1. < Infectious Diseases

Treatment for chronic Epstein-Barr virus (EBV)

Posted by cummings3 @cummings3, Jan 23, 2017

My son has been suffering with Epstein-Barr virus (EBV) for over a year. I have taken him to an immunologist and infectious disease doctor with no answers. He is always tired and never feels well. He has relapsed with Mono twice in the last 10 months.

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petuniamom567 | @petuniamom567 | Mar 5, 2022

How do I find the Connect ME/CFS discussion group. Won't appear in my search box. Thanks for the help.

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1 reply
bt123 | @bt123 | May 16, 2022
In reply to @seehawkeye "It’s been a while since I posted but I thought it might be helpful to give..." + (show)
@seehawkeye

It’s been a while since I posted but I thought it might be helpful to give you an update. If you recall, I mentioned I had been tested many times over the past few years for Epstein Barr. The blood tests were always antibody tests. My results were off the chart and based on the results, I was categorized as having Chronic Epstein Barr. I sent these results to one of the top Epstein Barr specialists and I received a response telling me, with respect to the Epstein Barr, I should get a viral load test done. Well, the results came back with a normal reading. I still need to review the results with my immunologist, but I take this as very good news on the virus front. The important point here is that if you have high antibody readings (separate from Igm, which mine has always been low), you should ask your doctor for an EBV viral load test. I hope everyone is otherwise doing well.

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Who is this top specialist? Your help is appreciated!

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1 reply
kefnb | @kefnb | Aug 1, 2022

I sympathize with your son. I came down with mono twice approximately eight months apart when I was 28 years old when I was u dear tremendous stress.
I tried every possible combination of natural supplements, ate organic etc…
Here’s what finally helped me
Vitamin B12 injections It took four days to get energy, but fatigue came back in three days. I now take B12 injections on Monday, Wednesday and Friday. I order methylcobalamin from Germany
Google B12 injections , good responders CFS Check out British Pernicious Anemia Society for ways to get your supply
I use an insulin syringe to inject into fatty tissue. I don’t inject into the muscle. There’s enough proof that subcutaneous injections are as efficacious as intramuscular, far less painful and much safer for self injections
I might add that B12 injections are over-the-counter in many countries including Canada, Germany and many South American countries. In the US most docs prescribe cyanocobalamin ( not great for frequent injections), the WHO recommends hydroxocobalamin (I’ve tried, but find it stings too much ) and methylcobalamin is what the “good responders” took in the study I read on B12 and CFS

I have two SNPS on the MTHFR gene things improved more when I started taking methyl folate daily.
I saw Dr Skip Pridgen in Alabama and found a doctor here in SC who is overseeing and prescribing two prescriptions which are killing off the virus in my gut. I was diagnosed with irritable bowel syndrome , had a problem with constipation, eventually had a ruptured diverticulii -Pridgen is a GI Surgeon who figured out that many of his patients had a herpes virus (EBV is one) living in the gut. Well, I think he’s right. I’ve been on the meds for about a month and my gut issues are much, much better!
I’m still taking the B12, methyl folate, but utilization of B12 happens in the digestive system and it may very well be that the EBV virus is what caused me to have low B12 when not taking an oral supplement and elevated Mean Corpuscular Volume even with an oral supplement and a lab value of over 2000. This amounts to a functional B12 deficiency.
I’m hoping that with Pridgen’s Protocol my gut will heal and I will no longer need the B12 injections-or at least not as frequently.
I’m just trying to point people in the direction that has made a dramatic difference in my life.
Even without a low blood level of B12 you can have a functional B12 deficiency and there are tests that can reveal it. I never had them done. A friend gave me a B13 shot, I felt better and started a quest to get a steady supply. Testing for functional B12 deficiency can’t be done while on injections. You would have to stop for at least a month to prove it-I have been unwilling to”go back there” since I’ve regained my life after having been robbed of it for decades.
Good luck to all my fellow CFS Sufferers and God Bless

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tricia13 | @tricia13 | Aug 31, 2022

Hello,
I was diagnosed with Epstein Barr Virus 11 years ago. I was treated with high dose IV of Vitamin C and UBI (Ultraviolet Blood Irradiation. My virus became dormant. Than, last year I got COVID-19 - a bad case and it triggered my Epstein Barr Virus and my levels are high - 600. Has anyone else experienced this? Also, looking to see how others have gotten their virus dormant. Mine is being more stubborn this time. Thanks for any articles, research or advice.

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prett1962 | @prett1962 | Sep 27, 2022
In reply to @bt123 "Who is this top specialist? Your help is appreciated!" + (show)
@bt123

Who is this top specialist? Your help is appreciated!

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Yes please!! Let us know who the dr is!! Thank you

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soap | @soap | Oct 12, 2022
In reply to @halberryo "Has any one had any success supplimenting L-lysine to suppress epstein barr? I know they use..." + (show)
@halberryo

Has any one had any success supplimenting L-lysine to suppress epstein barr? I know they use it to treat other viruses of the herpies family.

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L-lysine worked for my Epstein-barr virus reactivation after having Covid. I had low grade fever and crushing fatigue for 2 months after recovering from Covid. Every day my temp would be anywhere from 99.0 to 99.8. My normal temp is around 97.5, so it was awful. Vit C helped alot and also NAC, multivitamin, quercitin, CoQ10, B12. But it wasn't until I started taking L-lysine that my low grade fever and fatigue stopped. I'm back to work, have my normal energy, and my temp down to 97s again. I won't start exercising for a while. I want to take it slowly.

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2 replies
azoccola | @azoccola | Nov 15, 2022
In reply to @jbbricker65 "I've been struggling with EBV for about three years now. I've been seeing a Naturopath for..." + (show)
@jbbricker65

I've been struggling with EBV for about three years now. I've been seeing a Naturopath for about the last two years, and have been taking a variety of things over the years to try to address the underlying symptoms and bring some healing, and have gone through blood, stool, and urine tests. I wonder though if I'm in the chronic category and there may not being any solid relief.
Here's what I'm taking over-the-counter: Vitamin D, Zinc, turmeric.
Here's what I'm taking as directed by my Naturopath: ImmPower ER, Alli-Cinn, BCQ, Mitochondrial NRG, DHEA, Biofilm Phase-2 Advanced, Monolaurin, N-Acetyl-L-Cysteine, Liver Support.
There are days when I'm feeling great (albeit rarely) and at least I'm not lying on the couch Friday evening thru Sunday just to recover and prep for the work week. I've ceased trying to look for a magic-bullet solution, but I would sure like to find something (if possible) to erase the sudden fatigue and brain-fog.

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also wondering how you can determine whether you are "chronic" or not

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azoccola | @azoccola | Nov 15, 2022
In reply to @dquick "My EBV nuclear antigen ab,IgG is >600.0 U/mL which seems high based on positive is >21.9..." + (show)
@dquick

My EBV nuclear antigen ab,IgG is >600.0 U/mL which seems high based on positive is >21.9 but my doctors say it’s nothing. Been on disability almost 3 years for severe fatigue, legs tremors and weakness. Still no answers. Anyone higher than >600.0 U/mL?

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I am this high and my VCA IGG is over 750!
did you find any answers?

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chistiania | @chistiania | Nov 16, 2022
In reply to @nataliem "Yes, there are huge amounts of information, and i admit that I have never read through..." + (show)
@nataliem

Yes, there are huge amounts of information, and i admit that I have never read through all thirty-something pages. It's just daunting. I was exercising and it was helping me, but suddenly the fatigue came back so heavy that any exercise at all made me fold like a house of cards. I can't understand it. I need to start over and just do a little bit and try to build back to where I was. Thank you for re-posting your supplements. I have tried most of them, but I will add the others. I have noticed that any stress at all sends me back to square one, so possibly there is a large mental component to this illness. Has anyone else noticed this?

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Hi, nataliem! You posted this over 2 years ago. I hope you are better now. But, yes. I have noticed it too. I do a little better for a couple of months and then if I have a little too much stress or worries or sorrows or poor sleep or all of this, I get terribly sick again (and it lasts for months).

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1 reply
chistiania | @chistiania | Nov 16, 2022
In reply to @soap "L-lysine worked for my Epstein-barr virus reactivation after having Covid. I had low grade fever and..." + (show)
@soap

L-lysine worked for my Epstein-barr virus reactivation after having Covid. I had low grade fever and crushing fatigue for 2 months after recovering from Covid. Every day my temp would be anywhere from 99.0 to 99.8. My normal temp is around 97.5, so it was awful. Vit C helped alot and also NAC, multivitamin, quercitin, CoQ10, B12. But it wasn't until I started taking L-lysine that my low grade fever and fatigue stopped. I'm back to work, have my normal energy, and my temp down to 97s again. I won't start exercising for a while. I want to take it slowly.

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Hello, soap. L-Lysine, what is that and can you get it over the counter? (I have CFS and anything that could give me a little energy would be such a blessing.)

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