Ahh Need Help!

[icesktr189]

So I mentioned i was positive for Epstien barr virus. Also horrible problems with sinuses for almost a year (very dry,tons of pain). Right now i dont know if i have very bad POTS or EBV is acting up. I feel extremely dizzy, cant eat, headaches, nausea, feeling hot/cold, diarrhea, the whole nine yards. oh and fevers

Does anyone know much about EBV? Whats the difference between that and mono? I have tried to search it but still dont understand. How long will i feel this bad? i know no one can really say, but will it go into remission? I feel like i can barely stand right now. Are sinus problems normal with EBV? Sorry for the post, i just feel terrible and have really bad depression/anxiety from all this. Thank you for reading

[janiedelite]

Hi Dani,

I had mono in 2006 and have had intermittent sore throats ever since. I asked my primary doc if she'd test for chronic EBV, but she said no (I think she said there wouldn't be anything that could be done about it and that EBV test results were difficult to interpret). That's fine with me. I kind of assume I've got some degree of chronic EBV. I haven't had sinus infections til this year in July. It was resolved with a 10 day course of Bactrim. Then I got another sinus infection in early September and it hasn't got away in spite of a z-pack for 5 days, and 17 days of Bactrim. I'm seeing an EENT on Friday. I may ask if there's an EBV connection to my chronic sore throat, although I also have burning mouth syndrome as a part of my small fiber neuropathy and the sore throat seems to flare along with the mouth pain. Aaaah... what a mess!

When I asked about EBV testing, my doc said that nearly everyone has experienced the EBV virus at some time and that leads to false positives (in her opinion). The initial infection is known as mono and is diagnosed with a mono spot blood test (mine was positive in 2006). The EBV virus is what causes mono. When you first get mono, it is well advised that you get all the rest that your body requires because relapse is very easy to bring on. That mono spot test is only positive during the initial infection, after which there are other markers that can sometimes be used to determine if you still have active, but chronic EBV. However, there are arguments that say that those markers are unreliable as to determining whether or not that person's EBV virus is active or dormant (meaning, still in your body but not causing illness). The EBV virus goes dormant like the chicken pox/herpes zoster virus, except that the chicken pox virus resides in your nerve endings and the EBV virus resides in your lymph system.

There are docs who are trained in reading the EBV test results (maybe an immunologist or infection disease doc, or rheumatologist?). Do you know which EBV tests were run? Were the results explained to you thoroughly?

Regardless of the EBV test results, you still have to deal with your symptoms as they are. And there are days when I feel just like I did when I had mono (often I feel worse). But I can't say I have chronic EBV because the tests were never run.

[sue1234]

Dani, when I had mono back in 1978, I had vomiting but no diarrhea. I don't think diarrhea is a mono thing. My daughter had mono a few years ago and no diarrhea for her either.

Thankful, with your burning mouth, have you had your B-12 levels checked? Have you tried a b-complex to see if it helps?

[janiedelite]

Thanks, Sue! I did have my B12 levels checked and they were normal, but I still take B complex supplements. The burning mouth part has just been attributed to the small fiber neuropathy. Neurontin does help it, as well as cold drinks.