Hi,
I have suffered from Chronic reactivating EBV since age 14..I am 61 now..
Omicron in January ..long haul ever since
I have been to nearly all the specialists except for one..
Infectious Disease/Immunologist
Not referred, just sat down and figured it out on my own after being told my igG was 600
Just 2 more weeks …

Hi Lisa, you are not crazy dear. EBV is a very sneaky virus that ebbs and flows at will, leading to a very frustrating life at times! I have had this illness for many years and my EBV Nuclear Antigen IgG has always read over 600. All other titers also read as ‘high’ on every test. I don’t know if my story will help you or not but I will post it below. I pray you will get something from the links I have provided. This is a post I made in another thread, and my whole purpose in posting is to give HOPE.

There are several Stages of EBV starting with the initial infection, to reactivated EBV and on to Chronic EBV. The very best you can do for yourself is to #1 – educate yourself on everything related, and #2 find a Functional Dr. who will test you regularly and help you manage it. Ask for a complete EBV panel with all 4 of the Nuclear Antigens, (VCA-IgG, VCA-IgM, EARLY AG, EBNA). This will give you the clearest picture of where you are with EBV. Dr. Been has a clear explanation of this serology testing and what the results mean at this link.
https://members.drbeen.com/library/epstein-barr-virus-ebv-serology/SJLy09WZF
Most GP's do not know how to advise you on EBV infection, other than to tell you to go home and rest.

I don't know if you are familiar with Dr. Been's lectures or not, but he explains a lot of details, and studies in his lectures in layman's terms. You might start with listening to some of his videos online to understand why you are feeling like you do, and just how sneaky this virus can be. Here is a link to get you started and this video explains how the Covid Infection has caused a huge amount of Reactivated EBV in the population referencing several studies worldwide. If you have the time he has (4) different videos on the subject of EBV.
https://members.drbeen.com/library/epstein-barr-virus-prevalence-in-long-covid/Hy3asLn-F
He is also featured in the forum of FLCCC.com at this link.
https://covid19criticalcare.com/courses/long-story-short-with-dr-been/lessons/long-story-short-4/
FLCCC.com is also a treasure chest of good research and solutions to help fight Long Covid and other illnesses developed from the infection and the shot.

As for my experience with the illness, it is extensive and long. I will share one of my previous post, in hopes that it might help you in your search for good health again. I have posted in the past in the "Chronic Reactivated EBV" thread of Mayo Clinic CHAT, as I have suffered with it for almost 40 years! In my 30’s I came down with Guillian Barre’ Syndrome which they suspected came from EBV. Within a couple of years after recovering from that paralysis I was diagnosed with Reactivated EBV which began my long journey with Holistic medicine.

My GP or my Infectious Disease specialist at that time did not know how to help me. My Infectious Disease Dr. did offer to send me back to Duke University Hospital, but I had already been there for months with the GBS and unfortunately, I don’t think back then in the 1980’s anyone knew what to do about it. I was told to go home and rest!

I found a book by a Holistic Dr. called ‘Chronic Fatigue Syndrome/aka Epstein Barre Virus’ by Dr Jesse Stoff. It was a life saver and had very specific directions and protocols for supplementing and diet. I followed it religiously and within 3 months was feeling recovered to where I could be up "ALL" day and not a partial day. As long as I maintained the discipline of watching my diet and supplements, I knew would help, I was able to maintain my improvement. Then as I aged into my 50’s I let my guard down. I stopped the supplements and paid little attention to my health. EBV came back with a vengeance, and I have struggled with it ever since. I am now 70! @lovelovelove you are very correct! There are alternatives out there that will help but if you suffer from Reactivated EBV in a Chronic form, you must tackle this from ALL fronts and be diligent with your approach. Do not put yourself on the back burner of importance in relation to your health, stress level, diet, rest and relationships. It all is Important!

Some of the medications and supplements I am on are Valtrex, Low Dose Naltrexone, Lauricidin/monolaurin, Vitamin C, D3, K2, Zinc, Quercetin, B complex, Turmeric, melatonin, magnesium, probiotics/IBS Clear (yes the gut issues are real with EBV), Omega 3, CoQ10, and Ivermectin if I am in the middle of a cold or flu. I do not take any vaccines and was told by Duke Drs. NOT to EVER take any, ever again, so it doesn’t surprise me that the vaccine from COVID has caused issues with reactivating this virus. I have found in the last 6 months while being titrated up with LDN (Low Dose Naltrexone) that I have felt better than I have in a long time, even though my numbers are higher than they’ve ever been, and I show I am in an active case of mono with every test. With that bit of information, I feel like it is really helping the way I feel even though my numbers do not reflect it. They have dropped ever so slightly in the last 4 months but are nowhere near normal levels! But I had a Dr. tell me once that this is not a sprint, it is a marathon and that it would take time, so I pray that with each recheck of my titers there will be improvement. Sometimes there is slight improvement and sometimes it is worse, especially if I have had an infection, cold, flu, covid, anything like that will cause a flare of the EBV. Which is why we should never let our guard down if you are suffering with a Chronic EBV illness.

Don’t get discouraged, just take extremely good care of YOU! You are the only one who can. REST when you need it, it's important! Eat as healthy as is possible, whole foods, stay away from junk food. Supplement your diet with what will support your immune system. Reduce your stress if possible. At least when the Drs. don’t have the answers you can research and go the holistic approach to help some. If you can find a Functional Dr. to assist you in this journey, you’ll be way ahead in your recovery. Interview your Drs. ask them if they have had any experience with treating EBV. Recovery is possible, you can put this beast back in a latent state, so there is HOPE!! Keep looking up!! Prayers for you all! God Bless.