Discussions By Condition: I cannot get a diagnosis.

EBV and CFS

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Anonymous
  • June 12, 2007
  • 11:58 AM

Keep in mind that i am a 19 year old university student, usually fairly healthy until last year.

I was recurrently sick with bouts of symptoms last year (may, june, august, september), which my doctor presumed to be glandular fever. He took repeated blood tests and my full bloods and LFT's were all normal. Later in the year (in september) the symptoms recurred and were more severe than every other time. I couldn't access my usual gp as he himself was sick and off work at the time. So instead i visited the local ED.
After various tests they concluded i had abnormal liver function and pneumonia. The dr there told me that i was an alcoholic with a high chance of hepatitis and needed to have a back up blood test to rule hepatitis out. She also prescribed me Diazepam for the 'expected' alcohol withdrawals.
My follow up bloods (and ultrasound) ruled out hepatitis or any other liver problems.

Since this time (Sept 2006) i have experienced severe fatigue/exhaustion both physical and mental (effecting my concentration, memory and attention span), insomnia, waking up feeling like i need more sleep after 10 hours of sleep, shortness of breath and lethargy on exertion. Muscle fatigue and muscle weakness, joint and muscle pains and recurrent viral infections (i would get a cold that lasts 4 or 5 weeks). I cannot remember a time i have not had a sore throat, swollen glands, a cough or a runny nose. I have also been far more moody and emotional than usual which i think is due to the frustration of being sick day in day out.

In march i went back to my doctor as the exhaustion was really affecting my study and physical ability to attend classes at uni. He finally decided to do all sorts of bloods including Epstein-Barr Serology (which he hadn't done before) and everything came back normal apart from the EBV. Therefore my 'symptoms' definately was glandular fever.

Since then, until now i have still been experiencing the same symptoms, but now i am getting frequent headaches (i think are migraines) that i never had before. The symptoms of which include pain which gets worse with time, usually on one side focussed around the back and side of my eye, extremely painful as i can barely move, sensitivity to any sound and bright lights. With the photosensitivity lasting a few days afterwards. Some days i wake with these headaches and go to bed with it, waking up the next morning still having it. Pain killers (paracetamol and/or ibuprofen) just reduce the pain slightly for a short time period. The other day the headache pain was so intense it hurt worse if i moved any of my facial muscles.

I guess what i am wondering is where do they draw the line between post viral fatigue and chronic fatigue syndrome? This has been going on for 9 months and i don't really feel as though it is improving.

Reply Flag this Discussion

6 Replies:

  • It depends what you mean when your EBV was not normal (i.e. which antibodies were identified). If it was just a 'positive' then this might relate to a previous infection (and positives are VERY common). Chronic fatigue is often called post viral fatigue (and ME). I think six months is usually the limit above which chronic fatigue is determined. I have to say that this sounds like what you might have.
    Anonymous 42789 Replies Flag this Response
  • Dear original poster, Chronic Fatigue Syndrome is known as Myalgic Encephalomyelitis. It is also known as the following:Akureyri Disease Benign Myalgic Encephalomyelitis Epidemic Myalgic Encephalomyelitis Epidemic Neuromyasthenia Iceland Disease Raphe Nucleus Encephalopathy Royal Free Disease Tapanui FluPost Viral fatigueglandular feverand probably others we haven't found yet in our searchesThere is a lot of information in this forum as to how to help heal yourself. Be Well
    Anonymous 42789 Replies Flag this Response
  • I cant remember what they specifically were but the one for 'past infection' was positive and the one for 'current infection' was borderline. Whatever borderline is. Considering it can only really be positive or negative, so how do they even come up with borderline?I was re-tested 2 weeks or so later and it came back the same again.
    Anonymous 42789 Replies Flag this Response
  • I am so sorry to hear you are suffering like this. I had very similar symptoms throughout medical school of all places, and it took me a long time to graduate given all the fatigue and headaches. To make things worse, my doctors thought I was somaticizing becasue I was a med student.It sounds like you definitely meet the criteria for CFS, although i hate that diagnosis because it is ill-defined and in the meantime, you miss out on life due to the disabling symptoms. I was also EBV positive, but for a past infection (they can tell if the infection is past or current by looking at your antibody patterns). I don;t know if your symptoms are from EBV or not. Only your doctor can say, but doctor's don't always diagnose correctly.As it turns out, I was eventually diagnosed with a rare disease called Hashimoto's Encephalopathy. The diagnosis was made after a neurologist (my 8th neurologist, hee hee) tested my thyroid antibodies even though my thyroid hormone levels were normal. I'm not saying this is what you have, because I don't know you. It might be helpful to rule it out, though, because it is highly treatable with steroids.I wish you the best of luck. Some helpful sites might be the CDC chronic fatigue site. There are even better ones in the UK- just google "chronic fatigue syndrome/myalgic encephalomyleopathy". The UK takes CFS far more seriously and there is even someone looking into whether CFS is actually HE (so far they look like two distinct diseases).Good luck and know that you are not alone- your constellation of symptoms is a common pattern, but we have not solved CFS yet.-e
    Anonymous 42789 Replies Flag this Response
  • To the med student. Yeah well i actually study nursing! It was very difficult for me to survive my recent 3 weeks in hospital placement with the early starts and all. Especially when i was sick the first week with some kind of throat infection. But somehow i did it...
    Anonymous 42789 Replies Flag this Response
  • If the one for present infection was borderline, then the chances are that you did have glandular fever recently. It sounds like the antibodies might be still relatively high though. Getting over glandular fever can take ages and I think you need to discuss the possibility of chronic fatigue with your doctor.
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.