Treatment for chronic Epstein-Barr virus (EBV)

My 15 yr old son was diagnosed with mono 5 months ago. He continues to suffer with chronic fatigue, and headaches. 3 years ago he was diagnosed with Henoch Schonlein Purpura which seems to have significantly compromised his immune system. That was three years of chronic fatigue, joint pain and migraine headaches. He was feeling almost himself again when he came down with Mono. I have found medical journal info on a possible like of Epstein Barr and HSP, but they tend to discuss EBV being a trigger to HSP not the other way around like my son has had them. I am at a loss and it is frustrating to continue to see doctors who have no answers. He has found that eating 3-4 coffee beans takes the headaches to a reasonable level. No cure for the chronic fatigue. He takes vitamin D with K, fish oil and has a high protein high fat diet. Vitamin C gives him bowl troubles. He has been able to gain back some of his weight loss, but no increase in his energy levels. I may try again an adrenal supplement which seemed to help slightly with the lack of energy. He still sleeps 14 hours a day and hasn't been to school in 4 months. I feel for all of you going through this personally or with kids. I continue to hear from others who've dealt with this virus that it will get better. It's just hard to wait and meanwhile watch my son's youth slip by without him.

My daughter also is showing adrenal fatigue, orthostatic hypotension, heart rate variability issues, GI issues, headaches, low temperature. I believe she has chronic EB, but her physicians after diagnosing her 1st with have EP antibodies, then 2nd having mono, then 3rd reversing and saying they thought she had HAD mono, but didn't have it now, and after 6 weeks they basically implied it was a psychological issue. here we are 4 months later, and she's doing at home study, and goes through waves of sleeping lots, and being slightly more active. She has no life anymore at 15. If you haven't read Medical Medium: Secrets Behind Chronic and Mystery Illness and How to Finally Heal, it's got a protocol in it. My 15 yo just won't do it, but i hear good things about it. Also if you're in California and can see Michael Shpak LAc , in Pleasant Hill, he has been the best through this. Although it's not what' I'd call affordable and we're still struggling with it.

i GOT DIAGNOSED IN 2008 AND i AM 53 AND MY LIFE HAS NEVER BEEN THE SAME I AM DESPERATE FOR HELP

I applaud your positive attitude and dedication to helping yourself. You’ve inspired me to find my MM book and make another attempt to follow that path. Thanks.

I will admit that researching things to help myself is a lot more difficult than it was researching back when my son was young. I had all the energy of a mama bear 23 years ago when my son was diagnosed with autism. Admittedly, research to help your self when you're so damn tired an feel like crap is much harder. In fact, I would say that until recently, I probably didn't have the energy so I'm trying to take advantage of it. I've already ordered all 3 books and determined that reading is giving me migraines so I've downloaded the audio book to the first one and am listening to it while taking notes.
I have yet to get to the part where they tell me what to do about it as far as diet goes so I'm finishing my Ben and Jerry's Karamel Sutra before I get to that part. Something tells me that once I read that part, I won't be eating Ben and Jerry's. LOL

I was diagnosed with a new infection of EBV at the age of 61> I got sick in Aug. 2017. I'm so fatigued I can't live my life like I used to. I'm in pain all over
but try not to let it get me down. I don't tell people anymore because they don't understand what I am going through. I have been doing research too. Keep
trying to get help. Keep going to doctor's until you find one that will listen to you. I think I am experiencing the after effects of EBV, and that it was a new infection at my age it messed up my whole body. I follow the MM website, and do follow some of the protocols. I don't eat unhealthy foods. Hope someone can explain this weird virus to us. I'm trying Rhodiola, that I bought at Whole Foods. It promotes energy and resistance to stress. I also take magnesium at night and melatonin at night to help me sleep. Stay in touch. Thanks.

Try finding the best doctor you can that practices Integrative Medicine in your area> Try Healthgrades.

At long last I am finally feeling like myself again. I was diagnosed with CEB this past fall. It took for ever to find a treatment and a doctor who could administer it here in Florida. Searching the web I didn't find any one locally but finally by word of mouth I found someone. The treatment I underwent was blood cleansing with Ultra Violet & Ozon along with Hydrogen Peroxide IVs. I was administered these two treatment twice a week for five weeks and soon after I started feeling like myself again. I had know of others who had this treatment thirty years ago (old medicine) but wan't finding anyone who still practiced this. It took a while to get help but it certainly has. I am no long fatigued and most of my other symptoms are gone. I might follow this up with Amino Acid shots, I'm still doing some research about peptides. There is hope for EV sufferers.

Had new infection of EBV. Now have been diagnosed with chronic fatigue and fibromyalgia. Started aquatic therapy to get some strength back. Learning to live with this. It's all new to me. Good luck to all of you with a chronic illness.

what have u done