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Sunnie81 07-03-2012 06:50 AM

EBV and CFS?
I contracted EBV 2 years ago and have not felt "right" since. I have swollen lymph nodes that come and go and occasional hives. But the main issue I seem to have is my overwhelming fatigue.

I've seen several drs and specialists and had several labs, x-rays, examinations with no conclusive results.

My ANA came out ok so I don't have lyme disease or fibromyalgia or any of the other diseases associated with ANA; I tested negative to Bartonella - I did test positive for Rickettsia but after further testing, the dr. concluded it was a false positive.

My CURRENT blood tests for EBV are as follows:
Test: --- ----------- Result ---- Flag ------------ Reference
EBV to NA --------- >596.0 ------ H ---------- 0.0-21.9 u/ml
EBV to VCAP ------- >750.0 ------H ---------- 0.0-21.9 u/ml
EBV AB TO V IGM --- <10.0 ------------------ 0.0 - 43.9 u/ml
EBV AB TO EAIGG ---- 50.5 ------ H ---------- 0.0-10.9 U/ml

The infectious disease specialist I saw told me there is no such thing as chronic fatigue syndrome and that he thought I had depression. He told me that my titres will always be high because they were that high when I got the virus. When I insisted that I did not have depression he told me it was possible to have depression and not know it.

I am desperate to find some help. I have exhausted my financial resources. My social and work life has suffered as well.

Is it possible that I have CFS or chronic EBV?
Can I lower my EBV test results?

jmj53 07-12-2012 07:00 PM

Re: EBV and CFS?
I was diagnosed with EB over a year ago. It took almost a year to get over it and my Dr. told me that since the numbers went up and down when they tested and since it took me so long to recover that it might be chronic. She was right and it did come back just recently. She also told me that it often came with chronic fatigue. I do feel very fatigued when it is active. If it were me, I wouldn't complicate things with anti depression drugs. Find a new Dr. who realizes what you have and good luck!

Sunnie81 07-12-2012 09:11 PM

Re: EBV and CFS?
Thank you for your response. My general practitioner is supportive of me not being on antidepressants and believes I have chronic fatigue syndrome. The infectious disease specialist I saw was the one who told me there is no such thing as chronic fatigue syndrome and that i am depressed. He told me my labs will always be that high.

Should I ask my gp to retest my EBV IGG's? It's been two years now and it seems like there is no hope. I am so tired that I have to take a nap at lunch just to get through the day. i am also facing being fired because I miss so much work. Will it get better? Was there any protocol that you followed?

jmj53 07-13-2012 08:24 AM

Re: EBV and CFS?
My Dr. said that I can tell it is active without being retested. I will feel the fatigue and have a slight sore throat/swollen lymph glands. I rest often too and don't exercise if I have those symptoms. I try to eat very healthy, lots of fruits and veggies. I grow some and shop the farmers markets in summer. I take 500mg. L-lysine daily when I am feeling symptoms and when I feel better only take it twice a week. She also has me take 1000mcg of sublingual B12and 2000 units of D3 daily. When I am feeling OK I still try to eat well and then I exercise normally. I have noticed that if I up my exercise a lot at once it seems to trigger it. So slow and steady is my rule :-) I am 59 so it may be my age is the cause there?

Sunnie81 07-16-2012 11:47 AM

Re: EBV and CFS?
I was just prescribed 16 days of prednisone along with an antibiotic, and antihistimine/decongestant for a sinus infection and severe allergies. For the first time since I contracted EBV (2 yrs now), the lymph nodes on my neck and chest are gone! I am still feeling tired but not like I have been. Is this normal? When I get off the steroid in 2 weeks, will it make me feel worse?

jmj53 07-16-2012 02:58 PM

Re: EBV and CFS?
I don't really know but in the past when my allergist gave me cortisone shots they got rid of all the inflammationin my body for months. It isn't safe to be on them very often though .

One side effect of allergy and of antihistamines is tiredness.

rudyjack 07-25-2012 01:16 PM

Re: EBV and CFS?

Run, not walk, away from that doctor. You may be depressed, but if you are, it is because you feel bad and nobody can help you. It is not in your head. Find a doc who has knowledge of fibromyalgia, CFS, EBV and Lyme Disease. These diseases are not in our heads and don't let anyone tell you they are.

Sunnie81 07-25-2012 01:58 PM

Re: EBV and CFS?
Thanks rudyjack! I actually have not been to the specialist since he told me that I did NOT have an active infectious disease & concluding that I am depressed. Then he informed me that there was nothing more he could do for me.

I am now being treated by my GP but she does not know what to do either- at least she acknowledges that she thinks I have CFS but she indicated there isn't much that can be done. I honestly cannot afford to keep going to the dr. I am afraid I am going to lose my job and health insurance. I searched for a CFS specialist in my area and I was unable to locate one.

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