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 asked to be checked for Epstein Barr when I became too tired to eat and chew (at 240 lbs. that was a first). Sure enough I had reactivated Epstein Barr. Please friend me if you have info about this disorder. I am hoping to come to Mayo MN in October to assess my chronic pancreatitis, possible nonalcoholic cirrhosis, Memory issues and TIA's and possible MVD (usually a difficult to diagnose women's heart issue). I also deal with Type II Diabetes, GERD, IBS, a neck fusion in C4-7in my spine and 2 knees that need replacing. Oh and ruptured disc in back, Anxiety, Bipolar disorder and PTSD. I am open to support and to hear other's issues.
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@mrmie best thing for you.
Hello everyone! My last post in July said I was headed to Mayo Clinic at their Rochester, MN campus in August. My wife and I spent three weeks in Rochester with me going to appointments. I can’t say enough positive comments about Mayo, the doctors and staff, and the residents of Rochester! After numerous appointments, tests, and changes in appointments, the final result is a primary diagnosis of Idiopathic Hypersomnia. At first, I was was disappointed that Mayo doesn’t recognize Epstein Barr as a chronic condition. However, their explanation made sense to me, and I am willing to accept their idea. I had been previously diagnosed with IH,
But Mayo made me feel better about my doctor and his treatment. Mayo doctors also didn’t confirm some other diagnoses from my local doctor and took me off five medications immediately. I am feeling much better since I stopped taking medications that my body didn’t need. The Mayo doc also sent my local pulmonologist his recommendation to revamp my medication dosage and/or change my medication to allow me to be able to stay awake better. Treatment for IH is just treating the symptoms…stimulants to keep me awake during the day. I see my local pulmonologist next week. Mayo also found a small issue with my pancreas, which I will be contacting a gastroenterologist locally for that. So do I think EBV is real? Yes! I also blame that virus for my IH, which the Mayo doc said was possible but it can’t be determined. I still have a little brain fog and pain, but nothing like it was before my Mayo visit. I recommend anyone who has ongoing health issues to make a trip to Mayo Clinic. Insurance is accepted, and lodging options vary according to your budget. We opted to take our travel trailer because of the length of time we would be there. Autumn Woods RV Park provided us with everything we needed. I am still curious how this plays out. IH isn’t curable, but it is manageable somewhat. I will be keeping up with everyone on here, and I appreciate everyone’s concern and prayers during my trip.
Don't understand Mayo not recognizing chronic/reactivated EBV when their own literature on-line says otherwise. http://www.mayoclinic.org/diseases-conditions/mononucleosis/expert-answers/mononucleosis/faq-20058564
Mayo says it’s not a chronic virus. However, another doctor in Texas says research shows otherwise. Idk. Looking back, I’ve had these symptoms for 15+ years but was never diagnosed. I finally had to retire early because I would sleep all weekend and then make it to work Monday and Tuesday and maybe half day on Wednesday. Then I’d start all over after sleeping Thursday, Friday, Saturday, and Sunday. Mayo dismissed many diagnoses and I am feeling better, but it’s a total management thing. My daughter is better than me. Doctor says it’s because of the age. I wish your son the best. I highly recommend a visit to Mayo! I’d be glad to talk with you more about our symptoms and various treatments we have tried.
Mayo does say it can be chronic. http://www.mayoclinic.org/diseases-conditions/mononucleosis/expert-answers/mononucleosis/faq-20058564
I do not understand. Does mayo Clinic recognized chronic/reactivated EBV? Here is their own literature which seems to say otherwise.
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.
Hello, its really hard to live like this more so at a young age. I am very sorry for what your son is going through, I hope that the treatment of the neurologist was successful and he does not have to endure this anymore. I would appreciate it with all my heart if you can give me your sons neurologist information. Thank you very much I hope you can reply cause am desperate.
I am wondering what tests are done to diagnose chronic EBV and how they differ from regular EBV testing? I'm a 31 year old female who has suffered from fatigue, sore throat, and muscle weakness for the past 26 months. Prior to an immediate onset of severe flu like symptoms, and throughout my whole life, I was incredibly active, competing in half-ironmans, half-marathons, but more than that, just LOVED running, long distance biking and swimming purely for the join of movement. Since getting sick, I have been too weak to partake, and get too sick / bed ridden if I try to. I continue to work and remain moderately active (walking and yoga) but it's a struggle as I persistently feel weak and sick. I had mono when I was sixteen, recovered in a month or two, and had no lingering effects. My blood tests for EBV (VCA IgG, EA IgG and ENBA IgG) are all reactive. My mono screen test is also positive (I know that this doesn't necessarily mean anything, however, when I was tested in 2015 prior to my illness, it was negative).
Liked by dbreed
@mopete your situation sounds a lot like my own and others. The bloodwork you’ve had done is good enough and proves the virus is active. Have they tried putting you on Valtrex? I’ve been on 500mg 2x/day for 10 yrs. in July a new pcp decided I shouldn’t take it and I proceeded to go back 10 yrs. I convinced him to put me back on 2 weeks ago and am back in business. Try and push your doc to put you on it. There’s plenty of literature.
Liked by Lisa Lucier
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.
Kschmoyer9, Could you message me the name of the product, if I give you contact information? Feeling same way…end of my rope
Hello, thank you for the kind words. It is very hard to see a teenager struggle with this horrible illness and has been for 3 years now. The name of his neurologist is Debbie Turner at Semmes Murphy Clinic in Memphis, TN His autonomic dysfunction caused by the EBV seems to be improving with Alpha Lipoic Acid that she put him on last November. However, the chronic fatigue is still debilitating for him and he still deals with feeling sick often…. there are good days and bad.
Thank you so much for replying, this means a lot to me. Am glad the treatment is helping your son and i hope he improves much more. God bless both of you.
I’m sorry to hear about your son’s diagnosis, but I’m so glad you chose to come to the Connect community to seek support and get some answers.
For now, I’d like to introduce you to @jenchaney727, @suesiegel, @arriba, @aman_23_23, @copiela, @jatl, @cheryldotson, who have all discussed Epstein-Barr Virus (EBV), and I sincerely hope they will return with some more insight.
Here is some more information from Mayo Clinic: http://mayocl.in/2iYRh3v
@cummings3, chronic fatigue is one of the symptoms of this condition; could you tell us a little more about your son? How old is he? What other symptoms does he have?
Hello my name is Charlie @nomadkazoo new to this form. I'm 57 2015-2016 lived through 10 mo mystery illness. My head spins every time I review this lost period of time. Numerous Doctors and testing no direction found, issues from heart racing out of control to black outs, numerous infections, fatigue,bulging disk back neck. roving pain to swelling of extremities, grinding lansing head pain. mental fog, pain full burping lasting hours.
Late 2015 my daughter read article on EBV. Asked to be tested,results were very high Doctor in charge didn't no what to make of numbers. Referral to communicable disease specialist was made. After review and appointment was put on trial medication for herpes patients.
Worked for 3 weeks till med ran out,asked if we could continue with med, no was answer it was a trial and sent me on my way lost.
By accident through my wife's business we were introduced to and energy healer. From first visit with remedy to back to work in three weeks. Was told could take up to two years for my system to heal. Past two years have been up and down with a variety of illness. Wrote it off to fact my entire system was weakened and I still healing.
My concerns is that we only put a band aid on the EBV, for I'm out of work again with no help from local Doctors, had to demand test for EBV when told was not necessary. Numbers mirror past results, condition and issues same with couple new twist. Have not been able to visit energy healer she unavailable till 09/06 for reading. I'm not sure at this point if she can fully contain this health problem.
Is their help for me at the Mayo Clinic I need to work I need to get off this human hamster wheel.
@nomadkazoo Hi Charlie. I totally get your frustration. I left a job I loved a year ago because I simply could not work. I basically had a relapse on a relapse. I have not gone to Mayo for the EBV. Maybe someone will chime in who has. I'd recommend becoming a part of a few EBV support groups. There are some on facebook. It's a great place to learn what has helped some people. Keep in mind EBV can affect different organs/systems so what works for one person may not work for you. You are your own best advocate. Unfortunately as you already know, conventional doctors either don't acknowledge it or don't know how to treat it. What antiviral med were you on? You may want to find a new doctor. I just told my nurse practitioner today that I have read that Valtrex can be helpful for some. She said she would look into it. Some have been helped by diet and supplements. it is a tough journey but hang in there!
Thank you for your reply and words of encouragement. We’ll see my energy healer and get back on remedy she created back in 2016. Will have to continue my research for a long-term Plan and hopefully treatment.
Liked by Marianne
Hi Charlie and everyone – My name is Ann. Have had this since one of my students bit me in 2007. It comes and goes but this time it has been here 5 months with the symptoms you all are also having. My spleen is swollen up again – ow! This time I am going to go to an ENT to see if something additional is going wrong down my throat. But I doubt it. I think my doctors are just baffled and will go along with the ENT to make sure EBV hasn't mutated into something else. Am going to try the regimen I saw on a post from a couple years ago with Di-Hist and D-ribose etc. Will ask for Valtrex. I am so very sorry you aren't working and understand how that impacts your world. I am still working but don't think it will last much longer. I work four 10's so get 3 days in a row off. I just don't want to be home because I did that before and spiraled downwards – I know all of you are familiar with that unfortunate side effect. Will check back here to see if someone is having success with a treatment so I can try it, too. Thank you for being here.
Liked by Jamie Olson, Marianne
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!
Liked by Jamie Olson, anncat
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