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
Hi, all! I have been on a similar journey to you all for the last 8 or so years. I caught mono in high school, and not long after I went to college I became ill with the first of my chronic symptoms. It first started with swollen lymph nodes, migraines/sinus headaches, congestion/runny nose/sputum, constant low grade fever, raynauds syndrome, chronic fatigue then eventually progressed to sinusitis. I felt like my body was in constant over drive 24 hours a day. I tried every antibiotic and steroid I could and found no relief. I was also constantly getting sick with other visurses (strep, stomach virus, flu, pneumonia, etc) After seeing my immunologist/allergist he ran tests that showed my ebv levels were high, and explained to me that also discovered my T cells do not work properly. I was also told my I was also not allergic to anything but dust. He also ran ANA tests and they all came back negative. I then went on to see an infectious disease doctor. All of my tests came back fine. Next stop was an ENT. They performed surgery on my sinuses and that helped a bit, but later the infections came back. These symptoms have remained for the most part, but there have been new chronic symptoms that have been adding on top of the existing over the past few years. I also started to struggle with IBS, extreme migraines through out the week, and dry eyes. The dry eyes have gotten so bad since last year that my eye pain is constant. After seeing several eye specialists I have learned that the symptoms of dry eyes are the response to inflammation. I also now have 1 droopy eyelid. My neck (lymph node) pain has increased, low back pain, joint pain, constant dehydration, ulcers in my mouth, and low brain function/foggy thinking. I’m currently 27 and just retested for ebv. And yet again, it’s incredibly high. I’m starting to read the medical medium book and take it seriously because I feel like the virus is taking over my entire body. My next step is to find a naturopath that knows something of CAEBV as well. Will keep you all posted on the book and scouting out a naturopath.
Liked by candm, 1sickntired1
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.
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Hi! I have dry/red/itchy eyes. I believe it is related to EBV somehow. After seeing 4 specialists I have learned there is not many options to treat these kinds of issues, but that it is a sign of inflammation.
I forgot to add I’m hypsersensitive to heat and cold temperatures.
Also forgot to add I have had a rash on my legs for over two years (mainly on my shins and inner thigh). I have been told it is eczema/hives.
Lisajensen, My doctor wrote the Acylovir prescription for five pills a day for the next two weeks. After three days of being on this antiviral and on Pazeo eye drops my eyes are clear once again. I do have 'dry eye' so my eyes continue to be a bit itchy and watery but at least they aren't blood red and puffy. I'll let you know how I feel after being on Acylovir for two weeks.
Aubreeb, Ask your eye doctor about Pazeo eye drops. They seem to be helping me where steroid drops did nothing for my eyes.
Liked by aubreeb
Thank you! I definitely will. I agree, the steroid drops didn’t work and cause side effects from long term use. I also had plugs put in my tear ducts and I think that helped a little.
@aubreeb – Some of your symptoms may not be CAEBV?
Have you tried going gluten free? And have you tried allergy shots or drops? My husband had severe rashes and eczema, and was told gluten can cause it. He did NOT test positive for celiac disease, but did test positive for wheat allergies via a skin test. When he stopped eating wheat, the rashes totally healed. Also, both of us were having severe environmental allergies. We found a doctor who prescribed allergy drops and in about 3 months our allergies were basically gone. I have constant swollen glands too from the CAEBV. So far the only thing I have found to help that is Aleve, vitamin B12, and neck massages.
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!
My son has not tried any antivirals. The ALA reverses the cell damage that the EBV has caused. It is a slow process, but seems to be improving my sons symptoms over time. He does still struggle with the fatigue, but his Neurologist feels that this will improve over time as his adrenal glands start working properly. This virus completely dysfunctions your autonomic nervous system, which in turn causes so many horrific symptoms
@lisajensen hi! I have been on allergy shots for years and they seem to help with sinus infections. I only tested positive for a dust allergy. But I am very interested in trying the drops! I will ask him about this. I just recently (as of a couple of weeks ago) have gone gluten free and dairy free. I have started on a plant based/gluten free diet in hopes of eliminating at least some of my symptoms. Fingers crossed!
CEBV: I finished my two week perscription of Acylovir and Pazeo drops. My eyes cleared up for a while but then went back to their red/pink watery, itchy state. It seems that everything I tried works for a while but then stops working. I also was on a strong antibiotic that seemed to clear up my eyes for a few days but then stopped working.
Now my eye doctor has put me on a regiment Xiidra twice a day along with the Pazeo and another over the counter for red itchy eyes. I'll be on this for a long time as it is to help with my dry eye syndrome which is aggravated by the CEBV.
On another note I went back and reread Anthony Williams Thyroid Healing and am starting the strict food plan he suggests. I've always eaten healthy and avoid his list of foods to stay away from. Now I'm going to follow his juicing plan for the next 90 days and see if that makes an improvement. I would love to hear from others who have or continue to be on the juicing plan. Any improvements in how you feel?
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!
Our situation is so similar to yours that it’s unbelievable…I’ve been struggling for years (Lyme, co-infections, CAEBV). Now my 16 year old daughter is Hospital homebound from CAEBV diagnosed by ID at Nemours. (Also positive for Lyme and Bartonella) This is so devastating…our very happy life has come to a complete stop with no relief in sight.
The advice you give in your posts is 100% correct. We had to learn most of this the hard way also….many, many appointments and tests. These diseases are physically, emotionally and financially draining, not to mention painful. The pain is almost unbearable. The word fatigue does not accurately encompass the bone crushing exhaustion we feel. Just reading your posts has been so cathartic for me and I’m going to share with my daughter to give her hope and let her know we are not alone in this fight. Thank you from the bottom of my heart! I wish you and your sons health and happiness. Xo
Liked by Kanaaz Pereira, Connect Moderator
i GOT DIAGNOSED IN 2008 AND i AM 53 AND MY LIFE HAS NEVER BEEN THE SAME I AM DESPERATE FOR HELP
Xo Looking for answers daily
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 my daughter is 18 and she has Epstein Barr on and off acute it's called. She also has whip lash and mild scoliosis I have been taking her to get acupuncture and massage therapy helped some
I have found something that is helping her feel more energy and more alive and I want to share it with you both items are purchased from Amazon it's called natural cure labs Monolaurin 600mg and immune support with l lysine and 16 vitamins minerals and herbs. She has been on it for week now and she immediately feels a big difference. Please note she down not take any other vitamin or medicine too much vitamins are not good so she only takes these two and she feels so much better. My heart goes out to you and your son I hope this helps him please let me know if your results if you try these
Hi there- I purchased the monolaurin last year, but his neurologist has him on a few different meds right now to try and reverse the damage to his Autonomic Nervous System from the EBV…..So, I didn't want to mix this in at the time. When he starts coming off some of the other meds, we will definitely try the Monolaurin. I have read a lot about this and how it helps some people with the virus. Thanks so much for sharing and I wish your daughter well! It such frustrating illness for such a young age!
Liked by John, Volunteer Mentor
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