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]

It certainly sounds like you could have CFIDS >> http://www.cdc.gov/cfs/cfssymptoms.htm

These are some of the symptoms listed on the CFIDS Association of America website... you may want to take their quiz, "Do I Have CFIDS" ?


Weakness and exhaustion, lasting more than 24 hours, following mental or physical activity
Unrefreshing sleep
Substantial impairment of short-term memory or concentration
Muscle pain
Pain in the joints, without swelling or redness
Headaches of a new type, pattern or severity
Tender armpit and/or neck lymph nodes
Sore throat

So which labs have you had done so far ? It is important for your physicians to rule out any other conditions first before diagnosing you with CFIDS (or any other condition for that matter). I read your posts about Candida --- the Candida free diet is helpful to many people who have yeast problems (most of these patients have CFIDS, fibromyalgia and other health issues). The research protocol I'm on uses medications (not research) to kill the bacteria in my tissues and cells that is causing the immune dysfunction. It is called the Marshall Protcol and they have a website --- you might want to check out their success stories.

[Soonerman]

Fatigue, tiredness, unrefreshed after sleep.  Poor memory and concentration, brain fog.  Irritability.  I don't really feel like they are headaches, but forehead feels tense/tight at times.  Muscle weakness/aching especially after exercise.  I used to lift weights, but I don't like my muscles aching for days so I don't anymore, and less endurance during sports, running.  No fever or sickness, but some mornings I do regurgitate/throw up clear fluid, sometimes yellow, only when brushing my teeth (so may just be a gag reflex thing, I don't know).

[PlateletGal]

"Is this true or should I consider the EBV a potential cause of the fatigue, tiredness...?"

Can you list all of your symptoms ? Unrefreshing sleep...? Muscle aches ? Headaches ?

[Soonerman]

I have been sick and fatigued with various symptoms for going on 4 years now.  Many tests and only things found were low b12, and positive EBV.  My doctor said the EBV was indicative of a past infection; of which I don't remember ever being really sick at any one point.  My doctor said that it would always be positive and didn't mean it was a current problem.  Is this true or should I consider the EBV a potential cause of the fatigue, tiredness...?  Also Safa1 I do have odd burning sensations in hands, legs, and even buttocks that tend to go along with red areas when I sit or have pressure on them.  The redness and burning disappear after awhile of removing pressure.  Is this sort of the burning you described above?  

[ladybugmandy]

please see dr. martin lerner or dr. jose montoya or one of the CFS specialists before its too late. i waited 14 years after my mono to get help and it looks like it might be too late for me. i listened to the docs around me who told me it would go away or i was crazy.. and now i am VERY sick.

please get help now. if you get on the appropriate antiviral there is a great chance you can recover.

sue

[PlateletGal]

You may want to check out Med Help's FIBRO/CFS board. I think you will feel right at home there because it is active and filled with patients' who have FIBRO and/or CFS symptoms.