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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So you and your daughter continue to be sick after 6 years? This is devastating, drs keep telling us he should fully recover? My son works a full time job and sleeps after work then also sleeps or lays around most of the week-ends. He’s only 24!
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.
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I got mono when I was 19. Horribly sick for 3 months. It cleared up, didnt have a problem until my late 30’s. 7-8 yrs of Chronic Fatigue, following a depressive episode. After typical experience of many doctor visits with no diagnosis, and normal blood work I finally found a doctor that was able to treat me. The treatment was 2 months of amphotericin b in capsule form from a compounding pharmacy in tandem with 2 months of the candida diet. Did wonders, 2years now of feeling good, I had one , three week flair up a couple of months ago and returned to the strict version of candida diet, followed with oregano oil and olive leaf extract. Not 100percent but a lot better. Now, last 3 years I have been getting some episodes of vertigo, I have read that EBV flair ups can cause this, among other things. The good news is the last three years more doctors are aware of cfs and fibro, and more treatments are available. Stanford has a team working on this, they are treating it as a pathogen with anti viral/ anti inflammatory cocktails, similar to HIV approach. I think, personally, EBV, POX , HERPES 1 & 2 are responsible for these autoimmune diseases. If you keep your immune system in tip top shape and treat with anti virals I think there is hope. You need a doctor that is well versed in these ailments and new treatments, the others will have no answers.
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Thank you so much for your response. I have read a lot of success stories with extreme diet change and the herbs you mentioned. Also read a lot about adding raw apple cider vinegar as a way to kill this and neutralize ones system. Did you start feeling better pretty soon after you completed the 2 month treatment? How many years have you been feeling relatively normal?
@cummings3 is your son still sick ?
Yes, we just had to go withdraw him from college and bring him back home. Mayo clinic has denied seeing him twice, so now we are seeing a Neurologist and infectious disease doctor where we live. The fatigue is debilitating him at this point of his life at 18 yrs. old.
@cummings3, my son is 24 and works full time and lives in a different city. I keep feeling like if he lived at home I could cure him cuz I know he doesn’t try everything possible to cure himself. Have you tried the candida diet and the herb treatments? My son said no way he could be in college with this but he is able to do his desk job then come home and sleep. He is living half a life for now.
Yes, It’s horrible to watch your young son not being able to live a normal life with normal activities. We have been so frustrated trying to find answers and Doctors who just say “we don’t see patients with EBV”! We were just referred to the Simms Murphy Clinic in Memphis, TN…. along with another Infectious Disease Doctor who did not put that label on him and starting fresh with my son on testing and research. The Neurologist at the Simms Murphy Clinic brought my son in and immediately did some testing on his autonomic nervous system, because of all his chronic symptoms with headaches, extreme fatigue, stomach aches, lightheadedness and muscle weakness. After this test was done, she determined that the EBV has caused damage to his autonomic system which controls blood flow to the heart and brain. She has put him on midodrine 5mg 3x a day and Alpha Lipoic Acid 200mg 3x a day for 6 weeks and then he returns to evaluate. She’s treated other patients with the EBV and specializes in the Autonomic Nervous System being a main factor of issues with all of these symptoms due to the damage that the EBV causes. I will keep you informed on the outcome. My son just started the medication yesterday and has a follow up appointment on December 27th. We are praying that this helps him and reverses the damage done! His Infectious Disease Doctor is gathering all of his past tests and information, before he begins his study on my son, so that will be interesting to see what transpires there. They want to make sure that no other issue is being missed beside the EBV. I pray for you son and no how hard it is for them to not be at home with you when they are dealing with this illness.
Liked by John, Volunteer Mentor, Lisa Lucier
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.
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.
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Your story is very similar to mine except for the Lyme. I️ am make and 54 years old. I’ve suffered from EBV for about 20 years, but was diagnosed maybe 10 years ago. My other diagnoses included hypothyroidism, adrenal fatigue, chronic fatigue syndrome, low testosterone, and the list goes on. My doctor is wonderful. She is an internal medicine doctor who specializes in infectious diseases. She’s in Houston, Tx. After seeing her several years, she supported my going to Mayo Clinic in Rochester, MN. To say it was my last shred of hope would be an understatement. Mayo doctors saw me for almost three weeks running tests after test. Initially they explained that they don’t believe Epstein Barr Virus is a chronic illness. However, the doctors agreed the virus could be the cause for my poor health. So this team of doctors took me off five of my medications immediately. They retested my blood, and all my previous diagnoses were proven to be either incorrect or had improved. My official and only diagnosis is Idiopathic Hypersomnia, which was one of my previous diagnoses since 2013. Mayo docs didn’t bash my other doctor, but instead applauded her for thinking outside of the box in an attempt to find something that would help me. They explained that lab companies often sell doctors the idea that they have a test for this or that symptom and that doctors are hopeful when they use that test on their patients. I’m convinced that EBV invaded my body and caused damage to various organs but is no longer the issue. The biggest issue was all the medication prescribed. I’m now taking prescribed stimulants to help with my fatigue and extreme sleepiness and cholesterol medicine. That’s it! My health is better than it has been in years. My life was put on hold four years ago with failed treatments, early retirement because of the inability to work, and literally tens of thousands of dollars in bills mostly health related. I’m not saying your symptoms aren’t real or that your diagnoses aren’t correct, but my story is so much like yours that it could end in a similar way for you as it did for me. My Houston doctor’s name is Dr. Patricia Salvato if you’re interested. It’s also my recommendation that you visit Mayo Clinic in Rochester, MN. Start by contacting the internal medicine department and getting an appointment. Be prepared to be in Rochester for a few weeks. Lodging is affordable. There are tons of hotels with various prices, Airbnb places are everywhere, and campgrounds cater to Mayo patients. My wife helped me take out travel trailer from Texad to Rochester so we made a nice vacation out of the experience. Autumn Woods RV Campground was very nice. Please call Mayo. They made my life so much better, and they can for you as well. Please keep us updated.
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Thank you so much for replying to me. I will definitely seriously consider your advice and talk it over with my husband. It was very kind of you to care enough to share your story and I appreciate that so very much. My biggest issue is lack of funds but I have a strong faith in God and I know He will always provide. I hope you enjoyed your Thanksgiving. Warm Regards
Please bear with me as I have extreme cognitive difficulty. I’m not sure whose son is sick but I want to tell you how sorry I am for your pain as parents and that I really to understand. My daughter (now 32) became very ill at 15. I won’t go into everything because it’s not related to EBV but some of the health issues she had were devastating. She is still sick but is in denial. There is nothing I can do, she is a married mother now. I do understand how alone you feel. I just wanted to reach out and let you know that someone cared. At least my daughter’s health related issues were found within 2 years and dealt with. It is a suffering when you keep searching for an answer. I understand that from experience. I do hope that your son or sons get well soon and that you find a really good doctor to help you. I know an infectious disease doctor in Staten Island NY who I haven’t seen since 2009. His name is Dr. Ernest Visconti and he is elderly. He’s listed as a pediatric infectious disease MD but he treats adults as well and refers out. Dr. Visconti was very kind, patient and thorough with me. He’s a very intelligent man and he takes most insurance. If anyone wants his number, I’d be happy to provide it. The wait in his office is usually quite long and if you were to travel to see him, you would need to make it very clear to his staff that you need a long appointment. His daughter works for him. I don’t remember her name but I could easily find out. She would be the best person to speak with. I wish you all the best.
I hesitated going to Mayo for over a year because of the fear of how expensive it would be, but I put it in God’s hands and everything fell into place. Faith has so much to do with how we handle our illnesses and carry ourselves through the search for answers. Best of luck to you. Please feel free to ask me anything about my illness, life with my illness, experience with Mayo, or anything else that could help you in your journey for answers. Thank you for your Happy Thanksgiving wishes. I hope you didn’t do as we did and eat way too much! Prayers for you as we approach the crowds and stresses of the holiday! If you don’t post again, Merry Christmas!
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 supplements from Plexus Worldwide did you take and would you suggest for EBV sufferers? Did you go to the Mayo Clinic?
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