It is really nice to connect here and read stories similar to mine! I am 57 years old and one year ago contracted Herpes Type II from my long term partner. Since that time I have experienced extreme fatigue, depression, digestive upsets, headaches, myalgia, arthralgia, inflamed lymph nodes, sore throats, low grade fevers. No testing from regular doctors resulted in anything "wrong" with me. In the last 10 years I have had thyroid cancer (in complete remission) and viral meningitis (hospitalized for 2 weeks). I had given up on drs and decided I was probably dying and they couldn't find what was wrong. I regularly thought I would have my children put "I told you I was sick" on my gravestone! Ha ha.
I finally saw a Functional Medicine Physician would dx'd me with Chronic EBV prior to testing me and she was right on the money. Since that time I have been taking LOW DOSE NALTREXONE. There is a book out there you can read about LDN and plenty of websites. It has been working for me; no cure by any means but definitely helps. I also take supplements; N-Acetyl-L-Cysteine, Aller C, VS-C (natures sunshine), 25mg Thyodine, Circum Eval (circumin) and 2k+mg Vitamin C per day (I use rose hips variety), 800 mg Magnesium, 200 mcg Selenium, and 10000iu Vit D daily.
I continue to have good days and bad days. The best advice I have been given is "do not run on adrenaline". I am working on regulating my days to include small walks daily (I used to be a very active athlete, but over the years have just not had the energy), standard bed times and rising times, and learning not to expect too much of myself. There are days when I sleep 14-18 hours. I am working on paying attention to what my body needs. I switched over last year to a Vegan diet (not perfect at it but generally am). I found I cannot tolerate dairy (especially cheese and yogurt), lots of breads (try to minimize or eliminate all together), and simple starchy foods (such as white potatoes). I still use some sugar but miminally. I eat a lot of black beans and chick peas and tons of veg. When I keep my diet this way, I feel better and have more energy and less bad days. If I keep a regular schedule and go to bed around 9pm, rising around 6-7am, I do ok. If I need a nap in the middle of the day I take it. If I had a regular job I would be BROKE, but I work for myself and so I am able to continue to make a living without having to go to an office every day. I do travel for work and find that I have to limit the number of clients I see in a day and when I am more than 200 miles from home I choose to stay in hotels.
Glad I found your story hippiechic! I just discovered I have Active EBV and like you almost lost faith in dr.s and wondered who I could talk with for help. Think I'll look for an FMP in my area