Epstein Barr Saga!!

[Melissa89]

Hi everyone,

Just an update on my EBV saga and a few things that really helped me combat brain fog / post viral fatigue. I did IV vitamin C (15000 g bags) 2 x a week and b12 shots 3 x a week. I have to say the high dose vitamin C made me feel nauseated and a bit dizzy but it helped significantly with my energy levels and swollen neck glands. My tonsils post mono are now cratered and still large (not painful), but doctors have noted how they are still larger than life and I could do with a tonsillectomy.

My current results after 3 months are:

EBV VCA igM: Non reactive (finally! I was worried it would never ‘switch off’)
EBV VCA iGG: REACTIVE
EBNA 1 iGG: Equivocal (low reactive)

Can anyone shed some light on why my ebna is still a low pos? Anyone with similar results? My doctor said sometimes that happens & biology is not uniform so I’m not entirely sure what he means. The pathologist noted that it was consistent with a past infection with EBV. Should I retest in a few weeks?

My immunologist is running a EBV DNA (is this the same as a PCR?) test and he also mentioned that he recently had a 55 year old patient with a first time EBV infection that hospitalised her for 2 weeks & has caused autoimmunity issues - it seems that it is no longer a childhood/teen virus that we once thought it was.

Thanks for all the help - it has been a god send!

 

[Rufous McKinney]

My immunologist is running a EBV DNA (is this the same as a PCR?) test

Curious- how did you find the immunologist you are seeing? Did they have particular qualifications or experience that enabled you to find them?

(I'm trying, and I get nowhere, they cancel the appointment and say they can't help. me)...so I have to keep looking and so: WHAT and HOW does one locate?

 

[Melissa89]

Curious- how did you find the immunologist you are seeing? Did they have particular qualifications or experience that enabled you to find them?

(I'm trying, and I get nowhere, they cancel the appointment and say they can't help. me)...so I have to keep looking and so: WHAT and HOW does one locate?

Hi Rufous,

I wasn’t seeking an Immuno at all - my pcp wanted to check on my immune system as I had high ASO titers, recurrent bouts of strep (since I was a toddler, some that have put me in to hospital with high delirious fevers) & and CMV iGG. Now with this new/acute infection with EBV and mono in my late 20’s it promoted him to consider autoimmunity or CFS. I complained of post exertional malaise since I was 16 - I blame a kidney infection as the catalyst! I remember it clearly. It’s been a ten year journey until something “clicked” with my pcp when going through my history.

He checked on my lymphocyte subsets and discovered a very hyper immune system - a very healthy cd4:cd8 ratio but quite elevated and ‘excited’. PCP then referred me to an immuno who I was lucky enough to get an appointment within a span of 2 weeks from referral.

I think I am really lucky to have a PCP who is switched on and very much a believer of CFS and viruses reactivating - he warned me about the potential of EBV coming back out from hiding and how he has seen it quite often. Every time he told me this I’d be like “you’re nuts!” but I really do believe it now.

My immuno said my excited immune system could be something very unremarkable, or that EBV has triggered an autoimmune issue. He is running a further battery of tests - I will update on any results. My CBC with differential is always normal (textbook perfect they say!) but I guess my blood work abnormalities after flow cytometry prompted a sense of urgency. Fortunately, I haven’t had to “push” for attention but my pcp was able to identify all the issues.

 

[Melissa89]

Just to note - I went for my annual check up late last year & he always commented on the fact that I’m the first patient he has ever seen that never had Epstein-Barr virus and how strange it was to have CMV igg but no EBV. 6 months later I came down with mono!! I’m sure I manifested it 😂

 

[Rufous McKinney]

months later I came down with mono!

Well, I sure met the EBV creature early on...but who knows- maybe at 10, that was my 9th bout of it. For some of us, we will likely never know what ran us over. Or how many times. And multiple factors. And no meaningful testing.

I commend you on the progress you appear to have made.

Pre-1963, I had tonsils, and they were chronically- exhibiting infections and strep. Its now too bad both my parents are passed, I cannot in any way determine if i was given antibiotics for all that. I will assume I was, and that likely I had alot of antibiotic exposure as a child. But not as an adult. I have taken them- maybe three times in 50 years.

 

[Melissa89]

@Rufous McKinney i have also had several antibiotic exposures since I was a child. Strep is one of those things that unfortunately needs penicillin - I’ve tried to fight it off myself without antibiotics and it ended up terribly. Usually with me on a double antibiotic regime via IV.

 

[Rufous McKinney]

@Rufous McKinney i have also had several antibiotic exposures since I was a child. Strep is one of those things that unfortunately needs penicillin - I’ve tried to fight it off myself without antibiotics and it ended up terribly. Usually with me on a double antibiotic regime via IV.

I know and hence my sympathy....as a child I did not want these things done to me. I was handed over. Loss of control. So a type of medical PTSD sets in and then keeps going.

I suspect I was not taken to the doctor EVERY time. I recall, on Mono Round 2, my fever of 104 going on for one month- my parents were going to send me back to school. I said- but I still have this fever...so instead- to the doctor where it was BOTH Mono (again) and pneumonia. (tonsils were by then gone) (appendix left next time).

Gee, was I a running source of revenue?

 

[Melissa89]

I suspect I was not taken to the doctor EVERY time. I recall, on Mono Round 2, my fever of 104 going on for one month- my parents were going to send me back to school. I said- but I still have this fever...so instead- to the doctor where it was BOTH Mono (again) and pneumonia. (tonsils were by then gone) (appendix left next time).
?

My issues were much the same! My mum took me to a naturopath and put me on a high dose of echinacea and vitamin d3 drops & that really helped.. she also bought me a humidifier to help with the chronic pharyngeal infections / viruses. But unfortunately every year I’d get a bad bout of the strep that would hospitalise me.

I also had walking pneumonia after mono. Apparently it’s quite common. I’m still very confused as to how and why this happened. I do know 5 weeks prior I was at a children’s birthday party & I foolishly drank from a cup I thought that was mine. My boyfriend joked and said “you’re going to end up with chicken pox or some unspecific children’s viral bug!” - knowing my tendency to pick up random viruses from travelling and children - he was right! Never did I think it would be mono.

I was at work and I recall this fatigue/low grade fever came over me that I’ve never felt before and swallowing felt like razor blades. The rest came on overnight - night sweats, swollen glands and I woke to a lovely surprise of tonsils covered in exudate. I don’t recall ever feeling that kind of exhaustion.

 

[Rufous McKinney]

My mum took me to a naturopath and put me on a high dose of echinacea and vitamin d3 drops & that really helped.. she also bought me a humidifier to help with the chronic pharyngeal infections / viruses.

You sound fortunate your mom had some good ideas to help you there...plus the humidfier. Those types of things can be quite helpful.

Childhood was just some continuous episode of home sick with it all. I recall the room and the Vaporizer....with Vics vapor rub (my daughter informs me this has caused liver failure in babies)....hours and hours of that. Burbling and boiling on the TV tray. Can remember gazing at the white spots on my tonsils.

Did you get many vaccinations, @Melissa89 ? There was less of that when I grew up, I got them, but only a few.

 

[Melissa89]

@Rufous McKinney Yes - I had the works! It was common for us to get regular vaccines with no questions asked. I have never had chicken pox/measles and the right of passage viral illnesses... Im sure now that I’ve said it, I will come down with chicken pox next week.
My doctor suspected mono based off the upper eyelid Edema I had (I could’ve sworn my eyes were almost swollen shut one day) which is apparently the biggest sign of mono.

 

[YippeeKi YOW !!]

Im sure now that I’ve said it, I will come down with chicken pox next week.

Not sure if it works via third party, but just in case the Universe is listening, am changing that to: "I will receive chicken box next week." Maybe McNuggets? New pet? Enameled box decorated with decoupaged chicken pics? Inquiring minds will want to know, so please post back as things develop

 

[Melissa89]

Not sure if it works via third party, but just in case the Universe is listening, am changing that to: "I will receive chicken box next week." Maybe McNuggets? New pet? Enameled box decorated with decoupaged chicken pics? Inquiring minds will want to know, so please post back as things develop

I will update on whether I have chicken pox or any variant of a chicken box 😊