Mayo Clinic Connect
My son has been suffering with this for over a year. I have taken him to an immunologist and infectious disease doctor with no answers. He is always tired and never feels well. He has relapsed with Mono twice in the last 10 months.
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i GOT DIAGNOSED IN 2008 AND i AM 53 AND MY LIFE HAS NEVER BEEN THE SAME I AM DESPERATE FOR HELP
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what have u tried?
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.
have u tried antivirals?
Liked by Lisa Lucier, Connect Moderator
My son is 17yrs. old and a senior in high school. He got the Epstein Barr virus 14 months ago, which caused Mono with another relapse with it a month later. His doctor made him homebound from school for 4 months, due to the severity of this. He has been to see an immunologist and infectious disease doctor, but no help in solving this puzzle. Since diagnosed with Chronic Epstein Barr, he’s been constantly fatigued, just doesn’t feel great half of the time, and is constantly contracting other infections and viruses.
did u try any supplements like colloidal silver
Hi @cummings3! I too know how frustrating it is. I had an infectious disease doctor laugh in my face and tell me to stop going to doctors because she believes there is no such thing as chronic EBV. My PCP recently gave me this protocol (below are her direct notes), which she says several patients have had great success with. I haven’t started it yet due to other GI issues, but I’m planning to try soon. It’s all natural supplements, so I’m comfortable sharing, but you may want to check with your doctor and make sure no conflicts with anything else your son might be taking.
Chronic Epstein Barr Virus Infection:
– This is a reactivation of an old EBV viral infection and is not contagious.
– Discussed starting on sambucus or sambucol 2 tsp 3x day for a couple of months or one of the lozenges 3x/day, then can go down to once daily for one more month which has been shown to help shorten viral duration and decrease severity of symptoms in certain viral infections including EBV.
– Vitamin C is a cofactor in the viral immune system – can take as much as 900-1000 mg once-twice daily.
– Quercetin has studies showing its ability to help the body fight the early antigen of the epstein barr virus. Dose = 1000-1200 mg daily
– N-Acetyl Cystine (NAC) is an antioxidant that can help with nerve function and memory. Dose : 600 mg once daily
NOTE: There is a combination product called Di-Hist or Nu-Hist that has Quercetin, NAC and Vitamin C in it which is convenient but slightly more expensive than putting together own ingredients. Can be gotten from Apothecary shop or online.
– To help with fatigue, discussed using 5 gm (5,000 mg) ribose 3 a day for 3 weeks, then 5 gm twice a day for 6 weeks to see the full clinical effect. We have patients get a 280 gm container of ribose (Corvalen from Douglas labs) as a therapeutic trial. http://www.endfatigue.com/tools-support/D-ribose.html – can order on line from this website (and the endfatigue.com has a good write up of some of the research) or can go to amazon and put in Corvalen or D-ribose by Superior Fuel.
– Discussed may take up to 3 months (or longer) for full effect. Once feeling better, slowly stop the medications (stop the quercetin first, then NAC, then vitamin C, then the sambucol- as an example). Would not stop the supplements till has been feeling well for 4 weeks.
@kanaazpereira, @suesiegel, @arriba, @aman_23_23, @copiela, @jatl, @cheryldotson
@michellebelle I have yet to try it, just getting into the second book. I bought my juicer and a food processor so I have all intention to give it my best. I feel like I need it spelled out in an easy format for me.
I had not heard of colloidal silver, so I did a little bit of research. It seems the reviews are mixed, but here is a good overview, https://www.webmd.com/vitamins/ai/ingredientmono-779/colloidal-silver. This source of information stresses the importance of speaking with your provider when starting any new supplement, especially one that is no longer approved by the FDA.
Liked by John, Volunteer Mentor
unfortunately, the way CAEBV works, antivirals don't work – at least that's what I've found in my research.
My husband developed CAEBV about a year ago and we've been trying to get in to see an ID Doc for almost a year. I have a feeling its a waste of time though because we don't have the best and brightest in my town. there is very little information and research on this virus in the medical literature, unfortunately, BUT they are looking for candidates for studies. I'm discussing that possibility with my husband. in the meantime ANY helpful strategies to deal with this debilitating illness is greatly appreciated!
Laura, I just read your post and as another adult with CEBV I was curious about the studies you spoke of. I'm always looking for new and old treatments. I hate to accept my conditions, just spent the whole day in bed unable to do anything. That's for passing on any information.
Just wanted to update all, my son became ill with a flu like virus a year and a half ago. He was left with extreme fatigue and brain fog. No pain, he does work a full time job but never feels rested. We were originally told he had strep throat, then mono although both tests came out negative. He was testing high counts of EBV and then told he had chronic EBV. We continued to test his EBV antibodies every 6 month. His latest one tested negative for EBV, then we checked his blood again 2 weeks later and it came out negative again, not even for a past infection. This has been baffling, I would erge others to get rechecked. Clearly my son is not feeling good but we are no closer to figuring out why? Theses EBV antibodies were elevated from something else. Negative for Candida also. My son feels exactly the same, no better no worse.
First, let me send sympathy for your ailing son. Have you done any research by Anthony William?
Hello. I have EBV but not sure if its Chronic. Been to several specialists and the chronic fatigue seems to be autoimmune related but can never get a definite diagnosis. Blood results are always inconclusive. Can a person have multiple viruses? I don't think that EBV is the primary cause of my symptoms but would sure like to know what is. I have a swollen face that looks like a bad sunburn, it never goes away. WhatevercI have, i pass to another person.i can't share anything , not sure if its the EBV or something else. Any advice would be much appreciated.
I forgot to mention my heart rate is high as is the lower number in my blood pressure
This site unfortunately is a forum of people sharing information with as of yet no solid answers as to a cure for the Epstein Barr virus. I would think that yes you can have more than one virus. The swollen face issue is not one that I have heard of as a symptom of EBV but swollen glands in neck and all other gland areas are. I constantly have swollen glands through out my body. It is great that you have found several specialists! So many of us can't find anyone who is knowledgeable on EBV. I have found a wonderful Naturopath MD. She had me do several blood and other tests and has prescribed both natural supplements and prescription meds. Unfortunately none have helped much at all so far but I am not giving up. My main symptoms are swollen glands and chronic fatigue. I have very low levels of Cortisol so tried taking Hydrocortisone but it had too many side affects to make it worth it for me personally. Reading the Medical Medium's book Thyroid Healing has been great. The entire book is about EBV and how eating properly can rid the virus but the diet he prescribes is pretty hard to do. I try really hard to follow it but do eat meat. Good luck and please share anything you may find to help get your EBV levels back to normal. My numbers are super high all the time.
@cummings3 and @melissavaughn Have any of your providers considered a type of atypical anaphylaxis? Low blood pressure, headaches, etc can all be symptoms. Go to
emedicine.medscape and look up article 135065. It won’t let me post link here.
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