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Chronic Fatigue Syndrome
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Posted 10/7/2005 3:36 PM (GMT 0)
Hello, Im new. I found out a week ago today that I have C.E.B.V. Chronic Epstein Barr Virus which my doctor says is the same thing as Chronic Fatigue Syndrome. I am going on 14 months with this after I caught mono from my now 10 year old daughter. After 8 doctors and many test and tonsil removal at 42. My new doctor did a Epstein Barr test on me which came back positive on the IGG part. Does anyone else out there have this??????? My doctor says she sees this maybe once a year so I know it's kinda rare. I had my first MRI yesturday because I feel puffiness on my left side of my neck and always have, at least for 14 months now. Feel tired, achy, feverish. Some days are good and I almost feel normal but some days I cry because I hurt and feel so bad. Once in a great while I will feel normal.
I would like to chat with anyone going through this, I can't be the only one with a positive IGG!!!!
Thanks.
Posted 10/18/2005 4:49 PM (GMT 0)
I am in the same situation as you. Currently awaiting lab results from my wonderful Rheumy to rule out RA or Lupus. May I ask what your EBV antibody level was? Mine is very high as well at 167!!!
Posted 10/23/2005 5:11 PM (GMT 0)

I'm a 45 yr old male firefighter who most of last year felt fatigued a lot and wanted to sleep a lot, but it was restful sleep.  In Feb of this year, I had severe flu-like symptoms and my doc thought it was viral meningitis but didn't do a puncture to confirm and said it would go away in a few days, and it did but left me with severe vertigo.  I've always had severe headaches but was also having problems with my vision.  The vertigo continued to worsen and I had ear tubes put in both ears 4-20-05 and went downhill from there.  This resulted in chronic infection in both ears and turned into mastoiditis resulting in a mastoidectomy and tympanoplasty in June followed by 5 weeks of IV Rocephin daily which gave me C-diff that almost killed me.  I've lost most of my hearing and the vertigo is getting worse and in Aug, I started to have unbelievable chronic fatigue and aches and pains that feel like the flu X10.  I don't sleep well at night because the pain wakes me.  The pain is migratory and always moving all over my body.  I've been to so many doctors and most blood work comes back normal.  My infectious disease doc said my gamagobulin was out of range as if I've been fighting a chronic infection for a long time and even gave me an IGG treatment, but for $4,000 I coudln't see any difference and didn't take anymore.  I had Rocky Mountain Spotted Fever in 1983 and almost died with that but did get over it faster than this.  This just lingers and lingers.  I have most symptoms of lyme disease but a test came back negative.  I was just recently tested by an alternative doc who told me I have active Epstein-Barr virus, but my neurologist says that they aren't sure if the virus becomes active because of some illness or if it actually causes the illness itself.  I seem to be getting worse and am trying everything possible including supplements and vitamins and better diet but not making any progress.  I've been temporarily disabled since May.  I feel as if my body won't heal correctly.  I had a shot over 2 months ago and it still hurts as if I had it today.  I've also got a hole in my eardrum from the surgery, that won't heal and has been patched and still didn't heal and will need another surgery next month to correct that.  This has also dramatically affected my memory and vision is 2-dimensional.  I had several head MRI's done when I first got sick because of the ear problems that only showed the mastoiditis.  I'm open for any suggestions.

Thanks,

Ken

Posted 5/17/2008 3:02 AM (GMT 0)
well mine was 2704 so what do you think that means
Posted 5/21/2008 7:59 AM (GMT 0)
I am usually over at the Lyme board, but do come here once in awhile as Im also chronically fatigued.  My EBV was also very high-2043. yes over 2000! You might want to get on valtrex cause that can help get the viral load down.  There are also a few herbal supplements that can help with this virus as well. 
Posted 5/8/2009 5:07 AM (GMT 0)
I have had EBV for 14 weeks, ( bedridden for 11 weeks) and have thankfully started to feel a bit bettter and wanted to share what I've done in order to get back to a semi-normal life. I have been completely frustrated with the treatment for EBV....doctors just say, "Go home and sleep". This is not a good enough answer for me. I am fortunate enough to have good health insurance and I just wanted to share and hopefully help anyone who is suffering from this virus. I searched and searched for answers and believe me...there is really not much out there except for out dated and conflicting advice.

First, I have never in my life experienced anything like this virus and my struggle is still continuing. Thankfully, the bad days have started to become less and less. But, in the beginning, I really thought I was dying or going crazy. For the first 2 weeks, I could not move or eat. I finally got the diagnosis when I went to an internist and begged him to test me for everything. My EBV was 1522 and DHEA was 1342. I'm a 37 year old healthy female, the only problems I was having before this were hormonal issues and I was also in severe pain after working out (of course, people responded "you just need to work out more".....in my case, not so.)

My second lab test (about week 5 or 6 of virus onset) the EBV elevated to 2338. I finally broke down and started Valtrex, and it honestly helped ME alot. I wish I would have gotten the precription for Valtrex at the first diagnosis, but I'm hard headed and I'm not a big supporter of pharmaceuticals. But, with all honesty, they have helped me.

The early symptoms I had:
*fatique so bad, like the blood in my body wasn't even flowing; a complete energy crisis
*Dizziness & tunnel vision that both lead to nausea
*Extreme Muscle pain (especially in neck, back and legs)
*Insomnia
*Heart Palpatations
*Unable to think, eat, almost dulsional
* I had to force water into my body
*Weakness and tightness in muscles (for a week it was hard to walk and when I did get up it was like I was drunk)
*Migranes
*Major anxiety
*Sensitivity to noise and light
*Heartburn, constipation, severe stomach aches
*ear aches & buzzing in ears
*Mild fever
*Lots of tears, frustrations, bouts of anger

I'm about 75%. I still suffer from muscle aches and tightness, spasms, migranes and fatique. But, I am not bedridden everyday like I was for the first 11 weeks.

I read the book "From Fatique to Fantastic" and I'm following the vitamin supplementation in the book. It's alot of pills to swallow, but I will to anything to kick this virus. I do believe it has helped. I had low Vitamin D, so also I've added it 2 X a day. I would highly recommend Vitamin D if you are in bedridden. I wish I would have started it in the beginning of the virus.

I am doing restorative yoga just about everyday or when I can move or feel like it. I started a few dvd's about 4 weeks before I got sick and whenever I can do 5 minutes just to stretch my muscles I feel better. I highly recommend "Candlelight Yoga" and "Meditation for Beginners" they are both gentle and relaxing. I rented them from Netflix, then I liked them so much I bought them both from Amazon.

I am taking the following RX:
AM: Wellbutrin, Celexa, Valtrex (500 mg)
PM: Valtrex (500 mg), Ambien CR (12.5 mg)

Before I got the EBV onset, I was taking no rx drugs.

I have also changed my diet in MAJOR ways. I flew from CA to Portland, Oregon 4 weeks ago, around week 10 of virus (it was an very painful & tearful flight). The doctor did a blood test to find foods that were inflammitory and that my body was reacting to. Among the list were thing that I was eating alot of and I thought were healthy. On the list were eggs, all beans, flax, dairy, and others. I cut them out and I'm not having the bad stomach problems and pain. I know this is not for everyone. But, I am determined to not eat anything processed or in a box. This is out of sheer determination to heal my body and be healthy.

I now only ocassionally eat meat and my diet consist of mostly veggies and fruit. I use our juicer ALOT (atleast once daily, mostly 2 times a day). And...those of you that say eating healthy is expensive, I swear, it's not! At Costco, you can get in HUGE amounts organic carrots, celery, grapes, apples, oranges, berries, kiwi, plums. I am able to load up for around $55 for the entire week. This also provides enough fruit and veggies for my husband and daughter.

I hope that anyone that is reading this this that has EBV is surrounded by love, compassion and understanding. It is an unexplainable experience and I wish I could say that it has been easy. My only advise is to listen to what your body is telling you and give it what it needs. I can't tell you the things I have done will help anyone else, but I have reached out to many doctors and I recieved no real answers. I wasted alot of energy to try and find "the answer" at a time when I had very little energy available. I have a new found compassion for people with chronic illnesses. I hope that by sharing what I went thru, I can help anyone who is able to find this information.
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