Epstein Barr Nuclear AG AB IGG result of over 600

Hi,
I am 37 and I dont recall ever having mono, but I do have the IgG markers of over 600 for years. When I went to my primary and told him that Im just beyond exhausted he checked me for EBV and thats how I found out that my IgG markers are extremely high. Some periods of time are better than others, but I constantly struggle with fatigue and exhaustion. Ive been to rheumatology and they tried to say it was fibromyalgia. I am struggling SO bad with this exhaustion and fatigue, to the point where its rendered me lethargic, along with body aches I dont know what to do because doctors dont think that this is connected. please if anyone has any information on this it would be more than extremely helpful

People who understand! I had mono terribly in 2010. Ever since I get these flare ups where I'm super sick, very much like mono, for a few weeks at a time, multiple times throughout the year... For the last 13 years. I'm now 31 , struggling to maintain working full time as an occupational therapist because of my symptoms. My EBV nuclear antigen has been above 600 for years and seeing the research on the link to MS and other diagnoses. But no medical doctor has been able to find treatment or actually diagnose me. I've been to all sorts of doctors over the years, the rheumatologists have diagnosed it as fibromyalgia. I really think it's specifically an EBV issue. Going back to infectious disease doctor next month

I suffer from the same exact issues and cannot find any help or answers from the doctors. It’s so debilitating and frustrating. Pls share any insights here if you find it 🙏🏼 . Thank you.

I have suffered since the 2nd COVID shot and almost daily succumb to the prone position just to get off my legs that cannot hold me up or walk. I have had the EBV since 1969, but only since the vaccine have I found the tremendous weakness and ability to sleep at the drop of a hat. Doctors have instructed me to just go to bed and do floor exercises, which I do, but I have also found the over the counter method works too. First of all, I gave up all forms of alcohol and limited sweets to primarily dark chocolate. Eating bad seems to set it off fast. I also have all forms of "Calm" that I get on Amazon. I take the regular drink during the day and the sleep at night. They also have these in gummies and capsules. One hour before bed I take 600 mg of Ibuprofen and 100 mg of Melatonin at night before I go to bed with 2-CBD (with a hit of THC tensor) gummies. This takes the pain and spasams out of my legs and arms so I can sleep, but I also wake up with strength. Calm is a magnesium drink that works very fast to release your spasams, but I also drink coconut water and herbal teas made into iced tea, and I add fresh mint. This is a routine for me every day, if I miss it, I am in pain and cannot walk. I do take B-12 at lunch time and do a short walk. Larger meal is at lunch and light meal is at dinner. There are a slew of OTC vitamins and supplements I take, but what I have written is for the EBV. This only works well if I stick to this regime and do not falter. If I do, I have so much pain and have to go to bed. One of my doctors told me to only eat steamed vegatables and not raw. Digestion is not great when you have EBV and steamed breaks it down to digest, and not cause diahrea. Diahrea causes your liver to work overtime and spreads the pain in your body.

Yes, mine has been this high since Covid, early 2020 or before. I had mono as a teenager as well. When I began to feel debilitated with fatigue and had a rash all over my back I went to several doctors, primary care, rheumatologist, pulmonologist, neurologist… No one could figure out what was wrong with me until I saw an integrative doctor after I started passing out at work in June 2021. I had 3 ER visits in a year with chest pain as well. I have been diagnosed with long-haul Covid, reactivated EBV, ME/CFS, Fibromyalgia, dysautonomia, POTS. I have been really sick since April 2020. My primary care still has the nerve to say to me that it’s depression. It’s awful the gaslighting that comes from doctors.

It’s so frustrating, I spend every day resting because I have no choice I’m so debilitated with fatigue. I have tachycardia when I stand for too long, and I’m dizzy more than I am not. If I happen to have what I call a ‘decent day’ I inevitably end up with post exertional malaise from basically doing nothing. Sometimes the PEM can last for a week sometimes it can last for a month. I currently take Vitamin C, D3, L lysine, Monolaurin and a really good Multivitamin from Pure Encapsulations. I am 58 years old, single and can no longer work. They don’t know if Covid itself triggered all of this or the vaccine. I have no friends left because every one is tired of taking me to doctors appointments and then they eventually just stop calling because I’m always sick. It’s a hard pill to swallow when people say things like “ Yes, well I’m tired too” and then they go out for the night or away for the weekend.
Interestingly , I feel like I had more better days last summer than I am currently. It’s so frustrating, isolating and sad. Everyone else is out living live.

I hear you all.

I am so glad to have found all of you. Like some of you, my test is >600. I had mono when I was 15 and almost had to repeat a grade. I had mono and then pneumonia with a swollen spleen and glands and on and on. I am now 54 and since 2017 NOBODY knew what was wrong. I was tested for everything and told I had FM. So, here we are in 2023 and I'm entrenched in physical and psychological health. I found a place called Integrative Healing Wellness, Inc. They ordered the mother of all blood tests and there it was.

So, can some of you tell me what your next steps were to feel better? I'm always so tired (my dominant symptom). I'm going to read some more of the posts, but please feel free to comment and share. I fully understand what works for you may not for me and vice versa, but I'd love to know how everyone is progressing.

Luv2Lrn (Dana)

I can relate to your feelings. Reading your post made me realize a lot of things. I have the desire to do something and then I don't because I think about what's involved in getting ready. I've learned not to make plans. I too have run into people who don't understand and I remind myself that they really don't. Their frame of reference is they'll rest later or on the way etc but speaking for myself sometimes that doesn't work. In fact, sometimes after a rest, I need about a half hour to become functional. You mentioned the COVID vaccine and wondering if it caused a flare for you. It may have. I have a friend who has Lupus and she was vaccinated (COVID) and it put her in such a flare for months. Hope you're doing better.
@luv2lrn

Welcome to Connect, @luv2lrn! We’re happy you found us too! It helps to know you’re not alone when you’re dealing with a condition that takes so much out of you!
You live up to your @name with “love to learn”. ☺️ It was that curiosity and tenacity that finally helped you find diagnosis.
EBV is an underrated virus. Something like 80+ % of the world’s population has had it and most often it’s a one-time event and becomes latent in the system. But for some people, the aftermath lingers or it can reactivate to stir up a heap of trouble. It’s finally being recognized as an underlying cause for some people with long term issues like fibromyalgia and other autoimmune conditions. It appears Covid produces the same type of issues in many people with longterm Covid.

You found a real treasure in the Integrative Healing Wellness, Inc. They took you seriously and went the extra mile to chase down your symptoms. That’s a big step towards finding a path to recovery!

Have your clinicians given you a treatment plan?

Hello Lori,

This is an odd thing, but now that I have some understanding I see why “sleeping the day away” happens now. I’m on the east coast and just woke up. It’s 6 pm. I’ve learned not to upset myself over stuff like that because until there’s a cure or proper treatment plan, it won’t change.

I’m still a little confused about EBV. I read a lot about it since the discovery and the over arching symptom is being contagious and I’m not (at least at the moment). As for the Integrative Healing Wellness (IHW) we just discovered this piece of my health puzzle so we’re working on a treatment plan. After it’s is explained to me I will share it with you.

Lastly, my Luv2lrn comes from a place that has saved me from feeling worthless. I was never able to continue my education after H.S. So in 2020 I went back for my bachelors degree and now I’m in my grad program (master of science). Both degrees in psychology emphasis health. I’m 54 and it’s never too late to educate 😊.

I know this comment is coming late so perhaps you have found the answers. I had a EBV level of over 600. I have been in the care of an infectious disease doctor who recently retired. I started with 6400.mg of acyclovir and after four years 3 of which I slept through I was reduced down to 3200 mg per day. I had / have light sensitivity, fatigue and when tired I am very jumpy at the slightest sound. I hope this helps.