Epstein Barr Nuclear AG AB IGG result of over 600

Posted by lsh @lsh, May 3, 2020

Hello, I am searching for information and also input because of my hideously high lab results for EBNA Nuclear AB IGG. My result was given as over 600. The range is less than 18 is negative. Over 22 is positive. To restate, my lab result is over 600.

I am 52. I did have mono at age 11. For at least four years I have complained on numerous times to my PCP of fatigue. We suspected thyroid but that has been treated and I still have suffered from bouts of fatigue, feeling like I was coming down with a bug, dizziness, etc for 3 or 4 days out of just about every month for the last eighteen months. I finally saw a naturopath who tested me for EBV.

I love my Naturopath, but I am wondering if I should be seeing a specialist because of this high lab result.
I am on a treatment plan of antiviral supplements, and immune supporting vitamins and supplements which she said will probably need to be taken for at least three months.

Has anyone else had numbers this high? I am having trouble finding much information on reactivated EBV.

Thank you!
Lisa

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

I am a 71 Y/O female who had written earlier of my EBV and COVID vaccine issues, along with COVID 8 months later. I too have been gone through the muscle pain to the point where I cannot walk and spasms to the point of despair. After I got the 2nd vaccine in March '21, I waited my 15 minutes and then walked out into a tunnel; I thought I was hallucinating and started staggering. I got to my car and laid there for an hour before to regain my brain function and then I drove home. when I got home I went directly to bed and woke up the next day, only getting up to the bathroom once. For the next 10 days all I did was sleep, and while I slept the entire time I found I lost my ability to walk more than to the toilet and back. I started to push myself to walk more and gain my strength but it only got worse.

I called my doctor and she had no idea what to do because the CDC & NIH had given them nothing to work with. We both tried to get in touch with the local state health office, and never got a call back until 3-months later. I also emailed and tried to call the CDC and NIH with no returned call. I logged into their portal to report my post vaccine symptoms. Someone did call me back only to confirm what I wrote and said they would get back to me. No call back.

Since I was still sleeping all the time and had no muscle strength (still went to the gym) I asked my doctor for an EBV test. She called back and let me know I had extremely high numbers, but that I was getting better and no longer contagious. That was good since I had been sleeping with my "paralyzed" husband in the same bed. Two weeks later I took the EBV test again and I was improving, but not out of the woods. I was still only able to walk short distances.

I then went to a neurologist that was recommended to me by another woman who was also affected by the vaccine and diagnosed with Gillian Barr. He basically told me it could take years before I totally recover and that there is not enough information to help treat us but he sent it into the CDC.

This is now exactly 2-years later and I am still staggering when walking and can only walk for no more than 1/4 mile before I go home, I have such brain fog that people have asked if I have looked to see if I have alzheimer's. I put my job on hold and quit volunteer positions because I am too skippy in my brain.

Now my digestive track has taken a hit and have so much pain. I have been taking and "alphabet soup" of ZMA, Mag, DHEA, L-Lysine, Quercetin, Olive Leaf extract, Oil of Oregano, Saw Palmetto, B-12, D-3 and a combination vitamin of A, Zinc & K, along with my acetaminophen for pain. At night I take Calm with melatonin. I did take CBD to sleep but I was too far into the dreams.

I am not a complainer and have always worked hard. At 71 I am still working because it costs me a lot to care for my paralyzed husband. I no longer have the stamina nor muscle strength to do much more than the basics, but I do walk, ride a bike, cook and clean, I am not ready for the funny farm.

I hope this helps others to know they are not alone and they are not making this stuff up. It seems like everyone wants to sweep these issues under the carpet, but this vaccine has had a bad effect on too many strong people and should never have been forced on us.

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@jlr0285

At what point do you get chronic EBV? I was diagnosed in early February after pushing for the test. She said people don’t get it twice. HA! This is round 3 for me. Anyway I have sore throat with white patches, brain fog and the crushing fatigue. I would love to hear your thoughts.

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Honestly, I have no idea. This is all new to me since I started talking to four different people I know with Long Covid symptoms, CFS/ME (lots of overlap with long covid) and/or chronic EBV. Chronic EBV is NOT recognized widely in the medical profession. There are very few specialists in the entire country. I think your provider is wrong and she just doesn't know anything about it!
I am diagnosing myself based on other's testimonials and online research. I have little hope of getting to see an EBV specialist. Luckily my symptoms are mild compared to what I am hearing and I am going the natural route with vitamins and supplements. Just L-lysine alone seems to be helping me. Currently I am taking 3x1000 mg a day and will taper if I continue feeling better.
I a SO sorry you can't seem to get help or relief of your symptoms. You might want to consider seeing a Functional Medicine doctor or a Naturopath. Neither of which insurance will cover.

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Hi Lisa, Your thread here has generated some very interesting discussion. I love DrBeen Medical Lectures, he is so good at explaining things, I will have to watch them all to see if I can learn something new about this dreaded disease. I say something new, because I have suffered with Chronic Active Epstein Barre for over 30 years. I discovered I had EBV after coming down with Guillian Barre Syndrome at 32, which paralyzed me for 3 months, and gave me a very long recovery of around two years. When trying to figure out what was wrong with me initially, the Urgent Care facility I went to said I had Mono, to go home and rest and do nothing. As my condition worsened, within a couple of days I was in the hospital with a diagnosis of GBS. They suspect it could have come from the EBV, but quite obviously my immune system was a wreck in order to allow it to get to that point. GBS and EBV are really autoimmune disorders. A few years after recovery from the GBS I discovered I now had Hypothyrodism, and I was very thankful it was not the GBS coming back!

I can tell you if you have the Chronic Form of EBV where it reactivates, that finding a good Dr. that knows and cares about treating you and testing you regularly to make sure your therapy is working is half the battle. The other half is keeping your immune system up through whatever means you can is the rest. Unfortunately, there is no cure and if you let your guard down, stop eating correctly, stop taking your supplements and meds, and it will flare up again. That is what has happened to me for 38 years. It is so easy when you are feeling well, to let your guard down and say I don't feel like swallowing another handful of vitamins and supplements today, I'll do it another day!! Don't do it! I always regret it when I do that. My titers ALL 4 of them are always well above the normal range on my test, and after COVID they were the highest they had ever been. I had a mild case of COVID because I was also following the FLCCC protocol for prevention when I contracted it, and was glad I was, or it would have been much worse. But of course, it sent me into another flare and recovery of a couple of months to get my energy back.

I will soon be 70 yrs old and I realize this is a battle I will always have to fight. BUT, if I take care of myself, eat properly, take the supplements and meds, and get the proper amount of sleep, I can maintain a good balance. My Dr. currently has me on the following meds. I don't know if this will help you or not, as every person's system is different. I have discovered that Leaky gut is part of my problem recently, because if your gut is not healthy you cannot absorb the nutrients your body needs to stay healthy. Anyway, here are the meds and supplements I am taking, I hope this helps. Valtrex 500 mg 1 xday, Low Dose Naltraxone 2 mg. 1 xday, D3 2000 mg day, K2 1 x day, Quercetin w/Bromelain 500 mg day, Zinc 50 mg day, Vit C 1000 mg day, Melatonin 2 mg. at bedtime, Magnesium 500 mg day, Alpha Lipoic Acid 600 mg day, SAM-E 1 x day, Turmeric, 1000 mg day, Move Free Joint Pain, 1 X day, Berberine XTS 500 mg day, Cinnapure Ultra 1 x day, CoQ10, and Omega 3 - 1 x day, B complex with Probiotics Blend, IBS Clear for Gut health 2 x day. A high-quality multivitamin daily. A lot of these supplements are to reduce inflammation, and pain. I have always had pain with this and even before I reached 60 felt more like I was 80. The joint pain is much better if I take the supplements. I also am on Thyroid meds each day and allergy meds which I did not list, so you can see from this list that most of what I take is for immune support.

Dr, Jesse Stoff wrote a book which I used when I initially started with the supplements because the Infectious Disease specialist had nothing to offer me 38 years ago. The name of it is Chronic Fatigue Syndrome, AKA Epstein Barre Virus, and it is an excellent book. If you can find it, it is worth the read. He listed the supplements to take and how to eat, and rest and gave some very good information that will help you understand the illness better. It got me back on my feet within months and off the couch, so I could care for my family, back then I had two young boys and a part time job. Now there is more information online about it, and I am learning more all the time about it.

I hope anything I have shared will help you in your journey, and Lisa take care of YOU. No one else can! Women are not good at putting themselves first but will this illness you must.

God Bless you all in your journey with EBV, may you put it in remission and keep it there.
Kathy

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You have written some great information, thank you!

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I read that VCA IgG levels above 320 mean that the virus is either active or has become reactivated. Anything greater than 320 is considered high and means the virus is currently replicating in a lytic phase. Results more than 640 are “very” high and could potentially indicate CAEBV (Chronic Active Epstein Barr). However, VCA IgG numbers are the most increased 2-4 weeks after the first onset of symptoms, so results above 600 could mean that you’re still in the fairly early stages of recovery. You might want to ask for a referral to an Infectious Disease Specialist, they have more training with Epstein Barr. Valacyclovir is an antiviral sometimes used as an off label treatment for EBV reactivations. It’s been shown to help patients with Chronic Fatigue Syndrome as well.

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My EBV is also over 600 and my numbers for Mycoplasma pneumoniae are just as high and have been high for a number of years. I also have the 11-3-52B multi-susceptible HLA on chromosome 6, so in the camp of like 1% of people with that genetic flaw. My issue may have something to do with a tick bite or mold exposure. What I've narrowed things down to is CIRS (Chronic Inflammation Response Syndrome) due to biotoxins stuck in my system without a way out. I'm hoping to go down this rabbit hole next (though it is an expensive route); Go to the website for The Virginia Center for Health and Wellness, Dr. Heyman has a page on CIRS with videos about his treatment and a great explanation of what is happening with those with CIRS. Watch Dr. Heyman's videos there. You might find it helpful. I haven't pulled the trigger on his treatment yet because it is very expensive. Maybe in the near future. Anyhow, I hope this helps it seems to explain an awful lot of things. The last 8 years have been very frustrating for sure with ongoing illnesses, chronic infections, and six knee surgeries (ending in two total replacements). Nothing at this point has changed any of my lab numbers.

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All my EBV results were off the charts higher than 600. That could mean 601, that could mean 1400. You need a functional medicine doctor who has experience with treating chronic reactivated Epstein Barr virus. Western medical doctors have no answers. There is no cure. There is no specialist. This is a chronic, terminal illness. The person helping me is a chiropractic neurologist practicing functional medicine. He has helped many people get their EBV into latency. There is a liquid homeopathy treatment for EBV specifically, which works good- but it is not easy. There is no simple fix. No drug that cures it. In fact, if the active EBV infection is not treated it will just manifest as autoimmune diseases and cancers. So…monolauric acid, vitamin C, vitamin D, glutamine and other reparative gut supports, glutathione (oral and IV infusions), adrenal support, auto immune paleo diet. Treatment takes several months. Goal is to go back into latency. Can always be reactivated again. Stay positive! Good luck.

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Hello, I've had an EBNA of over 500 and in general felt terrible with severe fatigue. Eventually, I got a prescription for valacyclovir 3g daily, and over the course of 9 months, my levels dropped from over 500 to the 280 range.

This is the only antibody that had a response while I was on the medicine. I did have to go back onto 1g as some symptoms started to return but it resolved it over the course of about 4 months. I think I may need a daily of 500 to maintain instead of going cold turkey but I'm still on the 1g for now. I included the chart of how my EBNA levels dropped.

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I too have had Mono andEpstein Barr. I would like some answers as well. It’s been many many years for me too

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@seekay

I am a 67-year-old female, and I was diagnosed with EBV back when I was in my early 30's. The symptoms eventually went away but started coming back to haunt me throughout my adult life. It would manifest and I would be almost debilitated with pain and fatigue for a couple of days and then it would subside. I found that many times it was stressed related. Then it was almost like fatigue and aches became a way of life. I started seeing a Naturopath about 15 years ago, and she is a God send! She never stops trying to figure out my symptoms. She discovered by thyroid was low several yeaars ago as well as my Cortisol, but we did get that back to normal, but the body aches and extreme fatigue became a regular issue down the road. Then low and behold she tested me for EBV and my numbers were like so many of you, OFF THE CHARTS! She did tell me it has become CAEBV and we started medication for 60 days at a time. After the first round the symptoms were still evident, but after the second round I am feeling much better. By better I mean, not so achy and the fatigue is bearable, but I still have some days where I have to determine myself to move, get up and get something accomplished! I hate it! I have brain fog but some of that I believe is age related but I'm sure it exacerbates it. My recent testing shows that the numbers have decreased from 600+ down to 535. Better but still symptomatic. I just got the results, so I am waiting to talk with her about them. She also did a more thorough test regarding Lyme, those results have not been returned yet.

Let me tell you though, she is like a ferret. She keeps testing and researching, and we have now tested for Black Mold. It also was positive! Which came first? I don't know yet. I am learning as I go here and always have lots of questions. The one thing that made so much sense was, I was diagnosed with breast cancer June 2020. That came totally out of left field because I am totally not a candidate. I am healthy, active, eat natural, NO CANCER ON EITHER SIDE, breast fed my babies and am small chested. God was good and we caught it early, but it was a totally enigma. Then, after all of these tests, it made a whole lot more sense. My immune system was weak and threatened. I continue to work on staying healthy, exercise (which is not always easy) eat right and take supplements that are recommended.

I have never been told that I am contagious. Initially Mono is, but once it becomes advance into CAEBV, it is not. I also have regular testing done regarding my liver, as CAEBV can totally affect it as well as the medication unfortunately. Hopefully I am done with that for a while.

I hope my story helps for someone out there. Many doctors don't believe, agree or have knowledge about CAEBV. ( Lyme as well). If you are not satisfied, I would find a doctor who does support these viruses, because they are real. Naturopath's usually are not covered by insurance which makes it difficult so all things are in stride and when I can afford them.

Bless you all that are suffering and don't lose heart. There are many of us out here that feel your pain and frustration. Take care and do your best. It is hard to have something that is hard to explain to others. Having a group of people here to chat with, that knows what you are talking about, helps in many ways and to know that you are not crazy :O)

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Hello, it's been about a year since you posted this. I hope that you are still online here. I would like to know which medication and/or supplements you were prescribed for CAEBV. Thank you!

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