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Treatment for chronic Epstein-Barr virus (EBV)
Infectious Diseases | Last Active: Nov 26 9:26am | Replies (635)Comment receiving replies
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.
Replies to "Cummings3, Yes please keep us posted if this helps. One thing I have learned is it's..."
Hello, I wanted to follow up with you on my son's progress. As I discussed in November-my son was referred to a neurologist that specialized in the autonomic nervous system and she feels that the EBV has damaged the Autonomic Nervous System. This was after 2 years of extensive testing from Infectious Disease and Autoimmune. He was denied being seen by the Mayo Clinic and the Cleveland Clinic the past 6 months. She has put in on Alpha Lipoic Acid (Antioxidant to reverse damage) and Mestinon ( to control heart rate variability). We also started working with a well known Chiropractor that is working on his Parasympathetic system and vagus nerve. My son has shown a slight improvement after doing these treatments for 8 weeks now. He goes back for follow-up testing in February and she may want to start him on the Alpha Lipoic Acid IV therapy to absorb more into the system quicker. This is the first time that we have had any hope and I am praying that it continues to help him! I will keep you posted on upcoming results. Good luck to you- I know as a mother how frustrating this is!
Hello and thank you so much for your response. I will share this with the neurologist we are seeing in February. What treatment is the Chyropractor doing, I know they tend to do more therapy for symptoms?
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 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:
-- https://connect.mayoclinic.org/get-started-on-connect/
Janeen, if you are comfortable sharing, can you tell us what helps or what you've tried for treatment for EBV?
John
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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.