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 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.
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Fibromyalgia is a group of symptoms. And instead of the doctors trying to get down to the root cause, they blame all of your symptoms on fibromyalgia which is just more symptoms. There can be multiple causes to these mystery illnesses such as fibro and chronic fatigue syndrome. Reactivated EBV is what I am dealing with. I recommend learning all you can on your own and follow up with your doctors as instructed. I recently watched in online summit hosted by Dr Rodger Murphree. He treats fibro patients around the world and has a lot of info on his website http://www.yourfibrodoctor.com. William Rawls,MD is another good one. I started his protocol 2 months ago and am excited to have experienced improvements. http://www.rawlsmd.com. It is completely normal to feel scared. Know that there are others struggling with this too and we care. I wish you wellness soon and peace and comfort to your granddaughter and family. Keep us posted on how you are doing, if you have questions, or simply need to vent.
Thank you. I am so glad this site is here. I have lots of questions.
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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.
I am learning all I can about EBV. Thinking back I have had several..I guess you call them flares. Anyway from what I understand there is an incubation period with no symptoms but you are contagious. I have a couple of people in my life who have very weak immune systems and the doctor told me I shouldn't be around them..especially now since it is active. How do you know when you can be around people?
Hi @chickie001 That's a good question and a grey area. I would follow what your doc says since he/she knows your unique situation. Over 90 percent of humans have been exposed to EBV and therefore have antibodies to protect them if exposed again. We never get rid of the virus though. It basically sleeps in our body and then can be awakened when our immune systems are down. This can be caused by stress, poor diet, environment stressors, genetic weaknesses. From what I have learned, there is no one means to putting it into remission. Many have been helped by cleaning up their diet, supplements such as L-lysine, Lauricidin and others, Valtrex, tackling stress, taking up yoga, meditation. A good resource is Kasia Kines, PhD. She just wrote a book on EBV called The Epstein Barr Solution. Her website is ebvhelp.com. ….Sorry I don't have a straightforward answer to your question about contagiousness! The main thing is to focus on getting well– taking care of yourself. Doing your research and doing things that you think will help you.
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Thank you. I ordered the book. From everything I am reading the contagious thing really isn't clear cut. I have a 2 year old granddaughter who was born with a rare form of dwarfism..RCDP…she has lived linger than anticipated and is very fragile. I would never jeopardize her health….makes me sad that I will probably never get to hold her again. Thank you again.
Hi, all! I have been on a similar journey to you all for the last 8 or so years. I caught mono in high school, and not long after I went to college I became ill with the first of my chronic symptoms. It first started with swollen lymph nodes, migraines/sinus headaches, congestion/runny nose/sputum, constant low grade fever, raynauds syndrome, chronic fatigue then eventually progressed to sinusitis. I felt like my body was in constant over drive 24 hours a day. I tried every antibiotic and steroid I could and found no relief. I was also constantly getting sick with other visurses (strep, stomach virus, flu, pneumonia, etc) After seeing my immunologist/allergist he ran tests that showed my ebv levels were high, and explained to me that also discovered my T cells do not work properly. I was also told my I was also not allergic to anything but dust. He also ran ANA tests and they all came back negative. I then went on to see an infectious disease doctor. All of my tests came back fine. Next stop was an ENT. They performed surgery on my sinuses and that helped a bit, but later the infections came back. These symptoms have remained for the most part, but there have been new chronic symptoms that have been adding on top of the existing over the past few years. I also started to struggle with IBS, extreme migraines through out the week, and dry eyes. The dry eyes have gotten so bad since last year that my eye pain is constant. After seeing several eye specialists I have learned that the symptoms of dry eyes are the response to inflammation. I also now have 1 droopy eyelid. My neck (lymph node) pain has increased, low back pain, joint pain, constant dehydration, ulcers in my mouth, and low brain function/foggy thinking. I’m currently 27 and just retested for ebv. And yet again, it’s incredibly high. I’m starting to read the medical medium book and take it seriously because I feel like the virus is taking over my entire body. My next step is to find a naturopath that knows something of CAEBV as well. Will keep you all posted on the book and scouting out a naturopath.
I recently tested with very high levels of EBV, 24 years after suffering from Mono at 16. I was dealing with chronic sinusitis and was sick at least monthly, every bug got me and turned into a sinus infection. Saw a physician who prescribed Acyclovir (Zovirax), often prescribed for Herpes. I take it 1X daily if I'm feeling well and increase up to 3X daily (dosage on the bottle) if I'm not feeling well. It seems to help with getting sick and I've been sinus infection free for almost 6 months. I would still say I need lots of rest (not easy with a 4 yo) but definitely have some improved quality of life with taking this prescription. Would love to hear more about natural remedies as well. Hoping you have made some progress and are feeling better.
Hi @anshann44 . I'm sorry to hear you are dealing with EBV. I'm glad though that the Zovirax has kept you from getting sick as often. You mentioned you wanted to hear more about natural remedies. I currently am on Vital Plan Restore Kit by Dr. Rawls (rawlsmd.com). I have been on it for over 2 months and have seen some improvements. It is a diet/supplement/lifestyle protocol. His team is very supportive. He is an MD who became ill and lost his career in his mid-forties due to chronic Lyme, fibromyalgia, CFS, and even reactivated EBV. According to him, basically all those things can have the same trigger — a weakened immune system brought on by poor diet, stress, environmental toxins, and other things. You can check out his website otherwise this message is going to be really long! You can also check out http://www.ebvhelp.com. It is a website by Kasia Kines, PhD who just wrote THE book on EBV called The Epstein-Barr Solution. Also Rodger Murphree, DC (yourfibrodoctor.com), and Evan Hirsch, MD (fixyourfatigue.org) are good resources. I learned from being a part of some EBV Facebook groups that many say they have improved by taking L-lysine and Lauricidin (monolauren). Lifestyle changes are important as well. Learning to say no, resting when your body is telling you to (or ideally before your body tells you!). I know, right??!! I'm sure that is difficult with a four year old. Be your own best advocate, don't give up, do the research, decide where would be best for you to start and then be persistent and patient. Recovery is not a straight line. There will be many valleys on the journey. I have learned that first hand. Let us know how you are doing!
my husband came down with EBV three years ago this month. Since then he has been really tired, no energy and most of the time just don’t feel good. He says his doesn’t know what it is, he just doesn’t feel good. Jim will sit down to watch tv or to read and within 20 minutes he is sound to sleep, this also happens every Sunday during church. He has been to over 12 different doctors including the infectious disease doctor which could only say what Jim didn’t have but couldn’t explain why he feels bad most of the time and is so fatigued.
I was diagnosed with Epstein Barr Syndrome 22 years ago at the age of 54. B12 shots every week; chiropractic adjustments, and acupuncture helped me a lot. In retirement I had 11 really good years, increased physical activity, etc. Then 14 months ago the illness began steadily to take over again. Along with the two most prevalent symptoms (fatigue, muscle-joint discomfort) I have a couple different symptoms this time — muscle spams and "Charlie horses" in legs. Yes, it seems to be a different "bird" now that I am 76. Recently I've been to a rheumatologist — his suggestion of using COQ10 hasn't helped; he also suggested two prescriptions (Celebrex and Cymbalta); but I felt they were too expensive for me to try only to find out they don't work. Instead I am going to try acupuncture again. I very much understand the problem of "just not feeling good." I really understand your husband's situation because I was there. It caused me to take 3 short FMLA breaks from my employment; now it really interferes with things I'd like to do and even things I have to do just to take care of myself. I wish your husband well.
How has your son progressed? I am 30 and have been sick for 10 weeks. I had mono at 13yrs old ebv. Have always been tired alot but now i struggle to do basic day to day things like go to work and stay sharp. Each time I do anything physical next day i have phlem sore throat congestion and feel horrible. I use to lift weights box played college football. I’m scared for my future will this ever be gone? What do i do besides rest? I pray no one has to go through this. I sleep 9 10 11 hours and still exhausted my job and happiness are in jeopardy. I just want be back to normal. I am sinking lower every day and compared to stories i see of years of this struggle i dont think i could do that. I am not able to live life right now and it selfishly breaks my heart. Please help me.
Jonathan: I've lived with Epstein Barr Syndrome for 22 years. Back then, when my doctor diagnosed me, we started routine B12 shots for energy; I went to a chiropractor for the muscle/joint discomfort (my MD wasn't pleased with this but also told me I would have to find what worked for me). When the discomfort became more pervasive and more painful, I had acupuncture treatments for 10-12 weeks. I think the routine B12 and chiropractic adjustments helped; but with acupuncture I saw the biggest change. After 10-12 treatments I was much more comfortable physically and had a lot more energy. When I retired (11 years ago), I started 10 years of good health, no B12, no chiropractic adjustments. Then 14 months ago EBV again took over. And it now has a good hold on me. I have been to a rheumatologist — no help. Infectious disease specialists wouldn't even see me. Since I've moved across country, I have a new doctor whose initial response to my extreme fatigue was to treat me for depression. I know better! I've been to two specialists in the last few months. Had they had experience or success treating EBV, I wouldn't hesitate to follow their advice. But recently a rheumatologist prescribed Celebrex and Cymbalta. Together they are very expensive. And since I had good luck before with acupuncture, I'll spend the money there. I have my first acupuncture appointment on Wednesday next. Hope I've been of some help. JB
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Hi, my name is Vincent Ernst, I contracted Mono between 2014 and 2015 and have a persistent, on and off again feeling of lethargy and general weakness, in addition to other vague symptoms. It is unclear when exactly I contracted the infection since only an EBV anti-body count tested in early 2016 confirmed that the infection had taken place “recently”, and perhaps at this stage this had already become chronic. To provide some context, I first started feeling unwell in Autumn 2015, when I noticed that I was frequently feeling sick, but not seriously ill with any fever or severe symptoms. It was like a mild cold every two or three weeks. During this time period I was completing senior year of high school as well as studying for my IB Diploma and I didn’t miss a single day of school. I also performed as a DJ at parties, whilst sick and also drinking alcohol. This stress never seemed to impact my symptoms. This phase lasted until my 18th birthday, in mid February 2016 and suddenly ceased for some time until early may when I contracted a bad flu and was then hospitalized with double Pneumonia, thus missing my Final HS Exams. In late 2016 there was a second, three month phase where my symptoms worsened and didn’t go away. I was treated homeopathically with 2LEBV, antiviral, immuno-stimulating drug, as well as other supplements. After taking some newly prescribed probiotics at the end of this three month period, I miraculously recovered within a few days. However, this year I still got ill frequently, always preceding or following events of high stress and alcohol consumption. I also got Pneumonia again, however far less severe than the first time. As of this writing where I am again feeling ill, there is no measurable fever, only a little yellow phlegm and a feeling of mild depression, malaise, light headedness, feeling hot and cold as well as a yellow discolored tongue. Every doctor denies that I have a persisting infection, except the homeopathic one who treated me, with temporary success. I might even describe myself as a hypochondriac, feeling scared and stressed of possible sources of infection since the events of the last two years. In my childhood I was rarely Ill, about once or twice a year and now I frequently have 4-7 day periods of feeling unwell, and every now and then serious illnesses such as pneumonia. I’m 19, attending university in Florida and I’m afraid that this will have a severe impact on my future adult life. A psychosomatic doctor even diagnosed me with “suspicion of personality disorder, namely recurring, currently repressed, depression” which is, excuse my French, bullshit. I feel a little helpless, but I’m not willing to give up and I want to improve my ok-mediocre quality of life before it gets worse and turns into CFS!
You are right: it is bullshit! I've lived with EBV for 22 years. I identify with so much of your story. Currently I'm living with a fairly severe recurrence. My GP here in Tucson wanted to treat me for depression. An infectious disease specialist wouldn't even see me. A rheumatologist suggested COQ10 — it hasn't helped. Lysine also hasn't helped. In the past routine B12 shots and chiropractic adjustments helped a lot. I had a period when the muscle/joint discomfort turned in to full body pain; then I went for 10-12 chiropractic adjustments. They had a quick and positive (long lasting) impact. As a result, I have just found an acupuncturist here in Tucson. My first appointment is next week. If you choose to try acupuncture, be sure he/she is certified. I wish you well, Vincent. This is not an easy illness to deal with. In the 20 years since I was first diagnosed, doctors seem to know more about the disease and its relationship to other illnesses. There still have been little advances in its treatment. JB
After moving to Connecticut from Maryland in 2008 and beginning to experience lowering hormone symptoms, I also began to experience neuropathy, severe vertigo, severe weight loss, chronic joint pain, Raynauds syndrome in my fingers, my veins in my arms and legs enlarged so much that they appeared like tree roots on top of skin, I was weak, dizzy felt completely out of control. I spent the night in a hospital due to heart palpitations. When my heart rate right dropped during the night, the nurse came, took notice, administered morphine, phoned the doctor and attributed the drop to the morphine she gave me after the event. I later developed mouth sores. I went to 5 different doctors took blood tests, that included HIV, lupus, cancer screenings. I was accused of being a chronic alcoholic who was jealous of my sisters success and told to stop drinking. I cried when this judgement was made, I was too hurt to be offended. My symptoms improved after 3 years, except my white blood cell count has remained low. I did get treatment for my hormones, with hormone replacement. No more hot flashes and I haven't had fibroids since, after two surgeries.
I recently began taking collagen supplements and three months later had a massive hsv2 outbreak. I stopped having outbreaks over 20 years ago. Only have had very mild ones off and on that were never a real issue. This time was different. I stopped taking the collagen, and paid $700 for brand Valtrex after about 2 weeks, outbreaks stopped. I researched about how arginine can cause outbreaks, I was skeptical because I had never been diet sensitive before. Because I loved what the collagen did for me, physically, I do have arthritis in my thumb I didn't want to stop, so I did insane research and stumbled upon the Goop article about the medical medium, Anthony Williams. Reading that I finally had a diagnosis, CAEBV. One doctor did test me for Epstein Barr during my initial infection in 2008 and the results were off the charts. My EB VCA IGG was 3119, EB EA IGG 108, EB NA IGG 793.
I have had CAEBV for 10 years without a diagnosis. The whole body collagen supplement I took this past summer has reactivated EBV. I now have very swollen lymph glands, pins and needles. I did start taking Lauridicin to help with the herpes outbreak. Now I am looking for a specialist.
I do have a question, do mung beans cause a reaction for anyone ?
Also when I am reactivated, can I infect my husband ?
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!
I have now been on the supplements listed above for almost one month and they have made a big difference in my energy level!
That is great news @sharyld
Are you refering to the Astra Isantis, monolauren, and lysine recommended by @magbatt? I have been on lysine for three months and started monolauren (Lauricidin brand) about a month ago. The monolauren completely knocked me down. I cut the dose way down for a couple of weeks. Yesterday I stopped it completely to allow my immune system to catch up. Did you get worse on the supplements before getting better?
Yes, that's what I have been taking-with only good results. The benefits kicked in after around 10 days and maintained until I ran out the Aatra Isatis for one week while awaiting the next shipment. I will never let that happen again as I had an energy crash and full return of symptoms yesterday! New order has arrived-and it was a definite demonstration of how helpful the supplements have been for me. Currently taking L-Lysine 1000 mg. 3 times daily, 600 mg. Monolaurin twice daily and Astra Isatis, 2 tabs 3 times daily. I take them 8 hour apart. I may increase the Monolaurin to 1800 mg. twice daily based on Dr. Jill Carnahan's recommendations-and may add Olive Leaf, 1000-1500 mg. twice daily and Cat's Claw tincture, 30-60 drops twice daily, also on her advice. I hope you experience improvements soon-this virus is no fun!
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