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.
Liked by mapchap, pijax, lioness, nacc ... see all
I'm sorry for the pain you and your son are suffering. I was Dx with Epstein-Barr nearly 30 years ago. It was a refinement of my previous diagnosis: Chronic Fatigue Syndrome. I have now been refined further to Fibromyalgia. Personally, I think they are all the same. They are Syndromes, not Diseases because there are no conclusive tests to prove or disprove them and therefore no legitimate treatment, just palliative IF you have the right Dr. I am 70 years old and have suffered from lack of energy as long as I can remember. The only thing Drs ever found that was treatable was I had pernicious anemia…an iron and vitamins B deficiency anemia treated with supplements. I was 16 then and still get vit B shot monthly and, when iron and ferratin levels are too low also weekly IV infusions. Your son should have those 3 blood levels checked as it mimics symptoms of the "Syndromes" but is treatable if monitored. As far as CFS, E-B, and Fibro treatment for the symptoms telies on your Dr and a large majority of them consider them nonexistent or psychsomatic. From Mt long experience I would recommend you abandon your search for E:-B symptoms and Dave yourselves serious frustration time and clinical depression for your son and have him checked for anemia, kidney disease and heart abnormalities. Lastly, if you end up with the only diagnosis being "all in his head" have him start a very serious exercise regimen..it seems counterproductive but actually works quite well in boosting energy. I know it JURTS, I still cry every day but the after effects are worth it. Start with 30 min daily, half weight resistance and half cardio (important to do both every day). If he cannot stand 30 minutes at once do 15 minutes twice. Work up to at least 45 min nonstop or 60 minutes of he's moving slowly. Swimming is great if he has or develops any muscle aches and/or joint pain otherwise it usually isn't rigorous enough. I assure you he is not going to want to do this but if he wants some of his energy back and doesn't want muscle wasting this is the only option Drs have for him. Get the tests first to rule out anemia, heart and kidneys before he gets too good at the exercising but I'm sure he has shortness of breath with exertion currently so he'll start slowly anyway. I promise the results will be quite helpful but not 100% of what he'd like (be sure to tell him girls find muscles quite attractive). Good luck to you both, especially Mom since you'll be the Evil Enforcer for awhile. For muscle aches after exercise, if he has, ibuprofen, NO aspirin or pain killers known as NSAIDS like Alleve, Advil and definitely no opoids, they suck away your energy and the pain won't be that bad regardless of what he may say. Every day B4 my routine I remind myself I'm in training for the Olympics and I won't get there if I miss a day..no pain, no gain. My msg to your son is If you want something you don't have you're going to have to do something you haven't done!
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Ditto w/fibromyalgia. Actually diagnosed with that in 1979. I am 69 and agree that all these are the same animal. Vitamin D levels are low in my case. Exercise is absolutely the key and it helps! I just go on and fight through it and that works for me. Never give in or will end up not moving. Hang in there.
Liked by John, Volunteer Mentor
yes ironic exercise does help
Hi everyone – I was diagnosed at Mayo with Chronic Fatigue Syndrome as a 16 year old and spent 5 years recovering. I'm now 52, and the symptoms have returned with a vengeance. I recently had lab work done with the following results. My physician offered no interpretation of the results, but I'm pretty sure from what I've read online that these numbers indicate EBV is fully reactivated. Thoughts?
EBV VIRAL CAPSIDE AG (VCA) AB (IGG) = 347.00 U/mL
EBV NUCLEAR AG (EBNA) AB (IGG) = 151.00 U/mL
EBV EARLY ANTIGEN D AB (IGG) > 150.00 U/mL
IMMUNOGLOBULIN M = 394 mg/dl
@mmckee How horrible to have it back. I will tell you what was helpful to me. You can roll your eyes for a while, but if you're interested, check it out.
I started following the basic diet. The whole thing described my path. I was forced to listen when I came across a video by this guy. Yes, it may sound a bit bizarre… but it works so I don't care how bizarre it is.
That will explain it. You can just search more.
Liked by mmckee
Hi @mmckee. I'm sorry that this has come back. I've read that with the early antigen elevated, it is probably reactivated and I'd say definitely if the IgM is elevated. I wouldn't worry about trying to interpret the results and put your energy into getting well. Join some online support groups and do your own research. Right now I'm hitting it from all angles– supplements, diet, and just started Valtrex. Know you are not alone. Many of us have been couch ridden at ine time or another. I wish you well. Let us know how it goes
Thank you, Valtrex worked for me in 2016. Was done as a trial would not give me more when I ran out. Found energy healer whom got me back to work. EBV was ready quiet past Friday, new mystery at hand now.
Hello. Has anyone here tried Biofeedback and a Hyperbaric oxygen chamber? I am currently being treated for EBV and dermatomyositis with these two treatments. I have also read that eating a whole food diet, juicing then drinking lemon balm tea will kill EBV. Good luck!
@lrymer This article is such a mirror of my experiences through the EBV journey that it's almost eerie. Particularly the infections and allergies that I experienced the first go-round as a teen. Also the 6-week life cycle of the virus that's mentioned later in the article almost perfectly aligns with my current bouts of severe "flu". I've already started on many of the Healing Herbs and Supplements based on other research, and I'm going to download the full book to my Kindle. Thank you, I'm very fortunate to have come across this community!
Liked by bessie87
Yes! How weird.. i bought that book off Amazon this morning!
Hi all –
I think my original post was edited out. Traditional medicine does not believe in cure. Not really cure, but extremely effective "containment" of EBV.
Astra Isatis (herbal combo) Lysine and Monolaurin. Give it 10 days.
I am 76 years old. I still ski, climb hills, work full time, and enjoy life. What a change from 10 years ago! I was virtually handicapped from decades of EBV reactivation. A wonderful teaching naturopathic doctor at Bastyr University took one
look at my old labs and said everyone had been misreading my ANA's —- I didn't have lupus, I had an EBV reactivation. I was at 3,533 on one my tests,
where I should have tested around 30. Astra Isatis is available on line, so is monolaurin, and lysine is available almost everywhere. Sad thing is that
even after ten years, my GP and other docs (one of whom ran the test for me as directed by the naturopath so my insurance would pay for it) still don't
acknowledge the EBV in anyway. It's always the elephant in the room. They run their own tests, which always come back negative! I've taken this
protocol for 10 years and will take it the rest of my life. Do NOT take anything with arginine in it! While it's wonderful for temporary energy, my understanding
is that it dissolves the "capsule" that contains the virus and allows it to reactivate. Over simplification, I'm sure – but be careful.
The lysine is cheap. I take 1,000 mg a day. Astra Isatis in not cheap – about $50 for 270 tablets and I take 2 twice a day. Momolaurin around $40 and I take it twice a day. I can get by without the monolaurin once I get the virus in remission, but if I think it's acting up again, I have to take it faithfully. Insurance pays for none of it, but it's worth it's weight in gold to feel good. Good luck to all!
Liked by 1sickntired1
I would love to tell you more about them. I take their probiotic (ProBio 5-it has an anti fungal, enzymes, and 5 probiotic blend). A special multivitamin (XFactor-it has a special blend of Aloe in it to help with absorbing nutrients better). These two help strengthen my immune system.
Plexus Slim helps balance my blood sugar.
MegaX (Omegas 3,6,9, + 5&7) helps my insomnia.
BioCleanse (Magnesium) helps oxygenate my cells and gently cleans out my gut.
I know it sounds like a lot, but I can’t believe the difference these products have made in my life.
I know this is an old post, but you seem like you might know a lot about dealing with this. I have ringing in my ears, GERD, digestive issues (even though I eat a pretty clean diet), constant urination, and insomnia. This all started last year, went away, but then came back with full force. EB was around 560 on one test. Are these typical symptoms of EB? Just wondering.
Hi. My 15 year old daughter was diagnosed with EVP about 17 months ago. She seemsed to need a lot of sleep since but we figured it was just being a teenager. Recently she has been very tired and struggles in class. We took her to Doctor, who tested her EBV. It's came back high for EBV and referred us to an ID Doctor. My question is; can it take more than 17 months for the initial EBV to resolve or are we looking at a chronic condition? What should I be asking?
Liked by Jamie Olson
I was just told today I have chronic EB. My last labs showed a had a recent flare and according to the doctor it was acute. I am now having another flare just weeks after this last one. I was referred to an Infectious Disease Doctor to try to determine why it keeps reactivating. I have a terminally ill 2 year old granddaughter who lives out of state. I am terrified i will never get to see her again since she is so fragile. I have no idea what the warning signs are that I am reactivating. I was told many years ago that I have Fibro so I stay fatigued. I am 65 and have no idea what to do. My insurance only covers the county I live in. Frankly, I am scared.
Hello @chickie001, I combined your EBV discussion with a discussion titled, "treatment for chronic epstein barr." I did this so all of the members currently discussing have EBV and how they are managing it would see your post and share their thoughts.
@chickie001, while we wait for others to share their thoughts with you, would you mind sharing what your provider told you about it being acute? It is good that you were referred to an infectious disease doctor and that your provider seems willing to help you find the answer.
She told me nothing other than my numbers were high and put the referral in for STAT
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