Treatment for chronic Epstein-Barr virus (EBV)

I have had problems too. I have to write CFS/ME in the search box every single time, but the discussion group disappears after a while.

Thank you for asking, but sadly I am not better now. I do have some good days, but no consistency, and then many bad days. It is a heartbreaking way to live. I have been to the Cleveland Clinic three times. No help whatsoever. Doctors are not understanding and don’t give any hope or encouragement at all. Over three years and counting….

I am so sorry to hear that. I had hoped you had gotten better. I agree. I think it is a very, very difficult way to live. But if you have had CFS for ''only'' three years and you take it easy, and try to avoid all stress and worries (easily said than done) you might get better. I have had it since the year 2000 and when I think of all the interests and passions I used to have and the way my life has turned out ... yes, it is heartbreaking. It is so sad that you have been to the Cleveland Clinic and that even there you could get no help. It truly is discouraging. I guess if we had a broken arm, or leg, doctors, and people, in general, would understand. In the course of these years, I have unfortunately found out that CFS makes us invisible.

I can tell, chistiania, that you totally understand what I am experiencing - along with too many others in the same boat. I am so sorry that you have lived this way for 22 years. Yes, we are invisible. Avoiding all stress is impossible, of course, and especially when you have lost your career due to illness and your financial status has changed dramatically. Broken bones heal, heart attacks can be survivable, even cancer if caught early enough, and people go back to their regular lives, but we don’t. And how do you keep your heart healthy when you can’t exercise? I am living on hope that someone somewhere can help us before it’s too late for me. I’m not getting any younger! Sorry, but it feels good to vent to others who understand. Let’s keep the faith that help is coming.

What were the supplements, please??

My grandson who turned 25 has had epstein barr for 7 months and he is still disabled. I gave read about supplements to treat the virus but it's confusing. I wondered about lymphatic massage to help drain the inflamed glands.
Thanks,
Marcia

Hi, I’m coming to this group for help because I’ve reached a dead end. 3 years ago I found out about my Epstein Barr diagnosis. I have since been labeled as chronic. I have fever, headaches, rashes, extreme sore throats, and debilitating fatigue 3-4 days a WEEK. My fevers range from 100-103.5 degrees. It has been 3 years and my EBV IGG levels are still over 500. There has only been a 4 point decrease in my numbers over this time period. I have cut out all dairy, red meats, peanuts, white flours, white sugars, corn, potatoes, and farm raised fish which has substantially helped with my headaches. I have seen 2 different infectious disease specialists who seem to know less about my disease than I do. Within the last 8 months, I have regressed. I now have stomach ulcers, GI issues, and impaired hearing related to CEBV. I take B12, multivitamins, and probiotics. I just need sim help.

Hello,
I have EBV, Celiac Disease and Grave’s Disease. I got COVID two years ago and it triggered my EBV. I had not had any issues since I was diagnosed about 12 years ago. I have been having lymphatic drainage massage which seems to be helping. However, after the first 3 times felt very sick (nauseous) but than felt a lot better. It definitely was helping drain inflammation. I also have been getting high dose Vitamin C IV and UBI. (Riordan Clinic in Wichita, KS explains UBI and Vitamin C on their website) It is taking time but everyday feeling a little better. These all helped be get better the first time I was diagnosed so counting on it again. Please give your Grandson support because EBV is exhausting and can lead you to despair because you are so tired of being sick. My family has been support and God gives me the strength. All my best

Yes! I have finally found someone to ask… Yes my EBV became reactivated with Covid. I have been out of work for two years now. I have started to try lysine but it makes me extremely nauseous. Does this go away? Also how much lysine were you taking?
Any information you can give me would be greatly appreciated. I have been sick for so long!
Thanks so much!

Lysine has been working great for me, take it on a full stomach and I take it with Fish Oil