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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Hi Everyone, I am at the beginning and yet middle of my journey. I had mono when I was 20 and have struggled with severe fatigue off and (mostly) on again ever since. I have been repeatedly diagnosed with depression because of the fatigue. Finally, 3 years ago, my dr. decided to run another mono test and sure enough, I had a current or recent infection. Fast forward to last week. I have moved across the country and am now with a new dr. I finally decided to ask for another mono test and sure enough, again, I tested positive for a current or recent infection. For me, it makes sense of my 26 years of fatigue. Now I am hoping to figure out what I can do to somehow recover from/mitigate this frustrating pattern.
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Yes, I did read the book Thyroid Healing and did appreciate the ‘diet solution’. I’ve always had a healthy diet so following his suggestions hasn’t been too hard. I just don’t do the juicing that was suggested. I’d rather eat ‘plants’ than drink them. I do drink vitamin water and love my low sodium V8 juice though I’m sure it doesn’t have nearly the amount of fresh healthy vitamins that juicing has. I’m always up for suggestions. We all should keep a healthy plant based diet however, I haven’t noticed any change due to diet since there wasn’t much for me to change.
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Cummings3, Yes please keep us posted if this helps. One thing I have learned is it’s up to us to find answers to this illness. My son did see a infectious disease dr but he just said to rest and he will eventually get over it. It’s been 9 months and he feels the same. No better. I think the bodies immune system thinks it’s healed. He is trying an extreme diet to cut out sugar and processed foods, some herb remedies and a colon cleanse. We will see a neurologist next. He has seen an ENT, eye dr, infectious desease dr, internist, allergist, and has had an MRI. Everything come out normal except that he had recent EBV. We will see a neurologist next, his main symptom is extreme fatigue that sleep will not cure, blurred vision and concentration problems. Please keep me posted and anyone else that has advice. I think we are alone in this.
Hi to you. I’m new to this site and have just recently found EBV to be the cause of symptoms experienced for over 20 years and two boughts of cancer How’s it going?? Could you feel comfortable corresponding thru email?
I’m most interested in your present circumstances and achievements with this crazy
Virus. Thanks so much! Janeen
Hello to all. I’m 56 years old. i’ve had Lyme disease 23 years -not diagnosed until 12 years later. Infectious disease specialist iNY diagnosed me with Chronic Epstein barr. Moved from MY to SW FL 8 years ago. Always positive for Epstein barr and mononucleosis. Have seen a DO/Naturopath 3 hours away since June 2016. I can’t find an MD where I live for help. I’ve been to at least 15-20, including infectious disease. I have been treated as if I’m looking for attention, a s if I’m deceitful, a hypochondriac, that I’m mentally ill and there have been comments and questions about my marriage with my husband sitting right next to me, holding my hand, obviously upset and scared for me. Please don’t think that I’m arrogant but I’ve had to become my own advocate due to all of the above and this is with files of documented evidence of how very sick I am and I know something is very wrong with me.DO doesn’t accept insurance, has pushed all of his own products and in house servicest, hasn’t helped me, has helped himself to housands of dollars that I can’t spare, not going back. I have so many ongoing infectious bacterial and viral, mold toxicity etc but just sticking with Epstein barr. I’m so scared, I need excellent medical care by a kind and patient MD but I don’t know where to I turn. I so much want to be the energetic, vivacious woman that I used to be. I don’t understand why MDs, family and friends etc would ever think that those of us in this condition are really not sick. And nobody has to tell me or test me to confirm how ill I am, I can feel it inside the body that I have had for my entire life. If anyone can please give me direction I would be so grateful. 2013 memory testing showed decline in cognitive function. Beginning in early 2014 began having black out episodes while driving. December 2014 had to stop working and apply for disability, grateful to God I received it in 6 months. Stopped driving. June 2015 began forgetting episodes in my life, my husband had to stop working because I was falling, losing conciousness, much more. December 2015 became totally exhausted. January 2016 rapid decline, always sick (pneumonia June, July, August and bronchitis 4X). January 2017 stopped being able to take care of my home, can’t even walk one block, so tired, so desolate, spend most of my time on the couch or in bed. 2 weeks ago, unable I can’t eat anymore, abdominal pain so bad, bloating,. CT scan normal Vomiting began a year ago. Gastro did his tests, his diagnosis I’m nuts. And he knows that I have severe gastroparesis and a serious small bowel to large bowel motility issue.I began entire body shaking about 3 weeks ago, no changes in meds. Also I feel really strange as if something is frightening is happening in my brain. Its hard to explain. My entire body is in pain. I’ve no stranger to pain but this is different. All my lymph nodes are swollen and I keep testing + for dehydration, among so much more. Difficulty using my hands. EMG testing i2006 abnormal, automatic system testing abnormal 2009. Can anyone please help me? I feel alone and confused. I am seeing my Neurologist next week. He is an excellent M.D. Thank you all for your time & patience.
Have you tried
Natural remedies and restricted diet. These really help
Plus positive happy thoughts and friends are invaluable!
Hi there. Can you reply thru email -am most interested in your progress with your son since last year. Thx Janeen
Hello Janeen (@joyisjah), Welcome to Mayo Connect. We are glad you found us. Connect is a good place to share your health concerns, ask questions and learn what other members with similar health concerns are doing for treatments. From your post I was not sure which member you were asking if they could feel comfortable corresponding through email. Normally in long discussion threads it’s a good idea to use their Connect username (@username) which will send them a notification along with your post.
Members can send private messages (PM) and if they are comfortable exchanging personal email addresses. I think this is a good way to stay in contact with other members but I would urge members to consider if the information being shared would benefit or help other Connect members. Sharing what works for you really helps others that are seeking answers and is much appreciated. If you want Step-by-step instructions to help you get the most out of Connect see the following page:
Janeen, if you are comfortable sharing, can you tell us what helps or what you’ve tried for treatment for EBV?
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I see that you are wondering how @shellr13 son is doing since last year. You mention replying by email. It is important to remember that posts on Mayo Clinic Connect are public, but should you choose to want to communicate privately with a member we recommend using the private message function by clicking on a member’s username. If you are comfortable talking publicly, sharing your experiences and listening to others’ experiences is what makes Connect valuable. We often don’t feel like what we have to say is of value to others, but it is amazing what your experiences can mean to other members.
It is also important to remember that if you are replying by email, it still shows up in the public discussion, so I always recommend clicking on VIEW & REPLY to see the whole discussion on the website.
@joyisjah, if you are comfortable sharing with the group, are you experiencing symptoms of EBV? How are you managing them?
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
First of December I woke up with my right hand stiff, swollen, painful and unable to use my fingers. Be the end of the day, EVERY joint and bone was painful. I could nothing. Doctor thought it was Parvo virus B 19. After three weeks, no change. Tested positive for EBV. Which is strange, because I’m 61 and a nurse. Surely, sometime in my life I would have been exposed to it. I manifested itself as a rheumatoid arthritis flare. The only thing that would give me a little relief was the oxycontin I had left over from spine surgery. Imagine lying in bed cold, but you can’t pull the cover up because of the pain on your fingers, wrists, elbows, shoulders because of the pain. No toliet hygiene unless husband helped me. I did notice that taking the 10 grams Vitamin C did help.
Liked by nacc
Hi, thank you for writing this. I came down with extreme fatigue. I was tested for EBV and I have a case where I was never exposed to it
until now. I've had it for 6 months. I can't hardly do anything. I need help and don't know what kind of doctor to go to. My PCP wasn't too nice my last visit. Just said it's like you have mono, and it will take awhile to get over. I don't know how to proceed to get help with this.
Hi, Johnathan. How are you doing? I feel the same way. I feel like I am not living life at all because I can't do anything. There seem to be no answers, for what to do about EBV. I don't know what to do. I sure hope you're feeling better. Take care.
Hi EBV sufferers! I wish I had seen this earlier, but I just came across it today. First of all, I want you to know that you’re not alone in your misery. I was a senior in high school when I had my first episode of mono. I ended up missing almost half of the school year. Couldn’t stay awake. No energy. My whole body was affected. At age 22, it happened again. The doctors gave me prescriptions for to combat the fever, upper respiratory, headache, sinus infection, etc., but nothing helped! I went to another doctor for a second opinion and after an examination and some other tests, the diagnosis came back as Epstein Barr Virus. Unfortunately, I also found out that I would have to live with this for the rest of my life and I had even higher chances of developing mononucleosis again and again and again. I never know when this virus is going to rear its ugly head, but finally, after 30 years of struggling I have my life back. Two years ago I was at the end of my rope. A friend of mine introduced me to some of the most amazing supplements from Plexus Worldwide that I have ever tried.
What type of tests r done to diagnose
Blood test and looked over by a pathologist.
Having EBV is very frustrating. I have been battling this for more than six months. I had heard some time ago about an Ultra Violet treatment that my girlfriend had over 25 years ago. It took me a long time to finally find a doctor here in Florida who offers this treatment. I believe my two doctors were just assuming I would get better over time and weren't recommending additional treatments. Well I got tired of waiting. I started the five week treatments two weeks ago and have also added a hydrogen peroxide IV. I have two treatments a week. I have a bit more energy now and plan to continue the full treatment. I'll keep everyone posted over the next few weeks and let you know if this helps with my chronic fatigue.
Liked by John, Volunteer Mentor, dandy
I have tried 2 UV and Ozone treatments like what you describe. I hope to start up more sessions when I am done with some travel. I will report back as well as to if they help!
What are Ozone treatments?
Hi @michellebelle — here is some information I found about ozone treatments that may provide a better understanding.
Newsmax.com article in their NewsMax-Health: Ozone Therapy: Hope for Chronic Illnesses
I also found a video that may be more relevant.
Epstein Barr Virus Disease (EBV) KO'd by Oxidation Therapy – YouTube
Liked by Lisa Lucier, Connect Moderator, dandy
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