Epstein-Barr virus

[Mommeekins]

I was wondering if anyone can give me any insight to the Epstein-Barr virus with CLL, and if anyone has had issues with this. Thank you in advance.

[Sepsur]

I’ve had it/ have it - I’m not sure if it ever goes away fully. I picked it up in ICU & ended up having glandular fever which I didn’t really notice because of how shit I felt at the time. Fatigue was caused by everything. I had MSSA, VRE, CMV & EBV - all hospital acquired. None are significant until you are run down & have particularly low immunity - then they can all run amok. I rember them prodding around my liver & spleen all the time. Ultimately it seemed to me, each could lead back to a pneumonia if left untreated - don’t quote me on that - it’s just how it read to me - hence all the teams were desperately trying to rid me of every infection. Remember I had just come out of a 2 month coma & was seriously messed up. Perhaps you are walking wounded and not quite as vulnerable as I was at the time. I think I take Anciclovir against all the herpes family of virus. I think 🤔

[Corin850]

I had ebv and the symptoms for up to a year. Fatigue and sweating. I think half the nation have ebv at some point. It never leaves us but with a poor immune system it can activate. It goes away. Eventually. Into hibernation.

[mantana]

I'm not sure if it can give serious issues once you had it (for most people at least)? Maybe if you really can't fight infections anymore...

And apparently most people had it:

en.wikipedia.org/wiki/Epste...

Most people become infected with EBV and gain adaptive immunity. In the United States,

about half of all five-year-old children and about 90% of adults have evidence of previous

infection.

Note how similar it can be to CLL with some symptoms: "fatigue, fever, inflamed throat, swollen lymph nodes in the neck, enlarged spleen, swollen liver",

EBV is also thought to increase the probability of getting leukemia (along with a number of other viruses):

When EBV infects B cells in vitro, lymphoblastoid cell lines eventually emerge that are

capable of indefinite growth. The growth transformation of these cell lines is the

consequence of viral protein expression.

When my blood test 9 months ago gave increased WBC results, before my CLL diagnosis, my googling indicated it could be leukemia. My doctor said it was unlikely, as I was just 41 years old. She said I could have contracted EBV or cytomegalovirus (CMV) recently. The blood tests confirmed I indeed had both EBV and CMV in the past, but not recently. Add hepatitis B to the mix (which I apparently had since birth, so another chronic disease), human papillomavirus (HPV - warts anyone?)...

Some more blood tests, bone marrow test... And here I am, with CLL, 42 years old.

[WinJ3]

I had/have EBV and it is very common. I was sweating, swelling and fatigued with infections.

EBV VIRAL CAPSID AG (VCA) AB (IGG)>750.00 (U/mL) HTP

U/mL Interpretation

---- --------------

<18.00 Negative

18.00-21.99 Equivocal

>21.99 Positive

Win

[country76]

I tested positive for EBV. An employee was suffering from fatigue due to the EBV so debilitating she was off work on disability. They tested my department and almost everyone came back positive. I didn't remember having an active case. I was seldom sick.

[morepork]

Joining the chorus of those with EBV - caught while nursing . I was so sick that about 2 weeks of my life are lost to memory. Raging fevers , tender swollen glands, WBC counts hitting the ceiling, semi-comatose. It took me over a year to recover fully. The medics were worrying about it possibly being leukaemia at the time.

[Tingy]

EBV has affected me for the past 45 years since I had ‘glandular fever’ as it was known in those days. I’ve regularly had virus infections over the years which have wiped me out and in recent years these have been related to this. Thirteen years ago when I had my brain tumour the consultants were having trouble with my medication as I kept having unusual adverse reactions to many of them. I happened to mention that I had had EBV and they said that was the cause and gradually over many months and very slowly managed to sort me out.

Since my CLL diagnosis which is almost six years ago I’ve learnt even more about EBV. My consultant who is also a research professor told me when I mentioned I had EBV all those years ago, especially that when one has this when older particularly 20+ it remains in your body. They went on to say that since then up to 40% of my immune system daily has been fighting this!! I then asked where does this place my immune levels now that I’m diagnosed with CLL and the consultant’s shoulders were just shrugged! I also wish to mention that I’ve suffered from terrible fatigue for many years and since the CLL diagnosis this is getting worse as time goes on!

I hope this information is of some use to you.

[Alpha66]

EB virus is very common with many people having antibodies to it.I had it some years ago ...felt bad for a couple of months ..although st the time the doctor know it was viral but not sure which. I was diagnosed with CLL about 20 years later in 2016.Recent research appears to show a linkage between the EB virus and CLL....but research is still ongoing.

[Kbcjones]

I had an EBV flair up a couple of years ago - fevers, night sweats and fatigue for over a month. It was awful - and I was scared to death that my CLL was progressing. It took my GP forever to figure out that’s what it was, and that was with my help due to a suggestion from here on the forum - I think it was Lankisterguy that mentioned it. Apparently it’s hard to diagnose because as you say, most of us have the antibodies because we’ve had it. I haven’t had any problems since, but it’s scary to think it could happen again. I laugh now because I say my car diagnosed me - I had felt bad for a week or so but was trying to ignore it (as we do) and while driving a message popped up that said “Driver Attention Level Low: Time for a Break.” I came home and my temperature was 102!

Kathy

[Mommeekins]

Thank you everybody for your replies, I appreciate all the information.

[placebo_09]

EBV reactivation in combination with CLL and other blood cancers can trigger Hemophagocytic Lymphohistiocytosis (HLH) which is a serious, rare and difficult to diagnosis illness. I have managed to survive it twice: once while being treated for CLL with Acalabrutinib, again after Richter's Transformation. I came very close to dying in the first instance. There may have been other contributing factors in my case. HLH is poorly understood, especially in adults partly because of its rarity. There has been one other case of HLH mentioned in this group; sadly it was fatal.

Very high levels of ferritin is one of the key signs of HLH that is easy to test for.

Here are a couple links to case studies. ncbi.nlm.nih.gov/pmc/articl... sciencedirect.com/science/a...