LindsayI’m going to be honest – I have never read Shakespeare’s Hamlet. My knowledge of the soliloquy from which the title of this post is borrowed is limited to Adam Sandler’s humorous but brief performance as Hamlet in the movie, Billy Madison.
I have a new chronic illness diagnosis. I wasn’t expecting one, didn’t realize I was actively searching for one, and even just a few months ago wouldn’t have believed you if you said one was forthcoming. If you read the previous post, you know I have been struggling with some pretty significant fatigue and was just looking for an explanation. I thought maybe I had a cold, or maybe my ferritin had dropped too low and I was anemic again.
After a week or two of fatigue, I also developed swollen and tender lymph nodes in multiple places on my neck, tinnitus and fullness in my ears, sore and red throat, body aches, and joint pain. And that fatigue…oh my goodness, the fatigue. It’s that it-doesn’t-matter-how-much-rest-you-get fatigue, where somedays you don’t even have the energy to shower. My doctor initially suspected a cold or virus, but after several more weeks and negative COVID tests, it wasn’t getting any better.
In doing some research I realized my symptoms sounded a lot like mononucleosis. And after a tip from a coworker, I started to look into Epstein Barr virus (EBV). EBV, among other viruses, can cause mono. Between 90-95% of the population has the Epstein Barr virus, but for most people, it just lies dormant in your system forever. We never get rid of it, but it mostly hides in your B-cells. However, for some people it reactivates from time to time, causing symptoms very similar to mono.
My doctor had ordered a mono test, which came back negative. But EBV only initially causes mono. When it reactivates, it’s just EBV. So, I decided to order my own test from Quest Diagnostics to check my EBV antibody levels. 
There are several tests for EBV reactivation, but the most commonly used are 4 antibody tests: IgG, IgM, EBNA, and EA. IgG and EBNA are positive in the majority of the population because those just show that you carry the virus, and again, 90-95% of people carry the virus. The IgM and/or EA are only elevated when you’ve had a current or recent infection. My IgM was normal, but my EA was off-the-charts high. See below:
| Test | Normal Range | My Results |
| EBV AB VCA IgG | >21.99 Positive | >750.00 (high) |
| EBV AB VCA IgM | <36.00 | <36.00 (normal) |
| Epstein-Barr Nuclear Antigen Antibody (EBNA) |
>21.99 Positive | 66.80 (high) |
| Early Antigen Antibody (EA) | >10.99 | >150.00 (high) |
While my IgG and EBNA are high, they just show I carry the virus. However, my EA is very high. The test only goes up to 150, so all we know is that I’m above that. We don’t have any clue how much higher. EA is high for up to 3 months after symptoms begin, and thus is a good indicator of an active or recent infection (source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3782265/). With my very typical EBV symptoms, this suggests I have reactivated Epstein Barr virus.
I had an appointment with a doctor last week. I told her my theory and presented her with my positive EBV results and all of the research I had done. She told me it’s just allergies. My nearly 10 weeks of exhaustion, fatigue, body aches, swollen lymph nodes, sore throat, and headaches. All fucking allergies and, according to her, nothing a little Flonase won’t cure.
Add that to the super insulting POTS journal article that has been circulating this week (if you follow anything POTS related on social media, you know what I’m talking about), and I’m feeling a little dismissed.
Unfortunately, there’s not a lot that can be done for EBV. There’s no cure, and the best I can hope for is that I can get the virus to go dormant again, although it will certainly reactivate at some point in the future. It’s another chronic illness to add to my growing list.
I have been doing lots of research on causes and how to make reactivated EBV go dormant faster. Most of what I have read says that reactivation should last about 4 weeks. I’m on week 10, so…fingers crossed…any day now.
I will report back soon with what I discovered about treating EBV, but in the meantime, if you know anything about Epstein Barr virus or reactivation, I would love to hear it. If you prefer not to respond publicly, you are always welcome to email me at lindsay@dysautonomiac.com
“To be, or not to be? That is the question—
Whether ’tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles,
And, by opposing, end them?”
– Shakespeare, Hamlet
Smell ya later.
– Linds
Hi Lindsay! I’m also struggling with finding a good primary in town. Mine is really nice but does a lot of handwaving as if it helps me not worry, but that approach has gotten me into real trouble with things like my bone density. Surprisingly her nurse has been way more helpful lol. Anyway, I’m wondering what your allergist thinks. I thought you may also see Dr White and Dr Ahern? I’m going to guess they wouldn’t just pass it off on seasonal allergies? More recently Dr Ahern referred me out to Scripps Intergrative Medicine, which took nearly a year to get into, but there, Dr Dalhoumi got me the coolest intracellular blood panel by Vibrant and found a few things I was low on that really helped. Things that are hard or impossible to reveal on typical bloodwork. Wonder if something like that may also help discover any holes nutritionally that could help shore you up, and help your body deal with whatever’s going on. Once I got on methyfolate again I got much more stable and rickety, like taking a my baseline up a notch. Had energy to stay up past 7 in the evening again. I heard b vitamins in general can be more easily depleted when sick, maybe more so for those of us with MTHFR issues as well, might be somewhat relevant to you? Anyway, I’m really sorry to hear you don’t have any clear answers yet. Right now I’m working hard on improving my mental health. This chronically illness life is draining, and I’ve had some of the scariest experiences in healthcare just trying to be believed and treated appropriately (you know, get real help) during scariest physical lows. Being sick can be seriously scary enough, but to also not be able to trust the people and places to help us is often just as devastating.
Hi Brandy! I haven’t been to Dr. White since 2015 since my allergies are mostly under control (despite what my doctor says), but I do see Dr. Ahern. Did you u hear Dr. A is retiring? Very disappointing, as he has been so wonderful. I do have an appointment with him soon, and I know he won’t think it’s allergies. I’m hoping he might be willing to give me a referral to someone who’s knowledgeable about this, since I haven’t had much luck with my PCP’s office yet.
I take methylfolate also! I have one MTHFR mutation and have found that methylfolate and methyl-B12 help with my nerve pain, for whatever reason.
You’re so right – it’s very draining! I don’t have the energy to advocate for myself, but unfortunately it’s what we have to do to find someone willing to help. Thanks for letting me know about Scripps Integrative Medicine – I might look into that!
I have POTS and also have had a reactivation of EBV. I have had high IgM, IgG, EBNA, and high Early Antigen-D…all high since Feb 2018. My ex had mono when we were in high school(way back in 1990), but I never had any symptoms then, so was never tested. But I started getting yearly sore throats in 2016 that lasted about a month, and in 2018, my EBV labs were positive. My IgM is moderately high, but others are off the charts. One immunologist in Chicago told me back in 2018 that my levels were “highly unusual”. And they’ve remained the same since. I’ve seen neuroimmunology as well, who said they see this with “Immune Dysregulation” and “could be” cause of my chronic exhaustion. More recently, I started testing EBV DNA(which is high as well), which is the best way to know if EBV is currently active -I’m told…and I’m also advised it is more reliable if done with whole blood. I reached out to an EBV spec at NIH who studies it & he was kind enough to correspond with me via email after reviewing my labs & symptoms. He said the DNA is the one to watch and retest every 3 months in hopes it would reduce down. He also said that my levels of EBV DNA are what they often see in immunocompromised patients. So, now I’m set to see neuroimmunology again in hopes of finding out why my immune system isn’t handling EBV well since I don’t have HIV.
Just giving my own experience here, but maybe you can consider getting EBV DNA checked too? Might help prove to your Dr that you are dealing with active EBV.
From my experience, I’ve had very little luck finding a local Dr who knows much of anything about chronic active EBV or reactivation. But neuroimmunology might be able to help you-maybe. Mine didn’t know much other than that it correlates with immune dysregulation & chronic fatigue, but at least she verified it was a chronic immune issue. As does the DNA lab now.
The other thing to consider, if EBV lasts a long time, is it’s correlation with cancers, so the other dr I have seen regarding EBV is hematologist/oncologist. Just to keep eye on things and make sure I’m screening. My hematologist does understand the EBV/cancer assoc. I’d hope most hematologists do but I’ve had tons of Drs, and only have had maybe 3 that seemed to really truly know their stuff and be able to actually guide me. I’m glad I heard back from the NIH Dr, he had the most knowledge on it and is updated on it since it’s his research area.
I also have Alpha 3 Achr antibody, so I’m super active in screenings and asking for testing(as 30-40% of Alpha3 Achr antibody carriers either have cancer or develop it-per a Mayo study). Some pots patients carry this antibody as well.
I read a TON and I push my drs for answers when things are weird. It’s very hard having POTS because most of my complaints get brushed off as pots related…Neurology is so very complex, so I try to keep my cool, but I don’t feel like my symptoms are always taken seriously as anything other than pots stuff. So I totally understand how you felt when your Dr insisted it’s just allergies! Been there, super frustrating!
Good luck! Hope your fatigue improves! And I hope your EBV settles down soon.
P.s.- if your EBV DNA gets tested and is high- and remains high- the NIH Dr told me there is a DNA level when they consider IV treatment(my DNA just isn’t quite that high currently). But it is worth watching from everything I’m told. If DNA is high long term, it can causes “damage” I was told.
Keep us posted and best of luck!
Hi Jo, thanks for your comment! I’ve been trying to read a lot about EBV recently and saw the EBV DNA tests mentioned. Was it difficult to find a doctor that would order it? I wonder if I could order my own from Quest labs – I’ll have to look into that.
I have also heard that EBV can lead to certain cancers, and also MS, both of which are scary. I’m glad you have a hematologist keeping an eye on that for you.
I hope you don’t mind if I ask a couple of questions about your EBV – have you felt EBV symptoms consistently since 2018, or does it come and go periodically? If it comes back periodically, do you know what triggers it for you? Have you found something that helps treat the symptoms?
Thanks!!
My EA EBV has been high every single time it’s been ordered since 2014. My ND said was “dripping in EBV.” Ew. I haven’t treated it because I’m so reactive to meds, so I’m too chicken to take antivirals, but I take lysine. In the distant past I was given monolauren for reactivated EBV. So sorry you’re dealing with so these increased symptoms. It’s miserable. X
Thank you! I was already taking 500mg of l-lysine because it helps with iron absorption, and I take iron pills for anemia. I had heard that it also helps with EBV, so recently upped my dosage to 2000mg (working up slowly, of course). I also recently started monolaurin. I’m not sure if I see a benefit yet, but apparently it’s the gold standard for EBV treatment, so we’ll see. Fingers crossed.
I tried leaving reply yesterday, but it didn’t post for some reason…I just wanted to say sorry you’re dealing with EBV. I too have had increased fatigue and high EBV titers(my high titers are IgM/IgG/EBNA/IgA). Mine have been high(some off the charts) since Feb 2018 & have not changed much since(I check every few months).
I started checking EBV DNA with a whole blood lab(on advice from a Dr- more reliable if done with whole blood), and it’s high as well.
An EBV researcher told me it’s the DNA that needs monitoring and is most concerning, the DNA proves active infection(or reactivated). If EBV DNA gets to a certain level, they recommend IV antiviral treatment. Mine’s not quite at that level, but he said to retest every 3 months and watch it. He also said DNA elevations like mine are seen in immunocompromised patients(usually HIV patients they see at NIH), but I don’t have HIV, so not sure why mine’s as it is, but I’m told by 2 other local drs (neuroimmunologist and an immunologist) that I have “Immune dysregulation” and that my titer levels are “highly unusual”… I’ve had exhaustion for many years with pots that fully developed after 2 spine fusions(but had migraines and heat sensitivity prior, so some signs were there even in young childhood), but definitely a huge decrease in energy once EBV reactivated in 2018. My ex had mono when we were in high school in 1990, but I never had symptoms, and never got tested.
These days, I can get too tired to talk or even process what people are saying to me at times, especially later in the day or after an activity. So I understand the fatigue. I also have had swollen nodes in neck and swollen glands. I also have Alpha 3 achr antibody(which can be cancer marker as well as marker some pots patients have)…I also have high inflammatory markers, like CRP-hs, cytokines, and high fibrinogen. I have a ton of weird Neuro symptoms from tingling across back to facial numbness to word recall and facial recognition issues(if not ppl I see regularly). And more recently swallowing troubles and waking up to my head shaking, and very strange migraines and auras, plus an abnormal EEG. Weird stuff, not sure my EBV has much role in those things, but it was good to learn about the DNA from an EBV researcher since my local Drs don’t know a lot about EBV.
Hope you are able to find a good immunologist or neuroimmunologist that can assist you.
Best of luck!
For some reason WordPress required me to approve your other comment, which should now be displaying below (and my response). Thank you so much for stopping by to comment again! This is very helpful!
Hi..I don’t mind answering… The extra fatigue is pretty consistent for most part. It feels much like waking from surgery and your muscles are just exhausted all the time. Hard to get moving, and very hard to do any activity long term. My enlarged lymph nodes and swelling around glands is pretty chronic, haven’t really reduced down. I tried a steroid pack but it didn’t help much. I also tried an antiviral right at the beginning from the immunologist, but it made me very sick & nauseated. So now I just use bromelaine as a natural anti-inflammatory to help with general inflammation & keep my blood a little thin(because of my high fibrinogen and lupus anticoagulant ..plus I’m very scared of stroke due to family hx). But I don’t think it helps ebv specifically. I’ve heard Oregano oil can neutralize EBV, but I’ve tried it and it is quite hard on the stomach and intestines, and some say it is toxic to some degree … Very potent stuff. I’m about to try Lysine.
I feel a tiny bit more energy on high pressure days that are cooler or cold versus hot days, and with B vitamins(but maybe the high pressure helps the pots more than ebv fatigue, as I’ve done better on cold & clear days for many years).
My PCP ordered the EBV DNA.
I know Ulta labs goes through Quest and offers most or all of the EBV titers. I sometimes use Ulta for other labs so I don’t have to bug my pcp more than I already do…But DNA had to be sent from Dr(at least where I’m at in IL).
The only crummy part about Ulta is it is self-paid, so no insurance can be used..but Ulta offers far more labs than the Quest direct order website does..and they’re pretty reasonably priced. I’ve had my Ulta labs drawn at Quest a block away, so it works out nicely.
Hope you find your answers & some guidance!
I find the whole everyone-has-a-virus-hiding-in-their-body thing really disconcerting. Like we’re all time bombs waiting to happen.
I’m glad you were able to order your own test. You shouldn’t have had to of course, the doc should have thought of it, but I’m glad you did. Is the doc that did the mono test the same one that you saw with your EBV theory? “She told me it’s just allergies” – that makes me so damn angry! If patients are clued up and able to research, and they’re not assertive enough, they’ll all be railroaded over by the ignorance of these so-called doctors. It’s frustrating that it doesn’t sound like you get an official diagnosis down on your records. Not sure what it would help, but I often find the lack of diagnosis of something comes back to cause me more aggro.
I’m sorry I don’t really know much about EBV, and I’m sorry I’m so late catching up on posts. Please know that I think you’re awesome for pushing through and fighting for your health against a tide of ignorance.
I’ve found that “About nine out of ten of adults have antibodies that show that they have a current or past EBV infection.” I wonder if those people, or perhaps most of us, ever knew we had such an infection? I guess probably not if it gets mixed in with general illness for the spoonies, or presents like a flu with fatigue. So how come these ones must pass quickly, and yours is still making you poorly at week 10? Not sure.
What I found on webmd provides a wonderful bit of advice : “ You can prevent EBV by not kissing or sharing drinks, personal items, and food with people who might have infectious mononucleosis. Since EBV infections are generally not life-threatening, most doctors recommend taking care of your symptoms by: Going to bed early and sleeping for longer periods”. So yeah, no real help online from what I can see. I guess on a basic level they just mean anything that can support – rather than tax and overwork – your immune system. EBV causes glandular fever but you don’t have that (mono) so I’m not sure why the EBV is still ongoing.
I’m so sorry, Linds. You have too much to put up with and I wish I could help make it better. Bloody health problems, they really sucks ass.
Sending lots of love and gentle hugs your way. I’m sure your body will kick this before too long, it has to.
Caz xxxxxx