Treatment for chronic Epstein-Barr virus (EBV)

Hi, I'm new to this group, But looking to see what you all think. I have had mono 6-8 times since 2005 well full blown cases. I'm to the point there has to be something they can do but not sure where or what to do. Thinking of seeing a immune doctor to see if there is something or some reason my body just can't catch a break. I have seen a infectious disease because they thought maybe cancer but every thing came back good with them test. I have seen a cancer doctor. I had parts of my colon removed and they thought maybe that was giving me infection and the infection setting there caused the mono but now I just think I'm gonna have it the rest of my life. But I'm praying that the immune doctor see's something no one has and maybe its just a week immune system and he can help. If your all like me I'm just over it and over how I'm feeling.
This time with mono, I started to feel better and then all of a sudden again it hits me hard. Anyone else have this happen? I'm suppose to go back to work next week but work at a school and don't know how I'm gonna function and really scared of all the germs and I'm not even over all of this.
My prayers are with all of us and a cure for this nasty stuff!

Hi @kimberly1973 So sorry you are dealing with recurrent mono. Yes, I can relate just like many others. I have been on a roller coaster ride the past 2 1/2 years. I know what it feels like to think you are getting better then BOOM! My initial EBV infection was most likely when I had a bad case of mono at age 21. The debilitating fatigue lasted 6 years. Then had a 1 year relapse in my late thirties and then at 43 began dealing with this current relapse. I have been seen by infectious disease, integrated medicine, GI, endocrinology, and of course my primary doc (who told me to exercise!). She's not my doc anymore. Anyway, last summer I realized I had to be my own advocate. I began doing research and reading all I could about EBV. I became a part of some facebook EBV support groups to find out what was working/not working for others. Some things people have found helpful are monolaurin (lauricidin.com), L-lysine, high dose vitamin C, anti-viral medication, dietary changes (avoiding gluten, eggs, dairy, sugar), limiting stress as much as possible. Low vitamin D, low iron, and low zinc levels tend to be an issue with those with EBV. Most people recommend seeing a functional medicine doctor or a naturopathic doctor. I don't have any of those around me, but I've done a lot of reading from doctors who have treated EBV and related illnesses like chronic fatigue syndrome and fibromyalgia. You may want to check out their websites. Rodger Murphree, DC (yourfibrodoctor.com), Kasia Kines, PhD (ebvhelp.com), the Mono Project (University of Minnesota), Jacob Teitelbaum, MD (vitality101.com). . I am also dealing with adrenal fatigue, which can be related to the EBV, so I just started taking a few supplements for that. Actually EBV is linked to so many things. It affects everyone differently too which makes it hard for conventional medicine to treat. There is not going to be one medication that cures it! But first conventional medicine has to believe that you are sick and most don't. Frustrating! However, I have learned not to give up hope. Recovery will not be a straight line upwards. It will be full of twists and turns and ups and downs, but eventually I will get there - especially since I know so much more now. I just have to find what is going to work for me. When this past round hit in 2016, I remember getting ready for work on the floor for several months. My husband had to do all the house chores. Then, I had to quit a job I loved a year later due to a relapse on a relapse. I literally could not even work from home on the couch with my laptop. Then, when I thought I was well enough to work part-time, I found a job I loved only to relapse 4 weeks into it. That was the straw! That's when I knew I had to do some research and be my own advocate! Please hang in there, see what's helping others, do the research, and get well!

@kimberly1973 , @mrmie

Hi Marianne I hope you are doing better. The monolaurin when I started it, my understanding was that you have to start at a low dose then steadily increase over time. Reason being is that it does kill the virus but your body has to process out the dead cells, if you take too much to begin with I believe you feel worse. thats my understanding. My new Doctor is great, she is sending me vitamins in the mail, I'm a veteran so thats how they come to me but nothing I've taken so far has made any difference that I can tell besides the mononlaurin and the rei-shi mushrooms. I'm not sure what adrenal fatique is but I do have just pure fatique and weakness, I can tell that its coming back slowly, I'm still miserable because my energy is so low. It's also very depressing so my Doc started me on Wellbutrin, I believe its the mildest anti-depressant that I know of and it helps with energy also. It has been about 2 months since I started fighting this disease and I have to say that I'm doing alot better. I actually ran out of monolaurin before Christmas and a week later I'm starting to feel bad again.

I TRULY BELIEVE THAT MONOLAURIN, REI-SHI MUSHROOMS, AND WELLBUTRIN HAS CHANGED MY LIFE!!! Just the other day I was sitting watching tv when I had this really funny feeling come over me...it was a feeling of ENERGY. I haven't felt that in so long that I didn't recognize it at first, and there has been 2 other days that I felt it, one was Christmas Day. I thank God for my new Doctor, she has been great, some Doctors don't think anything is wrong or can't be that bad especially when they can't find anything. She can't find a cure but she is really trying, she could tell that I was at the end of my life that I would have rather been dead then to keep living like that. A few months ago I started a goodbye letter, goodbye to the world because of the misery of this disease. Thankfully I didn't follow thru with it and now I have HOPE again. It's hard to stay positive with EBV but when you start feeling better you will start to have positive feelings again.

GOOD LUCK TO EVERYONE. MAY GOD TOUCH US ALL, AMEN.

Hi Kimberly, you sound just like me, a roller coaster. I feel bad then as I start to feel better well that doesn't last long, just miserable. I'm pretty new to this sight also but I did put a post up about 2 different herbs that have begun to change my life and maybe it will work for you or someone else.
MONOLAURIN. a mild herb that attacks the fatty protective shield around the virus. have to start with a low dose and gradually increase.
REI-SHI MUSHROOMS. another mild herb that boosts your immune system and will attack the vulnerable virus.

What we are dealing with is just a virus that won't run it's course and be done. It seems to have special powers inside of our bodies. It has nine lives!!! There isn't a cure....there is only different things people have tried and some work for some people and some for others. I have only tried these 2 herbs and it has only been 2 months but I truly haven't felt this well in 2 years. I'm still very fatigued but I haven't really felt bad but just a handful of days. I take a few other vitamins but can't say if they help or not BUT

I TRULY BELIEVE THAT MY EBV HAS MET IT'S MATCH WITH THIS COMBINATION OF HERBS!!!

Jeff: I'm so glad you're you are having good results from the monolaurin and rei-shi mushrooms. Mine just arrived a couple days ago. And your information here is going to help me get started. I have started acupuncture treatments for fatigue, etc. I did this 10 years ago and it really helped. This time I have had four treatments; the results are slower. But this week I also experienced renewed energy even though the fatigue still prevails. Thanks much for the information in your post. It's much appreciated. JBrian

Hi,
I'm new to this group. I was dx with fibro right after having mono. I was told in Sept '06 I had mono, which as far as I knew, was my first time. I'm 61 now. I started getting over it in Dec, but had a relapse. Late Jan, was still feeling awful so was sent to a rheumatologist who dx me with fibro. It took several months to feel better, but I got back on track. In about 2011 my fatigue and pain got worse and has been that way since. I had type A flu early 2017 and missed 10 wks of work due to terrible fatigue. Got back to work but then noticed more brain fog and making mistakes. More fatigue. No FMLA from May '17 to May '18 due to missing that 10 wks plus time off for vac and people working trades for me. Got FMLA back end of May this year. Got sick with a virus early Oct and am still out from work. I'm thinking my EBV gets going every time I'm ill/stressed. I'm supposed to return to work Sat. My Dr said "you just have to get back on the horse if you get bucked off". My reg bloodwork was all ok. I'm hoping if I ask for the EBV test, he'll do it. All my rheumatologist does is to keep trying to keep shoving higher dosages of Lyrica and Cymbalta at me. I actually don't take the amounts he prescribes, but take as little as possible. Am worried about having to quit my job and trying to afford ins. And disability takes a long time to win. So I'm trying to see what's working for others on here to try a new approach after 12 yrs of fighting for my Dr to hear what I'm saying. I'm going to try an ND. I had one for 15 yrs and she retired, so on to a new one. My daughter and her 18 yr old son seem to have alot of the same issues with her having swollen lymph nodes and terrible pain and him having one virus after another and fatigue and missing 2/3 of high school as straight A student. So we all will have to have our EBV checked.
I'm so happy to have read all of this thread way back for a few yrs! Lots of insight and gives me hope for the future! So tire of being sooooo tired!

https://www.cdc.gov/me-cfs/
https://ammes.org/what-is-mecfs/
Do you have ME/CFS? Mine was caused by EBV/Mono and worsens with any hit to the body (surgery or illness)

I find what you said about any hit to the body interesting. My EBV showed up 8 months after I had spinal surgery. The pain was horrendous for eight weeks. Even during sleep, I was biting my tongue and inside my cheeks from the pain while "sleeping." My fingers were contracted. I could not even do basic hygiene or toliet care. Doctor did NOTHING! It happened this time last year. Not a day goes by that I don't think about it and am fearful. Checking to see if Kratom is really good for pain.....just in case if there is a "next" time.

Hi, I’m new to here after researching profusely for the last 3 months which I can only describe has been a living hell. Out of the blue I fell ill with a viral illness (terrible sore throat, excruciating muscle pains, joint pain, fever, neurological symptoms and chronic constipation and an unrelenting bout of thrush - whether this Is related to ebv I don’t know? Has anyone else had similar experiences? Doctors performed numerous tests which revealed chronically low vitamin D, low wbc and negative serologies for HIV and other immune disorders. All other metabolic panel tests came out normal including Thyroid, liver kidney function and iron levels etc. I am at a total loss as my GP has presumed it’s ‘all in my head’ and prescribed me antidepressants and anxiety medication to which I am quite offended!! I am still suffering from ongoing joint pain, debilitating fatigue and body pain which travels to various places each day. I will add that I have PCOS and since this episode I have also experienced worsening symptoms such as a burning pain in my left ovary which is also confusing again, whether it is related I don’t know? Please feel free to share your experiences or offer advice as I simply do not know where to turn and it is really starting to negatively impact my life.