Post EBV - 2.5 years later and still have swollen glands?

Shells40

Hi

I started to get swollen glands in my neck/under chin at the beginning of May. Two weeks later I took ill (fever, no appetite, fatigue, anxiety etc) and had to have about 6 weeks off work. Trips to the doctor got me nowhere. They just said I probably had a virus. They took blood but just told me liver function ok thyroid ok etc. After about 6 weeks they sent me for an ultrasound on my neck and abdomen. For the abdomen they said the spleen was fine and for the neck they said I had enlarged lymph nodes that didn't look suspicious just reactive. They told me the nodes can take a while to go down but said they could refer me to ENT but that would be about another 8 weeks wait. I can't feel the nodes myself but they ache a lot and sometimes are almost throbbing. It comes and goes throughout the day. I asked if it could be glandular fever and was told no as I hadn't had a sore throat. I don't know if this was tested for in my blood or not (I think not).
I was that anxious after researching online as everywhere says if lymph nodes are swollen longer than a month then it's cancer that I went for a private referral to ENT. The consultant I saw said they weren't at all suspicious and thought probably from a virus but didn't mention EBV. That was 6 weeks ago and I'm due to go back this week. From more research online I'm really starting to think this 'virus' could be EBV.
My glands still hurt everyday. It's not horrific pain or anything more of an ache but it's just so worrying and does affect my everyday life. Also I still have some fatigue although not as bad as it was.
It's now been 4 months since my glands first swelled. Previous to this I had no health issues.

Do your glands hurt or can you just feel them?

Sorry I haven't been much help but my guess is that somehow your body is still under attack from the virus and this is why the nodes continue to react.

dle11

Hi,
Sorry to hear about your illness. I have had EBV since I was 25. I am 56 now. I am sorry to tell you that swollen glands are something that will come and go. It will be better at times, but once you have Chronic Fatigue at least for me, it has been a lifelong problem. There are things that you can do to help it, and I suggest you also get a thyroid test. Hypothyroidism has a root cause in EBV. And, if you to have low thyroid, it could be causing you to feel run down, tired, etc. I would make sure you also have enough B-12. As, low iron, and B-12 can help with CFS. Is your EBV in remission? I spent one whole year in bed after I was diagnosed. Get lots of rest! The more that you push yourself, the more tired you will become, and it will take longer for your EBV to go into remission. Drink lots of pure water, kombucha, eat greens, and go light on the gluten and sugar. Stay away from caffeine, drink green tea, and fresh carrot, and veggie juices. Don't drink alcohol.
Hopefully the tests back from your doc will help!
Let me know if you have any questions. I have lived with this disease a long time.
Deb