Epstein Barr Virus

[wornoutmom]

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?

[Suzan]

I don't have any links but our ped. neuro also had us tested for herpes viruses (HSV and HHV6). He said that these were common viruses to cause neurological issues if they body does not clear them properly (my very layman's explination of what he said). I was looking at some labs last night for Lyme from Igenex last night and it indicated that HSV and EBV should be tested if certain bands were activated for Lyme to rule out that virus.

 

My dd was positive for HHV6 and she is on valtrex antiviral to try to clear it. I do see an improvement when she is on these meds.

 

What is the treatment though for EBV if positive? Do you know? Is there one?

 

I'm sure you will get much better info elsewhere but I wanted to share that.

 

Susan

[wornoutmom]

I don't really know what the treatment is. I know a huge percentage of adults will test positive for EBV past infection without ever having contracted a mono infection. And the treatment for that, at least when I had it as a teen, was to sleep... So I don't know what it means, but saw Dr T had posted about it in his "acronym" post and was hoping for more information! Has anyone had this conversation with any of the docs?

[momto2pandas]

I haven't seen anything published on this, but both I and other (adult) members of my family have had documented exacerbations associated with increases in EBV titers.

 

 

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?

[swim]

I was searching for another topic and found this post that I missed earlier. I am also very interested in EBV virus because I think that might have been a trigger for us.

 

Our younger son suddenly showed PANDAS symptoms at the end of Jan. We took him to the doc that is treating our older son for PANDAS and she ran tests for strep and EBV. EBV came back positive and strep was negative. We did 30 days of keflex at 1,000 mg/day. After a few days on antibiotics, PANDAS symptoms reduced greatly. Since EBV is a virus and antibiotics are not used to treat a virus, interesting that symptoms reduced. He has been off antibiotics for just over a week now and no PANDAS symptoms. I didn't want to post anything about this until we had gone at least a week with no antibiotics. It would appear EBV was the trigger for him. We have an appointment next week to decide if we only treat with antibiotics when exposed to something or if we do long term low dose for prevention.

 

I recently got a copy of the full medical file for our older PANDAS son and it appears EBV was also the trigger for him. Our pediatrician says EBV seems to be the trigger for our kids.

[Chemar]

just wanted to mention that when my son tested +ve for EBV a number of years ago, in addition to homeopathic remedies, we were also advised to use the amino acid L-lysine as apparently it helps keep viruses dormant ie inhibits their reproductive cycle

 

I know people with herpes/shingles also use it successfully

 

other natural antimicrobials that seem to have anti-viral properties include monolaurin (lauric acid) and olive leaf extract

[sf_mom]

Recently show Dr. Oz cover this on his show. Apparently, 85% of the population will test positive for EBV and for many it will never present a problem. BUT, for some its a nightmare. Those that it is a problem seem to have had a series of immune challenges.

 

So, is it another trigger, co-infection, etc?

[Dr_Rosario_Trifiletti]

Recently show Dr. Oz cover this on his show. Apparently, 85% of the population will test positive for EBV and for many it will never present a problem. BUT, for some its a nightmare. Those that it is a problem seem to have had a series of immune challenges.

 

So, is it another trigger, co-infection, etc?

 

This is based on my clinical experience, and not published data. Some of the very worse OCD exacerbations I have ever seen have have followed EBV infection. I've spent a lot less time thinking about viral triggers for PANDAS-like illness, largely because there is no effective treatment. About 50% of children have positive EBV tests by age 6.

 

Dr. T

[dcmom]

My suggestion, based on my daughter's experience with the flu, is that you let the virus run it's course. (hopefully the body is strong enough to fight it off) Once the child is over the virus, I would consider a steroid burst immediately to help with the pandas symptoms. Maybe if you get it soon enough, it is enough to damp down the immune system from producing the autoantibodies. I would also increase, or add daily antibiotics at that point to help with immune modulation and reduced immunity.

 

EBV must be tough, because I know in a healthy child it takes something like 3 weeks. So- I think we all need to know if our children are immune deficient.

[Chemar]

I've spent a lot less time thinking about viral triggers for PANDAS-like illness, largely because there is no effective treatment.

 

Dr. T

 

but there is!

 

I have posted over and over of the success we have had with natural antimicrobials that have antiviral properties as well as the L-lysine and some homeopathic remedies. Also the acupuncture and biofeedback to target the infection(s) (*not* neurofeedback)

 

I do think my son is proof positive that "the microbe is nothing, the terrain is everything" as Dr Pasteur is reported to have said on his deathbed, acknowledging his arch rival on microbial research,Dr Beachamp, was right

 

We have seen my son go from very very severe TS/OCD to very mild symptoms and now even have his Crohn's disease (possibly caused by mycoplasma) under control with natural and non-invasive treatments. We started this journey when he was a preteen and he is now 20yo and has been doing great for years! My son was determined PANDAS negative but does have the PITAND component likely with his genetic TS

 

I have also been reading of promising studies being done with lauric acid/monolaurin and HIV+ patients

 

I know many conventional doctors refer to using alternative/natural treatments as "quackery" and discount the anecdotal evidence for their effectiveness.....but for me the proof is on my son!! as in the other parents reports of success using these methods

 

remember that just as the PANDAS community faces uphill battles in convincing naysayers that it is real...we who advocate natural treatments for neurological disorders have met with this resistance too!

[Fixit]

I've spent a lot less time thinking about viral triggers for PANDAS-like illness, largely because there is no effective treatment.

 

Dr. T

 

but there is!

 

I have posted over and over of the success we have had with natural antimicrobials that have antiviral properties as well as the L-lysine and some homeopathic remedies. Also the acupuncture and biofeedback to target the infection(s) (*not* neurofeedback)

 

I do think my son is proof positive that "the microbe is nothing, the terrain is everything" as Dr Pasteur is reported to have said on his deathbed, acknowledging his arch rival on microbial research,Dr Beachamp, was right

 

We have seen my son go from very very severe TS/OCD to very mild symptoms and now even have his Crohn's disease (possibly caused by mycoplasma) under control with natural and non-invasive treatments. We started this journey when he was a preteen and he is now 20yo and has been doing great for years! My son was determined PANDAS negative but does have the PITAND component likely with his genetic TS

 

I have also been reading of promising studies being done with lauric acid/monolaurin and HIV+ patients

 

I know many conventional doctors refer to using alternative/natural treatments as "quackery" and discount the anecdotal evidence for their effectiveness.....but for me the proof is on my son!! as in the other parents reports of success using these methods

 

remember that just as the PANDAS community faces uphill battles in convincing naysayers that it is real...we who advocate natural treatments for neurological disorders have met with this resistance too!

 

A very positive post...and sometimes i am guilty of dismissing, natural treatments .just like many dismiss pands and pits...

I guess ,too remember that alot of the drugs we use come from something natural till they are modified..... I just want the big guns to knock this out!!!

With that being said....a couple of friends of mine have been talking about coconut oil for their skin...they are cooking with it and putting it on topically.

There's a whole story about coconut oil getting a bad wrap and we should actually be using it in conjunction or as opposed to some oils.

Well i have rosceia... i don't do anything for other than staying out of the sun...

i've started putting it on my face the last couple of weeks and my skin hasn't looked this good in years(the same oil you cook with you put on your face,,and some put 1/2 tsp in tea or something) the bumplies/thickness feelings are gone and the redness is down!!!!!

[momto2pandas]

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?

[Chemar]

wornoutmom, also do remember when doing your research, that where PANDAS is the acronym specifically designed for strep induced autoimmune neuro issues, the term PITAND covers the other microbial infections that can bring about similar symptoms

 

PANDAS= Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus

 

PITAND = Paediatric Infection-triggered Autoimmune Neuropsychiatric Disorders

 

more background info on the terminology from dr K's website

http://www.webpediatrics.com/pandas.html

[GatsMom]

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

[momto2pandas]

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