Epstein Barr....Help!

[Scoot5980]

I am a 26 y.o. male who has recently been diagnosed with Epstein Barr. I have been doing a lot of research on-line about this condition but there is so much to read that it is very overwhealming and my doctor has just given the "basics". I currently have had swollen & tender lymph nodes in my neck and groin for 4 months, I get very odd headaches, I have a lot of sinus pressure, and I get very tired easliy. I have recently developed canker like sores under my tongue. My HIV status is negative. I have had my blood work drawn for the past 6 months and my white blood cell count has been elevated and all my other lab work is normal. My doctor recently has stated that I need to see a hemotoligist (sp) because of the white blood cell count and an ENT for my lymph nodes as they have stated that they are 99.9% sure it is nothing cancerous. I would like to know if the pain in my neck and now going up the back of my neck is normal? What are the other syptoms that common affect people with EBV? I guss I am just looking for some answers for people who actually live with this? Does it get better?

[PlateletGal]

Hi Mamaluv,

I'm happy that your daughter's physician is at least taking her condition seriously.

I can tell you that I have a good friend who recently married. His new wife, an R.N., was diagnosed with an immunodeficiency disorder years ago and as a result, she regularly gets gamma  globulin treatments. These treatments have been working for her and she's been able to lead a somewhat normal life. Well I found out recently that she had immunodeficiency problems right after she had mono and that her original diagnosis was and still is... Chronic Fatigue Syndrome due to EBV !

Here is more information on gamma globulin in chronic EBV (CFS) patients:

http://www.ahmf.org/database/ivigtreatment.html

[Padro46]

It would sure be nice to get some Doctors on this forum to help with the EBV problems perhaps even come over to the EBV forum.  Seems to be alot of differant answers in regards to EBV problems.

[mrbeansmom]

Wow! I just posted about strange armpit pain and now I was reading this thread and am starting to think this is what I'm dealing with. I was told years ago that I had "very high titers" for EBV, but like another poster, I was told that if I ever had it in the past it would always show positive. I have been so very tired all of my life. I always chalked it up to having so many kids, and being a foster parent as well, but to be honest I seek those things because they keep me awake and I am so afraid of succumbing to the tiredness. It's a very unnatural tiredness. Now I have this tender armpit. Hhhhmmmmmm.............

[mamaluv430]

My 25 year old daughter was just diagnosed with active EBV after two bouts with pneumonia and nearly annual severe illness from tonsillistis.  It is almost always her throat and lungs which make her ill. Other than the acute illnesses, she is athletic, healthy, very, very fit.  The doctor says that monthly "globulin" shots will prevent the immune suppressed illnesses such as MS, Rheumatiod Arthritis, and Lupus.  Is this a real treatment?  Do you have experience with this?  He showed us a lot of research but there have been, over the last 20 years, many reports that EBV was NOT the cause of these things. It could be a miracle if these shots boosted her immune system and "did the trick".  I am very interested in learning from all of you.
Thank you.

[zzzgirl]

I was diagnosed with Epstein Barr in January.  It has been so hard to find specific information although there are a million sites on it.  I fight fatigue, still need to sleep 90 percent of the day, glands stay a little swollen all the time but if I'm unable to get enough sleep they really swell and my throat and ears hurt along with headaches that get so bad it's hard to sleep even though I'm exhausted.  I worry because my symptoms are still so bad I can't hardly function.  We also can't find any information and can't get answers from the dr. about when it's safe for my husband and I to kiss.  At what point is it safe does anyone know.  I really appreciate this website and will look for a Naturopath physician.  Has anyone gone to one in the Dallas area?  Thanks for any help you can give.

[SickbutEmpowered]

I have suffered with Chronic fatigue since I was about 13 along with joint pain and weakness. Now everything has gotten a lot worse. I was diagnosed with active EBV by a Immunologist where I used to live. I wish I still was there so I could get better care. I also was diagnosed with T cell fighting defect and CVID (common variable immune deficiency). There is another treatment which helps some patients just like patients with immune deficiencies that are primary. It is called IVIG. Honestly, it was the most effective treatment I ever had. I still didn't feel that well, but no more lymph swelling, no more chronic infections. I was on it for about a year and then since I had to move out of state due to falling and a back injury, the doctor said see how I do and if I started getting really sick again to get help where we were moving. Well for about a year, at least I didn't have very many infections. So, if you have insurance...and even if you don't there are programs out there to help a patient with this if antivirals are not for you. You should have a full immune workup in my opinion, not just the viral assays. I too saw Dr. Lerner years ago, but at the time I had not been exposed to the EBV virus and the found nothing except some heart issues but hey he is pretty well known from my understanding.Three years later I had EBV. When I first got sick I had an internist who didn't like me very much because I was on pain management for joint pain and he had a problem with it. So when I developed swollen glands and a problem with lump in my neck he refused to treat me and a lot of other things. I have said this before, with all the good and caring doctors out there, I seem to have bad luck lol. I also have found very nice ones too. Maybe it is just my inquiring mind they don't like. I am not stupid just because I don't feel well. Me, now I have not tried the antiviral route. Has this helped any of you greatly? I am going to see an infectious disease doctor here where I am to get on IVIG again, because I just got over pneumonia and am fighting a bad sinus problem. Not to mention a darn skin infection which came out of nowhere. Life is always so unpredictable. Take care and Peace