Is chronic reactivated EBV different from chronic active EBV?

Posted by memecat28 @memecat28, Feb 7, 2018

I was just told I tested positive for all Epstein Barr Virus tests, except for the one that says you were recently infected. I was told I have Chronic Reactivated Epstein Barr Virus, and that I would be referred to an infectious disease doc. I started to research and everything keeps coming up with Chronic Active Epstein Barr, which seems to be a rare form and serious. Are these two forms different?

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@mikla

Had some site problems where the “less than” sign caused some issues... anyway...

Just got my test back:

IgM - Negative (less than 36)
EA IgG - Positive (28.7)
VCA IgG - Positive (308)
EBNA IgG - Positive (169)

The lab actually called me (on a Saturday) as an “alert” popped up on their system indicating it they needed to alert me immediately and recommended I see a doctor ASAP. They offered to call them directly and fax a copy of the results. The numbers are a little worse than a year ago. Not a single doctor would agree I had a reactivation, including my hematologist so I ordered the test myself on the Internet.

I have the typical symptoms including fatigue/tiredness, swollen lymph nodes, feverish, joint pain and headaches. Been having these for over a year now.

Got a call into my PCP and will follow up tomorrow. I also sent Dr Cohen an email at the NIH asking for advice and steps I might take.

Guess we we will see what happens. Just another thing to add to the list of my chronic cervical pain and constant PVCs. I’ve already had, and fought off, prostate cancer. But I refuse to feel bad as long as I wake up every morning.

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hello-just wondering if you ever found clarity of what was going on? My numbers are 600+ and 750 + with no active infection.

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I keep reading about anti-viral meds yet I've never seen an MD who would prescribe one except for any of the Acyclovir family (Valacyclovir, Valtrex, etc). Acyclovir helps with shingles and the Herpes Simplex 1 &. 2, but does nothing for CAEBV. I was purposely given the virus which was reactivated 9/2019. I started to get sick 4-6 weeks later and was sick initially for at least 6 months. I had a reprieve from it for maybe 3 months before it flared again. Each cycle of the virus lasts longer and the breaks from it get shorter. I now have it on a constant basis with no breaks. I can hardly do much of anything except continue to research this on the internet. I'm talking with an MD soon about SOT therapy which is supposed to stop the virus from replicating. It's very expensive ($3,250) but will be worth it if it works. I know that it's a DNA double strand virus that attacks the B,T, and NK cells of the body. Otherwise, I can feel the energy just draining from my body and I know where I will end up = dead. TCM talks of the Chi (energy) leaving the body as someone dies. That feels like where I am now. I'm so sad and just not ready yet. I still have a few reasons to be here. If anyone knows of SOT or anti-virals, please share soon. Thanks and blessing to all of us who suffer this dread virus.

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I know it sounds weird but wheat grass shots have helped my system. My chronic EBV doesn't get me hospital stays, just low grade temps, and narcolepsy like symptoms.

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I felt better with 1g 3x daily of valacyclovir for 9 months when my EBV Nuclear EBNA Igg dropped below 250 (was near 600). I was great for about a year and then the symptoms started creeping back. Since then, I'm taking 1g 1x daily and doing well.

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@christinemorse

Sounds exactly like me. I have an awesome PCP who listens and acts. Symptoms began before April but then intensified so I knew something serious was wrong. He ran labs, then referred my to a rheumatologist and then to a Oncology/hematologist in the department I actually work in! I had horrible unexplained bruising all over my body, they just appeared. Diagnosis: Chronic Reactivated EPV. I would start with finding a good PCP. If I didn’t have a good Primary Care Doc I would likely have a mental breakdown as well. He told me today that this illness could last up to a year or become Chronic Fatigue Syndrome which lasts forever. I hope to hear more from you as your symptoms seem so similar and I’d like to hear how you’re managing. Blesssings

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I was wondering if you know of any medication protocols for reactivated EBV post covid? My EBV values are really high, but not sure what to do about it? Trying to find a forum post that maybe has some ideas to take to our doctor to ask for to help. Thanks

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I do not know if this is allowed here, and I am not a medical doctor nor a healthcare provider but there is good alternative help out there to recover. Always check with your doctor about adding anything so it does not interfere with other conditions or medications.

Monolaurin is an excellent help to recover from EBV. I can not stress this enough. I have a favorite brand that comes in little pellets (check ingredients are right for right) Do NOT follow dosage advice, start with one pellet and build ever so slowly as you feel comfortable (back down if you feel any discomfort). You should see progress very slowly.

Elderberry and lemon balm are good tinctures for EBV.

Other general suplemebts and vitamins will help you rebuild (vit D might be very helpful; if testing fir vit D ask for level in cells not circulating but you can add some on grey days or what’s not)
The usual recommendations apply about food, supporting your body to move things around etc… there are plenty of unharmful info around to help you (I say unharmful because it is just about lifestyle and not adding anything. Often it’s about taking something out or changing your habits or learning to take care of yourself). The trend over the year has been to take care of the gut and even though it seems unrelated, taking good care of your GIT will help (actually I just learnt EBV is involved in that area). There is a lot of very good info out there (I do not subscribe to anything restrictive and weirdly diet can be quite personal in what makes you feel better).

Do not get scared of chronic fatigue. If your mono is uncomplicated, you will recover if you invest in your health. Which is difficult with life in the way. But I didn’t and I regret it.

Mostly, you must avoid stress. And when I say avoid: I know you can’t. So by avoid i mean you need to learn how not to let it take a hold of you; you must take care of your central nervous system. There is s lot out there for this; between vagal nerve exercises to breathing exercises to yoga nidra to taking time to enjoy nature. Do not run on empty or adrenaline or it will come back.

You can recover from this. Mostly Monolaurin is super helpful.

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@acapulcoheart

I was diagnosed in May 17 with EBV Mono. Dr. said maybe 6 months and i am still experiencing fatigue. I am 56 yrs old . It has changed me completely, im always tired so i try to plan very little anymore. My body is in constant pain anymore and I think it is due to Mono. Every muscle aches on me besides the arthiritis in hands feet etc. I prefer to sit still and not move , this was not me prior.
Who should i see , does this sound the same for someone else?

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Please see my post below for alternative options and support. There is a wealth of (reasonable) information out there about improving. Always talk to your doctor before adding anything and always start slowly if you add a supplement.
Lauricidin is an excellent antiviral to start with.

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@kenforce

I felt better with 1g 3x daily of valacyclovir for 9 months when my EBV Nuclear EBNA Igg dropped below 250 (was near 600). I was great for about a year and then the symptoms started creeping back. Since then, I'm taking 1g 1x daily and doing well.

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Monolaurin/lauricidin
See my post below

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@squeak19

I keep reading about anti-viral meds yet I've never seen an MD who would prescribe one except for any of the Acyclovir family (Valacyclovir, Valtrex, etc). Acyclovir helps with shingles and the Herpes Simplex 1 &. 2, but does nothing for CAEBV. I was purposely given the virus which was reactivated 9/2019. I started to get sick 4-6 weeks later and was sick initially for at least 6 months. I had a reprieve from it for maybe 3 months before it flared again. Each cycle of the virus lasts longer and the breaks from it get shorter. I now have it on a constant basis with no breaks. I can hardly do much of anything except continue to research this on the internet. I'm talking with an MD soon about SOT therapy which is supposed to stop the virus from replicating. It's very expensive ($3,250) but will be worth it if it works. I know that it's a DNA double strand virus that attacks the B,T, and NK cells of the body. Otherwise, I can feel the energy just draining from my body and I know where I will end up = dead. TCM talks of the Chi (energy) leaving the body as someone dies. That feels like where I am now. I'm so sad and just not ready yet. I still have a few reasons to be here. If anyone knows of SOT or anti-virals, please share soon. Thanks and blessing to all of us who suffer this dread virus.

Jump to this post

Monolaurin/lauricidin
Please see my post for alternative options which you may incorporate. Talk to your doctor before adding anything, check your are not allergic to any ingredient and always start at very low doses.
Vit D might also help.

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I have posted something already, but I’ll reiterate. Lauricidin/monolaurin is an excellent naturel antiviral and anti microbial in general and elderberry and lemon balm tinctures are quite efficacious.
Always start at a very dosage with any supplements I MEAN VERY LOW, like super low, verify you are not allergic to any ingredient and talk to your healthcare provider before adding anything.

I think alternative options if you look out there are actually super helpful to recover from this or at least improve so I’ll encourage anyone to do a little homework.

There is some research of vitamin D and EBV and overall vit D is a pretty good immune helper.

Do not be afraid to tackle this from all fronts. You take your meds great, but you must sort other areas of your life and really really take care of yourself. Sometimes we postpone investing in our health because we feel we can’t, but then we pay later. So really really slow down when you need to.

I can not stress enough the importance of diet. Especially with EBV being great at mimicry. Seal that gut. Take care of that tummy. And the importance of moving caca around: the real one, and the stuff circulating in your body. Really lowering the environmental load on your body as well.
Go at this virus from all sides.

I learnt too late.

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