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Epstein Barr Virus


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I couldn't get omega brites...am using omega 3 mood 1000 epa /150 dha...and i do a krill oil mid day ..do you think that is good??

 

Also thanks for giving me incentive to go the endo again....I love this guy is anyone is near Atlanta Ga...just got back..and he is so on board with everything i've said about pand/pits..out of the box guy...and he doesn't think anyone should use milk or ANY wheat.... rice/potatoe/tapioca

anyway he crosse out the high end on tsh level and said that yes per NIH info...need to drop high end from 4.25 to about 2.5

he feels a little goiter in DS....OMG ...jus thought of this ..he said its on his left side...would that be why he does, one are bandit tic with left arm..pulls shirt with left arm...flops left wrist or both????

 

And since i'm highjacking this thread....vocal screechy thing were almost gone as of yesterday..though 2 the other times he had a kkk, throat clear it lasted about a week and so did the second time......however, it jumped way up after school. Could it be because his filling fell out monday night, and yesterday afternoon we got it refilled,,he had gas and novicane...could it be from that!?!?!?!?! today is his 8th dose of 500mg L-carnitine(never used it before)...should i stop giving that as i heard you only use it for awhile....

 

or could this be part of the sawtooth thing... yesterday things seemed like maybe, could be, not sure, just hopefully, things were better....if at the start things were a 10, ramped to an 11 and yesterday i could maybe give an 8(but i am not sure about anything and doubt myself completely!!)

 

I would love the feed back!!!

 

 

 

 

Thanks for the tips on L-lysine. Any tips on whether one brand is better than another, and on how much you give to kids/adults? My kids are 36 pounds (ds3) and around 48 pounds (ds6).

 

Glad you like the omegabrites - I can't tell you how many times people have come back thanking me for that recommendation.

 

 

This is something I've started to wonder about again lately. As I mentioned in a previous post, I had documented issues associated with EBV infection 20 years ago or so. Now I'm getting sore throats, etc. every month and I've been assuming that it's strep or some other bacteria I'm not kicking, but I'm wondering if it's EBV coming back to haunt me. I was doing some research on IgG Subclass 3 deficiencies after I got my kids' results (and mine, which are also low but in the normal range for this). Apparently, there is evidence that EBV can cause such immunodeficiencies. IgG3 apparently deals a lot with viruses.

 

My kids haven't been tested for EBV. They've definitely had bacterial infections based on the green nose slime and (at least temporary) response to antibiotics (though this could just be their antiinflammatory effect), but with the persistent high lymphocytes even after antibiotic tx and with the IgG3 deficiency, I'm thinking that there could be something viral going on too.

 

From what I can see, that creates a very difficult boat to be in - virus creating an immunodeficiency that makes you unable to fight the virus or other infections. Then what do you do? Literature suggests some evidence for utility of IVIG.

 

I'm going to look at Chemar's suggestions.

 

 

I've read a couple of posts (including one from Dr T) mentioning EBV as a possible trigger for PANDAS, but can't find any good info on this. I am very interested in this as this is the one thing my son HAS tested positive for recently, though he never had mono. Does anyone have any links or info on this possible connection?

 

momto2,

 

I would definitely give a trial to L-lysine given what you wrote above! It gets some good press in the fibromyalgia world where EBV is prevalent. I always have it in my house and at the first sign of anything viral, I ramp it up. I have a 94 year old client who says as a child she and her siblings were made to take it all winter long.

 

btw, thanks a million for the lead on omegabrite! We started on 2/21 after a horrific backslide that forced us to give up Biaxin for myco p. Some days are still way less than optimal but he's tolerating the omegabrites (3 per day) well and I believe they are having a good effect as he's showing improvement and that was our only new addition until yesterday when we started Enhansa for more inflammation control.

 

Gat's mom

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  • 3 months later...

in May my daughter did a series of tests, after dr.Cunningham-test that showed positivity for PANDAS and very high levels of anti-D1.

IgG are positive for EBV

IgM are negative, indicating that the infection is not ongoing, but the thing that has surprised our immunologist is that although she is positive for EBV she is not positive for antibodies to EBV

She is very deficient in CD8 lymphocytes, which means that she is unable to react to viruses.

I mean, it is as if she is in a state of chronic EBV infection. Where is the virus?

EBV enters the body of all of us and take place in the lymphocytes DNA, . in conditions of immunodeficiency it become aggressive again.

My daughter did a cycle of 10 days of corticosteroids, with the improvements that you reported. it is possible that the suppression of the immune system by corticosteroids did well by giving her a pause, but at the same time may have left the field free for EBV: after the beneficial effect of corticosteroids in fact everything is getting worse, worse than before.

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Marilina:

 

I am a bit confused that your daughters IgG are positive for EBV but you say she is not positive for antibodies to EBV? I thought that the IgG is the test that shows the antibodies? I never thought about the steroids leaving the field free for EBV, but in thinking about it realize that ANY virus/bacteria dammpens the immune system and can leave the door open for the EBV to flare. Maybe this could explain my son's general chronic complaint of fatigue and malaise...Have you ever thought about flying to the US for IVIG? Did you ever talk with Dr T's colleague in Italy about PANDAS? Would your docs there be willing to consult with him or Dr T?\

 

 

in May my daughter did a series of tests, after dr.Cunningham-test that showed positivity for PANDAS and very high levels of anti-D1.

IgG are positive for EBV

IgM are negative, indicating that the infection is not ongoing, but the thing that has surprised our immunologist is that although she is positive for EBV she is not positive for antibodies to EBV

She is very deficient in CD8 lymphocytes, which means that she is unable to react to viruses.

I mean, it is as if she is in a state of chronic EBV infection. Where is the virus?

EBV enters the body of all of us and take place in the lymphocytes DNA, . in conditions of immunodeficiency it become aggressive again.

My daughter did a cycle of 10 days of corticosteroids, with the improvements that you reported. it is possible that the suppression of the immune system by corticosteroids did well by giving her a pause, but at the same time may have left the field free for EBV: after the beneficial effect of corticosteroids in fact everything is getting worse, worse than before.

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thank you wornoutmom

yes, we are thinking of coming to America, because here IVIG and PEX are impossible to do if not on the list of some rare diseases.

"be confused" is say little.

is practically impossible not to produce antibodies EBNA if you come in contact with EBV

 

she has the VCA IgG positive,but the only cases in which type EBNA antibodies are negative are two possibilities:

1) the person has not come in contact with the virus

2) the infection is under way, but then they should be positive IgM .

test results of my daughter does not fall under any scheme

 

I realized until now that she is in a condition with two contradicting factors:

1) she has an immune system hyper, because it produces too many antibodies against dopamine D1 receptors and is positive for PANDAS

2) her immune system is unable to react to viruses, it has very low CD8

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  • 2 weeks later...

my daughter is taking antiviral acicloviral since 2 days

the same night he started taking the antiviral she fell asleep and slept all night, the first calm night after 5 months of insomnia and OCD. a coincidence?:

second day of antiviral second night of peace, not to mention that during the day OCDs are decreased in intensity and frequency.

at this point what emerges is that she can't react to viruses.

particulary about EBV, her condition is immunedeficiency because in four years of exposure to the virus(2006), she did not produce antibodies against the nucleus, DNA-EBV virus.

what aciclovir is doing had not been done by corticosteroids, nor by antibiotics

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