Treatment for chronic Epstein-Barr virus (EBV)

Awesome video. Thanks, John, for posting. I understand how frustrating it must be to be a woman and an illness be passed off as an irrational woman thing. However, what is even more frustrating and even more demeaning to me is to be a man with ME and made to feel less of a man because this illness is usually diagnosed in women. The lady in this video does a great job explaining the history of ME. It's just another way that the medical community is avoiding the medical issue of ME. I am a 54 year old male. I was finally diagnosed in 2013 with Chronic Epstein Barr Virus, Chronic Fatigue Syndrome (ME), and a host of many other things. I've had to leave a job that I loved and excelled at after 21 years, relationships have suffered, and finances are a mess. I am a man with a disease. THIS IS NOT A GENDER SPECIFIC ILLNESS!

Hello @airsleeper, I completely agree with you. I'm guessing there are a lot of illnesses that may fall into that category of occurring more with women than men or vise versa. I think it probably has more to do with different levels of experience, specialties and expertise of the different doctors involved. That's really why (IMHO) a person has to be their own advocate and learn as much as they can about their illness and ask lots of questions and not taking I don't know for an answer - that's a little over the top but I think a person has to be persistent. We patients may not have the medical knowledge but we do know how we feel and we need to make sure the doctor understands, pushing them to find the answers. I've had many of those discussions with my primary care docs because they change every few years in a family clinic. My last doctor wanted me to take statins to "help" lower my cholesterol and was quite taken back when I told her I'm not taking them, I will work on my diet to try and bring the numbers back into line. I told her one of the things I have learned about my peripheral neuropathy is that statins make it worse so why would I want to take them.

Anyways, I'm hoping all of us can find some answers and the help that we need. Have you found anything that helps you that you can share?

John

Thank you Kanna.....i appreciate your
comments. I am sorry for the multiple posts --I'm having a little trouble navigating on this site yet. Say a prayer that I can find the right doctor. Susan

John, thank you for the info...the video was very touching ....I'm considering trying to get an appt. in Jacksonville.

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.

I would recommend a functional medicine physician. I am also using LDN therapy and it seems to really be helping.

You might want to try a functional medicine physician in your area....

Super interesting the number of people who were DXd with Hashimotos' who also have Chronic EBV. I was Dxd with this in my early 30s and had radioactive iodine therapy. Hmm. Does anyone know if there is a link between Hashimoto's and Chronic EBV?

I have been researching both Hash and CEB...:i have been dx with both high antibodies of each. They seem to go together...a dr told me one time that my low thyroid made me suseptable to a lot of other illnesses.

It does sound similar. I don't have all of the issues you have but the recurrent infections is very familiar. (I am pre-diabetic and have sleep apnea)

I have to say that despite the last year being extra difficult, I just had a great month. I traveled to Europe wtih my family and was blessed with energy to make it through the trip. I don't know what to ascribe it to . . . many, many prayers by myself and on my behalf, more vitamin D, sweating out impurities, walking tons (which usually takes me down fast), the vitamins I started taking before and during my trip (I followed mostly what jenchaney727 posted above as well as liquid coenzyme Q--Costco sells this at a good price--Fish oil supplements--Wild Alaskan Salmon Oil--also at Costco, and a good probiotic.) Maybe it was all of the above. Who knows. It has helped me to build up my stamina and now I can excercise low/moderate intensity for much longer (30-60 minutes) without it making me sick.

I also looked at the reply posted below by akhippiechic and read about LDN therapy. It talked a bit about how endorphins help the immune system. Maybe the excitement of traveling did something too. I don't know, but I am making a point of getting outside daily, getting more exercise and trying to find ways to enhance my endorphins.

I know there are plenty more ups and downs ahead, but at least I am on a good track for now. I hope this helps and I am sorry about your suffering. It is so hard to find a dr. who understands. I haven't found one yet. I guess that is why we have to support each other.

Best Wishes,

Julie