Hello,
We usually have more people posting on the boards, but lately it seems as if there are very few responses. I apologize for this.I will share my EBV story with you. Last year, I started having a ton of neurological symptoms. I was worked up by over 20 doctors and was told by one of the neurologists that my EBV titers was very high. I have been going through workup for MS and will have more mris in September. From the information that I have received from others on the board, EBV is nasty virus that can cause all types of symptoms. I also have a low Vitamin D level as well. My titers are still very high and no other doctor can seem to give me any reasons as to why. I have a ton of symptoms and I have been on high doses of vitamin supplements. Nothing has seemed to stop the symptoms from persisting. There are others on the board that have gone on different protocals and had some major success, but there are still others like myself who have not found any answers regarding this illness. I am not sure if this board has a facilitator or not, but I do know that many people post on the CFS/Fibro board.
I'm new to this board as well. Was diagnosed with EBV about 8 weeks ago. I've been taking vitamins (Vit C, B12, B Complex, Selenium, Iron) and I go back to the doctor tomorrow for a check up.
I felt like I had the flu all the time, terrible night sweats, ran a low grade fever every day, lump in my groin area, pain on both my left and right sides.
I went through numerous pelvic ultra sounds (due to swollen lymph node in groin around Christmas), numerous CT scans, a PET scan because they suspected Lymphoma, laporascopic surgery to remove a cluster of lymph nodes, and a simple blood test found the EBV. Not one of the 5 doctors I saw ever thought to do a blood test until all of these tests and procedures found nothing terminal.
So now I have to have blood drawn every 6 weeks to check my EBV count and to determine if the vitamins are working.
With all that said, I feel your pain. Like you, I am negative for reactive mono but my EBV is considered high.
Hang in there.......I'm still going to look through this forum and see if there are some other answers. I've done some research on the internet. Everything I've read says increase all the B vitamins and Vitamin C.
Good luck!