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 diagnosed with a new infection of EBV at the age of 61> I got sick in Aug. 2017. I'm so fatigued I can't live my life like I used to. I'm in pain all over
but try not to let it get me down. I don't tell people anymore because they don't understand what I am going through. I have been doing research too. Keep
trying to get help. Keep going to doctor's until you find one that will listen to you. I think I am experiencing the after effects of EBV, and that it was a new infection at my age it messed up my whole body. I follow the MM website, and do follow some of the protocols. I don't eat unhealthy foods. Hope someone can explain this weird virus to us. I'm trying Rhodiola, that I bought at Whole Foods. It promotes energy and resistance to stress. I also take magnesium at night and melatonin at night to help me sleep. Stay in touch. Thanks.
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What’s the MM websites, please?
Had new infection of EBV. Now have been diagnosed with chronic fatigue and fibromyalgia. Started aquatic therapy to get some strength back. Learning to live with this. It's all new to me. Good luck to all of you with a chronic illness.
Just diagnosed with reactivated EBV, quite frankly, I’m terrified. I’ve missed a lot of work since April, finally diagnosed June 1st but it seems to be irritating my boss even though I have Oregon Medical Leave Act (no money, just protection for my job which pays nothing when I’m home sick) and full support from my PCP. I’m 59, single and disability would pay $798 a month. I cannot envision a future that works. I’m thankful to find this forum, all advice welcomed!
I am 61 and have had Chronic Epstein Barr Virus for 7 years. I do go through long periods of time where I feel fine so try to keep positive. How long have you had your symptoms and since people experience many different symptoms… What are your main ones causing you to not be able to work?
My husband developed CAEBV about a year ago and we've been trying to get in to see an ID Doc for almost a year. I have a feeling its a waste of time though because we don't have the best and brightest in my town. there is very little information and research on this virus in the medical literature, unfortunately, BUT they are looking for candidates for studies. I'm discussing that possibility with my husband. in the meantime ANY helpful strategies to deal with this debilitating illness is greatly appreciated!
Hello- My son has been dealing with CAEBV for over 2 years and had to be medically withdrawn from his University this past fall, due to chronic illnesses and re-activation. He has gone to Infectious Disease and Immunology Doctor with no help. Our Internist referred him to a Neurologist that specialized only in the Autonomic Nervous System. After she performed a ANSAR test on him, she determined that the EBV has done significant damage to his Nervous System causing all of his horrible symptoms (Migraines, Chronic Fatigue, Chronic stomach aches, Blood pressure and Heart rate issues, Blood flow and clotting issues,dehydration,Insomnia, brain fog, etc) She has put him on Alpha Lipoic Acid (a natural supplement) that is slowly reversing the damage to his cells and healing his body. He is also on a few other meds to control some of the other symptoms while his body is repairing itself. He is slowly coming off of those, but will stay on the ALA long term. He goes for follow up testing every 6 weeks and the last two tests have shown significant improvement with his heart rate and BP issues… his migraines have almost dimensioned and his stomach issues are much better. His energy level has gotten better, but still is struggling with Insomnia at times. He has enrolled back in college for the fall.
Liked by justamom
Cummings3 – You have submitted so much great information thank you. I feel so bad for your son's struggles. I am going to ask my NMD about the Alpha Lipoic Acid. I am about to try an antibiotic viral – one that is used for shingles and other issues. I have heard they don't work for CAEBV but my NMD has had some luck with it in other patients. Has your son tried any anti virals? Also, what does ALA do to alleve the virus? Thank you.
Both of my sons were diagnosed with CEBV and CFS/ME. It permanently changed the paths of their lives. The sadness is beyond words. I'm thankful to have found this group that have been through the same life altering issues. One thing I would like to mention to each of you suffering from this debilitating illness is the possibility of Lyme Disease and co-infections. It mimics symptoms so closely that my son has gone undiagnosed properly for years. While he has been 100% positive for EBV with back to back recurrences along with other infections like many of you, he now is still dealing with the virus on top of Lyme and several co-infections. I now know why he was never improving. Instead, he has gotten far worse.
I'm mentioning this because it may help someone or save someone from further suffering if by chance they too, have more than EBV. The standard testing is highly inaccurate and it caused years of life to be lost. There is still a long road ahead. Igenex Lab finally was the far more accurate test and it has helped many people. The EBV and Bartonella were positive. Others were borderline and yet he had every symptom. If you look up Lyme Disease and find information showing that you may have symptoms, please refer to the ILADS website for detailed information and find a LLMD ( Lyme Literate Medical Doctor). Also, if you or your loved one tests negative per the most accurate lab testing and you need a doctor specializing in CFS/ME, there is a website entitled CFIDS that will also help you to find a doctor that actually understands CEBV and CFS/ME that WILL listen and help! These illnesses both can damage the organs and the autonomic nervous system as well. That is a fact. Joint pain, memory issues, sudden drops in blood pressure with a high pulse rate happen. Spleen, liver, pancreatic inflammation can occur. Seeking a physician trained in specifically these illnesses is your best bet! I've found infectious disease practitioners that do not at all understand either one if they have not been formally educated with CME in Lyme Disease or CFS/ME. There are pediatric and adult doctors that treat both and they are MD's. I hope this helps someone. Keep hope and know you are not alone and no one asks for nor deserves to suffer any of these illnesses. Both of my sons missed their highschool memories and so much more. Thank you to all who have shared such great information here. I've learned a great deal. Blessings and wishes for restored health and peace to all!
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Check the CFIDS website for information. Cures A to Z is also a great app that is a fantastic resource by a specialist. It offers treatment options and suggestions. Also visit the ILADS website to be sure it's only EBV and not Lyme Disease as well.
Liked by John, Volunteer Mentor
Please see my post. Hope it helps. You tube has excellent factual presentations by CFS/ME doctors including some from John's Hopkins. Southern Tier Lyme Support has also posted some excellent videos to educate about Lyme facts. EBV can be a co-infection.
Liked by Terri Martin, Volunteer Mentor
Thank you justamom for the excellent information. I am sorry your family has had to go through these struggles. I will visit those sites you posted, this week for sure! Have your 2 sons gotten better through the specialists you have found? If so, which symptoms have gotten better? Have they tried anti viral medication? I have just started taking Acylovir which is something prescribed for shingles but has worked on some CAEBV patients.
@justamom, you mention ME/CFS in your post above. You may also be interested in contributing to this discussion:
– Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/
This is a follow up on my CEBV condition. At 64 I believe I have had this illness for all of my adult life. It has only been in the past twelve months that the illness had progressed to a point that it was difficult to function. I had almost 20 UV treatments which seemed to help at first but then stopped helping with my fatigue. Back in April I thought I had my old self back but it didn't last long.
A new development over the past two months has been red irritated eyes. Two eye doctors I saw said my allergies were acting up. After several rounds of steroids both in eye drop form and pills the redness wasn't going away. My allergist thought that I possible might be having a reaction to some of the medicines I have been on and not due to environmental issues. I met with another eye doctor this week and after she reviewed my medical report she concluded that this was a direct result of the EBV. Finally an eye doctor who knew something about EBV. I did know that the virus has caused my blurry vision but hadn't heard anyone report about red eyes and some eye lid irritation. I'm now on Acyclovir the antiviral medicine and a eye drop perscription. The eye doctor believes this will clear up my eye issue.
Has anyone else had eye issues from EBV? I have read that others were also using the antiviral medicine. I'll report back the results next week.
Liked by Colleen Young, Connect Director
My initial symptoms were red, irritated eyes, plus hard sneezing from the chest, fatigue. That stopped and then the virus attacked all my joints. Horrible pain. Worse than my post-op spinal fusion 8 month before. An oxycontin would take 50% of the pain away….enough to shower, feed the animals, myself for four hours.
Michellebelle… I don't know if this will help but I too was getting red and very puffy eyes. Assuming allergic reactions, I found I had become allergic to Advil. Maybe because I was taking it so often for my inflammation that I became allergic? But I now take Aleve and red eye is gone. I also suddenly became allergic to cashews which caused the exact same eye redness and puffing. I too did UV Ozone treatments which didn't help but I am going to try them again.
Lisajensen, Thanks for your reply. Now that I am on Acyclovir pills and a Pazeo eye drop the redness has gone almost away completely. I love cashews and have been eating quite a few of them. I hope I don't have to give them up as well…
I am glad your eye issues are better! I just started taking Acylovir last Friday in hopes to calm down the virus. How long are you taking it? Mine is a week prescription 3 times a day.
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