CAEBV need info and help

[DFWGirl54]

diagnosed 3 months ago with CAEBV and active cytomegalovirus.
would appreciate any info and help.
Not sure what direction to go next. I need a plan of attack.

I am middle aged adult. came down with an acute mono like illness in July of this year. HCMV and EBV
My biggest problem today, is the extreme fatigue. I am wiped out. On a scale of 1 to 10, I am a negative 5.
also, need info on doctors, treatments,etc.

would love to talk to anyone who has been dealing with this disease!

[sukia]

there's a difference of caebv and cebv.  Unless you tested positive for EBV DNA quant pcr, you do not have caebv but rather cebv.  big difference of life and death.

[sukia]

What is the value of EBV DNA load?

[caebvguy]

Agreed! I also have CAEBV and live in the US. It DOES, although rare, hit young to middle age Americans. The anti-virals do not work. There really isn't much treatment or research being given. I do know of some people trying Ampligen and seeing results, but it is not approved and insurance (esp. Medicare/Medicaid) will not cover it.  Part of what makes me tired is explaining to people that YES, I DO have CAEBV. YES, I AM SICK.  Geez.

[turbo880]

hi,i think im in same situation,20 days ago i was diagnose with ebv,but i think i have cytomegalovirus to.i think i need to ask for blood test,im felling bad already 3monts and dont now if  i can get buck to normal life.would like to ask about ur health,how u filling now?  

[mommygirl242]

how dare you question this poor woman's diagnosis....are you at all aware that this rare and fatal disease also affects americans.....such as me....get your facts and don't patronize and act like its not a big deal.....!
It may take years and your body will take care of it? Did you consider an underlying immunity issue that creates the chronic active stimulation? Tell that again to those of us who are dying slowly! I wish I knew where you lived to pay you a visit you POMPOUS piece of sh*^t!!

[9DodgeFan]

Hi, I'm not sure what ESR/CRP means.  It doesn't ring a bell for me, so I guess I can't help you out on that.  Sorry!

[DFWGirl54]

Hope you are feeling better. Thanks for responding..sorry for the delay in getting back to this site.  glad to hear you are getting some of your energy back. Did you do anything special to get your energy level back up, or did it just happen...? You said you have an IGM response..vca, ebna, or ea? my IGM does not seem to be working/ only IgG...maybe it will wake up. .. Are your symptoms getting any better, did you have IM, or was yours reactivated.? sorry it didn't go away. are you able to work.?

.My rheumatologist gave me a good way to deal with joint,and mucsle pain. Fill the bath tub as warm as you can deal with, and add 1 cup of Epsom salt. soak for 15 minutes..does wonders She said to do it morning and night..ha, I manage to do it about twice .a week.

I have a lot of the same questions you asked above..I had two different doctors explain it to me from lab tests....they actually agreed with each other...scary.
My primary care sent me to an infectious disease dtr.,gastrointologist, and opthmalogist,.said I needed more help than he can give me.

I have one huge question for anyone..plz tell me if you ESR/CRP (sedimentation rate/blood), went crazy.  

Thanks for the good words and encouragement, i appreciate it.

Happy Holidays, and HAPPY NEW YEAR!
Take Care!

[chris440]

Well how haave u been feeling DFWgirl i have been positive IgM,IgG , the last 7 months and have beev praying for a miracle i have to say that i have been feeling somewhat better fatigue is not that bad i can get out of bed and do things now ,still im facing on / off symptoms of itchy red rash that comes and goes like hives ,skin that burns, joint pain and pain on my left foot tingling on my shoulders and shortness of breath ... hope you are feeling beetter soon .

[9DodgeFan]

I was just looking back over your post, and I guess I missed the part where you said high CMV as well, and I can see why you're being thrown for such a loop!  One of those viruses by itself can be a monster, but both at the same time.... wow!  Have you been going to just a general doctor, or have you gone to an infectious disease specialist?  I have the feeling that what you're dealing with is a bit out of the league of a family practice physician!

[9DodgeFan]

From the information you've provided, it sounds more like an EBV re-activation than an initial bout of mono, although they both present very similarly.  Given your age, that makes it all the more likely this is a re-activation; it's possible you never acquired EBV in the past, but the odds are very much against it.  Chances are when you got it in the past, you weren't sick enough to be tested for it, so you wouldn't have had any way to know it was EBV.  Either way, aside from lots of rest, there isn't really much you can do.  Eating as healthy as you can should help, but it still can be a very long process.  Unfortunately, at least from what I've heard, the older a person gets, the more difficult it can be to deal with this virus.  Anyway, don't be afraid to ask any more questions you may have!

[sporque]

Unfortunately antivirals aren't very effective against EBV..Unless you have some issue, your immune system will take care of it in time..If you are older, your recovery can be much longer than someone who's younger..Also, Mono in older people does not always present with the same symptoms as in adolescents.  But it's still just mono...
I wouldn't add much, other than time for your treatment.
Just eat and rest, and let your immune system slowly build ups it's tolerance again.
Even if it takes a few years, it will happen..Trust in your body:)

[DFWGirl54]

Correction
EBV vca IGM negative..
High early Ag IGG,
these tests were after three rounds of anti-virals,

[DFWGirl54]

wow, thanks....I said the same thing..(you must be mistaken)
Primary EBV High IGG, and IGM, no EBNA, affected cells T/NK, not B
Higher IGG Cytomegalovirus (HCMV)
Acute mono like illness, yes
co-infection...AND, some people have been able to get the viral loads down.
Now you see why I need a really good action plan.
P.S. I am Caucasion, (sp?)USA,  just somehow never got the EBV virus when younger.
go figure.  

[sporque]

You must be mistaken.  CAEBV (Chronic Active Epstein Barr Virus) Is a rare FATAL, in most cases, disease that is more prominent in Asian countries.
Are you speaking of mononucleosis?