

 

No ABX for nearly 9 months for anything...But here we are 12 hours after the last onset and these huge welt-like hives are back. The doctor did not feel it was warranted to test for anything yet...he says if they persist through the weekend he'll order tests on Monday. Wondering if I should have pushed for testing today!

 

Thanks Colleen, I remember you were extremely helpful to me when I first came on the board. I appreciate your input.

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Hi - during our dd's 1st recognised episode she had an amox rash that we've been told shows a co-infection with EBV. We got subsequently tested for allergy to make sure and she was fine, so it was the amox reaction.

 

We got tested for EBV a couple of weeks ago but nothing showed.. but for us nothing ever does. According to her tests she's never had a thing! The only test that's ever come back elevated is the Cunningham ones. I'd think I was crazy if it weren't for that test!!

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I didn't want to take this further on Melanie's thread - she just needs all the direct support we can give her. But I'm hoping to find out what any one knows about EBV beyond the regular mono infection. My son tested pos. for EBV antibodies in Dec. Our ped. doc ran this as he had been experiencing abnormal fatigue. He never had mono symptoms (swollen glands, sore throat, fever) that we can pinpoint, and the infection was not current. But he slept ALOT in August and that's when anxiety and obsessions, memory loss and rages started up again. I have heard this virus sticks around forever - literally. And if antibodies are reacting to it the same way they do to strep, wouldn't that make the PANDAS/PITAND chronic? We are working with Dr T, but he has not talked alot about this - only searching for other, additional "triggers". Has anyone else had conversations with the docs about this? Buster? Know anything about this??

Don't really know anything about the connection between PANDAS and EBV but our DS4 has tested positive on this his 2nd episode of PANDAS. It seems to have made him exceptionally tired and we had other odd neuro symptoms like being unable to walk due to increased muscle tone in his legs that the docs put down to EBV, and his immune system having an unusual reaction to it. I'd love to know more about the connection too.

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I didn't want to take this further on Melanie's thread - she just needs all the direct support we can give her. But I'm hoping to find out what any one knows about EBV beyond the regular mono infection. My son tested pos. for EBV antibodies in Dec. Our ped. doc ran this as he had been experiencing abnormal fatigue. He never had mono symptoms (swollen glands, sore throat, fever) that we can pinpoint, and the infection was not current. But he slept ALOT in August and that's when anxiety and obsessions, memory loss and rages started up again. I have heard this virus sticks around forever - literally. And if antibodies are reacting to it the same way they do to strep, wouldn't that make the PANDAS/PITAND chronic? We are working with Dr T, but he has not talked alot about this - only searching for other, additional "triggers". Has anyone else had conversations with the docs about this? Buster? Know anything about this??

 

You should have your child evaluated by a lyme literate doctor so you don't miss the chance to treat this as soon as possible if it is lyme. A PANDAS doctor is not the doctor to evaluate a child for lyme unless that doctor is also an ilads-trained expert on tick borne disease. Lyme patients often have lots of infections like EBV and Mycoplasma just as Michael Tampa posted.

Lyme Mom

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when i just replied on my other thread that my sons ebv came back neg.....that was about 10-14 into biaxin...would that make a difference?

..that wasn't a full ebv panel...just like the western blot wasn't igenex or a full panel..

 

son still having hives...however he said both hands were hot earlier...

and he fell at school on fri...that night we ices wrist and gave ibf.....next day ok..later hand swelled after soccer and went to make sure hand wasn't broken...as we were there the inside of his foot hurt so we checked that too..all is ok

today...left side hurts ...i was relating that to fall...but now he side joints on his right side are starting to hurt....is that an allergic reaction to the AUG

or could it be a co- of lyme or ebv...

 

i'm just left messages all over for doc t..hopeing he'll get back to us early tomorrow and give us azith....

I don't want to stop or lapse.....as so friday and sat...thing were about 50% better....a marked difference once we introduced the AUG

we are about 24 days post burst and doc k said that could take 4 weeks?????

i think it's the aug based on my prior experiences with abx...but i could be wrong...it's been a year since onset...and like dut...if the myco p didnt'come up it would all the

physical
no pun intended..evidence i would have.....

i hope the azith will work as good this time!!!!!

 

of course i want him fully recoverd but if i could get him to 70-80 that would so livable.....understand i have perscripton for cholinde i never filled

I JUST KNEW...that was the wrong avenue...and if i went there...and much longer would it take with the masking and which drug is doing what...and if that didn't work, trying the next drug, the next....and the time and the waiting...when i knew it was some infection...

IT MIGHT NOT BE MYCO P.....i still wonder if it's underlying strep....not showing up on any test(just like lyme or ebv)...or a combination ....or i don't know

 

I'm just so excited my boy is doing so much better...he still flared at the b-day party and videos ..just like sammy had his triggers....but it's been a year and it was getting worse(very bad) and i don't want to loose ground

 

AND if i haven't said it .......THanks to everyone here......OMG......thank you......

sorry about the tangent

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My son's first huge PANDAS outburst was in fall 2007, and a few weeks after that he did test positive for EBV. Hmmmm, very interesting that you brought that up.

Also to those who were talking about hives. My 16 yr. old daughter (no PANDAS) had mono when she was 10. She had hives 2-3 times a day EVERY day for 5 years. She now has dermagraphism, which is harmless and actually quite entertaining. Its where you can 'write' on your skin with something not terribly sharp like a stylist, and in a few minutes it raises into whelps in that pattern.

So yeah, EBV can be one of those nasty little bugs like strep!

I think I'm becoming a germaphobe as we speak!

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My son's first huge PANDAS outburst was in fall 2007, and a few weeks after that he did test positive for EBV. Hmmmm, very interesting that you brought that up.

Also to those who were talking about hives. My 16 yr. old daughter (no PANDAS) had mono when she was 10. She had hives 2-3 times a day EVERY day for 5 years. She now has dermagraphism, which is harmless and actually quite entertaining. Its where you can 'write' on your skin with something not terribly sharp like a stylist, and in a few minutes it raises into whelps in that pattern.

So yeah, EBV can be one of those nasty little bugs like strep!

I think I'm becoming a germaphobe as we speak!

 

@BubbasMom - my ds 11 PANDAS has dermatographic skin as well! The doctors think it is the coolest thing, they always show the interns when we are there.

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    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


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