Out of control Epstein Barr - any advice?

[Athene]

I decided to put this thread in symptoms - I regard EBV/mononucleosis as a co-infection. If anyone can think of a better place for it, please suggest...

Basically, I got mono in 1998 and was really ill for a year, then my immune system got it pretty much under control and I have not had any long flare ups of it since this year. I cannot talk more than an hour, or raise my voice at all, without losing my voive and getting a very bad sore throat and swollen glands in my neck and, when this shappens, I feel exhausted and rubbish for the rest of the day. I get the same symptoms if I over tire myself at all. I also have white lumps of pus on my tonsils all the time (definitely not candida, the doctor checked) which I don't remembr having the first time around with mono.

My EBV titers were measured in August and were

EBBV CA IgG antibodies 42.5 (normal less than 10)
EBBV CA IgM antibodies 6.7 (normal less than 10)
EBV EBNA antibodies 261.5 (normal less than 15)

The doctor said this shows an old, not recent infection, but since the titers are elevated, the infection is not under control. Does anyone know if these values are particularly high, medium? Anything else about what they mean?

And above all, does anyone have an idea what I could have done to make this flare up recently when it was always reasonably under control before? Anything I can do to improve it or, more likley, avoid making it worse?

Finally, are there already threads about EBV? I was convinced I had seen them, but I did a few searches and couldn't find anything.... those of you who know me already know I can never find anything when I do a search for it....

 

[Glynis Steele]

Hi Athene,

Just a thought, but have you been swabbed for a strep throat?

Glynis

 

[heapsreal]

antiviral valtrex should lower these itire values and improve your symptoms, i suggest google dr lerner as this is his specialty.

cheers!!!

 

[Athene]

Thanks for the ideas.
Glynis, I haven't been swabbed for strep, but I am taking tons of antibiotics... would they have got rid of that by now (4 weeks of minocycline and azithromycin)?

 

[Cloud]

I get the impression over time and many labs that my EBV waxes and wanes in and out of remission....maybe to do with my immune system integrity at any given point. I'm sure re-activation is associated with increased symptoms as well. I think that whatever it is affecting the immune integrity is the 64 ml dollar question. Yes, Valtrex I am told is the Tx for EBV. I put it remission when treating CMV last year with Vistide. Maybe it will stay there this time.

 

[August59]

I still have my tonsils and up until I was 30 years old quite frequently had the "white spots" on them. Unless my tonsils are red and/or inflamed (tonsilitis - which I had very often) I was told that it was going to be the norm for me and they almost took them out, but having tonsils removed at 30 is not a fun adventure. As luck would have it, I quit getting tonsilitis, but still get the white spots but not near as often. I was told back then that the "white spots" was the tonsils telling the immune system to get ready for attack. This is why they do not remove tonsils anymore unless they are chronically infected.

I also have chronically elevated EBV titers. My EBV EA, VCA and EBNA (IgG) are above normal. IgM were normal, but it is only high on the initial infection. My levels are expressed different than yours. Do you mind me asking what lab did your test? LabCorp did mine, but also had them verified through ViroMed. I'm pretty sure that I read that elevated VCA (CA) and EBNA (Nuclear Antigen) are indicative of re-activation.

Have you been tested for CMV, EV and/or HHV-6? (Just curiuos and I understand if you do not want to answer). I've some more info somewhere and I'll see if I can find it. I believe the recommendation is if EBV only is active then it's Valtrex. If CMV or HHV-6 is active also then it's Valcyte till CMV / HHV-6 titers drop then change to Valtrex??????

 

[Athene]

Hi August,
That all sounds complicated.
I do have HHV6, but the titers have nearly always tested very low since the initial, systemic infection. I take Lysine 1000mg daily and I am certain this is the reason, because the only time it has flared up was when I interrupted the lysine, experimentally.
I am pretty sure I don't have CMV though I cannot at this moment remember seeing a test result for it, so I am not certain where I got that idea.
EV - what is that??

My tests were done by the Borreliose Centrum Augsburg. They told me the results were definitely a reactivation not a recent infection.

I suppose I should ask my doctor about valtrex, though I wonder if it is safe to take it on top of all the other meds I am taking now? (minocycline, azithromycin, nystatin, artemisia)

 

[Glynis Steele]

Hi Athene,

It might be worth having a swab done, and asking if it's possible that the bactiera have become resistant to the antibiotics you are using. I think this is a check that can be done. Have you tried mouth washes, Athene. It might be worth googling an alternative remedy. I am a member of an autism list, and when a parent of a child with persistent throat infections asked for advice someone recommended the following: "the best remedy we have found is putting a tiny pinch of bicarbonate of soda (baking soda) under the tongue every couple of hours. It alkalises the blood and in an alkaline medium bacteria and viruses cannot survive". I do not know if this worked, but it might be worth a try. Can't imagine it will taste nice though!

Best Wishes

Glynis

 

[*GG*]

How about this paper: Proposed Guidelines for Diagnosing Chronic Active Epstein-Barr Virus Infection, American Journal of Hematology 80:6469 (2005)

 

[glenp]

Chronic reactivating

I couldnt get that link to open

My CFS physician sometimes suggests immunovir for chronic reactivating ebv. I have a friend that is taking it off and on and she finds it really helps. I tried valtrex but found the head pain too much

glen

 

[CBS]

Hi Athene,

Did you see Dr. Lerner present on EBV, CMV and HHV-6 at the CFSAC Science Day? It's the only bit of the entire CFSAC that I've watched. He treats EBV with Valacyclovir (very similar to Acyclovir). He reserves Valcyte for CMV and HHV-6.

His article Subset-directed antiviral treatment of 142 herpesvirus patients with chronic fatigue syndrome was published in Virus Adaptation and Treatment 2010:2 4757.

I have a PDF copy. I assume you can find it online. If you need a copy, feel free to PM me and I'll send you a copy.

I've been on acyclovir for chronic HSV-1 infection for a year. It has helped a great deal with a subset of my symptoms (and while I am better for having taken acyclovir, in my case, it is not a fix for everything).

Best of luck.

 

[rlc]

hi sorry to go of topic but this is a message for CBS i'm new to forums, wouldn,t have a clue how to do PMs so if CBS dosen't pick up on this could someone let them know i think this could be very important for them!!! Hi CBS i read in a post somewhere that you had a low cerulaplasmin resualt but had the genetic test for wilsons so you didn't have it i think this might interest you.
◦Falsely low ceruloplasmin levels may be observed in any protein deficiency state, including nephrotic syndrome, malabsorption, protein-losing enteropathy, and malnutrition.Also If ceruloplasmin and urine and/or blood copper concentrations are low, then the patient may have a copper deficiency. you said that you weren't positive for the wilsons gene test, i know with genetic hemochromatosis(ironoverload) they found over forty mutations that cause it and expect to find more, but labs normaly only test for two, so i looked into the possibility of there being other genes then the one they test for for wilsons and guess what it is possible read this http://www.ncbi.nlm.nih.gov/pubmed/18373411 if you haven,t already done the 24 hour copper test and slit lamp test for kayser fliesher rings it looks like it might be worth doing and maybe get kidneys etc checked as well hope this help all the best